Dealing with Five Kids and Fibromyalgia

Why am I the only one worried about me?

2011-08-22T20:44:00.000-07:00

Hey, thanks for stopping by today to see what the latest drama is...
Today's story is one of desperation. I am desperately seeking answers to the questions: Why am I so anemic? Why am I losing blood in my stools? Why am I the only one worried about this?

Last week, my blood tests revealed a continuous drop in my Red Blood Cell Count, and my Hemotologist set me up with the first of two iron infusions, to try and kick start my system into producing more red blood cells.

My general doctor had me take a Guyack (Goo-Y-Ak) test which revealed hidden blood in my stools. My pharmacist told me that I needed to have a colonoscopy right away because that was a serious problem. My general doc is unable to get me in to the Yakima Gastroenterology Clinic until mid October OR LATER!! Obviously he does not think that it is that serious. I called back Virginia Mason and told them about the test results and my Gastroenterologist said that there was no immediate problem to be fixed and it was ok to wait until the END OF SEPTEMBER to get the colonoscopy. Obviously he does not think that it is serious either. Meanwhile, I am extremely fatigued, losing weight, bruising easily and worried about my dwindling red blood cells. I have also started to get a lot of pain in the middle of my abdomen, between my two ribs. The pain is getting increasingly worse as each day goes by. I have had similiar pain before, and it was my liver. I was hospitalized for almost 10 days the last time I had this excruciating pain. I may go to my doctor this week to get it checked out, it is bothering me so much. The thing is, I'm afraid to go and have them do nothing, but take more money out of my pocket. I'm the only one concerned with these issues and am beginning to feel like my doctors think I'm crazy. That is not a good feeling!

I don't know if my doctors really don't think there is a problem, even though my tests are presenting indicators of problems; OR if they are trying not to worry me, so they are downplaying the issues. Oh, no, now I'm sounding paranoid too! I guess I will just wait and see what happens. Tomorrow I go back to the Pain Clinic, and maybe they can check out the pain in my abdomen and schedule a steroid shot in the bursitis in my right hip and/or in my neck which is also causing a significant amount of pain when I sit or stand for more than 20 minutes in one position. Come back soon to see where this continuing drama leads me...

I know I'm anemic, I know why I'm anemic! What are the doctors going to do to fix it?

2011-08-17T12:13:00.000-07:00

Thanks for stopping by today to continue following my drama about Anemia. In High School, my best friend Kim, used to say that my life was like a soap opera because there was so much Drama, Drama, Drama! I can honestly say that it is still a Drama!

Today's drama begins with a 4:30 am wake-up-call from my dd who had a horrible stomache-ache. I gave her some Tylenol and had her take a warm bath to help soothe her achey tummy. It worked and off to bed she went!

I couldn't fall back asleep, so I started reading my emails and checking Facebook. I worked online until 6 and then got up and took a shower. DH also got up and showered, then we hollered Happy Anniversary to one another and out the door he went, to work. We are celebrating our 20th anniversary today! I couldn't do a thing without the help of the Lord and my dear Husband! He is so supportive of me especially since my quality of life has diminished so much over the past 6 years.

Yesterday I saw my Hemotologist and he said that my blood counts were still extremely low and my iron was also low. I told him that they had done a Gyack (pronounced GWY-AK)and they had found blood in my stools. He decided to order me 2 yes, TWO IRON INFUSIONS!! Finally, there is a glimmer of light at the end of my dreary tunnel! Today I was supposed to go back to the Northstar Lodge and get a 4 hour iron infusion! What a great anniversary gift! The gift of energy and less fatique! I am so excited! Unfortunately, I know my body and a usual 4 hour infustion will probably be a 6 hour infusion. I will know more, as the day progresses...

Last night, around 10 ish, my oldest son popped his head in our room and told us that he had put $20 in each of the two cars, so that we could put gas in them today. I got all showered, shampooed and shined up and went out to the van and couldn't find ANY MONEY ANYWHERE. I decided to take a risk, thinking that since the van is parked on a hill, it is possible that the gas has run out of the tank and it really wasn't as empty as it seemed. I was wrong! The van started lurching and chugging about 5 blocks away from our house. I am THANKING GOD that I made it into the gas station where I parked the van and searched again for the $20. I still couldn't find it. I tried to call my boys to ask them where the money was. They had their phones shut off. I tried to call DH and his phone was off. I called my mom and she came to the gas station to rescue me! Thanks mom!

I told the gas station owner that my car would be there until my dear son woke up and came to put gas in the van so we can drive it home. He laughed because we were at a gas station! I wish I had found it as amusing as he did. I still haven't been able to reach my son. He will get an earfull when I do get a hold of him!

So, I was about 30 minutes late for my infusion to begin with. I did call them and let them know I was late. So they got my IV in, in two tries! Hooray! Usually it takes 5 or 6 OR MORE! I got my pre-meds to help alleviate any allergic reactions and my iron started at 10:00 am. Now it is 11:57 am and they had to stop the iron and regive me all the premeds to help combat an allergic reaction that I was having from the iron. Now it's 12:00p.m. and they are restarting my iron infusion. I have already been here 3 1/2 hours for a 4 hour infusion and I still have at least 3 more hours barring anymore allergic reactions!

____________________________________________________________________________

May I digress a moment, thank you..............

Yesterday, as I said, I saw my Hemotologist who ordered some premeds for me to take last night and then night before my next infusion. When I went to the pharmacy to pick it up, the pharmacist asked me about my health and I told her about the Gyak test and the anemia. She said that I needed to get in for a colonoscopy immediately! So I called my primary care doctor (pcd) and asked them if they had scheduled me for a colonscopy in Yakima. They said that they couldn't get me in at the local clinic until close to November! I said, isn't it serious to be bleeding in your stools?
"Yes but they are booked and there is nothing we can do," said the nurse. So I called back Virginia Mason (VM) and retold my story about the Gyak test and iron infusion and begged them to get me in for a colonoscopy sooner than my September 30 appointment. My gastroenterologist is out of town for 2 weeks! Go figure! His nurse promised she would call my gastroenterologist or email him and see if I could be seen by another guy in his office sooner than the end of September. I am still waiting to hear about that! I am just apalled that you can have a serious problem and that the doctors still wait and wait to see you. I just don't understand. Who makes up these guidelines? Please keep me in your prayers! I need all the help I can get while these doctors hem and haw and put me off. I do not want to end up with a severe complication as a direct result of a bleed somewhere in my digestive tract!

So that ends part of today's little drama (so far). Please leave me a comment so that I know you stopped by! I love to hear from you guys! Have a wonderful day and I hope to c-ya again real soon!

A little more about my anemia...

2011-08-15T12:00:00.000-07:00

OK, this morning I called my doctor to get the test results from my stool culture. I definately have blood in my stool, so most likely that is where my blood is going and then coming out of my body. Now the receptionist told me that they would set up a colonoscopy at Yakima Gastroenterology. I told her that Virginia Mason was going to do a colonoscopy and an endoscopy and she put me on hold. Then she came back and said that the doctor thought I was going to do that at Virginia Mason, so he would have to make a referral to Yakima Gastroenterology. Does that make any sense to you? It doesn't make sense to me either. I said, "You just told me he was referring me to Yakima Gastroenterology." She said, well, he thought you were going back to Seattle and since you can't get into Seattle until October he will refer you here instead. I still don't understand. In the meantime I am waiting for a call to find out for sure what is going on. I am tempted to call back Virginia Mason and tell them my results and see if they can see me any sooner, but I don't want to complicate things any more than they are. Oh, then she told me that my doctor is out of town for two weeks. He is supposed to check his messages though...so I don't really know much more than I did yesterday, EXCEPT that I am definately losing blood in my stool. So the question remains...what is going to be done to fix it? Come back soon and see if I find out anymore information. Please leave me a comment so that I know you were here and sharing in my drama!

So tired of being sick and tired! More than just ANEMIA!

2011-08-14T20:03:00.000-07:00

I want to talk about anemia today, mostly because I am anemic. You become anemic when your blood count gets very low. You can be anemic from lack of iron, or if your kidneys are not producing enough eurethropointen. I am not sure what is causing my anemia. All I do know is that my blood cell count is getting lower by about 2 points every week. I went to see my Rhuemetologist about my Psoriatic arthritis and he looked at my most recent blood tests. He said that I had lost two pints of blood in two weeks! Where is it going? I have had a hysterectomy so I am not losing blood from my uterus. I am still wondering if I could have Chron's disease. I was supposed to have a colonoscopy and an endoscopy three weeks ago, but it was cancelled because I had that infection and needed to be at the hospital twice a day to receive antibiotics. My Gastroenterologist could not reschedule the procedure until the end of September! I called my general doctor and asked if he could get me in for the procedure do be done in Yakima, sooner. He ordered a test to see if I had any blood in my stools. That test is complete and I am supposed to call my doctor on Monday (tomorrow) to see what my results are. I suppose if the test does reveal blood in my stools, then he will definately schedule the procedure in Yakima, in the next few weeks. If it does not reveal any blood, I hope he still schedules the procedure because I could be losing blood in my tummy and the only way to find out is with the endoscopy. I just want to know why my blood count is so low, so that someone can fix it. Currently, my blood count isn't low enough to render a shot to boost my red blood cell count, or a blood transfusion. At my last blood test, I was .1 away from needing a blood transfusion. I see my Hemotologist again this Tuesday, and hopefully my levels have dropped that .1 and I will qualify for some help to boost up my blood cell count. My levels are so low, I am exhausted and I need to take a nap in the middle of the day to function "normally." I am so tired of feeling sick and tired! Thanks for letting me rant, yet again! Come back later and see what happens with my test results and doctors this week! Please leave me a comment and let me know you were here, it is so nice to know others have taken an interest in crazy medical issues! We need to stick together because others can not see our pain, let alone understand how it affects our lives. We may not look "sick" but we sure feel sick, and together we can help others understand what we are going through!

Do you know what nitrates are?

2011-08-14T19:26:00.000-07:00

A couple of weeks ago I received a call from my pharmacist who informed me that the Urelle medication, that I use has been found to cause an adverse reaction when used in combination with Trazadone and/or Savella. Of course I take both Trazadone and Savella so I had to stop taking the Urelle immediately. The Urelle has some sort of blue...ingredient that is also in Pyridium. Both the Urelle and Pyridium are used to kinda numb your bladder when you have a Urinary Tract Infection or Interstitial Cystitis (IC) (I have both right now). Not long after I stopped the Urelle I could feel a UTI coming on. My urine got cloudy and smelled awful, but it would be horrible one day and then not so cloudy the next day. I thought that the Urelle was a bladder antiseptic too, and since I wasn't taking it, I didn't have that antiseptic cleaning my bladder, and I was getting a bladder infection. Everyday my bladder hurt more and more. I finally called my urologist and was told that the Urelle was not preventing my bladder infections and the nurse thought that it was just my IC that was causing my bladder pain. Except my urine was cloudy and smelly which were signs of an infection. My urologist couldn't see me until the weekend was over. Once I get into a doctor and they try to culture what is causing the infection, it is another 3 day wait and I couldn't wait anymore! I called my family doctor and got in the next morning (last Thursday). My urine wasn't as cloudy or smelly that morning and I was afraid that it would show I didn't have an infection. My urine had lots and lots of NITRATES in it. The doctor explained that the NITRATES were the excretions of waste from the bacteria living in my bladder. I definately had a bacterial infection since I had the nitrates. By tomorrow they should know whether or not the antibiotic that they put me on is killing the bacteria or not. My bladder still hurts a lot, but that could just be from the infection irritating my bladder lining. I guess I will know more tomorrow. Check back later and see what I found out. Thanks for stopping by and have a great day! Please leave me a comment so that I know you were here! I love to hear from my followers!

Ariel's Undersea Adventure

2011-07-28T14:55:00.001-07:00

My favorite Disney princess is Ariel. I think it's because she is a merbabe and lives under the sea with all her friends. I absolutely love the ocean and try to take a trip there every year with my family. We love going to Cannon Beach, Oregon. I love rainy days too, because they remind me of Cannon Beach where it is often overcast and rainy during certain times of the year. This ride, Ariel's Undersea Adventure is new to California Adventureland and it was amazing, like all Disney rides! It was the first ride I went on and the last ride I went on during our trip this summer. I hope my meager video does it justice! Imagine the songs Under the Sea and Kiss the Girl, playing while you watch my video. Those songs were played during the ride and I only wish I had the aptitude to add personal music clips to my video creations. It will happen...eventually. Thanks for taking a minute to share in my Disney adventure today. Please leave me a comment and let me know what your favorite ride is at Disneyland.

Our Disney Adventure 2011

2011-07-28T14:47:00.000-07:00

We recently got back from a trip to Disneyland that was both business and pleasure. The pleasure was taking the trip with my family (except Nick, he had to stay home for summer school). The business was going to my first CTMH convention! It was amazing. I made new friends, and got lots of new ideas! Thanks for taking the time to share in my adventure by watching my video. Please leave me a comment and let me know you stopped by and what you think of my video and/or share your Disney adventure with me!

Make a Medical Binder!

2011-06-27T05:56:00.000-07:00

Hi! Thanks for stopping by today! You are a very important person who deserves the best medical care as possible. When you go to see a doctor, you are in charge, you have hired that doctor to consult you about your medical condition(s). Be an active participant with your medical team. A great way to make sure you are kept in the loop, is to create a medical binder. I suggest a 2-3" binder (you may not fill this up today, but as time goes on, you will need the extra room found in a larger binder).

To make a medical binder you will need:
A 2-3" binder (any color)
A clear trading card holder sheet (or 2)
A permanant marker
Divider sheets
A calendar
A hole punch
A paperclip
Lined Paper
A pen

Once you have all of the materials for your binder, then you can put it together! The first page of your binder should be the trading card sheet. Place a business card for every doctor you go to, in the pockets of this sheet. You may want to use another sheet to put appointment cards in, but that is up to you. The next thing in your binder will be the calendar. Punch holes in the calendar so that it will fit into your binder. Put your calendar behind the trading card sheet(s); use the paperclip to clip on the current month. This will make it easier to find your appointment schedule, or to update it as needed. Write down all of your upcoming appointments on this calendar. Put your dividers behind the calendar and add several sheets of paper behind each divider sheet. You will need to write the following labels on each divider sheet (one label per divider)...
Medicine and Drug Allergies
Surgeries
Doctors
Medical Test Results
Questions

Now the fun begins! Sit down when you have some time and start filling out the information behind each divider. Depending on you medical history this could take from a few minutes to several hours or even days! Be as thorough as possible. You can always go back and revise your information as you need to.

Depending on your medical condition(s) you may want to go and get current test results. Current, means within the past month or so. You can always go and request a copy of the medical report from doctors, or test results from x-rays, MRI's, blood work, ultrasounds, or any other medical procedure. You will need your driver's license or current ID to obtain your medical records and they usually do not charge you if you explain that you need the results to take them to the doctor for your next appointment. Call ahead and ask for medical records. Sometimes you can get the results immediately, and other times you may need to wait a couple of days. A quick phone call can save you time and gas!

Take your binder with you to every doctor appointment! They will appreciate all of the information you have at your fingertips! Be sure to update your binder after appointments and tests.

Thanks for stopping by and taking the time to read this post. Please leave me a comment, so that I know you were here! If you have any questions, post those too! I love to hear from my readers!

Have a great day and come back soon!

Total Knee Replacement

2011-06-24T01:09:00.000-07:00

This is a photo taken right after my total knee replacement.

This photo was taken one week after surgery! Dr. Clabeaux didn't even use stitches! My scar is healing great!

Hi, thanks for stopping by today! I wanted to share with you, a little bit about my total knee replacement. I had my right knee totally replaced on March 17, 2011 at Virginia Mason Hospital in Seattle, WA by Dr. Clabeaux. I adore Dr. Clabeaux and all the other specialists at Virginia Mason. I really feel like they see me as a person, not a patient, and they are working together to make my quality of life better. Check them out...
https://www.virginiamason.org/

Before I had my total knee replacement, Dr. Clabeaux had me take a class on total joint replacements and set me up with a website to research total knee replacements. He wanted to ensure that I had knowledge of the procedure and how it would affect me before I had the surgery.
https://www.virginiamason.org/service.cfn?id=4716

My surgery went well, but after surgery I began to have some problems. The past few surgeries I have had my blood pressure dropped. This surgery was not performed with general anesthetic, so I thought it might not drop, or at least not that much. I was wrong. First of all, let me explain what they did in leau of a general anesthetic. They first put in a pain catheter to help with the pain after surgery. They entered my leg from my groin and placed the catheter in the nerve above my knee. They put me under twilight sedation for that procedure and for the epidural spinal block they put in to help numb my lower extremeties for the surgery. I don't remember anything until I woke up, so the sedation in combination with the nerve blocks worked well! During recovery my blood pressure dropped and they admitted me to ICU instead of the orthopedic ward to recover.

I don't remember much of my first night. Somehow the next morning the nurse ended up pulling out my pain catheter. She was only supposed to turn it off! It was to be turned off so that I could regain some feeling back in my leg so that I could practice sitting up and standing and taking a few steps. My blood pressure was still extremely low, and so they would not give me additional pain medication because it would make it drop even further! That is when the trouble, or rather the PAIN, began! I remember extreme pain, and I had a difficult time rolling over on my own because it hurt so bad. I vaguely remember much after that except extreme pain, and not getting much relief because my bp was so low. The second day, I recieved a blood transfusion which helped my blood pressure a lot! They finally got my pain semi under control and I was moved to the orthopedic ward for my last night at the hospital. I was released Sunday, March 20, 2011. Since my surgery was done in Seattle, we had a 2 1/2 hour drive home. We had to make frequent stops so that I could stretch my leg, to prevent getting a blood clot.

I got home and settled onto the couch with my walker next to me. I had to use a wallker for about 3 weeks after surgery. I started phsical therapy my second day home from surgery. It was so nice to have someone come to my house! I had a rough time walking to the bathroom, and taking a shower exhausted me (I had a chair in the shower so I could sit down and shower, thanks Grandma for the loan). I remember elevating my leg for several weeks, actually I still elevate my leg if I overdo it. I also used ice pack after ice pack. If you are thinking about a total knee replacement, some things you will need post surgery are..

a walker
a cane
several ice packs
a chair for the shower
good friends/family to support you
extra pillows
you will also need antibiotics before any future dental procedures
you will need a note saying you have a total knee replacement before going
through metal detectors for the rest of your life

I worked hard and graduated from physical therapy 3 weeks after surgery! Then I earned the priveledge to use a cane! By my first post-op appointment I was walking without a cane and without any knee PAIN! Oh JOY! It was so wonderful to walk (slowly, but walking still)without my bones cracking and without pain! I was so happy I had the surgery, I can hardly wait until I can get my left knee done.

About 3 weeks after my first post-op appointment my right knee started to swell up and get warm. I was swollen from my knee, all the way down to my ankle, and it hurt to walk. I went to my GP and he did blood work and an ultrasound, which ruled out both infection and a blood clot. The pain appears to be more muscular rather than bone related. I have seen my surgeon twice about it. He has aspirated my knee twice and each culture did not grow any infection. So my leg appear to be fine. It hurts a lot when I first stand up, and then the pain subsides as I move around. I am just taking it easy, elevating it and using ice to help with the pain and swelling. My surgeon thinks it may be scar tissue. He will se me again in 3 more months and if I am still having the warmth and swelling he will send me for a second opinion. Team Medicine, that's what Virginia Mason is all about!

If you have had a total knee replacement, or are considering a total knee replacement, please leave me a comment. I would love to hear from you! Thanks for stopping by and come back soon, you never know what you might find!

Dealing with Chronic Pain

2011-06-24T00:05:00.000-07:00

OMG! I can't believe how long it has been since I have written on this blog! I am so, so sorry! Believe me, it is not because nothing has been going on! So much has happened since my last post which was around my last foot surgery, about a year ago!

I have had a total knee replacement (I will post about that soon), another hydrodystension of my bladder, a blood transfusion, 4 Remikade infusions and I have been diagnosed with Psoriatic Arthritis and I may have Chron's disease (I have an endoscopy and colonoscopy planned in July).

Most recently I have started taking chronic pain management classes. I was taking two classes and one has already ended. The second class is an ten week course and I just finished up week seven! We have been working through a book called, Cognitive Therapy for Chronic Pain" by Beverly E. Thorn.

We have been learning about the connections between pain and stress and how to change our thought patterns to help us alleviate stress and pain. The class is taught by two incredible women who also deal with chronic pain, so they completely understand what we are going through. We have kind of developed a familial relationship amongst the group which makes it easy to relate to one another. One of the first things we discussed was how other people perceive us as "normal" because we may look "normal" while inside we may be suffering terribly physically and/or emotionally. It is so nice to know that you are not alone! If you are reading this and you are also suffering, please leave me a comment. YOU ARE NOT ALONE EITHER!

Every class we fill out a chart, to show what our current pain and stress levels are. We use a 0-10 scale for each feeling. The pain scale is...

0 No pain, no limitations (None)
.5 Barely noticeable pain
1-2 Pain is there but is low in intensity and is manageable; no observable
limitation (Mild)
3 Functionally disabling resulting in more breaks being required; slowed
work rates, slow/altered movements, lean on nearby surfaces, increased
limp (Moderate)
4 Between 3 and 5
5 Needing to stop the activity you are currently performing; unable to
maintain current body position; very restricted movements (Strong)
6 More painful than 5 but not yet a 7
7 Tearful, needing to lie down, needing to take extra medications,
difficulty engaging in conversation (Severe)
8 Between 7 and 10
9 Between 7 and 10 with more intensity than 8
10+ Immediate emergency hospitilization, unable to speak, icapacitated,
worst imaginable pain (Maximal)

The stress scale is called the SUDS scale (subjective units of distress)
It is also a 0-10 scale with 0 Completely Relaxed and 10 Panic Attack

I created magnets with each pain scale 0-10 on them. I gave them to each member in our class so that they could take them home and teach the scale to their friends and family. It is a visual aid for others to "see" how we are feeling, so that they might understand our reactions to things that are happening around us. If you would like a set of these magnets, please leave me a comment and/or email me ssauve7@aol.com so that I can get your address privately to get them to you. Please come back soon, and I will share more of what I have learned about managing chronic pain. Have a wonderful day and thanks for stopping by! Shellie

I am becoming the BIONIC WOMAN!!

2011-03-26T19:18:00.000-07:00

WOW! I can't believe it has been a year since my last post! Believe me, it is not because I have not had anything to say, because I do! March 17, 2011 I had a total knee replacement on my right knee. I now have a man-made knee and I still have a plate in my big left toe. I am slowly becoming the BIONIC WOMAN! OR The SIX-MILLION DOLLAR WOMAN...in debt.

I have many medical conditions which have rendered it impossible for me to work. If you can't remember my torrid history, please refer back to the beginning of my blog in the archives. It took me 3 hours to complete it, and now is time to update....

In addition to my previous conditions, I have also been diagnosed with Psoriatic Arthritis and Chrone's Disease. I see commercials frequently about a lawsuit for people who used Accutane and have now been diagnosed with Chrone's disease and I will call them to see if I qualify. I took Accutane in the last couple years of High School, so I just might have a case. I can certainly use some money!

The Psoriatic Arthritis has three treatments (that I know of) and I have tried two of them. The two I have tried were self-given injections. The third in an infusion given over 2-4 hours every 6-8 weeks. The first injection treatment I tried I was allergic too. The second injection treatment didn't work at all, and I still had symptoms in my neck, low back and hips. My rheumatologist said that the self-injected medication was a standard dose, made for the "average American" who is 120 pounds! I don't know about you, but I am not 120 pounds! I am only a little fluffy! The Remikade infusion that I will start tomorrow is given based on your current weight and should work better.

I had not recieved an appointment time yet, so I called the doctor. The doctor told me that they had not recieved preauthorization from my insurance yet, so they could not schedule the infusion. Then I was told that each infusion is $10,000!!! I just about fell off the couch! I spent an hour and a half on the phone with my insurance company trying to figure out some of the many claims I have and it was confirmed that each infusion is $10,000!!! I have been blessed with Medicare (from my disability) which should pay for each infusion, or most of it anyway. I am just worried because my body does not tend to like infusions very well. The last time I had to have an iron infusion, it was supposed to be 2-3 hours, but it took 8 hours! I had trouble with the IV slipping out of my vein, and allergic reactions. I pray that tomorrow will go better! If you read this, please say a prayer for me as well. Thanks! I will let you know in a couple of days, whether or not it took the projected 4 hours or not.

Now, about my knee surgery.......I am only 41 years old and have been told for the past 6 years that I am too young for a knee replacement. For six years I have gone to different orthopedists who have given me cortisone and syn-visc injections, trying to help my knee last a little longer as the arthritis continued to build up under my kneecap. Finally, there was nothing more that could be done and one doctor finally decided to give me a new knee...of course this is not as easy as it sounds. I have been hospitalized with MRSA before, and have subsequently had a few other cases of MRSA. My orthopedist warned me that if I were to get an infection in my new knee, and the infection was MRSA, I could lose my entire leg. He sent me to a infectious disease specialist, and to two other orthopedists for their opinions about replacing my knee. I was tested and came clean --- no MRSA at this time! The other orthopedists agreed that a replacement was all they had left to offer me. So we set a date for the replacement. Everyday before the operation, my poor knee felt worse and worse and ached so much I could hardly wait to get rid of the old arthritic knee. The day finally came! I was the first patient of the day!

The anesthesiologists came in and explained they were going to give me a femural nerve block and then a spinal block and a sedative. If I woke up and was disturbed by the noise, then they would give me a general anesthesia by request, but they did this all the time and thought I would be fine with the two blocks. They were right! I woke up in recovery and felt no pain! It was awesome...until the blocks wore off.

Once the surgery was over, the fun began, although I am not so sure who it was fun for, it was definately not fun for me. My blood pressured dropped, and dropped and would not rise. They finally moved me to ICU where they could watch me more closely. As my blood pressure dropped, the blockages wore off. I felt dizzy, nauseated and the pain got worse and worse. They couldn't give me pain medication, because it was making my blood pressure drop even lower so I was miserable. Late the first night, the nurse came in and pulled out my femural nerve block!! She was only supposed to turn the drip off so I could begin to feel my leg again, so I could start physical therapy the next day. Somehow she was misinformed or misread the order and pulled it out completely, and it can not be put back in!!! I was really miserable. I lay in bed and cried and cried, I don't remember much of the day after surgery,except for misery and pain. The physical therapist came in and I could not even try to wiggle my toe it hurt so bad. My blood pressure was still low and they tried and tried to make me as comfortable as they could without killing me in the process. The next day I was feeling a little better, my blood pressure was rising, and they gave me a blood transfusion to help and rebuild up my own physical resources. I do remember sitting on the edge of the bed and even taking a coupld of steps. I was even stronger the next day and walked with a walker from my bed to the door and back. Later that night, they moved me from ICU and back onto the orthopedist floor! The next morning the occupational therapist helped me go to the bathroom, practice getting in a walk-in shower and practice walking up and down stairs, then I was released! I can't believe all that happened in such a short period of time! It has been a week since my surgery and I am now home and in the comfort of my own bed. My bandages are off and all that remains from my knee replacement surgery is swelling, a nice straight scar and pain. Come back soon and follow my progress in this and other areas of my life.

Salish Lodge, Snoqualamie Falls, WA

2010-03-20T13:47:00.001-07:00

DH and I decided to get away from it all, and went towards Seattle on Thursday Night so that we would be that much closer to my appointments on Friday. We were alone, no kids, no TV, just us...and the breathtaking view of Snoqualamie Falls from our destination Salish Lodge, where we stayed, alone, without any kids (or did I already say that?). We had a wonderful, marvelous, relaxing time. My only regret is that we could only stay one night. It is quite expensive, but well worth it (once in a blue moon). If you can't stay the night, at least park and walk over to see Snoqualamie Falls. It is gorgeous! Take a peek at our little vacation by watching my video...

Seattle Business and Pleasure

2010-03-20T10:17:00.000-07:00

Yesterday I finished out my week of appointments with two more...in Seattle. First stop, Lynwood Virginia Mason to see my orthopedist about my knee. He said it was too early to do more syn visc injections. I fell TWICE before my 10 o'clock appointment because my knee caught, even though I was wearing a brace on both knees. Thank GOD dh was there to catch me! So, doc gave me a cortisone shot and said if it isn't better in 2 weeks to call him back because if my knee is catching a part of it may have broken off. NICE! So now my knee is swollen and even more sore fron the shot. I just hope it works, otherwise I may end up uwing a cane and I don't want that. We had a good 3 hour break between appointments and went to the Seattle Waterfront for lunch. It was a beautiful sunny, warm afternoon! We ate at Red Robin by a window with a gorgeous view of the bay and the mountains! We tried their new burger that had mushrooms sauteed in horseradish, with onions and dijon mustard on an onion roll. It sounds awful, but you couldn't taste the horshradish, and the mustard was mild, it was pretty good actually. I would try it again. It did leave a warm sensation in your mouth though. Dh could only find a parking place 3 blocks away from the restaurant (and that was a handicapped spot). So we took it very slow going to the car (he had dropped me off while he parked so I didn't have to walk so far, what a guy). As we walked down the boardwalk, he asked me, "What was the name of that little shop we used to go to that had all those weird things in it?" "Ye old curiosity shop?" I asked. We looked around and it seemed to have vanished...until we saw a sign that said PIRATES PLUNDER IMPORTS in the same spot where Ye Old Curiosity Shop used to be. It was incredible! It was still on the waterfront, but it was in this little alcove along with a vidoe arcade, restaurant and carousel. When we entered the alcove, we were greeted by some old prospectors and a PIRATE! I thought I had died and went to HEAVEN! I love pirates (I'm sure that has nothing to do with Jack Sparrow) and I am a pirate princess after all. This shop had everything Pirate and much more! If you don't have the opportunity to go to Seattle, visit them at www.piratesplunder.com It is definately worth the trip! Now it was time to go back to Virginia Mason Downtown Seattle to see my gastroenterologist about my stomache. My Yakima doctor thought I might have a hernia. He discussed it with a surgeon in Yakima and they decided that if it was a hernia, that they wouldn't do anything about it because SOMEDAY IT MAY CAUSE ANOTHER HERNIA. I'm not worried about someday! I'm worried about today! It hurts to sit up, bend over and now it is starting to hurt when I eat. When I eat I get a sharp burning pain in my stomach and I feel nauseous. By the time I got into a room to be seen I was in tears, from the pain in my knee and stomach and I was worried that he would blow me off like everyone else. I have had pain before, but it used to be underneath my right ribs and I finally decided that it must be from the fibromyalgia. So I hadn't seen this gastro doc for a couple years. Now I have a new, different type of pain in a different location. He LISTENED to me. He SYMPATHISZED with me. He BRAINSTORMED a list of ideas. I LOVE THIS GUY! He said that it made sense that my iron, calcium and vitamin D were low because I had a gastric bypass and all three things are linked together! He also thought I may have an ulcer. He said that with one kidney he was very worried about me taking too much ibuprofen. FINALLY, my HERO! Someone who puts it all together! He ordered blood work, and said he would call my Yakima doc and discuss it with him, and discuss getting me on something other than Ibuprofen to save my kidney and liver! He started me on RX strength Prilosec and ordered an upper endoscopy to make sure I didn't have any ulcers! WOW! I knew I liked VM for a reason! These guys really look at the big picture! I am so relieved! I'm almost giddy! He also suggested that I see a rheumotologist about my arthritis, since me knees are deteriorating and my spine is deteriorating. I've shrunk one inch already! Scary! Why didn't someone else suggest that? So, I left with hope, of feeling a little better...I waited 6 weeks to see him and have to wait 4 more for the endoscopy, but I have hope that he will find an answer and help me! That's better than, go home, wait, come back in 6 months if the problem isn't any better! PRAISE THE LORD! I went back home, still in pain, but full of hope!

Pain

2010-03-19T02:53:00.000-07:00

OK, I have pain and a lot of it. Doctors seem to want us to choose on a scale from 0 to 10, exactly how bad our pain is. They usually have a little smiley chart to help you decide. I know this chart by heart. I have been to a 10 (the worst) and beyond a 10, but usually I am about a 6-8. It is hard to determine when each part of your body hurts worse at different times of the day.

I did get a tens unit from my physical therapist. A tens unit is a little machine about the size of an old fashioned walkman. You clip it onto your pants and then there are 2 leads that come out of it that you attach to your pain points. I was told that this is best for muscle pain, and you can adjust it several different ways and move the leads on your body to different parts of your body depending on where your pain is the worst. I have had it two weeks and have already gone through 2 batteries. It helps and I am using it a lot. The PT said that I couldn't use it too much, which is good 'cause I use it a lot!

I have also started physical therapy. THAT CAUSED MY EXHAUSTION, or so I believe. I have gone 4 times and now in the second week I can hardly get out of bed, I am so tired. I haven't even gone to scrap! OR want to watch a movie! These are two of my favorite activities and I'm too tired to do them! I don't like feeling like this!

For Valentine's Day, my mom bought me a book called Dealing with Pain or something like that. It was written by a local Yakimaniac, and surprisingly my first early education teacher I had at college! It was cool to be reading something that someone you know actually wrote! Unfortunately, it wasn't that great. The writing was clear, honest and you could tell that it was difficult for her to write. She offered several suggestions about dealing with PAIN, but most of them weren't practical for me. She did say that no matter what it takes, you should always try to go somewhere comfortably (she brought pillows with her everywhere). I agree with that one! I already did that though...

She recommended water therapy, massage, a jacuzzi tub, temperpedic foam mattresses, specialized and comfy chairs, and computer programs that would dictate your words as you spoke them. Well, I can't afford the computer program, weekly massages, special foam mattresses, specialty chairs or water walking. I have 5 kids! So that was not very helpful. Mind you, if I had the money, I would definitely try those, but it is clearly not in my current budget.

Then she talked a lot about meditation, keeping your mind sharp, and making sure that you have a special advocate (an angel) to be your spokesperson, especially when you have a bad week (like I'm having). I thought that I read that she had found out that pain affects our brains adversely, and can eventually make us lose memory and become quite forgetful. My sister argued that it was probably pain meds causing the memory loss, but I am pretty sure she said it was pain itself. I will do more research on this and get back to you. I did find that there is something called Fibro Fog which is when you start to lose memory from the Fibromyalgia. It was explained that the lack of sleep from insomnia caused this condition. Well, lack of sleep causes more pain too, so it's possible that there is a little truth to it all (pain meds, lack of sleep and pain itself).

In attempt to manage MY PAIN, I have started physical therapy, got a tens unit, and am taking Tramadol for pain in addition to Alleve and Extra Strength Tylenol. Come on! Isn't there just one thing that will help, rather than 4? Guess not! The research I have found states that although doctors are now diagnosing fibromyalgia, they don't know how to cure it, so they can only treat the symptoms. Great!

I will keep scouring the net for more info to share. Oh, I did find that capsacin helps a lot! Unfortunately it is made out of a pepper and although my aches went away temporarily, the pepper stayed in my system to the point I could not wear my contacts, they burned my eyes. If you do not wear contacts, try it out. There are several different types of fibro/arthritis pain relievers out with capsacin in them. Try different things until you figure out what works for you (and it may change from day to day). I will get back to you when I find out something new...until then, stay happy and healthy my friends....

Fibromyalgia and Me....

2010-03-19T02:41:00.000-07:00

OK, this must have been a bad Fibro week for me. I have just been totally exhausted, to the point I can hardly get out of bed. I have made it to 5 doctor appointments and I have two more tomorrow. Today I went back to my hematologist to see if I was still low in iron, because last week they didn't finish my entire iron infusion. He said that my count was up, so there was nothing he could do. He sent me home with the advice, "Try and eat healthier." That's a lot of help.

So I did some research on the Internet. I typed in WebMD and then typed in exhaustion and you know what came up? Fibromyalgia! I knew it made me feel like I had the flu and I knew it made me have insomnia (thus my blog at 2:45 a.m.), but I didn't know it caused exhaustion, probably because I am not thinking clearly which incidentally is called FIBRO FOG! Wow, learned something new today! It makes sense now that I think about it, not enough sleep makes you tired, BUT I have been in bed at 6pm all week! So I shouldn't be exhausted, except that it also causes sleep apnea, which makes you not get into the good, REM sleep your body needs. So, if you are exhausted it may just be your fibro. DH, bless his heart, took me to Salish Lodge near Snoqualamie Falls tonight, for rest and relaxation. No kids, no tv, just us, and the soothing roar of the waterfall outside our door. AHHH, I feel relaxed, but I still can't sleep! The doctor put me on Trazadone, to help me sleep, but unless I am laying still it doesn't make me go to sleep. I guess typing isn't still enough because I'm still awake. I have been diagnosed with sleep apnea before, and restless leg syndrome so it's hard to say which came first (those or the fibro). I thought I was over the apnea, but maybe I'm not. I need to go and do another sleep study to find out for sure. I'm waiting for my new doctor to schedule that (it's been 6 weeks and so far, he hasn't, I bet he forgot). If you are reading this in the middle of the night, turn off your computer and try to rest. It will do you wonders! So sweet dreams and sleep with the angels my friends....

March Madness

2010-03-08T23:58:00.000-08:00

March has already been filled with appointment after appointment and they are not ending up any better than February I am afraid.

Dentist: 1 appt. - I got a call the morning before my appointment to fix my last 6 fillings. The secretary informed me that I had already maxed out my dental coverage for the year. I needed to pay $980 the next day to get them fixed. I did not have that kind of money, so I decided to just get one fixed, Even though they all hurt. While in there, the dentist told me that my poor teeth had decayed even
more! Luckily he did not charge me to fix the other decay he found when fixing the one lowly tooth he fixed. Since there was more decay, the price of fixing the other teeth went up! I am hoping to get the rest fixed when our income tax comes in.

Iron Infusion: 1 appt. - this took another 7 hours for a 4 hour infusion! This time it was only 3 IV's, but I got another allergic reaction to the iron, despite more premeds. At 4 in the afternoon, my arm started to get hives, and the nurse said, that's it, you are done. Go home. I still had 2 hours to go on my infusion, but she said that I had already had too much counteracting meds and that we were going to stop. She didn't even consult a doctor first! Oh, and she was really mad at me because TWICE the IV came out, again! The first time I was in the bathroom and I went to go wash and my hand was already wet. I looked down and there was blood all over the floor. I felt so bad, because I left a blood trail from the bathroom to the nurses station and then back to my chair. The second time I was just sitting there and it slipped out. The IV machine started to beep (occlusion) and I tried to push the IV back in, but it didn't work. The nurse got mad at me again! She said, "What the hell is going on? IV's don't just fall out!" She looked at me accusingly, like I was pulling them out myself or something! I was so glad to get out of there! Besides, after the infusion I had to take my son's friend back to Seattle. What a long day that was! I didn't get back home until 11:30 that night!

Physical Therapy: 2 appointments - I got a tens unit which I love! Except that my second lead quit working and my PT left for vacation, so I've had a week without 4 leads. Two is better than none though. He gave me just a few exercises to do at home. Moving my neck side to side, up and down and shoulder to shoulder. Pelvic tilts to strengthen my lower back and gently bending my knees side to side and shrugging my shoulders up and down. Oh my gosh! I can't believe how much it hurt to do such little exercise! It was embarrassing to think how weak and sore my muscles were. He said that my nerves were super hypersensitive and now we are working on desensitizing them. He was gone all last week, so I start up again today. Hopefully I will have made a little progress.

Today starts another marathon of doctor appointments. This week I have physical therapy twice,a DMSO treatment once, and then to Seattle for my stomach and knees. Yesterday the girls started soccer practice. So I have something going on everyday! How exhausting! I spent most of Monday in bed, exhausted from our trip to Spokane Saturday and Sunday. I feel a little better today, but I haven't gotten out of bed yet. That's when the pain starts, when I get out of bed! Lately, I've been getting tired, just showering. I really hate that! You wouldn't think that would be difficult but it is. Everything I do takes so much more time now, and the rest of the world isn't slowing down for me, so it is very frustrating! Come back soon to see what else is happening in my world. Shellie

February Highlights

2010-03-03T08:20:00.000-08:00

Sorry I haven't posted in a while, I have been so busy! February was a crazy,busy month! I was at a doctor appointment for me and/or one of the kids 5 times a week, every week! I didn't get a lot done at home, or online, obviously. To make matters worse, I also didn't get a lot of answers. Here is a breakdown of the specialists...

Dentist: twice to fix 9 deteriorating teeth

Urologist: five times to begin DMSO treatments for interstitial cystitis. I had a bladder infection the second week of treatment and so I only got 2 of my six treatments in February. These treatments are weekly for six weeks. I have four more treatments in March (IF I don't get another infection)

Family Doctor: Two Visits. The first visit he said he thought I had a hernia and that he didn't think we should worry about it, until I got my foot fixed. Then he said, come back in 6 months for a physical, unless you think you need to come in sooner. I am so sick and tired of being in pain, and decided that if fixing the hernia would take away some pain, I should get it fixed, besides it hurts when I sit up or bend over. So I called him back and told him that I wanted to get it fixed. He referred me to a surgeon and I had an appointment to see him at the end of He month. Two weeks later I got a call from my doctor and he said that he had talked with surgeon about my "HERNIA" and together they decided that it was NOT a good idea to fix it because SOMEDAY it may develop into another hernia. I reminded him that because of it's location it hurt to sit or bend over. He apologized and admitted that he really couldn't help me. GREAT! Keep taking ibuprofen and extra strength Tylenol for pain he said. He also said that if it still bothered me in four months, then maybe I should go see the surgeon. He also said that if I exercised it MIGHT go away. How can I exercise when it hurts to walk and my knee catches and I'm dizzy and my back and neck hurt so. He didn't know. He suggested swimming or a stationary bike. I can't afford to go to the pool when I have to pay a $30 copay every day at the doctor! I also can't afford a stationary bike! So that wasn't very helpful either.

Surgeon: 1 visit: He did agree to see me, despite his conversation with my family doctor. My mom said she knew him very well so I asked her to come along thinking that maybe he would take pity on me and help me since he was a friend of my mom. Well, he appeared kinda ill (scratchy throat, not particularly friendly) and he didn't recognize my mom, so that plan backfired! He examined me and said that he couldn't definitely say if I had a hernia or not, so I should wait 3-4 months and see if the pain goes away. THEN he would send me for a CAT scan to find out exactly what it was. I told him that I was severely anemic and that they did not know the source of it. He said, then you'd better not take Ibuprofen (contradiction of family doc). He had no other recommendations other than to wait, wait, and wait some more.

Hematologist: 3 times: 1st visit was to check my blood for anemia. He said that my levels were a little low, but his computer wasn't working and he couldn't compare it with my previous tests to see how low. I told him I've been tired, dizzy, bruising easily and then asked him about calcium and vitamin infusions. I was told by another doctor that they could do infusions. Since my teeth are decaying and my darn toe keeps breaking I thought that a calcium infusion might boost up my levels and help promote bone growth. He said someone should be following my vitamin levels and then he said, I don't know if it should be me or your family doctor. DUH, he is the blood specialist, and I am in HIS OFFICE, so I guess it should be him. He ordered lots of blood work and then said he would see me back in a couple weeks to discuss them. I went to the vampires and they took 12 vials of blood! I was even more dizzy after that! When I went back, the doctor said that the results showed I was severely anemic, and had way too low of levels of calcium and Vitamin D. Then he said, you are way too young to have such low levels of calcium and vitamin D, if you don't take care of this you will have some real problems! (HA, if he only knew all of my problems, what else could go wrong? I don't even want to think about that) So he signed me up for iron infusions that would last 3 1/2 hours. RIGHT! Try 7 hours! When I went for my first infusion it did not go so well. I am hard to start an IV and so they have to do it in my hand which HURTS. The first IV was between my pinky and ring finger on my left hand. Shortly after the IV started my hand felt wet. I looked down and the IV had slipped out of my vein and iron and blood were all over my book. I rang the bell for assistance and they came running over to fix it. It would be 4 hours after the IV started before I would be done. A new nurse came over after several attempts, she finally got a new IV started in my right hand. It burns I said, so she said, it's just because of the location, here, use this hot pack. Several minutes later I was in so much pain I thought I would cry. I removed the hot pack and found a huge lump in my hand where the IV was. The IV slipped out of the vein and was going underneath my skin! I rang the bell again, and they removed that IV and put more hot packs on the area. Then another nurse came in to try for another start. She asked another nurse to try. By the time they were done it had taken 10 tries (throughout the day) to get one IV to work. It finally ended up in my left forearm. Before the iron infusion the premedicated me with prevacid and bendadryl in case of an allergic reaction. The infusion should have been 4 hours (not the originally quoted 3 1/2 because they used a different type of iron that is slower) and so the benadryl should have lasted 4 hours. Well with all of the IV problems I was there a lot longer than 4 hours! So later in the afternoon, I had an allergic reaction. So they stopped the IV, administered benadryl and prevacid, and then restared the IV. What a fun day! To think, I get to do it again in March! Woo Hoo!

Pain Specialist: 1 visit: This was ridiculous. He came in, and asked how my meds were doing. I said fine, I guess, I am still in pain and when I sit down the burning sensation in my neck is worse. Then I asked him about a tens unit. I said I know you want to do a spinal chord stimulator after my foot is fixed, but what about now? Wouldn't a tens unit work? He said that a tens unit was for muscles, not nerves and with my fibromyalgia it might help. He said let me set you up with a physical therapist and have them teach you about a tens unit and also do some deep ultrasound massage. Then he left to write the prescriptions and I didn't see him again. The visit was less than 5 minutes! The nurse brought me in the scripts and referral. Give me a break! That was not worth $30.

Phone call from Physical Therapist: Once: They called to set up my appointments. They said that the doctor recommended 2-3 visits a WEEK at $30 per visit according to my insurance. Then they said that a tens unit would be 20% out of pocket and that they usually cost around $800! I was in shock! I can't afford to buy all the vitamins I need, let alone go to PT 3 times a week for $90! I told them that I would go one time and see how it goes. That visit is in March, so we will see what happens. I definitely want to try the tens unit. So I may have to go a few times, just to get it. Come back soon, to find out what happens...

There you have it 14 doctor appointments for ME in February! The rest of the visits were for the kids. Asthma, athletes foot, shots...maintenance mostly, but also time consuming! I'm working on a year long scrapbook project called Project 12. Each month you do one layout that highlights that month. My theme for February is Doctor Appointments! Thanks for taking the time to read through this dramatic episode of my life. It is my goal to write more frequently next month. I have been putting off writing because it makes me depressed when I go back and realize all the crap that has taken place, but now I'm looking at is as a therapeutic and creative release, so maybe it will make me feel a little better rather than worse. Come back soon to find out how I'm doing. Have a super day! Shellie

Hernia - another pain!

2010-02-16T04:58:00.000-08:00

In between dentist appointments I went back for a follow up with my new family doctor. When we first met, I didn't like this guy at all. The second visit was much better, I think he was just overwhelmed with me the first visit. This time, he told me that I have a hernia and that he thought it would be best not to fix it, until I get my foot fixed first, BUT if I wanted to fix it, call him and he would set up an appointment.

The hernia is a little to the left of my right ribs, next to my stomach. It hurts when I sit down, or bend over. After a long weekend, in pain, I called him back and said I would like to get it fixed, if I can eliminate one pain, that would help a little, right?

I didn't hear back from my doctor's office for a week, so I called them and asked about the referral. They told me I had an appointment at the end of February. Ok, I can see the light at the end of the tunnel, whew! I was hoping to find relief by the end of April or May at the latest. I could hang in there a while longer, there was hope of fixing the pain!

Not so! Last Sunday I got a call from my doctor and he said he had talked with the surgeon and they decided that I did NOT need to fix the hernia. He said that if I wanted to discuss it further I would need to make an appointment! Give me a break! So I made an appointment Monday afternoon...

When I saw him he basically repeated what he had already said. He and the surgeon felt that if they went in to fix this hernia, it MAY, EVENTUALLY cause another hernia to develop out of the new holes they made to fix the first hernia. I tried to explain to the doctor that I was tired of being in pain, and I was looking for some relief. He said, sorry, I don't know how I can help you. We just don't think it would benefit you to have another surgery! I wish he could live a week or even a day with my pain, and then see what he thinks about pain! I am still furious! I feel abandoned and helpless. I have the pain in my teeth, this hernia, my low back keeps grinding when I turn or bend down, my knees are catching and popping, and my left foot is still hurting. Pain- head to toe! Literally! I don't know how much more I can take.

I think I will call my gastroenterologist at Virginia Mason tomorrow and see what he says. I would not be pleased to hear that he does not want to fix the hernia either, but I would feel better if I heard the same thing from more than one doctor.

Of course I'm also having interstitial cystitis problems, and started a 6 week treatment with DMSO last week. The first few days after a treatment are very painful, so I'm still in pain from that, and have my next treatment on Wednesday this week. I hope that I feel better soon...

My irritable bowel syndrome is acting up and I haven't gone poo in over 10 days. I told my doctor this, thinking that maybe part of my bowel was caught in the hernia, but he didn't seem concerned. He said that I should take Miralax and stool softeners as soon as I haven't gone in 3 days. Now my stomach hurts even more,from my belly button down! Between the IC, IBS and this hernia, my torso hurts all the time! I hope that today is pain free for you, or less painful than normal. I'm sure I am in enough pain for the both of us! Hang in there with me! This is going to be a bumpy ride!

So much for the new year being better...

2010-02-16T04:40:00.000-08:00

Sorry I haven't posted in a while. I've had several computer issues and health issues to boot. At the end of 2009 I started to have my teeth worked on, which literally left me in pain from head to toe. I was hoping and praying that the new year would be better. Of course, that didn't happen either.

I went back to my dentist about 4 weeks after I had those two teeth removed. My front teeth really hurt and so did my gums. I had, a little hard cone-like piece of bone coming out sideways from my gums toward my cheek, on each side of my mouth where my teeth had been removed. The dentist and his assistant and the nurse thought they were bone spurs and sent me back to the oral surgeon to have them removed. Then my dentist proceeded to tell me that my teeth were decaying at the rate of an 80 year old! He said that after I get those bones spurs removed, I need to make 3 appointments to fix my teeth.

When I went back to the oral surgeon, he said to me, "That is bullshit! You do not have bone spurs! That is just your new jawline. I refuse to fix the one on the right side, but I will file down the one on the left." I couldn't believe he said "bullshit" to me! I do not like this guy at all! We have a few oral surgeons in town, but the other ones have a 3 month waiting list, just for an evaluation! I was in way too much pain to wait 3 months, so I was stuck with this jerk! He did fix that bump, whatever it was, so that helped....a little.

The next week I went back to the dentist and he fixed 7 of my lower teeth. They had decayed and were all black along the gumline. Now they look normal! Whew! They are little sensitive, but they do not hurt constantly like before. The following week, I went back for my 2nd appointment at the dentist. This one wasn't a very good appointment...

The dentist came in and drilled the holes for the fillings, and then his assistant is supposed to fill them. Well, they couldn't find the assistant. I waited 15 minutes and then the other assistant started to put in a filling. Another assistant came in and took over. Then another assistant came in to do the next tooth, because the first assistant had to help another dentist. The whole time I was in the chair, these assistants were talking about favorite patients, and about getting their eyelashes done. It was very uncomfortable for me, especially when they saw a patient outside of my room and said, "Oh, noone had better get so and so, they are my favorite." So they hurried along to go and be the assistant to so and so.

I went home, and they had told me that several of the fillings were deep and I would probably have a lot of sensitivity in those teeth to hot and cold. The anesthetic wore off and my right back molar really hurt. I didn't want to be a baby, so I waited, thinking that it was just sensitivity. Two days later it really hurt so I went back in to the dentist. They forgot to fill my tooth! They proceeded to fill the tooth, without numbing it! Oh, my GOODNESS did that ever hurt! By the end of the day I was in tears from the pain. They did prescribe me a few vicodin to help with the pain, thank GOD! I postponed my 3rd appointment until March. I am not in any hurry to go back. The next visit they will do 7 more teeth! I think they will have fixed every tooth in my mouth by the time I'm through with this 3rd appointment!
Meanwhiles, my teeth still hurt! Head to toe pain, literally, not the way I want to spend my time - in pain!

Merry Christmas Eve (the year is almost over)

2009-12-24T07:04:00.000-08:00

Merry Christmas Eve to you!

If you follow my blog or are in some trading groups with me, you might have noticed that I haven't been online in about 10 days. I have been in a really dark place and am just now, finally, slowly, coming back into the light. My life has just gotten the better of me and it's just been really hard to deal with everything...

This is the latest and definitely not the greatest story of my soap opera like life (I say soap opera like because it is often predictable and almost always unbelievable). It's funny, back in high school, my best friend always told me that my life was a soap opera, but then it was more relationship issues, and not the hospital drama that has woven it's way into my story...

Let's see, a quick recap is that beginning November 2009 I had a hydro-cystodilation on my poor bladder to help with my interstitial cystitis, then I had a root canal, then a nerve resection, and then another root canal. During all of these procedures I was only given pain medication for 3 out of the 4 weeks of misery I was in. My urologist provided pain medicine for the first week, the pain clinic provided pain medicine and one refill for my nerve resection. My endodontist didn't provide me any pain medicine for my root canals. That's when the darkness started creeping over me, that in addition to insomnia sent me over the edge.

I would easily go 7-10 days without any sleep, and once the pain hit me, my mind just went crazy. I had heard that you could start to hallucinate if you didn't get enough sleep, and I had already spent 3 months without much sleep and I thought that hallucinating would just not happen, but I was wrong. One afternoon, dh said, "Who are you talking to?" "I was talking to..." I replied as I looked up and discovered that I was talking to no one, in particular, except the hallucination in my head! I had one of those weird experiences where you start to fall asleep, but you are still awake and aware of everything going on around you, add an imaginary conversation with a hallucination and you are CRAZY! This happened several times, the kids noticed, dh noticed and OMG, I went to help dh with inventory at his work and to my horror, one of his employees noticed! I was starting to freak out! I went back for a follow up at the pain clinic and was finally given some sleeping pills! THANK GOD for that! I finally got a night of sleep, and then the kids woke me up at 6 a.m. fighting and made me get up to referee! I never seem to catch a break!

It was time to go back to Seattle to check my nerve resection. We left early Monday morning, crossing a very snowy and icy pass to get their from our beloved Yakima. I arrived to find that we had come on the wrong day! No surprise there! This actually turned out to be a blessing in disguise because they did see me (it often helps to be an out of towner) and although the pass was not great, that night there was a HUGE snowstorm and we would not have been able to go on Tuesday, or if we had made it, we could have been stranded in Seattle for a day or two before being able to make it back home!

He took my cast off, to take off my stitches and discovered one 1/2" area in the middle of my 3" scar had not healed. He removed my stitches, and that HURT! It never hurts, and especially shouldn't hurt where the nerve was cut, right! WRONG! The stitches were like stuck and had to be pulled, and it hurt! Then my doc came in and was not happy to see that a part of it was oozing. He swabbed and cultured it, cleaned it up really well, bandaged it up, gave me a prescription for antibiotics and then had Lou put on another cast. I asked him about the pain on the other side of that foot, and he said, "Let's fix this infection and talk about that another time. I don't know how a bone can move when it has screws in it to hold it in place, but with you, I'm not surprised. I don't know how I'm going to fix that, you are a mystery to me. It is going to hurt because it is moving." Now I had an infection on one side of my foot and pain from my bone separating on the other side of my foot and the darkness crept a little higher.

This was 2 weeks after Thanksgiving, Christmas is coming. We have spent so much money on doctors, prescriptions and 5+ kids that we don't have much money to buy Christmas presents with. DH lets my youngest son bid online for a mini racing bike that he wants. He is outbid on 3 auctions (Thank God). My son is getting really upset because the one thing he wants seems impossible to get and he starts to get in a funky mood. He finds another bike to bid on and dh says, "Go ahead, try it again." Guess what? Predictable, remember...we are practically broke and of course he WINS the auction! Now we have to come up with $300 to pay for this auction! The darkness continues to creep higher!

The pain, frustration, overwhelming sense of failure and not being caught up on my sleep became too much for me. Christmas Break was coming up, and the next Saturday we were expecting almost 20 people to come for our traditional gingerbread making party. I just lost it. I had a good portion of my scrapbooking stuff upstairs because it was too hard to go downstairs because of my foot and knees. Now that I was starting to sleep, I was having really bad low back pain from my bed, and that combined with my awkward walk from countless foot surgeries and knee problems was causing severe back pain, bursitis AGAIN in my hip and NOW NUMBNESS down my right leg. There was no room upstairs for 20 people to make gingerbread houses with all of my scrapbooking stuff upstairs and the darkness overtook me! I lost it and I just started to bring all of my scrapbooking stuff downstairs, to make room for the gingerbread party and I was actually hoping that I would fall down the stairs, I was just too overwhelmed with everything. I did not fall down the stairs, and later that night the kids came home and my daughter helped me bring it all downstairs, she was a really big help. Now I had a huge mess downstairs and I couldn't find my projects that I was working on! I had several projects that I was working on for Christmas gifts for other people and now I couldn't find them! I was so overwhelmed by now I couldn't do anything! Oh, I forgot to mention that my washer quit working and my husband's truck was stuck in 4th gear too! So everything was falling apart! I usually do 8 loads of laundry a day and now I could only do 2, because my washer wouldn't drain properly, and so I'd switch it from setting to setting trying to empty it and spin the clothes, and it would take 2-3 hours to do one load! It was so frustrating! We called the repairman and he couldn't come until after the weekend, so we finally took the laundry to a laundromat and it cost $35, not to mention the time! The repairman finally came out and our pump was plugged! It took him 5 minutes to fix it, but those 5 minutes cost $80! Now our almost insignificant bank account was dwindling even more. Luckily my husband's truck was not that much of a problem, and by putting the truck in neutral he was able to get it out of gear.

I am so lucky to have a wonderful husband and some helpful kids, I must have taught them well, they got everything ready for gingerbread houses without too much help from me! I did do some shopping for materials, and I made some of the frosting and put it into Ziploc bags for the participants. One daughter hot glued 25 houses together and the other one helped make the frosting and put it into bags, and put all of the candy into bowls. Oh, I almost forgot that we also had a horrible case of strep throat to deal with the days prior to gingerbread house day. We got antibiotics and were better by gingerbread day, but before the antibiotics we had a very miserable little girl. The nurse said that my daughter had the worst case of strep throat she had seen in a year! The morning of gingerbread house making, I started to get some pain in my teeth...AGAIN!

By Monday (of this week), I was in a lot of pain from my teeth! I called my dentist and he was closed until January 4th! I called my endodontist who just gave me 2 root canals, and he said he could squeeze me in at 12:45 to check it out. I went there at 12:30 and he saw me at 2:00! Then, he said that my teeth needed to be pulled! I just spent almost $3000 for him, and now I need to pay someone else to take them out! I got an appointment for Wednesday morning, luckily!

That night I was also having a lot of pain in the incision site of my nerve resection. I called my surgeon. I'm in a cast, so there is no way to see my incision site, he chastised me for not taking my temperature. The only way to tell if I have an infection is if my temperature rises, so he said that I have to keep taking my temperature! I had stopped taking my temperature when I finished the antibiotics that he gave me for the infection. I guess I shouldn't have. Then he reminded me that he is not surprised that I am having pain, because my bone is moving on the right side and that the nerve resection may not have worked and could possibly make my pain worse on the left side of my foot! He continued to tell me that I should probably not be having oral surgery because of my recent foot surgeries, and said that I HAD TO HAVE ANTIBIOTICS prior to the surgery!

Tuesday morning I called the oral surgeon and asked for some antibiotics, they said that they could not give me any because they did not know my health history. I called my surgeon back and asked him to prescribe me some antibiotics. He never called me back, or call a prescription in for antibiotics.

Wednesday morning I went to the oral surgeon. I had not taken antibiotics prior to my appointment, so he refused to take my teeth out! I just started to cry! It was the last straw! He gave me some antibiotics and said that I HAD TO TAKE THEM 45 minutes before my next appointment. I told him that last Saturday I finished Zithromax which you take for 5 days and it lasts for 10 days and so I was still on antibiotics, but he did not accept that and said he could not do it. I went to the receptionist and by the GRACE OF GOD she was able to squeeze me in for 1:30 the same day. So I went home, waited, did some laundry (still not caught up), took my antibiotics at 12:45 and then went to the oral surgeon and got my 2 teeth pulled.

As I was writing the latest news on this blog I had a soft cheese tortilla and....

the stitches in the right side of my gums pulled out! Not surprised are you? Me either, upset, but not surprised. I called the oral surgeon and he said that I should be really careful, and try not to eat on that side since the stitches pulled out. No problem...except that the other tooth pulled out is on the left side! So now I can chew with my front teeth like a gerbil! GREAT!!! At least I have my front teeth!

Oh, I saw my pain doctor on Tuesday and he said that the numbness on the right leg SHOULD RESOLVE ITSELF in 2-3 weeks. Really? Probably not. Then he said that he still thinks that the spinal cord stimulator will really help with my foot pain, but he will not try a trial until my foot is completely healed and I'm done with foot surgery! I will soon be having my 11th surgery in 5 years! Will I ever be done? I don't think so, so basically I will have to continue to live with this pain, forever!

Oh, in between all of this, I went back to the urologist, and had an xray for the almost constant pain I'm having in my left (and only) kidney. The xray showed a 4mm calcification. So, I went back the next day for an IVP (intravenous dye and xray of the urinary system). Of course, I had an allergic reaction to the dye! The IVP showed that the calcification is on my spine, not in my kidney, so there is nothing the urologist can do, except wait a couple of months and see if the pain goes away on it's own! Not likely! So now I also have pain every time my kidney gets full, until I go to the bathroom! I still have to catheterize, which causes severe cramping in my bladder for 2 hours after I go to the bathroom. So I now have pain literally from my teeth to my big left toe and in between, for at least a couple of months until they do more tests and tell me that there is nothing that they can do, except wait a couple more months to see if it will resolve itself! Merry Christmas to me!

Merry Christmas Eve to you today, and thank you for reading all the way down to the bottom of this sad story. May God bless you and your family today and always. Merry Christmas tomorrow and have a Happy New Year too! 7 more days until 2010, and I will do my best to make the new year ZEN!

P.S. The darkness has lifted and I will soon finish finding all of my projects and finish them before next year (barring any other unexpected health issues). If you have been waiting on something from me, I am so sorry to have dropped the ball (and then lost it downstairs). I will get it finished before January! Even if I have to quit sleeping again to do it!

I honestly think that my brother's death and working to finish his video and then having nothing but trouble trying to burn it once it was done has really affected me. God bless my brother, who had a very difficult life, and then he was back on the road to greatness when he died so suddenly and unexpectedly. The years preceding his death were spent at the doctors for issues that he never discussed with us. He was unable to work and spent most of his time moving his stuff from one place to another, to keep himself busy. He hated Christmas because he was always broke and he didn't like to watch everyone opening up gifts when he couldn't afford to buy very much for his own 5 kids. Sadly, since he died, I feel like the failure in my family, especially now, when I've had this meltdown and I haven't gotten Christmas presents bought or made for my own family. I feel like my brother, spending days at the doctor's and getting no answers, and then coming home and moving my scrapbooking stuff from here to there and back again. That is depressing me even more.

It's 10:30 Christmas Eve morning and my niece's daughter will be here in 2 hours. I still have to cook dinner and try to make some gifts for my family. I haven't gotten anything done. Thank God for my family, my husband is at the store buying the food I need to make, my daughter will help with the cooking. My other daughter is wrapping up some presents and will help me clean. I really don't want Christmas to come, at all. I hurt so much physically and emotionally and I just don't have any Christmas spirit to share. I will get through it, with the support of my family, and trudge on towards a new and brighter day tomorrow. Thanks for your continued prayers and support, despite my shortcomings.

Have yourself a Merry Little Christmas

2009-12-23T00:15:00.001-08:00

Although I may not have been online, or talking to you lately, it does not mean that you have not been in my thoughts and prayers. Please take a minute and enjoy this holiday greeting from me, as I have enjoyed your friendship. May God continue to bless you and your family today and always. Holiday hugs, Shellie

Make a Smilebox scrapbook

Same Shit Different Day (SSDD)

2009-12-07T08:50:00.000-08:00

I could just scream! Once again I'm having problems getting pain medicine. This is just ridiculous. My general doctor doesn't want to prescribe it because he doesn't know me well enough, he wants the pain clinic to prescribe it. My orthopedist doesn't want to prescribe it because he lives 2 1/2 hours away and can't monitor it. I called in last week to get a refill and the pain clinic doctor that prescribed me some medicine only granted me one refill. Good Lord, I just had a nerve resection and now I can't bend or straighten my leg without excruciating pain and I've used my one refill and they won't give me any more?! What's up with that? I asked if I could get a shot in that sciatic nerve to help alleviate that pain, but no one can get a hold of my doc at the pain clinic to ask him to get me an appointment.

The problem is the nurses! I had a hydro-cysto dialation two Mondays before Thanksgiving. The doctor gave me some Vicodin pills. I've had a gastric bypass and my system doesn't hold onto pill forms very well, they are not absorbed correctly by my body and so they are not as effective as they could be. The week after surgery was spent going to Seattle and having other appointments, so I was unable to rest after that surgery and that kept aggravating my poor bladder. The Wednesday after that surgery I went to the pain clinic and discussed my pain medicine for the surgery. She said that she would write in the notes for the nurses to refill my pain medicine once and that then I would have to start tapering it off. We discussed that I would probably need pain medicine for up to four weeks after surgery, depending on how the surgery went. I took the prescription to the pharmacy and did NOT fill it because my surgery was still a week away.

I was out of some other medication and my mom went to pick it up for me. She picked up my pain medicine, earlier than I had hoped to get it...I did need it though. I was still having pain from the bladder surgery and so I took some of the pain medication-----I was thinking that if I called my urologist for more pain medicine, and my mom had just picked up pain medicine for me, then the pharmacy would get worried that I was getting too much pain medicine from different doctors all over town. I seem to always be having trouble with pain medicine since my original family doctor quit back in August.

So, the following week, I had my nerve resection. They put in the pain pump which didn't work and then it broke so I had to pull it out. I had been using my pain medicine for over a week and when I called the pain clinic for a refill the nurse really reprimanded me! She layed this huge guilt trip on me about how I shouldn't have used the pain medicine before the surgery and that she was really worried that I was abusing medicine. I tried to explain what I was thinking, how I was trying to prevent someone being worried about it by not calling every specialist I see for pain medicine, and only requesting it from the pain clinic. I also told her that I was not out of medicine, but that I would be by the weekend. She refilled the pain medicine ONLY BECAUSE IT SAID TO IN MY CHART and then she said that they would probably not refill it again, because I took it earlier than I was supposed to. It doesn't seem to matter how much pain I'm in and the fact that I can't bend or straighten my knee completely without excruciating pain! The nurse said she would try to get a hold of my provider and ask if I could get in for a shot in my sciatic nerve to help alleviate some of my pain. She called me back on Friday, and said that my doc did not come in on Friday, so she couldn't ask him about the shot and could not ask him about pain medicine. This was 4:00 last Friday night. 4:30 my crown fell off of my last molar on the left side. Within a half an hour my jaw was throbbing. I tried to call my endodontist (I already had an appointment on the 15th to fix this tooth, the timetable just got moved up!) and he didn't answer. So I was up all Friday night, in pain, despite the little pain medicine I still had.

Saturday my tooth still hurt and I was in a lot of pain in my leg, and my left kidney. My left kidney pain is becoming more frequent and constant. I have a history of kidney stones and I have lost my right kidney so if mt left kidney gets blocked I'm in big trouble! I didn't sleep Saturday night either.

By Sunday I was in so much pain, and I was exhausted from the pain and not sleeping. I had been out of pain medicine for over a day, and I was starting to get pins and needles feelings all over my body and I had the chills. My jaw was really hurting now. I did fall asleep for an hour out of sheer exhaustion. I was in the middle of scrap booking when I fell asleep and I was a little confused when I woke up, I thought it was Monday, but it had really only been a couple hours. I was up all Sunday night too.

Monday, and first call to the endodontist, then the pain clinic. I got an appointment for the endodontist today, and for the pain clinic on Wednesday. I still haven't heard if I can get a shot in my sciatic nerve or not. Maybe I will an have an answer by the end of the week. I dd get a nurse to finally say, if another specialist thought that I needed pain medicine, then to get it from them and call the pain clinic with the dosage that they gave me.

I went to the endodontist and got another root canal. My jaw is still throbbing. He asked me to call him if the anti inflammatory weren't working. They aren't helping, but I'm afraid to call him. I just don't want to hear that I can't have any help when I'm in pain.

The urologist decided to have me go through another series of pelvic floor exercises to help with the leakage problem rather than jumping into another bladder lift. Hey, I'll try anything. I am taking a medicine called Urelle to help calm my bladder from the interstitial cystitis and it turns my pee blue! So I know I'm leaking because my underwear is blue! I had an x-ray today for my left kidney and the x-ray was inconclusive. There is a suspicious spot in my left kidney, next to my spine, but they can't tell if it is a stone or not. So, I will wait until my urologist is back from vacation and can check the x-ray himself. If I get any other symptoms of kidney stones I should call them back. So I wait, and wait, and wait for my problems to either go away or get worse! How fun is that?

Then, last Friday, my other tooth that needs a root canal broke off! Exposing a crack in the tooth in front of it! My left jaw is just throbbing, it hurts so much! I have just suffered through a miserable weekend with tooth pain, jaw pain, kidney pain foot pain and sciatic pain with NO PAIN MEDICINE!

Creative Creations by ME!

2009-11-29T19:05:00.001-08:00

Here is a video I've compiled of my scrapbooking creations and cards. If you are looking for something to give that hard to buy for person, think about getting them something I've made. I can almost guarantee that they do not have something I've made...yet! Feel free to contact me if you see something you would like to get for yourself or someone else! Thanks for looking! Happy Holidays ssauve7@aol.com

Make a Smilebox slideshow

Not so happy of a Thanksgiving!

2009-11-26T20:28:00.000-08:00

I don't know why, but I haven't been able to sleep since my surgery, even though I have taken Benadryl, Nyquil and I even had a little liquor in my eggnog with Thanksgiving dinner. Don't worry, I didn't take all of these together, I waited at least 5 hours between my attempts. It's probably because my knee hurts so much. When I was in Seattle, awaiting surgery, I couldn't sleep the night before and started working on the dvd for the memorial to my brother. I've been working on it for a year and a half, and I keep having problems with the pictures, or the computer or the program. I was up again last night working on it and I thought I had it finally finished, and sent it to Facebook and my blogs. Then I tried to burn it to a disc, and I've run into problem after problem...again. I was planning on giving the dvd to my family members at Thanksgiving dinner, but I couldn't get the thing to burn on my computer! As a result we were late for dinner and that made everyone mad! They assumed we weren't coming. Imagine my dismay, when we arrived late, and then when I discussed my trouble with the dvd I found out that they had already seen it on facebook and then they reprimanded me about being late, and then they proceeded to tell me what was wrong with the one on Facebook. It made me feel awful. I sat down, to put my foot up and then was told that I should come to the table and put my foot up on a stool or something. Well, there wasn't anything high enough, so I ended up putting my foot up on my knee scooter. Earlier in the day I was having trouble with my pain pump. It was leaking and it was working a little too well, I was numb up to my butt. The anesthesiologist told me to stop the pump, but not take it out. We were hoping that it would help me get some feeling back in my leg. So, I was getting the feeling back in my leg and now my heel is starting to hurt. In order to sit at the table for dinner I had to twist onto my right hip (which still hurts from the bursitis) in order to not twist my already painful knee, and not put any pressure on the heel that was just operated on. It was quite uncomfortable and a few things were said that upset me even more. Not to mention that my ds cleared everyone's plates from the table, EXCEPT MINE. I shouldn't be surprised, she is usually upset since I can't help with the cleaning up and she does it all herself. It's not that I won't help out, it's just that under the circumstances it is a little difficult. Anyway I left, with the understanding that my dad was upset since I had posted on Facebook that I would be bringing the finished cd to dinner and I hadn't brought it. I tried to tell him that I would finish it when I got home and off my hip, but he reminded me that on Facebook I said it was done, and it really wasn't, so basically he called me a liar and he HATES liars. So, since I've gotten home, I've been working and working on this again. It's been 4 more hours and I am still having trouble burning it. It's over 25 minutes, and I have to keep recording it and trying to burn it over and over again. I'm beginning to think that maybe I shouldn't have taken on this task. Maybe my brother doesn't want me to finish it, I don't know. I just know that I'm very upset over the whole thing. Then, on top of it all, the stupid pain catheter broke off at the base of the pump! It was unfixable and so I had to pull the darn thing out completely. Now my heel is starting to hurt and my knee is killing me. The pain medicine I have isn't helping the knee at all, and I'm afraid I will be up all night, in pain, and that does not thrill me either! Boy this really sucks! Well, that's my story...oh, I forgot to mention that my family doesn't seem to hear anything I say, and so I have been having to do stuff myself since they are having selective hearing today. I was gone 2 days and we have no towels with which to dry off with, and someone peed all over the bath mats! GROSS! DH is very helpful, but he doesn't do laundry. The kids really need to help out more, but dh has been going in to work early in the mornings to do inventory, so I don't have his support while he is gone, and the kids are downstairs or asleep and unwilling to help. I probably cause my own problems, trying to keep the house in order when I'm not supposed to be doing anything but resting. Snap, life can be so difficult sometimes! I hope you had a better day than I did. Time to go and finish this video up. I'm determined to finish it today! Shellie out!

In loving memory of my brother, Steve

2009-11-26T17:38:00.000-08:00

Make a Smilebox slideshow

Thomas homes...

2009-11-26T12:15:00.001-08:00

Make a Smilebox slideshow

The latest, but not the greatest news...

2009-11-26T02:55:00.000-08:00

Sorry I haven't posted in a while. I got some pain medicine for my root canal which took over 2 hours! The medicine is finally helping me sleep! I am getting more than 2 hours a night now! Woo Hoo!

Since my last post I had a cysto-hydrodialation for my interstitial cystitis. That went OK, I'm still having a lot of pain in my bladder. Probably because I can't quit caffeine which is a big NO-NO when you have IC. I'm also supposed to eliminate chocolate, spicy foods, coffee, tea...and the list goes on. I have to cut out pop, which is my only vice. Unfortunately it is also hazardous to my health, so I have to do it. So I will...tomorrow...Oh, and I found out that my bladder fell again, and I need to have it lifted, AGAIN! My surgeon made it sound like they had a new way to do this though, so maybe it will last longer this time! I'll worry about that next year!

The day after my bladder surgery, I went to Seattle for a pre-op visit for my nerve resection, which was yesterday. My doctor took x-rays of my foot, finally (it had not been x-rayed since a week after surgery in August). Good news, my bone is healing! Bad news, I now have a condition called monkey toe! My entire bone has been slowly moving to the right. My bone has moved 17 degrees to the right. I will need another surgery to correct it, otherwise I won't be able to wear shoes because it has moved so much. That just sucks! I had the nerve resection so that it would hopefully eliminate the pain in my foot so I can finally wear shoes (I have been wearing slippers for 4 years now because the pressure of the shoe caused s much pain in my entrapped nerves)! This new surgery sounds like a bunionectomy, and we all know how well that went. Once my bone has healed enough, he will go in, cut a notch out of my bone and then break it and put another screw in to hold it straight! Sounds fun doesn't it? NOT! That is how this whole mess started, with a screw! I do trust this doctor completely, he has never done anything to harm me, or steer me wrong, so I have to trust him about this, but we will have a conversation about the screw, and see if there are other options. He put new screws in my toe in August, which seem OK (except for the fact that my entire bone is moving, but not disintegrating).

So, yesterday was my nerve resection. Good news, the nurse only needed 2 tries to get in my I.V. (my veins usually collapse). Bad news, the anesthesiologist put in my pain catheter before surgery while I was awake! That procedure wasn't too bad though, and I am SO GLAD to have that in. It has been 12 hours since surgery and my lower let is still numb! Unfortunately, my knee is killing me! I did not tear the cartilage in my knee as we thought, I just have more arthritis. The day before my nerve resection, my knee doc gave me a hypo-allergenic syn-visc injection under both kneecaps. I think that during surgery, my doc had to twist my leg to get to the outside of my left foot, and that, in combo with the injection in causing a lot of pain. Ice, pain meds and elevation don't seem to be helping, but since I can't put weight on my left foot, I have to use my scooter, which forces me to put weight on that knee and push with my right leg, which just adds to the pain in my knee. I could use crutches, but then it hurts my hip, back and underarms. I'll have to determine the lesser of the two evils and go with that. I also did not get a cast on my foot, like I originally thought I would. I only have an ace bandage on my foot, so that is nice. I still can't put weight on it, or get it wet, but it is so much lighter! So that's my story for today, Thanksgiving Day 2009! I am thankful to be alive and to be home for Thanksgiving! God bless you all for reading this blog and sharing in my journey! Happy Thanksgiving!

Falling Apart and Freaking OUT!

2009-11-10T05:15:00.000-08:00

A couple of weeks ago, I was eating a pretzel and I felt something hard in my mouth. My right back molar had started to break off! I couldn't believe it! As time went on, more and more of it broke off until now I've lost over 1/2 of the tooth! The past couple of years, my front teeth have been slowly getting worse, I am pretty sure it is a complication from my gastric bypass, since I do not absorbe calcium like I should (I've had tests done which confirm that I do not absorb it, and it just sits in my kidney until it turns into a stone. I had my upper teeth fixed about a year ago, but it cost me a fortune. I have so many doctor bills (I'm the six million dollar woman in debt) that I have to make payments on this account. I've maxed out my dental benefits already for the year, so I have to pay for everything out of pocket. My dentist refused to see me until I could pay off my bill over $500. Great! DH pulled through again and was able to borrow some money so that I could go to the dentist. The dentist took xrays of my teeth, which by now were throbbing and I was having pain up into my ear, so I knew it was infected! He looked at the xrays and then said, hey, I won't touch this, you will need at least 2 root canals and many of your canals have calcified, which means that it will take a lot of work. He gave me an antibiotic and a referral to the endodontist. I just got the endodontist paid off! Now 2 more root canals! Yikes! This is something that can't wait until next year! So I will see the endodontist tomorrow. I do like my endodontist, he is also about my age, and has good taste in music. My first root canal he loaned me his MP3 player so that I could listen to some music instead of the drilling. He is very thoughtful and understanding. Good bedside manner. I praise GOD that my specialists are all so kind. Now if I can just find a general doc with the same misdeamenor I'll be set.

That brings me to the freaking out. Last night I went to wash my face and switch my contacts to my glasses. I put my glasses on and I couldn't see out of my left eye, it was blurry. I washed, rewashed and rewashed the lenses to no avail. I thought maybe my lens had fallen out and was put in backwards (this has happened before) but dh said that he hadn't replaced the lens. I was so tired since I hadn't slept in over 50 hours that I did fall asleep (it was the Nyquil). I woke up this morning and went to switch the glasses back to contacts. Glasses off, I was still having trouble seeing out of my left eye. It almost looks like I have a film over the eye. That worries me. I put saline in my eye to wash it out. Then I go and get a new, clean left contact. I put it in and I still can't see. Everything is blurry in that eye. My eyes and heart are about the only organs working properly! I'm freaking out, what could this be? What caused it? Could it be a side effect of something? What's going on? I put an eye patch over my left eye to help with my perception, but I am still tripping and falling all over myself. 3 hours until I can call my optometrist! I'll say a prayer in the meantime. If you happen to read this, please say a prayer for me too. What is next?

My New Doctor

2009-11-10T04:45:00.000-08:00

I saw my new doctor a couple of weeks ago and I don't think I like him. He was about my age, had pretty blue eyes, but he wasn't very friendly, not a good bedside manner. I KNOW I have a pretty big health history, so I had spent 2 hours writing cliff notes for him. When we finally met, I explained that I had written this synopsis since I knew he wouldn't have time to read through my huge file. His response was, "I've seen bigger files than yours." I knew then, that we had a problem. He spent most of our time looking at his laptop and asking me questions about my meds and all that. I HAD WRITTEN IT ALL DOWN AND HE DIDN'T EVEN LOOK AT IT! That irritated me some more. Then he preceded to DELETE from my file, all of the previous antibiotics I had been on, because IT WAS WASTING SPACE! I have a ton of allergies to antibiotics and other meds and he DELETES what has worked before! Now I am really not sure about him. He did spend a good 45 minutes with me, but it was out of necessity, he had to do a pre-op physical for my upcoming nerve resection. I told him that my pain doctor had put me on a Catapres patch to help with the pins and needles feeling, but that originally I had one patch and it wasn't effective enough, so my pain doc suggested I try 2 patches. Fine, except that I only got 4. Now, instead of lasting me one month, it only lasts 2 weeks and I need a refill. My new physician says that he will make sure ALL of my meds are refilled until NEXT YEAR, and he wants to see me NEXT YEAR to possibly change some meds. He just wants me to have the nerve resection and hydrodialation and deal with that first. Oh, and then I told him I had insomnia, and I was concerned that not sleeping was effecting my overall health. He said, "That's not good, but let's deal with that next year." Who is he kidding? I only get 2 hours a night on a good night! I said, "I've been taking benadryl to try and help me sleep." He said, "That's a good idea, keep doing that." Another strike against him, he expects me to go 3 more months without sleep, is he crazy? The final straw was when he said, ok I'm ordering some blood tests for you and I'll see you back in January or February. He shook my hand and left. I didn't get a blood test slip, I didn't know where to get the blood test (my previous doc had vampires right in his office). I waited a few minutes and he never returned! So I slowly made my way out to the front and asked them if I could go, and where to get the blood test. They said that it was all ordered via computer and I should just go to the lab. Then they said that they would send me a postcard about another visit next year. Great! I'm not sure if I can keep this guy as my doc...

Remember earlier I said that I was going to run out of my patch 2 weeks early? Well, it was time for a new one on Thursday last week. I called the pharmacy and they got the refill order, but the directions had not changed, and I couldn't pick it up for a week! That meant, no patch, more pins and needle feelings and even LESS SLEEP! So I called my new doc and asked them to change the RX. I called Wednesday, Thursday and FRIDAY! No response. So I went the entire weekend and had another birthday/slumber party to deal with, without the patch! Praise God I made it through the weekend and I called the pharmacy 1st thing on Monday and talked with the head pharmacist. He was unaware of the misdirections on the label. He agreed to re fax the RX to my doc and I was going to follow through and call his office AGAIN!

By this time, Virginia Mason called and scheduled my nerve resection. They still had not received my pre-op physical from my new doc. I wasn't surprised! So I had to ask the new office to send that information and while I was at it, I asked if my new doc would be my pain manager after my surgery. Previously, since my foot doc is in Seattle, he always had my previous doc take care of my pain meds because he was local and could see me more frequently. No problem, until now. I can't even get this new guy to fix a local RX with a couple of finger strokes on the keyboard, let alone help me manage my pain! I now have 2 weeks to solve this problem!

The funny thing, is that people have asked me how I liked my new doc and I've gone over the above fiasco. They immediately say that's too bad and then they suggest this new doctor at this clinic by my house! So and so loves it there they say. Well I am not so and so, and that is the clinic I went to! It must be me. You'd think that a new doctor would take me on as constant repeat business! I don' think this guy sees me like that though. I don't think he really SEES me at all.

Pay It Forward

2009-10-30T07:40:00.000-07:00

Yesterday my friend Shannon, treated me to a wonderful afternoon of conversation and the new Michael Jackson movie, This Is It. I have to say, it was AMAZING! I did not know that he was planning a big Final Curtain Tour and had 50 sold out shows beginning in June or July 2009 (sorry, Stephen Colbert does politics, not entertainment news). This movie was the footage he had taped of his rehearsals for this tour. OMG, I have never seen male dancers as buff and cut as his dancers were! They looked like John Cena or Arnold Schwartzeneggar (in Terminator). They were fantastic! Usually dancers are skinny, with muscular definition, but these guys had huge biceps and the way they moved was unbelievable! I felt sorry for them, here they had this opportunity to go on tour with MICHAEL JACKSON and they were 2 weeks away from opening night when he died. So sad.

I've always admired MJ and the way he sang and danced, but when I saw this movie, I saw a passion, a real GIFT that I didn't realize he had. Despite his surgeries, (and the fact that every time I see him, I get this image of a cartoon made of him on South Park where he lost his nose), I never would have thought he was 50. He had very smooth, white skin and he still danced like when he made the Thriller album. His signature croons, his spirit fingers, and his famous crotch grab were in almost every song. Every person in this production had nothing but admiration for him.

His costume designers, who were making him a dazzling new lighted glove for the Beat It song. They said that this costume had so much BLING that the seamstresses had to wear sunglasses while they sewed, otherwise they were blinded by the light refraction! Technology today is so advanced, and with MJ's resources there was no end to the sets, videos and choreography in this production. This movie was well worth the $7 or so it cost. I would have had a yard sale to make $200 to buy a ticket to see it LIVE! You could feel the excitement of the performers, as we watched them on screen. It was awesome and inspirational!

He had this lady guitarist that was incredible! She was blonde and cute and she played electric guitar like Jimmy Hendrix! Michael also made mini movies to go along with his performance on stage. He redid Thriller in 3D and I couldn't believe the special effects! Towards the end of the song, this Ginormous black widow spider crept out on stage amidst smoke, curling and whisping across the stage. This spider got center stage and lifted up to reveal Michael, dressed as a zombie! Can you imagine?

He also dubbed himself into an old Humphrey Bolgart movie for Smooth Criminal. He had a new song about saving the earth and made this video about how we are destroying our planet and how we need to make a difference TODAY, and not wait for someone else to do it. That song, inspired me to write to you today. Several years ago, Haley Joe Osmet and many other stars made the movie Pay It Forward, being a self- professed movie critic, I give both of these movies 5 stars! Shannon, reminds me to pay it forward everyday with the kind things she does for me, my family and other people in her neighborhood. She is an inspiration to me. I try to pay it forward too, despite my shortcomings and health issues. If I can do nothing else, I am a good friend and listener to anyone who smiles in my direction. Every one of you has something special to offer the world and I just want to remind you to use your gifts for the greater good of mankind. They say that a butterfly can flap it's wings and cause a Tsunami on the other side of the world. This is a reminder, that the simplest act of kindness and generosity can effect so many others, and in this chaotic world we live in, we need to take a chance, overcome our fears and reach out to others in need. Some people don't realize what they may need, and if we take time and are perceptive, we can make a difference. Remember the golden rule, "Do Unto Others as You Would Have Them Do Unto You." I promise you that if you pay it forward, the rewards you receive will be insurmountable. I'm attaching a few of videos by Billy Gilman. He is an incredible young singer with a voice like no other. These videos are over 10 years old, but their messages transcend time. I hope you enjoy them as much as I do. Thanks for taking a minute to read my email, and please remember to pay it forward everyday!

God bless you real good. Hugs, Shellie

http://www.youtube.com/watch?v=KPouj2SrM4w One Voice Billy Gilman

http://www.youtube.com/watch?v=_bFoAN8ekgw What's Forever For Billy Gilman

http://www.youtube.com/watch?v=RtjeFlSzGv8 There's a Hero Billy Gilman

This is just cute! http://www.youtube.com/watch?v=ceaLH8WmZ2E The Snake Song Billy Gilman

Most of these songs are from his cd One Voice, I've had it for a long time, but my new friendship with YouTube reacquainted me with my ol' favorites. I hope they become some of your favorites too.

Check out my other blog:

http://clearlythemostcreativescrapbookers.blogspot.com/

The Tween Years

2009-10-30T03:53:00.000-07:00

My oh my, but kids today have so much DRAMA in their lives. I have 5 kids, who are all in the throes of puberty in one way or another. I have two drama queens, that just rotate their little drama scenes. One minute one is crying and as soon as she stops the other one starts. Everyday is something dramatic that is just ruining their lives. Usually it has something to do with us, parents, who expect them to do some chores and help out around the house. We are the worst parents in the world (according to them) because we yell at them if they don't help out. Yelling is NOT our first reaction, it is just the final straw! OMG, they think they have it so rough when we ask them to do one chore! It's getting infuriating. Last night one of them was just screaming and crying because she wouldn't help clean up the kitchen counter and she kept fighting with her sister. They fought and fought and we warned them to stop, and they kept on and on. Finally we told them to be quiet and sit down to write 10 nice things about one another. This just caused more chaos, and they would say that there was NOTHING nice about the other person, so we added more sentences because they would not STOP complaining and crying and screaming at us.
We asked one to quit crying and she said she WOULD NOT quit until the police came to take us away because we were so mean! That was it, I sat her down and read this poem, I received on the internet the other day, it was PERFECT in this situation...enjoy!

Poem to MOM

My son came home from school one day,
With a smirk upon his face.
He decided he was smart enough,
To put me in my place..

'Guess what I learned in Civics Two,
that's taught by Mr. Wright?
It's all about the laws today,
The 'Children's Bill of Rights.'

It says I need not clean my room,
Don't have to cut my hair
No one can tell me what to think,
Or speak, or what to wear.

I have freedom from religion,
And regardless what you say,
I don't have to bow my head,
And I sure don't have to pray.

I can wear earrings if I want,
And pierce my tongue & nose.
I can read & watch just what I like,
Get tattoos from head to toe.

And if you ever spank me,
I'll charge you with a crime.
I'll back up all my charges,
With the marks on my behind.

Don't you ever touch me,
My body's only for my use,
Not for your hugs and kisses,
that's just more child abuse.

Don't preach about your morals,
Like your Mama did to you.
That's nothing more than mind control,
And it's illegal too!

Mom, I have these children's rights,
So you can't influence me,
Or I'll call Children's Services Division,
Better known as C.S.D.'

Mom's Reply and Thoughts

Of course my first instinct was
To toss him out the door.
But the chance to teach him a lesson
Made me think a little more.

I mulled it over carefully,
I couldn't let this go.
A smile crept upon my face,
he's messing with a pro.

Next day I took him shopping
At the local Goodwill Store.
I told him, 'Pick out all you want,
there's shirts & pants galore..

I've called and checked with C.S.D ...
Who said they didn't care
If I bought you K-Mart shoes
Instead of those Nike Airs.

I've canceled that appointment
To take your driver's test.
The C..S.D. Is unconcerned
So I'll decide what's best. '

I said 'No time to stop and eat,
Or pick up stuff to munch.
And tomorrow you can start to learn
To make your own sack lunch.

Just save the raging appetite,
And wait till dinner time.
We're having liver and onions,
A favorite dish of mine.'

He asked 'Can I please rent a movie,
To watch on my VCR?'
'Sorry, but I sold your TV,
For new tires on my car.
I also rented out your room,
You'll take the couch instead.
The C .S.D.. Requires
Just a roof over your head.

Your clothing won't be trendy now,
I'll choose what we eat.
That allowance that you used to get,
Will buy me something neat.

I'm selling off your jet ski,
Dirt-bike & roller blades.
Check out the 'Parents Bill of Rights',
It's in effect today!

Hey hot shot, are you crying,
Why are you on your knees?
Are you asking God to help you out,
Instead of C.S.D..?'

MOM (Mean Old Mother)

Isn't that wonderful? Unfortunately, my dd who is brilliant, is incapable of understanding anything when she is hysterical. She just looked at me and said I don't get it! While the other daughter said, WOW, that was interesting. The one that got it, wrote her sentences quietly, while the other one just expressed how mean we were, and that she hated her life and wanted to be an only child. Then she said that the only way that could happen is if we killed all her brother and sisters! Luckily, in her delirious state she also said, then you would go to jail and no one could take care of me, so I guess that won't happen! Oh, snap, she was finally able to reason, while under duress! It was a miracle! My kids are very smart, sometimes too smart for their own good. It is so frustrating when she gets upset because she brings up everything and the kitchen sink and does not understand that her own behavior is causing the problem. She believes that there is nothing wrong with telling her parents NO! Well, we are determined to change that! It's been 8 hours since the incident and she still won't write her sentences. DH who was FURIOUS with her, said, "Hey, don't worry about it, remember the poem you read to her? She may think she has won this battle, but WE WILL WIN THIS WAR! Just wait until Halloween, she does not have to TRICK OR TREAT!" He's right! I am so glad that I'm not a single parent, and have support at home. The way I feel, I need all the support I can get, when dealing with the kids. I know that I would not be able to do anything without the constant love and support from GOD and my wonderful husband!

Soo, that's how my day ended, but this is how it began...

My son came home from school and said that he was freaking out because of something he said to his girl friend. She said all was good, but he felt bad and started freaking out (his words). I asked him if he needed a hug, and he did, so I scooted over in the bed and let him sit down. Then I gave him a hug and he started to cry.

Mind you, I have been ruing this day for several months. He fell in love, hard for this adorable girl. A year ago, his best friend and our brother from another mother, went out with her. It was a short relationship, they met online playing World of Warcraft. No big deal, they went to different schools and lived in separate towns and did not see each other much so they broke up. A few months later, my son started to bring her over, go to lunch with her and spend more time with her. I asked him if they were going out and he denied it,saying they were just friends. The months wore on and I noticed she was getting more flirtatious with him. A couple of months later he admitted that they were finally a couple. Woo Hoo! Touchdown, he was so happy, and I have seen him hurt by a couple of other girls and he was devastated by it. I prayed that the day when they broke up would not come, knowing that it would eventually. The strange thing is, that they still see each other. He takes her to school, out to lunch, does her math homework..."There are hearts breaking all over the world tonight because that man is 100% in love with her," (quote from Top Gun). She is supposedly seeing some new guy who is a friend of her cousin, but he lives in Seattle and she has only seen him once. How serious could this new relationship be? Something seems a little bit off.

Yesterday I posted the song Unanswered Prayers on my facebook page. I wrote a little blurb about how this song really helped me through a difficult time in my life. You pray and hope and wish for one outcome, only it never comes to pass. Growing older and wiser, you eventually realize the bigger picture and how that one outcome may have changed your life forever. I believe that we all have a path chosen for us and eventually we will get there, but because of free choice and all, it may take us our entire life to reach that final destination. I shared this video with my son, and I'm not sure if he took it to heart or not. I also told him my own experiences with the loss of someone you love. Many moons ago I was head over heels for this one guy, we went out for a long time and I knew we were soul mates, destined to be together, but we broke up and I was devastated. I was so angry, immature and hurt that the night we broke up I called this older guy who had a crush on me. I went out with him the next day. Dumb, dumb, dumb, I was trying to make myself feel better since I was rejected. This did not work. Wherever we went together it reminded me of my first love and it just upset me even more. We eventually broke up too, and I immersed myself in college and eventually met another guy. A few months later, my first love came back to me and I turned him down. To this day I don't know what I was thinking. I do know that now, I'm married to another man, not my FIRST love, but another love and my life is totally different then I ever expected it to be. I have 5 wonderful kids and a husband who supports me in whatever I do and encourages me through these trying times. I would not change a thing, if I had gotten back together with my first love I would not have had these children. It's weird, when I get really upset, sometimes I dream of my first love, there is a bond there, and there always will be. I still talk to him occasionally and exchange Christmas cards with his parents each year, but it is just cordial, keeping in touch, nothing more...but I digress, lost in reminiscion...

I tried to explain to my son that I knew he was destined for greatness and that this one event could change his life forever. It was up to him, which path to go on. I tried to reason with him, that if he quit seeing her, even though it would hurt him, it might make her appreciate and miss him, and maybe she would come back to him. I reminded him of the ol' saying, "If you love something set it free..." I don't know if he listened to me, or just heard me, but I did my best to comfort and console him. The video of unanswered prayers was done to the video game Final Fantasy, he is a huge gamer and plays World of Warcraft all the time. So, when I shared Garth Brooks video, it reminded him of some WOW videos. We spent the next hour amazed and laughing at some of the videos people had made. One was a WOW version of Abbot and Costello's Who's on First routine, it was hysterical. As time passed, his tears dried and I told him that the best thing he could do was to keep busy and hang out with his friends. When you are busy, you don't have time to dwell on your problems. He has a WOW tournament today, that will keep him busy, and he also has a DR appointment, so he will keep busy. Earlier this week he told me that he wanted to see the DR because he was feeling so depressed, so I made him an appointment. I thank GOD that my son and his friends feel comfortable enough with me, to share there most intimate concerns and feelings. We have a couple of his friends stay over at least 3-4 nights each week. The kids are messy, but they are here, where I can keep an eye on them, and they are comfortable here. I am also thankful that I'm not on pain medicine anymore, and can pay more attention to what is going on with the kids. My husband is the player, and takes the kids on outdoor adventures (I don't like the outdoors except at the beach), but I do the indoor adventures. We make a good team, him and I.

Thanks for reading this post, I hope it gave you a little hope and/or inspiration today. Please check back again, to continue with the total action drama at our very, very, very nice house! Shellie out....

New Doctor Today

2009-10-30T03:38:00.001-07:00

Good morning, I don't know where the week went. I have been off on which day of the week it was, all week. On Tuesday I thought it was Monday and on Thursday I thought it was Wednesday. It's frustrating because I thought that since I was off of pain medicine that my short term memory loss would go away, but it hasn't. I have also noticed that I suffer from SSDD syndrome (same s**t, different day). That wasn't too surprising though, considering what I'm going through.

This past week I am still having those restless feelings, and as the day wears on, it gets progressively worse. I am really NOT thrilled about seeing a new doctor, but I am looking forward to meeting him, and hearing his take on all of my problems. I found out that his office is only 3 blocks from my house! NICE! If I could walk, I would. It is so close! So we will talk about my medicines and then do a quick pre-op appointment for Virginia Mason. I need to remember to call VM and ask them to fax over the pre-op papers to fill out (hoping that by typing this reminder I will remember it).

My right knee is getting progressively worse. It hurts so much that by the end of the day all I can do is cry. Last night I had to go downstairs because I asked dd to get me some round tins and she came upstairs 5 different times, with 5 different tins - none of which were round and white. I needed this particular tin to make some Pokeballs. I have 2 friends who have requested Pokemon tins and I have made them before, to look like pokeballs and they turned out great! I need to finish them and mail them off, so I had to have the tins. Anyway, as I was coming back upstairs, I could hardly make it. It was soooo painful! It took me a long time and I felt so old. God bless my little dog Shadow, he paitently waits behind me (like my shadow)until I can make it upstairs. He's so sweet! Monday, my dr from VM called and said that the next time I come to Seattle, he would schedule and MRI of my knee. I am going to ask my new local doc to schedule it in town and then whichever appointment happens first I will go to. I'm hoping to save some time, but we will see what happens.

I'll post later what happens at the doctor today! God bless you for sharing this journey with me.

Medical History - Strange but True

2009-10-24T11:41:00.000-07:00

OK, I finally made an appointment to see my new doctor. I have to, for pre-op for my next 2 surgeries and I need to talk to him about my blood pressure. My pain specialist gave me a patch RX to wear, to help with my pins and needles feeling go away. Unfortunately, even on double the dose I still feel on edge and by the end of the day my legs twitch uncontrollably. The RX could drop my blood pressure and I'm already on blood pressure medicine, so I really have to watch it. So far, so good though, I haven't noticed that side effect. So, I thought I should go over my medical history, a synopsis, just to help him out. I really doubt he will take the time to read my 3" thick medical file before he sees me for 10 minutes next week.

So here it goes...

Surgeries:
Gastric bypass
Right Nephrectomy (kidney removal)
Bladder Sling
Hysterectomy
Lithotripsy (water blast kidney stones) (4 times)
Hydroplasia (bladder enlargement, to help with interstitial cystitis) (2 times)
Lateral Release left knee (cut in the muscle to release the kneecap from pulling)
Rhizotomy in right and left low back (burning of the nerves to alleviate pain)
Gall Bladder removal
Cyst removal left foot
Bunion Surgery and cyst removal left foot
Removal of hardware in left foot and placement of pins left foot
Removal of pins and placement of external fixator left foot
Removal of external fixator and placement of a plate left foot
Removal of seismoid bones, bone graft, removal of old plate an screws, addition of
new plate and screws left foot
Removal of old plate again to repair broken joint, addition of 2 screws and bone graft to help promote healing left foot

Upcoming: Nerve resection left foot
Hydroplasia
*possible spinal chord stimulator trial, after these surgeries if still having pain

Medical Issues:
Lots of allergies to RX drugs (Penicillan, Cephalexin, Rocefin, Sulpha, Amitryptaline, Tagaderm, Syn Visc, Nubain, Nalfon)
High Blood Pressure
Restless Leg Syndrome
Interstitial Cystitis
Fybromyalgia
Sleep Apnea and Diabetes (in remission since bypass Woo-Hoo)
Nueropathy
Asthma
Irritable Bowel Syndrome
Gastroparesis
Insomnia
Hypotonic Bladder
Anemia

Complications that have arisen from past surgeries...Take note! This could happen to you too! Beware! Get informed!

Gastroparesis - After my gall bladder slowed down to a halt and caused me excruciating pain for a while it was removed. I still have pain, up underneath my right ribs, sometimes it's unbearable. My gastroenterologist at Virginia Mason thinks that maybe I have some risidual sludge in my ducts that need to be cleaned out. With my surgical travesties he is not in any hurry to do this. After I start getting injections in my spine, this pain begins to go away, maybe it was just nerves. I don't know, but here is what happened after my gall bladder went KAPUT!

Several months after this surgery, I started to throw up several times a day. My food was not digesting and would come back out after I ate. It took 2 years and several tests and doctors later, before a young intern finally diagnosed me with gastroparesis. First my gall bladder, now my stomach, had quit working. The muscle was not contracting and couldn't push my food through to be digested. So the food just backed up in my stomach until it came out. They said I had 2 choices. They could fit me with a gastric pacemaker, to stimulate muscle contractions, OR I could get a gastric bypass to shrink the stomach so that the muscle was smaller and could contract easier. They did not want to do the pacemaker because it would affect x-ray's, MRI's and many other tests that I may need in my future. At this particular time I had diabetes, high blood pressure and several other problems. I was on 17 different prescriptons! We decided that the bypass would help with my other issues, so that was the better option. Simple, 3 days at the most in the hospital and then I'd be home, but recovery would be 6 weeks or more. I was teaching first grade and decided to get the surgery before Thanksgiving, so that I would be off through Christmas and back for the new year. Yeah, that didn't happen.

I went in for the surgery, and in the middle of the night some of my staples popped. I was in so much pain. They took me in for some tests and realized the problem immediately,and they rushed me back into surgery. I ended up in the Intensive Care unit for 17 days, in Seattle, away from my family. I missed Thanksgiving. My mom, bless her heart, stayed with me the entire time. It must have been hard on her too. I know this past year when my oldest daughter had to go to the hospital and get a catheter in for a week it was really hard on me! She was in so much pain, and there was nothing I could do. I had never felt so helpless in my life. I thought I was a pretty strong person, until that happened. Of course I was dealing with my own problems too, but still, it made me feel so awful! I don't ever want to see my kids suffer again. It's too painful.

Anyway, after the 17 days, and then a couple more weeks in general hospital population they sent me home, with 2 drains coming out of my stomach to help relieve the pressure in my stomach from the complications that arose from the staples that popped. I thank God that I don't remember that entire month. There are several days that are seared in my mind, I won't go into more details, but it was a very unpleasant experience. I did have a group of interns that were fantastic though. They tested me and treated me for a month, and nursed me back to life. They were so determined to get me well. I know that my mom sent them a couple of gift baskets and cards as a thank you. My recovery was way more than 6 weeks, but I'm alive, and very grateful to the providers at Virginia Mason, who worked together to fix me up. They truly deserve the award they recieved for being one of the top 5%best hospitals in our nation. Everyone there works together for the good of the patient, and they are not self serving or controlled by HMO garbage, or if they are, I have not seen that. I recommend Virgina Mason to anyone suffering from an ailment that is not improving. Please, take time for a second opinion, it's important for your own health and self-preservation.

Bladder sling - caused my bladder to be hypotensive. It quit contracting (notice any patterns - several organs slowing down to a halt). The bladder sling also changed the angle of my ureters that lead to my kidneys. After this surgery, I was completely unable to go to the bathroom (pee) on my own. After 9 weeks, they taught me how to catheterize myself. I still have to do this 3-4 times each day. When the surgery changed the angle of my ureters, I began having reflux back into my kidneys. The constant catheterization caused many urinary tract infections which quickly became kidney infections as the infected urine backed up into my kidneys. I was hospitalized 6 times the first year after my bladder sling. The constant pylonephritis (kidney infections) caused my right kidney to shrink and quit producing eurethropointen. This poor kidney hurt constantly, as it was repeatly refilled with urine. It HURT all the time! Eventually I was hospitalized for a liver problem and during this 10 day stay I missed my high school reunion and a cruise to Canada, and at the end of the stay they removed my poor little kidney. My back pain went away! Now I just have to worry about getting another kidney stone in my left kidney, if it is not taken care of immediately I could end up on dialysis.

Watch Out! Before you have a bladder sling, have a procedure called urodynamic testing. This is a very embarrasing and uncomfortable test (I had it twice, getting a second opinion on why I could no longer go pee without catheterizing), but it is also very informative. I was told that I should never have had a bladder sling put in without this test. The test would have revealed my hypotonic bladder and given pause, I may have reconsidered this surgery. Now I'm told that if I have the bladder sling reversed, I will not only begin to leak again, but my bladder still would not go back to normal. I will have to catheterize for the rest of my life now. I am finally able to void a little on my own, but my bladder doesn't empty completely without a catheter and now I have interstitial cystitis which is when your body quits producing the lining in your bladder (another pattern - no more production of fluids). Whenever my bladder starts to fill I get excruciating cramps in it and the urine just eats away at my bladder wall until I get it out of my body. This is another unbearably uncomfortable problem, but it is not connected with the hypotonic bladder, just another fun issue to deal with.

Bunionectomy - This has been really fun, one seeminly simple procedure has caused a miriad of problems from which have stemmed 6 more foot surgeries in attempt to fix the problem that arose from the first surgery. To begin with I had a cyst on my left foot. My local podiatrist injected it with cortisone, in attempt to shrink it. A week later, it hurt like crazy. He decided to remove it. So I had my first foot surgery on my left foot to remove a cyst. A few weeks after the surgery the cyst came back. It's located below my ankle, and when I wear shoes, it puts pressure on the cyst. So he looked at it again and decided to remove it a second time. I also had a bunion on my big left toe (I also have one on the right, but we aren't addressing that). We decided to remove the bunion at the same time he removed the cyst. So I went in, late December for this second surgery on my left foot. The plan was to have the surgery during Christmas break and then go back to work, teaching first grade early January. Unfortunately, I haven't been able to work since the second surgery...that was in 2005.

For some unknown reason, when the podiatrist removed the excess bone from my big left toe, straightened out the toe and held it in place with a screw, my body had a massive rejection. Several weeks after the bunionectomy my foot still hurt like crazy. The doctor said that some people have a rejection of the screw because it is a foreign body. So we scheduled a third foot surgery to remove the screw and hopefully eliminate my pain. What a surprise it was to wake up from surgery and find 3" pins sticking out of my foot! Turns out, that the screw was so foreign in my body that it actually disintigrated my bone! My toe lost about 1/2" of bone! When the bone disintigrated at the base of my big toe, there was nothing to hold that bone to the metatarsals below. So all of those bones broke too. So my podiatrist put the pins into my foot, to hold the bones together while they healed. A week after the surgery and for several weeks later, I would go to see my podiatrist, he would take an x-ray and he reassured me that my bones were healing. I kept telling him that my foot hurt even more, but he just reassured me even more that the x-rays showed everything to be normal. He never showed me the x-rays. This was after my bladder sling and while I was suffering from my bladder/kidney problems. I had started to go to a specialist at Virginia Mason in Seattle, WA about my bladder and kidneys. On the way to one of these appointments, I called to see if I could also see an orthopedist about my foot. Luckily I could. I went to see an orthopedist after my kidney specialist. He immediately took x-rays and showed them to me. Boy was I shocked to see that the pins had slipped through my bones and several of the bones had moved and were laying criss cross over each other in my poor foot. How could my podiatrist in Yakima tell me all looked good, when this was going on? I never went back to the podiatrist in Yakima. I pray that my orthopedist doesn't retire before he fixes me foot.

So I'm scheduled for my fourth foot surgery, to remove the pins. Then he packs bone graft in between the broken bones to promote healing and adds an external fixator to the outside of my foot. I have 2 huge screws sticking out of the right side of my left foot now. My toe has shrunk an inch! Twice a day, I'm supposed to turn this wrench that I attach to a screw on the external fixator. This should pull the bone apart ever so slightly, in hopes of relengthening my toe. New bone is supposed to fill in as the screw moves ever so slightly each day. Good theory, but I only regained 3.8mm of length by the time my new orthopedist determined that the new screws were irritating my foot too much since they too were a foregin body. So back to surgery I went again, but this time I actually left in a cast! He put a plate and several screws over my fragile toe bones to hold them together. These five surgeries kept me in a wheelchair for about 9 months. Then I slowly was able to try and walk...again. Not normally however. The two cyst surgeries left a lot of scar tissue below my ankle. Now I have some entrapped nerves on the left side of my foot, and a plate on the right side of my left foot. It is very difficult to walk and any pressure on those nerves sends shocking pain up through my toes. I am forced to wear slippers or nothing at all, to help relieve the pain from walking.
This causes problems with my knees (not new problems, just more active problems).

I'm told by 2 different doctors that I have arthritis in my knees and my body has quit producing the joint juice that prevents your kneecap from rubbing against the bones below it. They say I will need knee replacements, but I'm too young. One gives me a leg brace and says, quit using stairs for the rest of your life to save your knees. He hopes that the brace will prevent my knee from moving and allow it time to heal and hopefully start reproducing that vital fluid that prevents my knees from grinding. At one point I had this full leg brace, a cast on my left foot and an I.V. (midline) put into my arm so that I could give myself an I.V. at home to help me get rid of another kidney infection. I was beginning to be a mess. By the time I got my external fixator, I gave up on the full leg brace. I wasn't walking anyway. Eventually I went back to Virginia Mason and that doctor started giving me cortisone injections first, then later syn visc injections in my knees, hoping to stimulate the rebuilding of fluid around my knees. Spring 2009 I had an allergic reaction to the syn visc. My knees tripled in size and I could not walk, it hurt so much. I went to the local ER and they said that only an orthopedist could drain my knees and that one was not available for me. They advised me to go home and wait until the swelling went down on it's own. Yakima dr.s are SO SMART (NOT)! An allergic reaction like that does not go away on its own. Syn visc injections take a 3 week time frame. Same time, each week, you go in for a shot for three weeks. The following week we went back to Seattle for my scheduled injection. The doctor took one look at me and said I was having an allergic reaction and that we would not use syn visc anymore. He drained both knees and injected them with cortisone to help decrease the swelling. I felt much better after that, but now I wonder, how much longer can I use these poor knees without the syn visc. It actually decreased the grinding and swelling for a while. We'll deal with the knees a little more later. For now, they will just grind and swell like before, while I deal with my foot some more.

A year after my 5th left foot surgery, I was still having a lot of pain in that big toe joint and in those entrapped nerves on my left foot. My doctor said, he would not do anything until it had been at least a year post my last surgery. He did x-ray my foot one afternoon and found that the screws in my toe were loose and so the plate was moving, which is what was causing my pain. I also had a lot of pain below my big toe on the pad of my foot. So back for surgery number 6. This time to add more bone grafts, add a special formed plate to my bone, and new screws, and remove the seismoid bones below my big toe, to help alleviate the pain in the padding of my foot.

Of course, the entrapped nerves are still a problem and the new plate is non-flexible. It was specially formed to fit over the bone of the big left toe. Unfortunately, my big left toe was not "normal" since it shrunk 1" and the joint was not healing properly. So, as I healed and began to walk again, when I walked, the tip of my toe would bend just enough to hit this new plate causing more pain when walking. I've had shoes made with special soles to help me walk, I've bought expensive tennis shoes that did not have a seam where my big toe joint was, so I didn't have extra pressure on this area, yet I still could not wear them very often because the entrapped nerves were so painful. I'm sent to a pain specialist in Yakima(finally) to help me figure out how to get off of the pain medicine I've been on for almost 5 years now. It takes 8 months to get in! Once I'm in, I find out that I have arthritis in my back, fibromyalgia and a degenerative spinal disorder.I'm not even 40 and already I've shrunk one inch! This is getting ridiculous! After several x-rays, a nerve conduction study, an MRI, a consult with a Neurologist and a Psychiatrist I find out that I may be a candidate for a spinal chord stimulator trial. They would attach a battery pack and lead wires to nerves along my spine to send little impulses to my brain before pain signals can reach my brain. They think this may help my entrapped nerves. But it may not work either. With my history, I need to realize that it may not help at all. I'm told that I need to get off of or reduce the amount of pain medicine I'm on before we can consider this procdure anyway. No worries, not to wild about this one, especially since it is in my spine! I'm afraid it could paralyze me, and look for an alternative. In the meantime my arthritis of the spine is addressed and I have several medial branch blocks to try and lubricate the sheaths around my inflammed nerves along my spine. Eventually I have a rhizotomy on the left and right low back. This burns the nerves temporarily (about a year)so that the feelings they carried disappear. This was another very uncomfortable procedure, but it worked, and my low back pain is gone. Now if I could get the burning pain out of my neck and stop my arms and legs from going numb while I sit, stand or lie in certain positions I will be on my way to recovery! Right? Yeah, right!

That brings us up to my most recent foot surgery, number 8. My orthopedist had me do a bone scan of my left foot. It is supposed to "light up" any problems that I'm having as my bones are healing. The plate in my foot really hurts! The bone scan reveals that my big toe joint is disjoined once again...broken underneath this plate. So we go back for another surgery to remove the old plate, add more bone graft and put in 2 more screws to hold this joint together. It's been 9 weeks since that surgery. I'm finally walking again, but now my right knee has torn cartilidge in it and I have bursitis in my right hip making it very painful to stand or walk even short distances. I am off of pain medicine, but my pain specialist said he would rather have my orthopedist try and remove the entrapped nerves to stop the pain, rather than try and put a bandaid (temporary fix) on it with a spinal chord stimulator. The nerve resection does not sound fun and may not eliminate my pain, but I'd rather risk my foot than my spine. So, I'm waiting for the nerve resection to be scheduled. This time, my orthopedist will open my foot, find the entrapped nerves, follow the nerves up until they are healthy, go a little above the healthy nerve and cut out the entrapped part. Then he will drill holes into my bone and stuff the nerves into the holes so that they don't regrow back together and leave me with the same problem. Again, I won't be able to walk, but I hope it will resolve the pain of walking and wearing shoes. If not, I guess I can try the spinal chord stimulator, but that will be a way off. Besides, the worst is over, right?

Not sure about my right knee. My knee orthopedist will probably send me for an MRI to confirm that the cartilidge is torn. Then, he may try to remove the broken cartilidge, if I'm in too much pain, but he really doesn't want to leave me helpless and in a wheelchair. That's a nice sentiment, but my goal is to eliminate as much pain as I can. Without pain medicine I am living on Alleve or Advil and just waiting for my liver to fail again. If they can't fix what the problem is, I don't know that I can live with this pain, it is so painful to walk or bend that right knee...will these problems never end?

An interesting week....

2009-10-23T19:16:00.000-07:00

I hope this finds you happy and well. I'm still feeling like I'm on pins and needles. I went to the doctor on Tuesday to see my pain specialist. He told me some interesting things and I've learned a bit this past week...

I could suffer withdrawal symptoms for up to 4 months
I am coming off of two different medications which both blocked different receptors in my brain
ALL of my nerves are in end, giving me a pins and needles sensation in my arms and legs and other parts - it's driving me crazy!
I love to listen to 80's music! (actually I already knew that one)
I've torn the cartilage in my right knee
I have bursitis in my right hip
I will be scheduling a nerve resection on my left foot in about a week
I have a bladder extension surgery scheduled for mid November
My kids care more about each other than I thought
It's better to fix your problem, rather than just patch it up and go on to the next
(I already knew that too)

This past week was really busy too...

Monday - two dr. appointments in Seattle.

Tuesday - Brittney got a UTI and had to stay home so we went to my pain specialist and then to her pediatrician

Wednesday - I went back to the pain specialist for a shot in my hip and Amanda jumped off of some stairs at school and twisted her ankle, it is sprained pretty bad. I can hardly walk, but I tried my best to help her get in the house and to the bathroom. She fell, on me and pushed me back. My finger got smashed between her body and the door frame. It HURTS so bad! It's already bruised and swollen below my second knuckle and the bottom joint on my index finger. Not much I can do except ice it, it hurts typing!

Thursday - Codey got sick with a headache and a stomach ache and had to stay home.

Friday - my first day alone all week. I made 2 more Jacob's ladder books!

Now it's Saturday and I've spent the morning reorganizing my Snapfish photos. I have so many pictures to sort and then scrap. I have a lot ahead of me...

Sunday - Family coming over to celebrate Amanda, Brittney and Codey's birthdays, and then we will watch Bragging Rights Wrestling PPV! Go John Cena! He had better beat Randy Orton tomorrow!

Anyway, earlier I stated that the kids care more about each other than I thought they did. As siblings, they fight a LOT. Mostly it's my tweens. Nick pretty much keeps to himself. Setting a good example, if his brothers and sisters pay attention. Codey pits Amanda against Brittney or Brittney against Amanda. Casey picks on Codey and so on down the pecking order. The just pick, at the littlest things and it gets so irritating. For better or worse, most of the time I just ignore them and try to let them work their problems out together. Sometimes I need to intervene, and I do, but a lot of the time they act like they really would rather be ONLY children. The grass is always greener on the other side...or so they think...anyway, when Amanda hurt her ankle, everyone stepped up to help her out. They get things for her, help her get around, dote on her, especially her sister Brittney. It kinda upset me by Friday, because here I am with a cast on the left, a knee brace on the right, using a cane, and hugging the walls to get to and fro, and I can't even get these Rugrats to get me a glass of water, yet they are waiting on Amanda hand and foot! I'm sure I don't help my cause by getting up and working around the house a little, but I can't just sit around and watch the world go by either. I've always pushed myself. My mom says that I invite my own problems, and maybe I do, in some cases, but not all. Now that I am feeling a little stronger, I'm raring to go, mentally, now I just need my body to follow my mind AND my kids to mind what I say.

This morning I caught the rest of Live at Gothem, from Comedy Central, hosted by Bobby Lee. I fell asleep last night during the comedian performances (see, I'm starting to get a little better - but I wake up about 2 or 3 in the morning and stay awake for the day). This guy sounded like he was a part of our family. He was talking about how his wife was upset with him because he wasn't a strict disciplinarian. She always told the kids NO, and he always said YES. He reasoned that he was trying to groom the kids to be salesmen when they get older, so it wasn't good to take no for an answer! Funny but sad...then he went on to talk about how his oldest was getting ready for college. Everyone has been telling him to save for college. He shared that he hadn't even finished paying off his own student loans, let alone be ready to take on a new student loan! I had to laugh at that too, that's where we are! We paid off Scott's loans years ago! Me, I have my BA and MA still to pay for! Medical bills are killing us. Yesterday I got a bill and the doctor charged me $307 per knee to inject it with synvysc.! Then another $150 to drain each knee from the swelling! Come on! Procedures are so expensive. Every visit just nickle and dimes us to death! Not to mention the price of prescriptions too! Anyway, it felt good to wake up an laugh a little. Laughter is the best medicine!

The Button from Mark and Andy (Now with Scott!) - Video

2009-10-23T19:13:00.000-07:00

The Button from Mark and Andy (Now with Scott!) - Video

Another trip to Seattle

2009-10-20T07:18:00.000-07:00

Yesterday, I had 2 appointments in Seattle to see my orthopedists about my foot and my knee. We left early Monday morning, leaving behind 2 unhappy girls who wanted to get out of school and join us on our trip. I just survived a weekend of 2 birthday/slumber parties; we are broke and exhausted. We have taken them with us in the past, the girls, especially my youngest is very helpful when we go. She holds my hand and tries to comfort me while I get injections in my knees and feet. My husband is wonderful and supportive, but he hates hospitals. He hates doctors. He does love me though and will take me to Seattle, just for a change of scenery. My doctors are at Virginia Mason Hospital. I have been to the UW Hospital and the Swedish Hospital in Seattle, but I prefer Virginia Mason (sorry UW - my favorite University- we are HUGE Husky fans and bleed purple blood in my family). They had a huge banner when I walked into the pavilion that read "Top 5% in the nation, for healthcare." TRUE! Every specialist I have seen, has been up, on the latest treatments, and they all work together, to find you the best treatment for your ailments. Their only downfall, is that they are in Seattle, 2 1/2 hours away AND you have to pay to park! I think that is the most ridiculous thing ever, pay to go and park to see a doctor! Come on! Things are so expensive already, can't they recoup that cost somewhere else? When we went yesterday, the doctor was behind schedule, we were there from 11:15 to 2:00. I absolutely love the staff, they know me so well since I've been going there so long, they did give us an all day pass for free parking! That helps, even a little. I saw my doctor for about 15 minutes. He felt my foot and said, let's put you in a walking cast, I'll see you in 4 weeks. I talked to him, briefly about the entrapped nerves in my left foot. I want him to remove the entrapped nerves, but he does not really want to. It's a tedious surgery that requires him to open my foot, find the entrapped nerves, follow the nerves to point where they are not so aggravated and sever them. Then he takes the severed nerve, drills a hole in my bone and stuffs the nerve in the bone, so it won't regrow together. Sounds like fun huh? He is very skeptical about doing this, mostly because it may not fix my problem - pain. The entrapped nerves are from a cyst I had several years ago...

In 2003 I started getting problems with my feet. It started with Plantar's Faciatis. This causes the tendon on the bottom of your foot to shrink. When you go to walk, it is excruciatingly painful. Every step causes extreme pain in your heel as you walk. I had shots in my heel, and spent lots of time soaking my feet in ice water to numb the pain. I took a trip to Disneyworld at this time and it was very memorable, especially since the pain was seared into me during the trip. The more you walk, the better this condition gets, but whenever you quit walking, the first few steps are just excruciating! You can imagine my trip, long lines, humidity and torrential rain. We would start to walk and just as the pain started to subside we would have to stop, and wait in line, or RUN to get out of the rain. I new there were hurricanes in Florida, I knew it was hot in Floriday, but I didn't know how humid it was, or that they had torrential rainstorms that last 40 days and nights according to the concierge in our hotel. Anyway, that was spring 2003. In the Fall of 2004, I got this cyst on the left side of my left foot, just a little below my ankle. My local podiatrist injected it with cortisone, trying to shrink it. A week after he injected it, it hurt like crazy. So I went back, hardly able to walk, let alone put a shoe on, and he decided to remove it. So I had a surgery to remove the cyst. Unfortunately, a month after the surgery, the cyst came back! It was so painful, I had to go back to the podiatrist. So we had another surgery to remove it AGAIN, and at that surgery he also fixed the bunion on my left foot, or rather removed the bunion and broke my left foot, but that's another story. So I had this cyst injected and removed twice, and then scar tissue built up in that site, entrapping the nerves. The slightest touch to that site causes a searing pain that shoots up my foot. It is uncomfortable to wear socks and unbearable to wear shoes. So I wear slippers, which is not the best footwear, especially in the snow and rain. You can see why I want this problem to go away, it interferes with my walking, and my quality of life, as I try to raise 5 kids!

Anyway, tomorrow I have an appointment with my pain specialist in Yakima (finally, someone in Yakima who knows what they are doing). The pain specialist has been waiting for me to get off of my pain meds so that he can do a spinal chord stimulator trial, to see if this would stop the pain from the entrapped nerves. Personally, I would rather have my foot operated on, than my spine, but my orthopedist in Seattle thinks that the stimulator is a better bet for pain management, because he does not think that the nerve removal will be successful. I would rather try on my foot and if that fails, then work on pain management via the spine. Tomorrow I'll find out, what my pain specialist thinks. The final WORD, lies with him, if he thinks we should try to fix the nerves first we will do that surgery, otherwise I'll see my VA doc back in 4 weeks.

Two o'clock and one more appointment in Issaquah at 3:00. We had enough time to sit down and share a bite to eat before I went to the other orthopedist about my knee. So I was put into a walking cast and given permission to walk (which I had already been doing out of necessity). Off to Issaquah we went...

Ok, here's a little background on my knees. Growing up I was a swimmer, gymnast and cheerleader. In high school, I started having problems with my knees. I had arthoscopic surgeries to see what was wrong and a lateral realease on my left knee ( (they cut the muscle on the side of my knee, to release my kneecap which was being pulled out of place by the muscle). So I have had problems in the past. Several years ago my knees started to hurt and grind. Every step I took caused this scritching sound, totally audible to everyone. I went to a local doctor and he told me that my body wasn't producing the fluid to help my bones slide easily over one another as I walked. Without this fluid, the kneecap just grinds over my knee. He gave me a full leg brace on the left, thinking that if I did not use my knee, it might regenerate itself naturally. Then he advised me to NEVER use stairs for the rest of my life (RIGHT, we had just bought our first two-story house and all of my scrapbooking stuff was downstairs)! I thought he was crazy, he said there was nothing else he could do for me, so I went to Virginia Mason for another opinion. The doctor at VA took an MRI and agreed that I had arthritis in my knees and no longer produced the fluid which caused the grinding in my knees. He said that I would need knee replacements, but I was too young, so we needed to try something else to get me by. First he tried cortisone shots, then synvisc injections. The last synvisc injections caused an allergic reaction and both my knees swelled up so big that I couldn't walk. My knees had to be drained, and now I don't have very many options except knee replacement which he does not want to do because it won't last forever and will need to be done more than once before I die. So, I've been nursing my knees along, wearing braces to help decrease the strain of the grind, but now I have another problem...

Last week, my kneecap on my right leg started popping out of place. Sound like fun? Not really, if my knee bends more than 45 degrees, it catches and pops out, and HURTS! I started wearing my brace to try and hold it in place, but it still hurts, constantly. So I have this cast on my left foot and my right knee keeps popping out of place, the fibromyalgia is excruciating in my right hip and now I'm starting to get pain in the middle of my low back again (I should NOT have any pain in my low back since I had a rhizotomy on both sides a few months ago - this is a NOT so fun procedure in which they burn the nerves off in one area, to alleviate the pain. No nerves, no pain, right? You're nerves eventually grow back, but it should take a year). So my knee is killing me and I can't wait to see what he says, but I have an idea - my prediction is arthroscopic surgery to see what is popping out and repair something to hold it in place.

As I limp into the office and start sweating from the pain, the nurse says, "Oh, my. Just look at you, don't you have a cane?" Me? A cane? I'm not even 40! I don't have a cane! So she brings me in a cane. That thrills me, as you can imagine!
The doctor comes in, and of course when he checks my knee it doesn't pop! I was shocked, I knew it popped, I felt it, I heard it, but of course it would not do it when the doctor was around! He watched me limp around the room. Then he told me that maybe I should be in a wheelchair for a while. He thinks that I have torn the cartilidge in my knee. The fix - surgery, which he doesn't really want to do since I can't use my other leg very well, but he will if I'm in too much pain. He gave me a cortisone shot, a new, more supportive knee brace and sent me off. I'm supposed to call him on Friday and if things haven't improved, he will do an MRI and then decide what to do next. So I limp out of his office, pain shooting down my right arm, from my elbow to the middle of my hand (fibromyalgia I think), so my arm is shaking as I hold the cane and I'm sweating even more from the pain of the shot. I look like I'm 80 years old all hunched over and limping along. My husband said I looked way worse than when I went in. Finally, time to rest and contemplate this new situation. It's a two and a half hour drive home, and I cry for two hours from pain and frustration...tomorrow I see the pain specialist, I'm hoping for a better outcome.

I have survived!

2009-10-20T06:06:00.000-07:00

Ok, I don't feel good physically, but mentally I feel like a champion again! This fibromyalgia is really kicking me in the butt! Since I'm not on pain meds anymore, I feel absolutely every ache and pain. A very good friend told me that with fibromyalgia, you should plan on doing half of what you used to do and EXPECT to accomplish only half of that. That would be only 1/4 of what you are used to. While on pain medicine, it is easy to push myself a little more. I did that, just trying to do what I used to. I remember a time when people thought of me as a superwoman! I was teaching full time, I had five kids all under the age of 10, we took them to sports, and I got my master's degree! I once, started a tutoring program, while teaching full time and raising 5 kids! Now, I do nothing, in comparison, EXCEPT...

people say, "You look really good." So, I guess my appearance has improved since I've started having health issues! I've always said, "It's better to look good, than to feel good..." quoting an old Saturday Night Live Character, so at least that is continuing to be true.

Anyway, I still haven't slept more than 6 hours since I quit taking pain medicine. For the past three days, everything I eat goes right through me. So, I'm getting physically drained, and when I get up, just walking a short distance leaves me sweaty and breathless. I need to rest for almost an hour just after going to the bathroom. So I'm not feeling like myself and....I have 2 slumber/birthday parties to give this weekend! My youngest daughters are the same age for 2 weeks every year. We always start, middle October, down a slippery slope of parties and holidays until the culmination of my niece's birthday and mine on the same day. We have a birthday on October 15th, 16th, October 26th, November 6th, December 25th and finally on January 2nd. In between are Halloween, Thanksgiving and of course Christmas. We also have a tradition of making gingerbread houses once school is out for winter break. So this week, I've been slowly climbing up a big, long slide and sitting at the top, ready to go down. That's my concern, the ups and downs I'm expecting during the next 3 months. If I were to pick a movie to represent my life, it would be Parenthood with Steve Martin, Keanu Reeves and many others. The final scenes of the movie show him, comparing his life with a roller coaster, the many ups and downs and thrills of the drops and twists leaving you a little sick and breathless. THAT IS MY LIFE! It's an adventure every day, but I would not change anything (except my health issues). I'm feeling lousy, and now I need to put on my game face and prepare for these parties.

In the past, I've always gone all out for parties. I make the cake, goody bags, decorate, plan games and activities...it takes a lot of time and energy. I'm not working, haven't since 2005, and am desperately waiting to get a hearing so that I can recieve social security disability, so having no money does not help when you have parties to give. The odds are stacked against me, but I show confidence in the face of adversity and trudge on with the spirit of the Gladiator!

I can honestly say that the kids have really learned several life skills, as I am able to do less and less, they get older and can do more for the family (they don't always do it, but they are capable of doing it). My youngest daughter, whose birthday is on the 16th, pretty much planned her entire party! In September, my second son had his birthday party. I handmade his invitations, and while I was stamping them, my youngest decided to make her invitations too. Her party was 2 months away, but she planned it all that night. She made invitations, drew a picture of what she wanted her cake to look like, planned games...I taught her well, she was only 9! I was very proud! So, my main job was to clean up the house and make the cakes. She made a list of what she needed for the party and I gave it to my Husband. A new Wal Mart Supercenter opened up the same week, just a mile from our house! My wonderful husband came home early Thursday, to facilitate the cleaning of the basement for the weekend. So I trusted him to do the downstairs, while I prepared the upstairs.

Unfortunately, when he cleaned downstairs, he brought about 6 loads of laundry upstairs. I always have at least 5 loads a day to do, and it's been taking me longer to do laundry since it's so hard to move, so things were getting daunting. I had the kitchen, bathrooms laundry and living room to clean before 2 slumber parties. I had to do as much as I could, and the kids were going to have to pick up the slack. By the grace of God, we got everything done before the party (except the laundry). The laundry was pushed into my room all over the floor, creating a lumpy terrain that was hazardous to my health, with a broken foot on the left and now, my kneecap popping out on my right leg (read about this fun in my next post). I spent most of the weekend out in the living room just for my own safety.

By the end of the weekend, we had 9 kids sleep over on Friday night, paint pumpkins, swak a pinata, bob for apples, play Apples to Apples, and watch Titanic (which they had been studying about in school). I made 1 ice cream cake, 1 white cake and 24 chocolate cupcakes. I did about 6 loads of laundry (see what I mean, I'm WAY behind). On Saturday we had 4 more kids go roller skating for 4 hours, spend the night, play Truth or Dare, jam out on Rock Band and play foosball. The best part of all was that I finally fell asleep! Over a week of insomnia slowly slipped away as I finally drifted off into 3 hours of peaceful slumber. God is so good! I have survived to live another day and continue on this roller coaster of adventure...

Restless days and nights...

2009-10-15T02:59:00.000-07:00

Ok, it's now Thursday and I haven't been able to sleep since Sunday or was it Saturday? I can't remember since I haven't been sleeping. My body is so tired, but my mind is wide awake. I have been laying down, trying to get comfortable, but it's not working. I've tried Nyquil, Benadryl, Theraflu, warm milk, a bath and deep breathing, to no avail. I have been without my pain meds for almost two weeks. Unfortunately I am still in a lot of pain. I have fibromyalgia, as stated in my title, and was told that narcotics actually make fibro pain worse. In my personal experience, NOT! My right hip and lower leg are just throbbing, aching and hurting. My interstitial cystitis is also acting up. I had an appointment earlier this week and will be having hydrodialation as soon as it is scheduled, and my favorite nurse, Kim was able to squeeze me in for a DMSO treatment this week (which is a week earlier than scheduled).

Yesterday, I was able to get some new meds for my restless leg syndrome. Since I haven't been sleeping, my arms and legs are SO restless during the day and night. My feet twitch and my right knee has been popping out. OUCH! I have arthritis in both knees and was getting synvisc injections until I had an allergic reaction to the last one I got. Both my knees swolled up so much that I couldn't walk. I went to our local ER and they said that only an orthopedic doc could relieve the pressure in my knees and that was not their job in the ER. They said to go home and wait until the swelling went away on it's own. That's the problem when your specialists are in another city. No one locally wants to touch you. The price of gas is so high that it gets super expensive to go to an appointment in Seattle. Not to mention that you have to PAY for parking at the hospital in Seattle! That is just ludicrus to me. We pay enough for health care, and then they want us to pay for parking on top of that! It's crazy! Everyone wants money.

Ok, I've been laying down since 9:00 p.m. now it's 3:46 a.m. I feel very shaky and my body is exhausted, I just made myself a warm cup of cocoa with milk, hoping it will make me tired. I don't mind if I don't fall asleep right away though, Sweeney Todd just came on HBO. Johnny Depp is such a fantastic actor! I'll sit, enthralled, in awe and loving this musical despite it's terribly dark overtures. Every song is sung beautifully, and if you just listen to the music several songs are so romantic, while others are desperate and vengeful. His acting range is amazing! I recently saw a trailer for a new movie coming out, Alice in Wonderland, and Johnny Depp is playing the Mad Hatter. Every roll he undertakes is so unique, you can really see how talented he is, and easy on the eyes too. I think that some would call him eye candy! I could watch him all day. Another favorite actor of mine is Robert Downey Jr. I absolutely love his performance in Chances Are and in Charlie Chaplin. He was amazing in Charlie Chaplin. Yes, he struggled with his demons for several years, but he is now back on track and doing amazing work, once again. I am very excited to see his performance in Sherlock Holmes. His acting looks even better than in Charlie Chaplin (from what I've seen of the trailer). Well, I'm gonna sign off, and focus on my movie. I love musicals, especially when I scrapbook, they inspire me. Usually I listen to Chicago, Grease or Mama Mia. What inspires you?

Finally pain medication FREE! and still in pain...

2009-10-10T20:02:00.000-07:00

OK, my parents took dh and I on a cruise to Canada last week. The cruise was nice, very quiet compared to the normal high pitch tones of pre-teens and teens at my house. At every stairway and entrance into an area with food, they had someone there to squirt hand sanitizer on you. You couldn't get in without washing up first. Of course I had to take some pics of the hand sanitizer posts, because they were everywhere, like Starbucks!

I am still in a cast and unable to walk, so I was unable to leave the ship and go on a small boat (tender) to reach the mainland. It was ok, time alone, time to reflect and time to try and organize some of 3000 photos on my laptop.

I never left the ship until it was time to disembark, we played scattegories (and won), and I took 2 classes on scrapbooking. We also played visual trivia, which was fun. It was also nice to be away from constant cell phone calls. We left Yakima for Seattle, Monday September 28. The celebrity Mercury left port at 5:00 p.m. We got over 20 phone calls from the kids before we left shore! Which made the beginning of our trip uneasy at the least. I was worried sick....

The two weeks prior to our cruise, my oldest son got his first speeding ticket. My neice who offered to watch my mom's house and my two girls came down with the swine flu a week prior to departure. My youngest daughter was having major anxiety over me leaving and 2nd oldest daughter watched Titanic for the first time and got hysterical that we would even think about going on a ship. So, I spent a lot of the week before the trip putting out fires and calming kids down. God was definately with us, and everything was smooth sailing. I'd love to go on another cruise, but I'm not sure how to swing the cost with 5 kids. That will be another obstacle to overcome - finances...especially with unsurmountable medical bills.

Right before we were to leave on our cruise, I got a letter from my general practicioner and his office stating that he was no longer going to practice medicine at that facility and that my family had been put into a lottery, and another care giver had been assigned to us. I was in shock and disbelief! The Monday, prior to the letter, I had been to see my GP to fix my cast which had broken underneath my toes and provided no support for my poor little toes. After reading his letter, it sounded like it was a last minute decision. Still I was in shock and awe. Shocked because I trust him so much, he has been with me through all of my medical issues and complications. It is so hard to find someone whom you can trust in the medical field. Doctors are under the thumb of HMO's and the government and they work way too hard with their hands tied, so that they can't always treat patients the "best way" but the best way for the insurance companies. I admire his moral values, and the fact that he is standing up for himself and his patients rather than folding under the pressure of others. He is going to work out in the community and do some house calls, to help the needy. That is awesome! He is also working on a website, so that people can contact him with questions. You can bet, I've been bombarding him with questions; and I also get answers! Which is even better!

Unfortunately, even though I can talk to him, the state has not given him a new license so that he can prescribe medications. I got back from my cruise and had only 2 pain pills left. Since my doc had left, I couldn't ask him, I called our "new doctor" whom never returned my phone call, and I couldn't call my foot doctor in Seattle since he is on vacation. MY GP suggested I go to the ER, but I am really leary about that. They treat me like a drug seeker and I DON'T appreciate that. They don't know my medical history and if they did, then maybe they would be a little more compassionate. So, I have been off of my pain medication for almost a week now. I HATE withdrawel symptoms! I'm cold, irritable, tired, and anxious. The worst should be over, but who knows what is around the next bend.

It is horrible to be feeling anxious, skin crawling, irritable (from withdrawel) AND to have pain on top of it is just not my idea of fun. I have fibromyalgia in addition to many other issues, and was told that narcotics often make fibro pain worse. Well, I'm here to tell you that in my body - IT HURTS without the narcotics, it actually hurts worse, especially in my hip and neck. I already take Alleve and Extra Strenth Tylenol, but that just doesn't cut it. I'm hoping that next week I will get more answers. Please keep me and my family in your prayers. Hugs, Shellie

Today is another day without answers...

2009-09-04T21:09:00.000-07:00

September 4, 2009

Today, was another crazy day, like many crazy days. What made this day crazier than most, is that it is also the day my 14 year old son is having a birthday/slumber party. No biggie, except that it is also the same day I have to travel to Seattle (2 1/2 hours away) and get my cast recast. Two weeks ago I had my 9th foot surgery on my left foot. Today was the day to remove my stitches and get another cast on. All seemed to go ok, until we got home and had 1 hour to prepare the house for a slumber party. Luckily 14 year old boys don't really care about decorations and goody bags, like they used to.

The party has been strange, the boys have been trickling in and out. Upstairs and downstairs. They have walked 2 blocks away to go to Rosaur's and buy my son his birthday presents. We have spent most of the night waiting for everyone to gather together...again, so that we can do a group activity, like eat pizza. We have a pirate pinata outside so that they can hit something and get some of their teenage energy out. The presents, wrapped in traditional newspaper wrapping, are stacked on the table, waiting to be opened. My youngest daughter, who is prepubescent, keeps screaming and jumping up and down since she is having the "worst day of her life" (at least the worst day so far this week). I need to introduce her to Alexandar who also has many terrible, horrible, no good, very bad days. Finallly, the boys sauntered inside to watch the presents be revealed underneath their newspaper coverings.

14 years old, and he got a refridgerator, a storage ottoman, a visa gift card, a gift card to 7-11, a gift card to Subway and a couple boxes of his favorite snack, goldfish. WOW! He recieved gifts that most people would get if they are moving out, not still living at home. Kids are so self-sufficient and reliant nowadays. I was teaching 1st grade and had a fridge in my classroom, for snacks and treats. Once I went on disability, I brought my fridge home and my son had it in his room, downstairs, to keep some snacks in and prevent him from having to go upstairs for a cool drink. His "NEW" fridge is twice the size, with a freezer too! How many 14 year olds need their own fridge? Well, now that I can't walk again for another 6 weeks, it will be nice to have my own, small fridge in my room, to keep some protein drinks and cold water in, so that I don't have to leave the comfort of my room for a little snack...

Ok, party going, things kinda quiet while they eat cake and take a few minutes to chill. Now back to my story...

Two weeks ago I had surgery number 9 on my left big toe. This surgery removed some screws and a plate that was holding my toe together. I had been having lots of pain in that toe, and after a bone scan, it was determined that I had another nonunion at the joint, under my plate. Sooo, it was decided to remove the plate and screws, fill in the nonunion with bone grafts and then put 2 screws back in a criss cross formation to help hold the toe together while the bone graft grows together.

My toe is still hurting quite significantly, even 3 weeks after my surgery. My doctor is concerned, because I am still having quite a bit of pain, and I shouldn't be having much if any at this point after surgery. To put my pain in perspective, I have been on STRONG pain medicine for over 5 years now. Currently I'm on 8 mg of diluaded every 4 hours. I've been going to my local pain clinic for a year now, trying to get relief from the pain in my foot and my fibromyalgia. So far, I've had several injections in my spine, a rhizotomy on the left and right low back, and discussions about putting a pain stimulator in my low back, to help with the entrapped nerves on the left side of my left foot. Currently, my pain doctor does not want to put in a battery stimulator until I get off of the majority of my pain meds. If I still have the pain, how am I supposed to get off of the pain meds? I don't think that the pain will go away if I quit taking pain meds, if anything, I would predict that the pain would only get worse. When I asked my pain specialist how I was supposed to get off of the pain meds while I still had pain, he said that he didn't know, but he did give me a hug and told me to call him once I figured it out. WHEW! That hug really did the trick, I felt so much better....NOT!

My foot doctor does not know why I am still having pain in my toe 3 weeks after surgery. We both know that I am still having pain on the left side of the same foot because of entrapped nerves. We (foot doc, pain doc, general doc) have been unable to fix these nerves which cause so much pain, that it hurts to walk, and the slightest pressure on them causes searing pain up my foot. So I wear socks or slippers most of the time, which do not help protect my fragile toe at all. My foot doc wants me to see another pain clinic, to see if they can help me get off of the high dose of medicine I'm on, so that we can deal with the extrapped nerves more realistically. I left the office today withOUT an appointment, since the other pain clinic would not return his phone calls. No answers, still pain...same story!!

I have asked 2 doctors to put me into a coma and reset my pain receptors and allow my body to go through withdrawels while I'm asleep and not suffering through them. I've seen it done on House and on Royal Pains. The doctors aren't sure how the procedure works and are leary of doing it. I don't want them to do it if they aren't comfortable, with my luck it would go disasterously! Believe me, if something could go wrong, it will go wrong, with me...I am eager to get this blog going, and to share my story with others, so I've started today. My 3rd foot appointment since my last surgery. Old cast removed, stitches removed, new cast put on...no xrays, still pain in my toe and doc's suggestion is to try another pain clinic. I'm not against going to another pain clinic, I would like to get off of these strong pain medicines which are affecting my memory and mood too often. I am concerned that the pain in my foot could be foreshadowing another problem...a problem that originally caused all of my foot problems...December, 2005 I had a cyst removed on the left side of my left foot and a bunion removed from the big toe of my left foot. The cyst grew back, causing increased pain in that area and the screws put in, to straighten my toe from the bunion, disintigrated my joint, separating the joint from the metatarsals and shattering all the bones in my left foot because nothing was holding them together. The botched bunion was the beginning of one nightmare that continues day after day...more details to come...

Murphy's Law - more than a description

2009-08-12T15:11:00.000-07:00

I'm sure you hve heard of Murphy's Law that says something to the effect that if anything can go wrong, it will go wrong. That is the unspoken mantra for our family. Not a day goes by without at least one disaster, usually there are 2 or more. This past week, we had 3 serious interupptions in our lives. Usually problems comee in three's, so we are hoping/praying that we have met our limit for this week at least.

Early in the week, August 1, we drove to Seattle Washington for a bone scan at Virginia Mason Clinic. We were leaving at 11:00 in the morning. I got a phone call at 9:00 that my grandma (my dad's mom) had a stroke and was paralized on her left side. My oldest son who has his driver's permit, took me to the hospital to see her, before we left for Seattle. I quickly packed up some stuff for our trip and then had him take me to the hospital. My husband left work early, packed the bags into the truck and then dropped off the girls to stay at friends houses and then meet me up at the hospital where he could pick me up before we left for Seattle.

My grandma had a stroke, leaving the left side of her body paralyzed. I was scheduled for a bone scan in Seattle at 8:00 am on Tuesday, so we wanted to leave on Monday so that we would be there on Tuesday for the appointment. While I visited my grandma at the hospital, I noticed that she was making some improvements, so I decided to continue for my bone scan in Seattle. So we drove to Seattle for the appointment. We were gone 2 days.

Good news! The bone scan showed that my big left toe was a nonunion despite the fact that there is a plate over that toe! So we will be having another surgery to fix that within 2 weeks.

While in Seattle (dun, dun, dun - music) my neice got beat up by her husband in front of her little daughter. She lives in Oregon, while we are in Washington. She was scared for her and her daughter, so as soon as her dh went to work, she packed up a little bit and took off for WA. She went to her parents house and called us later in the week. She wanted us to take her back to Oregon on Saturday, so that she could pick up the rest of her stuff. Of course we said, "Yes!" So now we have part of our weekend planned.

So after our trip to Seattle for the doctor, all was ok until we went to Oregon on Saturday (dun, dun, dun - music). When we went to my niece's house, someone had taken sugar and poured it all over the top of her fridge. Ants, over and inch long! There were spiders, and huge ants throughout the house! Her husband was put in jail and she was, so relieved to hear that. Now she didn't have to worry about running into him while she packed up the rest of her house.

Driving home that afternoon, we got a call that my grandmother had passed away. I felt terrible and guilty since I wasn't there when she died. I know she is in a better place and is not suffering anymore, I know that my mom, dad and sister were with her too, so she wasn't alone. I try to tell myself that I was HELPING my neice and that I couldn't have left her all alone either.

The bottom line is, that despite what is going on in our lives, it is always imperative to help others whenever the opportunity presents itself. This was one particularly rough week for me...finding out that I needed another surgery for my foot, my grandmother died and my niece was beaten up by her husband. All of these things really tug at our heartstrings, and can make us feel helpless, but in the face of adversity, keep your chin up and do something, anything for someone other than yourself and it will fill your soul with a peace that will make you feel better, no matter what you are going through. God is good and He will reward you for what you DO, not what you experience.