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

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!

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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...

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!

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?

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!

Pain

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....

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....

February Highlights

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!

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...

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!

Same Shit Different Day (SSDD)

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!

The latest, but not the greatest news...

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!

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

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.

New Doctor Today

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

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?

Another trip to Seattle

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.

Murphy's Law - more than a description

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.