Make a Medical Binder!

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

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

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!!

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

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

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

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....