Tuesday, March 31, 2009

My New Friend

Mindy Shaw hooked me up with a lady who has MG and who was diagnosed during her pregnancy as well. She has struggled with it for 30 years and has such a positive attitude about the disease. I have been corresponding with her via email and I thought I'd share some statements she has said to me that have helped me a lot.

  • When I say function it is not function like before. Weakness and fatigue are our everyday companions.
  • The bright side of MG is what you learn to do that most everyone else never learns and that is to prioritize, organize and move with ergonomic efficiency.
  • The name of the game with every thing you do is “How can I minimize movement?” “How can I do what I want to do within the limits of my strength?”
  • You just have to get creative and do things a bit differently.
  • Our bodies declared war on itself, weird isn’t it.
  • My hands are not my chief nemesis
  • Remission for MG is not a cure but in comparison you feel cured because it is strength you have rarely known in your life.

She is great and has really encouraged me to not lose hope and focus and to just be creative. George has lowered all of our hooks and racks around the house, mom purchased me a hair dryer stand, and I bought some plastic plates and bowls so that if I drop them it will just bounce back. The name of the game is modification, accommodations, and creativity.

One thing I would like to educate others about is that MG is not something that can be controlled or have a quick fix. Many people tell me to just get some weights, or get some rest, or take a pill and you will get stronger. MG is an autoimmune disease and the body feels the need to destroy the receptors between our nerves and muscle. The connection is not being made and it has nothing to do with strength or exercise or eating, etc. Messages in the body are reaching the brain at a different rates due to a lack of receptors between nerve and muscle tissue. Think of all the muscles in your body, and how many parts this effects. It moves around my body from day to day. Some days its my fingers, wrists, arms, legs, feet, throat, neck, eyes, back and tongue. One day I can put my hair towel over my hair, and the next day I can't. One day I can get out of the chair, and 5 minutes later I can't. Rest is key and the less I do something the easier it is to do once. I have always been an educator and I believe that the only way to truly understand what someone is going through is to live it, but the next best way to understand is being educated yourself.

Thursday, March 26, 2009

Prednisone 40mg and Mayo Clinic

Well I haven't updated in awhile, so I thought I would do so while little Haley is taking a nap. I have now been on prednisone for a month and am not seeing any results. I am actually feeling a little weaker in my legs. I go back to the doctor next Thursday and will see what she is going to recommend. I am still doing IVIG treatments every 3 weeks, and that is just more of a booster maintanence thing than anything. I don't feel any real effects from it, but thats normal with MG.

So, I have made me an appointment at the Mayo Clinic in May in Rochester Minnesota. They see 350 MG patients a year. They say prepare to stay a week and meet with some of the best neuromuscular specialists. I am looking at plane tickets and starting to plan. My goal is to go back to work in August, and time is not on my side. I don't want to look up and it be August and I'm still sitting here feeling bad. Not to say that going there will be a miracle, but its a shot and I'll do anything at this point.

I have learned to manage and adapt pretty well. This disease messes with your mind because there is truely nothing you can do to fix it, and no explanation as to why you can do something one time and not the next. It really puts life into perspective when you wake up and think, "I should be happy, I can swallow and breath." Thats pretty much what I say each morning.

Here are just somethings we take for granted that I have trouble doing now. Hopefully soon I can read this and be doing them again:

1. Brush my teeth standing up straight
2. Put my shirt on or take it off standing up straight
3. Brush my hair with one hand
4. Put my hair up in a pony tail without laying on the bed or in a chair
5. Get a glass bowl out of a tall cabinet
6. Stand up out of a low chair
7. Sit on the floor and be able to get up
8. Lift my fork to my mouth without having to rest my elbow on the table
9. Walk and carry Haley or put her car seat in the car
10. Climb stairs

So if you think you are having a bad day, if you can do those things above, I'd say you are doing pretty good!!

Monday, March 2, 2009

Prednisone 5th Day

Today is my 5th day of taking 10mg of Prednisone. I up my dosage tomorrow to 20mg for 5 days and on up to 40mg for awhile. I am not seeing any benefits as far as muscle function is concerned yet, but I am feeling a little more chipper and in a little bit less pain as far as feet and hands are concerned. My doctor said it can take a month to feel the effects, so I'm being patient. Any progress even if it is just that my mood is better I will take for now. I have another ivig treatment scheduled for every 3 weeks and my next one is March 19th. Please continue to pray that the Prednisone works and that with time things will get back to "normal" again. Not sure what normal will be for me, but at this point I would be happy with just being able to carry and lift Haley, not having any pain, and having more energy to want to get out of the house and run errands.