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.

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!!

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.

Treatment #6

Well we have had a busy day today. I started feeling weak again on Monday and new that something was not right. My sister and Cooper came down for a couple of days to help us out. Man, they sure were a big help, we did not want to see the Super Nanny go. Sara had a way of calming Haley that we have not been able to do so far. Today George took me to see Dr. Nations. She is starting me on Prednisone to see if I will get stronger or if it works.

I am getting an infusion right at this very moment sitting at home watching tv in our recliner. Home Health is a wonderful thing. The nurse is very nice and helpful. She sits with me for 4-5 hours or until the bottle is gone. I am scheduled to do this every 3 weeks, but this time it was only a week in between treatments.

Dr. Nations said that I am a moderate case and that the prednisone should help. There are so many side effects to predinsone, and she said I won't stay on them long. One questions she continues to have is if this disease is congenital (born with it) or autoimmune. All my labs are coming back negative or normal meaning that it is congenital MG, but since my body is responding to the treatment, then that makes her think it is the autoimmune kind. Maybe the prednisone will help her tell more of which it is.

Please continue to pray for my healing and strength. Its so hard one day walking around and holding your baby and the next day feeling as if you don't hold her head or or yours for that matter. My mom and George are definitely my strength and have helped me so much doing anything and everything they can to be strong and help out. George's mom helped so much too staying with Haley while I was in the hospital. Thanks cannot begin to express how much they are appreciated and have helped me with things I cannot do on my own.

I'm Home!!

Sorry I haven't updated, our internet has been down. I am now home and feeling stronger everyday. It will take awhile and I have to remember how down I have been since Nov. and that I have just had a baby and that it is going to take sometime. I am much better than prior to giving birth thats for sure.

I was on the phone with home health and getting it all set up to do home infusions every month or so. I go see my neurologist in a couple of weeks and I already have lots of questions. My doctor said that ivig was kind of hard to come by because of the war, so if you can ever donate blood-please do and just think of it as if you are helping me.

Treatment #5

Started the 5th Treatement this morning at 6 and it should be done by 1130 or so. Then I just have to wait for the doctor to come by and discharge me. Improvements: This morning I swallowed my pillow instead of getting them crushed and ate a piece of sausage. I'm so excited about getting to see my little girl in a couple of hours!!

As for where do we go from here: My neurologist in Dallas said that she wants to see me in 2 weeks and then she will set me up for booster treatments every 3-4 weeks at home. Home health will come in and run the treatment for 5 hours and then be done. She says the effects of these 5 treatements should last 3-4 weeks. Lets pray that she is totally wrong and that I will get better and not need anymore treatments!! Thats possible that it could go in remission or that it could not need anymore, but if not then i'll just chill at home once a month and get a treatment. If it makes me feel better and normal, then so be it. I'll do anything not to feel like I have for the past 6 months or have another crisis like I did after delivery.

Thanks for all your prayers. Keep them coming. I'll try to update, but I can't promise that I'll be doing anything but spoiling Haley and taking care of myself when I get home for awhile.

Treatment #4

Tuesday February 17

Started treatment at 6:15am and it ended at 12:30pm. I am able to swallow better I ate ham, fruit and potato salad today and walked around the halls a few times. My last treatment is tomorrow morning and then I get to go HOME to see my baby Haley! God is good!

Managing this Disease

So, MG is a disease that will have to be managed for the rest of my life. Its not curable, but can go into remission for years and years and I can manage it. Stress is the main reason that MG flares up and can put your body into crisis. That is what I am in now is a crisis. Pregnancy just put way to much stress on my body and delivery caused me to go into a crisis.

From now on the name of the game low stress, low key, stress free environment. The more physical and emotional stress I have on my body, the more likely I will have problems. A slower paced life is my life now and many people manage work, kids, and life with MG, you just have to be aware of your body and the situations you are in and rest, stop and not let your body get into a stressful crisis. I can eventually workout and do things, just have to be aware of my body, feelings, thoughts, and situations going on all around. So if you are reading this, you better be nice to me and not stress me out or George will take you down... jk.. well sort of.. :)

Feelings/Throughs

So you are probably wondering how I'm holding up. With the improvements I see, although small to you are huge to me. When you feel so bad as I did, you will do anything. Many did not truly realize how bad I was. Probably my mom and George were the only ones that really knew how bad it was. I was basically just trying to be strong and make sure Haley was healthy. Now its my turn. Haley is healthy and happy and she needed a healthy mommy. Things that have given be strength:



1. Thought several times-why would you go to church all your life and to a christian college, sing all the songs, pray all the prayers and then not have faith and hope that God can heal? I have just kept the faith that if he could heal the blind man, he can heal me.

2. When I looked out my window in the hospital the other day I looked at the clouds and though, if he can create the beautiful clouds in the sky, he can do anything

3. All the prayers and kind thoughts, words from everyone has given me strength

4. Sunday morning at 10:45am I felt a sense that my name was being lifted up and I felt peace. I also felt a little more strength at this time. I knew I was being prayed for by many people and God was healing me.

So God is good and thats really been my strength. I pray that this hard experience will strengthen mine and George's faith as well as the rest of my family and friends. God is good and he has a purpose and a reason for everything that happens in life.

ITS GOLD!!!

So when they tell you that each bottle of the IVIG is $10,000, you have to have HOPE. I will post a picture of the bottles. We have taken a few of the precious gold. I just think this is so cool, that God created so many minds to create such an awesome treatment that can help heal people.