Wednesday, June 3, 2009

June is National Myasthenia Gravis Awareness Month

I have been dealing with this disease called MG for about 14 years now. I was not "officially" diagnosed until July of 2003, when a new test for a specific kind of MG (Musk+ MG or MMG) came out. I started having symptoms about 6 months after having chronically infected tonsils removed. I was hospitalized in October of 2000, where I spent the majority of the next 3 months at the U of M neurological intensive care unit (NICU). Prior to being hospitalized, I had been to dozens of doctors. Most of them told me it was stress, a few told me it was anxiety. One told me it was all in my head.

On October 13, 2000, I had an MRI under sedation. I quit breathing completely, and had to be emergently intubated and resuscitated. Four days later, after numerous tests, EMG's spinal taps, etc., I was flown via helicopter to the university of Michigan hospital in Ann Arbor. I was told later that the doctors were afraid I would not have survived the trip by ambulance. I don't remember much from then until November 1, 2000. I CLEARLY remember two doctors, Dr. Andrea Bozoki and Dr. Ming Hong, who told me all of this was in my head, and if I accepted it, I would get better. If you ever run into either of these doctors, turn and run for your life. Literally. They came up with some corny diagnosis of chronic motor axonal neuropathy, which translates to "fancy name for pain because you're a psycho." They sent me home with anxiety medication and pain pills, and I almost died.

It is truly a miracle I am here at all today. Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )

Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.

I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.

The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Difficulty chewing
*Fatigue
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip

I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)
Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.

Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 3 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week. Jacob was bron with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!

For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose. I go to the U of M aphersis lab, and have plasmapheresis, or PEX (plasma exchange) every 3 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm. For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.

I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."

If you are interested in supporting Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.org

I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.

Thank you for taking the time to read this, and please join me in praying for a cure.

30 comments:

Young Wife said...

Thank you for sharing your story. I am so sorry that two doctors told you it was all in your head. One of my favorite doctors told me that in order to imagine serious pain, you'd have to be literally insane. So insane that you'd be imagining other things and your family probably would have already sough psychiatric help!
I'll be praying for a cure.

LRU said...

I thank you also for sharing your story. I just starting dating a wonderful man. He has MG and is a cancer survivor. I'm trying to find out all the info again. He has been ignoring me lately. I hope his health is ok!!
I also have a faith. "I can do all things through Christ who strengthens me.
All the best to you!
You are in my thoughts and prayers.

chele said...

Hi Kerri! Thank you so much for sending me to your blog and sharing this with me and so many others! I am certain that God is using your testimony to inspire and encourage those who know you personally and electronically. :) You are an amazing woman, Kerri! I respect you immensely and only wish we had stayed in contact all of these years. Keep fighting the fight and I'll keep praying you through it! Love ya, Chele

Tortuga said...

Thank you so much for sharing your story. What scary situations those must have been. I was unaware this disease existed until I read your blog. I am humbled having read it and admire your courage, determination, and faith. God has blessed you with your son and has blessed your son with such a strong mom.

Vivianne's Vista said...

I have never heard of this disease and am amazed at your resilience and courage. Even more amazed at the callousness of those doctors, who are supposed to be helping others and seeking the truth. I thank you for the advice in terms of how to deal with a person with chronic illness, because most often than not, one just doesnt know what to say and do! I will pray for you and your family.

TuTu's Bliss said...

Thank you for this. I have female family members constantly being dismissed for symptoms that impact their quality of life. I am glad you were able to survive and see a diagnosis and not continue to be dismissed.

Elizabeth a.k.a. Type A Mommy said...

Thank you for sharing your story. I have a friend who's being tested right now for a chronic illness, and this helps me see how hard the walk in her shoes would be if it comes to pass that she has the illness. I applaud your strength and courage and hope that you continue to beat this illness!

Shelley said...

Before I was diagnosed with my RA (and all it's lovely side effects) I went to a neurologist who tried to give me lessons in visualization. Can you believe that? Then he put me on a medication that made me a zombie. It was a very dark time.
Thanks for sharing your story.

Joann Mannix said...

Wow. How brave of you to not only fight this illness with such spirit but also such wonderful candor. You are a shining example of people who don't let their illness become them instead they conquer their illness. Maybe not physically, but in your brave heart and soul. I am so happy for you that you were able to have that beautiful boy. Bless you and your family.

bubbleboo said...

God bless you. Thank you for being brave enough to share your story - with warmth and humour to boot! You really are a very special lady, I'm so pleased I found your blog through SITS

Amanda said...

GOD is GREAT and he has a purpose for all of us and your story is a prime example! Your little one is so precious.

Tiffany said...

I love to read about people who are given a second chance at life and take that chance and do some good. I never knew what blood banks did with plasma. I've heard commercials for donating but never knew the importance.
Your son is definitely a gift from God.
Visiting from SITS.

Nikki said...

Wow thank you for your story. I think you are a very strong woman to have survived that and an amazing mother for contueing to be strong for your son. Sending you lots of blessings and healing wishes. ps have you ever tried acupuncture with this condition? I'm currently attending and I don't know if it would help, but possibly?

AmberRay said...

That is an amazing story. God was a part of all the miracles. Thanks for inspiring. One of my favorite scriptures is Philippians 4:13 I can do all things through Christ who strengthens me.

Melissa @ Cellulite Investigation said...

What an incredible story, Kerri. Thanks for sharing it with us! If you like to read health books (like I do), I recommend a fascinating book called "the Fourfold Path to Healing" by Dr. Thomas Cowan. This doc takes a different approach than the docs you described in your story. I don't know if he addresses MG directly, but maybe you will find a clue to lead you on the right path. Best wishes to you on your journey!

Anita said...

What an amazing trip you've been on, I am heartened to see your wit and humor,despite the harsh realities. I look forward to learning more about you. Thank you for sharing, and I pray you enjoy your SITS day.

Heidi Walker said...

It is all too common now days for doctors to send folks home with the "It is all in your head" diagnosis. Partially it is Western Medicine practice in general but the Doctors need to take repsonsibility for themselves.

I encourage you to look at some natural ways to help manage your chronic illness. Here are some sites I came across that may help.

http://www.alaskawellness.com/mar-apr00/mg.htm

http://www.amazon.com/exec/obidos/ASIN/0028620593/stellarbooksandt

http://www.regenerativenutrition.com/natural-supplements-cure-myasthenia-gravis.asp

http://www.health-science-spirit.com/myasthenia.html

http://hubpages.com/hub/Natural-Remedy-for-Myasthenia-Gravis

this was truly a quick search. I encourage you to research it. There are many quacks out there so you need to be careful but the nutritional end of your illness should not be ignored.

I would like to see your quality of life improve and I think you can do it. It is sad to say our Doctors of today do not place enough emphasis on our way of eating but do know that it is key to many successful treatments.

Shannon said...

Wow, You have really been through it but have kept your humor and positive attitude...that has to be a God thing! Thanks so much for sharing your story I will be praying...I'm stopping by from SITS...Happy SITS day to you! God Bless and may His face shine upon you today and beyond! The littl one is adorable...I have 3 teen boys and one 9 yr old girl...

Expats Again said...

You are one brave and courageous woman. Your attitude inspires all who read your blog. Thank you for educating me regarding your disease. As others have said so eloquently, you are not letting this illness get the best of you. I will pray for you and for the "best" yet to come.

The Random Blogette said...

You are truly an amazing person. Thank you for sharing your story! It is hard being a female because doctors like to dismiss symptoms as anxiety, or all in your head! I have been there. Be strong and keep fighting!

Heather said...

You are an inspiration. I complain about being tired. I am an idiot. When there are people like you out there truly struggling to make it through the day, I should be ashamed. Thank you so much for sharing and congrats on your SITS day!

Margaret said...

Wow I love what you wrote at the end. I wish more people could see that we are chronicly sick and not judge us like they do.

Thank you for writing this.

Hang in there.

Zeemaid said...

wow... what an incredibly hard journey. It's a good reminder to us all to not take our health for granted and to not judge others when we don't know their back story.

thanks for sharing. Happy sITS day!

scrapwordsmom said...

Bless you!! You have been through so very much. What an amazing attitude you have and your son is GORGEOUS!! Hugs to you:)

Crystal said...

SO TRUE. I have Scleroderma & I'm just now dealing with acceptance (although it's been 21 years) & learning to deal with the fact that people CAN'T see what's wrong with me & may judge.... I'm always an anxious type about what people think & this has been very hard to deal with! You have been through so much & dealt with the same types of Dr.'s I have (unfortunately). I'm with you on the child thing - we're just getting ready to really pursue starting our family & I'm scared to death about not being able to RAISE my child. I know I can make it through carrying him/her (I assume!), but it's what comes after... dealing with chronic illness IS tiring and it's tiring, so that doesn't hlep. It's like a double dose of TIRED! LOL.... But you sound like you've figured out how to hand it over to God & let Him help you. I'm on the road to that. It's a hard road... but I'm at least on it. More than I can say for the past 20 years..... blessings!

Alianna said...

Thank you for sharing this. I really liked that you didn't seem depressed about your history; your story comes across as upbeat, a survivor.

scrappysue said...

wow. you are truly a fighter. thanks for sharing

Dogmom Diva said...

Kerri, bless you for this post..I am wiping tears from my eyes..from your faith and strength in dealing with this. I also have a chronic illness, not as severe as yours, but debilitating all the same, fibromyalgia. And I get the same thing..gee ' you look ok'..or ' you could feel better if you tried'. Like I want to feel this ill most days! Ugh..anyway, I signed up to follow you you have a mission in life my dear.
hugs
Barb

Marie said...

Wow, you definitely are a miracle, no doubt about it. I had no idea bout this horrible disease, I hope and pray for a cure, until then I will pray for you.

Miz Dinah said...

Wowzers! That's an amazing story. I'm so glad you found doctors that were willing to help you. That's got to be frustrating, having them tell you it's all in your head.