Reassessing What’s Important After Relapse
I have started this column many times, but I have had trouble putting my emotions into words. I am trying to digest and cope with how my body is slowly failing me, and I don’t know how I feel about it.
If you have been following me, you know that I had a stem cell transplant in January. It was a trial treatment and seemed to put me into complete remission. I was functioning like a “normal” adult for the first time in more than 15 years. I was able to go to the gym, work a full day, and still have the energy to cook a delicious dinner for my husband. I felt like I had been given a second chance at life, and boy, was I going to grab it with both hands!
Over time, I have noticed that my body is not as responsive as it was immediately following my transplant. I need a nap to make it through the day, and I have not set foot in the gym for more than two months. I began to slur my words again, and I have to be careful not to choke on my food during meals — I have already had a few close calls.
I have had to reassess what is important to me. Do I really want that six pack, or do I just want to be able to make it through a day without collapsing in a heap? Do I want to push myself to go to every event and pay for it for up to a week?
I went to see my doctor when things had been going downhill for about a month. We made the decision to begin chemotherapy once again. I am only authorized for three rounds and I have already had two. The side effects of chemo are terrible and I am incapacitated for at least three days after a treatment. But I need that joy of life back.
This relapse has been far more difficult emotionally as I now know what it is like to live a full and healthy life. I know what it is like to do everything possible, and still have energy to entertain friends and family. I am back on antidepressants, and I am coping. I will never give up. Something has to work. Something.
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Comments
R Couchman
Megs this must be so difficult for you, as you certainly made the most of it when you recovered from the stem cell treatment. We will be with you in every way.
Lesley Frescura
Dear Megan, you hardly know me, but Sue always keeps me informed of your progress and I was delighted when the stem cell treatment seemed to work so well. Strength to you. Lots of love, Lesley Frescura. Your father was Sue's brother and my first cousin and I remember him with love.
Lientjie Zeelie
Dearest Megan. As I read your post I couldn’t stop the tears. My father diagnosed with MG 3 years ago had a severe MG crisis 3 weeks ago and has been battling for his life being on the ventilator and having contracted pneumonia. As a last resort the doctor is starting chemo today. We watched him go from being a healthy active man to being unsocial, thin and weak. Why am I telling you this? I want you to know you are not alone! As long as you are breathing...there is hope! Live you life, enjoy what you can and make peace with those things that you can’t do today and enjoy them on your “good” day. That is what I learned from looking at how my dad copes with MG. He learned to enjoy the little things in life...and so did we.... I will pray for you...
Mary Vassey
“But I need the joy back in my life” No truer words silently screamed. I am not going to say platitudes which only make how you feel worse. A dear friend of mine and I, at the beginning of this year, decided to find joy in just one thing every day. Some days we could not find one thing bringing us joy. Other days we found ourself laughing over what had made for a joyful moment.(mostly small things like getting dressed, making soup). When we were really low, turned on a video of our favorite comedian. I am sending prayers your way.
Fellow MG traveler.
Christine Wheaton
Dear Megan,
My name is Christine. I want you to know your not alone in this. I was diagnosed with Myasthenia Gravis 5 years ago and have been struggling myself. I have no one in my area that I can talk to other than my family about my condition. They are very supportive and loving and I totally understand the good and bad days. My Neurologist in Philly had first started me out on Cellcept, Steriods, Pyrostigimine and it had gotten to the point where I was having more bad than good days. Living on a liquid diet pretty much because I was always choking on any type of food. So he decided to try me on the Trail of Solaris and we were hopeful, unfortunately being that it was new on the Market for MG we were optimistic. Unfortunately it made my symptoms worse. So I am my 3rd try of medicine. I am now on IVIG Blood Plasma Infusion treatment and it seems to be working. I get this once a month but by week 3 I am starting to feel weak again, slurred speech is coming back along with choking on certain foods. I am hopeful that this will work. Once I get the 2 day treatment I start to feel like myself again. We know this is a long term treatment and I am hopeful. I myself have come to the realization that life is to short and fragile and to enjoy it everyday. Do what your body will allow you to do and unfortunately accept things that you once loved to do that you can't and know it's OK. That's what family is for to help you along the way along with friends. Keep your spirits up and know your not alone. God Bless you and your family.