Reflections on 2011

Wow, what a year. When I think back I can't believe that this time last year I was unemployed and battling insurance companies to have my thymectomy. Compared to the battles fought and heartache I went through I would say this year is much better.

This year as the New Year approaches I am sitting comfortably at home with an amazing new employer, I have made friends across the continent and globe for that matter that mean so much to me and I would not know were it not for this illness, I have recently been elected to our local Myasthenia Gravis Foundation Chapter's Board of Director's, I won The Coraggio Award at the Annual Myasthenia Foundation's meeting, I survived my thymectomy and while I spent too much time in hospitals this summer it has been months since I have had a crisis. I was also honored to be asked to speak to a group of 200 pre-med students at Michigan State University and was interviewed on the radio. For not getting around much I sure made a footprint!

This year I am so thankful for my Doctor's who believe in me and trust me and work with me to be as healthy as I can. My physical therapist and therapist who push me just far enough to keep my physical and mental strength at their peak. My family, friends, and even complete strangers who have helped with rides, companionship, finances we are So Blessed! And I can't wait to pay it forward!

Looking forward my hope is to heal more, to go into remission, should that not be in my cards then I wish for my Illness to continue to be a vessel. To educate, comfort, and support others going through this. My biggest wish for this year is for Pat to successfully complete his Software Engineering program at Ferris. He so wants this and I am so proud of how far he has come.

To all of my readers, thank you for your love, your support, and your prayers. A very Happy Healthy New Year to you all!
Jen

Never a dull moment

Well my spirit is strong but my body is weak and so it goes with myasthenia. I saw my neurologist on Tuesday and a few changes have been made. First, he has decided to continue treating me with the IVIG but at 1/2 the dose as I seem to tolerate that much better. I was worried he would want to change me to plasmapherisis but given I have such bad veins and a congenital heart defect the IVIG seems to be the way to go. I was worried it wasn't working as well but he said that the fact I went so long with the reaction to the port stitches and only ended up in the hospital after I reacted to the Claritin, it was a good sign that it is doing as much as we can hope for at this time.

Also, the cyclosporine finally started showing up in the blood labs....hooray!!! This means I don't have to move to another major immunosuppressant but I am still not functionally where he would like to see me so he increased my dosage again. This is never fun because the first 2-3 weeks I have severe nausea and stomach cramping not to mention a need to visit the restroom every hour throughout the day. Hopefully that will taper off as I get use to the dosage.

We also broached the subject of having a thymectomy again. I am hesitant as it is major surgery but am getting closer to surrendering in the hopes that it will work and make me stronger. The evidence is not great in that 75% of patients do not see an improvement but I agreed to have a consult with the thoracic surgeon to weigh out the pros and cons. Please keep me in your thoughts and prayers as this is a major decision for me and my family.

Lastly I found out that my labs have been off for the past few weeks. My red blood cell count, my hematocrit, and my hemoglobin are all low and keep dropping. If my hemoglobin stays low the neurologist said a blood transfusion may be needed. At this point I welcome it as I have been so tired and even weaker than normal lately and it is supposed to really give you a boost.

So that is about it, I know it is alot of information but it was a productive appointment. I continue to have to use the walker daily and my vision is constantly affected by this beast of a disease. On good days I have no depth perception, on bad days I have double vision. They say this is the one symptom that tends to not go away with medication. I was lucky in the beginnning but I think the myasthenia is winning the battle in that regard. I will continue to do my physical therapy which consists of trying to strengthen my diaphragm, wrists, and ankles. The recent flare up set me back quite a bit in regards to overall weakness but I am hopeful that I will start to see some improvement soon.

Ta Ta for now and happy Friday!
Jen