With trembling hands

It is a little after midnight and I am waiting for my insomia meds to go into effect, despite doubling the dose.  I am fighting a migraine and I am struggling through tremors and spasms, because my anti-convulsants are not doing enough. 

Most of you know that a couple of days ago, I met with another doctor to get a second opinion on whether it was time to call it quits.  My miracle drug that allowed me to come off the steroids, kick the insulin habit, and allow my bones to strengthen, is no longer providing me with enough help.  I am taking the most that can be prescribed for someone my size, but the symptoms are continuing to get stronger and more medications are needed to keep them under control.  My miracle drug is very toxic, especially at high doses, so it was determined that the risks no longer out weigh the benefits.  When I began the CellCept, my immunologist said the only other option of suppressing my immune system, if the CellCept did not work, would be IV Chemotherapy.  But immune suppresion is no longer a goal.  I am too symtomatic to put my body through the risk and stress.

I just started back to work a month ago to cover costs for my medical insurance and bills.  My doctors told me that coming off the CellCept while working will be extremely difficult, but I do not have a choice.  While I qualify for disability, as a married person, I would have a two year hold to get medicare coverage.  I cannot work and get disability, but I cannot afford my private insurance without working. 

Anyway, I have to admit that I am a little frustrated that there doesn't seem to be anything else to try to fight my disease.  I am scared about how fast it will progress without the CellCept.  And I am sad that I feel so alone.  I have amazing friends and family who have loved me and supported me along the way.  But there are so few people with my disease, and of those, so few are progressive.  I am alone in the fact that so few of us are walking around with an advanced case because so many have had strokes, gone into comas, or died. 

I am sorry that I am not strong enough tonight to assure everyone that I will be fine or to crack the usual jokes.  I am just too tired.  I thank all of you who have been praying and keeping me in your thoughts.  Call me, text me, email me...and lets do lunch or something.  That will bring me joy!      

new adventure

Two years ago this month, I was diagnosed with Hashimoto's Encephalopathy, however, May was the 3 year anniversary from when I first noticed that I was sick.  Those who were along for the ride two years ago know that I was admitted to the hospital with convulsions, trouble with my speech, memory problems and some mild paralysis.  The fact that I was already on thyroid medication probably is why I did not go into a coma like many advanced patients do.  We also began high dose steroids by IV within hours.  I was blessed to have received the care that I did when I did.  After a few months though, we knew that the steroids were making me very sick, but my every time we tried to come off of them, I would relapse and my condition would become worse.  I would develop more symptoms. 

After a trip to the Mayo clinic and another relapse, I began seeing a Rheumatologist/Immunologist who started me on Cell-Cept.  This drug that is used as anti-rejection medication has similar immune suppressing powers as chemotherapy.  I was placed on the highest dose possible and told that if I made it two years, than we might start discussing whether coming off this medication would be possible.  After another hospitalization and being told that my case is progressive, no one knew if we would see the two year mark, and if I did, whether we would be able to even consider removing the Cell-Cept.

If you read the last blog I posted, then you know that I will be looking at a pacemaker in the near future and another surgery around my birthday to remove abnormal cells caused by the Cell-Cept.  While my health situation is not getting better, I was able to return to work after being "retired" for a year.  I met with my Rheumatologist today and I was completely shocked by the visit.  We discussed all of the health problems that have shown up since I was there last.  We agreed to meet again in September.  He asked me, "Do you know what September will mean for you?"  I knew that September was the month I first saw him.  He said, "In September, you will have been on Cell-Cept for two years."  I had not realized that.  "Do you think the medicine is still helping you significantly?" he asked.  I fumbled for words.  "Well, I know it is the only way I was able to come off of the steroids," I answered.  "Yes, but do you think that it is continuing to help you?" he asked.  I have had relapses while on the medication without significant side effects, but we are pretty sure that it is not slowing the progression of my illness.  So...drum roll please...we are going to try and taper down the Cell-Cept to just a fourth of what I am taking now!  This will come with risks.  If I relapse on a lower dose, I will run the risk of speeding the progression or being left with lasting side effects, but if it goes well, then I should have much more energy, have lower risk of infection, lower risk for cancer, and over all feel better!

 I have been determined that if my illness defined me, it would be because of my strength and the new ability to appreciate what and who I have in my life.  The doctor told me how impressed he is with how I have handled all that has been thrown at me.  I assured him that I do not have a choice.  No one asked me if I wanted to be sick.  I also have two amazing children that need me to be strong.  "Oh Kim, that is not true," he said.  "I have patients with far less debilitating illnesses that crawl in a fetal position and feel sorry for themselves," he explained.  I told him that I have had my fair share of pity parties, but two years has made a great deal of difference.  He laughed.  As he walked out the door, he smiled and said, "I have had two shoulder surgeries this year and I am not where I want to be, but I look at you and strive to be as strong."  Luckily he had closed the door before I started to cry.  Wow...we have come a long way friends!