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!
Hi Kim, It's Karen Smith - Glenda's co-worker/friend. It's been so long since I've followed your story, BUT that does not mean I'm not remembering you and your illness, and praying for you.
ReplyDeleteYour story and your strength continue to amaze me. I can somewhat relate to the part about "How can you handle this so well?". It really is because you have have Christ in your life, wonderful friends and family, beautiful children and ...what other choice do you have. Those were all my answers while I was waiting for my transplant. The difference is, my illness came to an end.. I got a great liver and I"m healthy now - just have to keep taking the meds.
I can't imagine your situation, with no one who has experienced this to the degree you have, no one to "compare notes" with and no 'end' in sight.
It sounds trite to say, but there are so many of us lifting you up to our Heavenly Father daily and praying for miracles. I hope in those moments of pity and despair, that can somehow comfort you.
I'm gonna say it "You AMAZE me!" and in your low times, dont let those words make you feel guilty for feeling down. I know I felt the guilt often, becuase those saying that were never with me when I was in the pit!
I hope you sleep well tonight and share your smiles with others as you can, hug your kids and enjoy life as you can.
Love, Karen