July 7, 2011

Latest Update:

So they have officially put me on "maintenance" drugs and declared it remission. I really hate to say the word for fear it will change, but hey, they are using it! They have changed my meds quite a bit, so I am a little apprehensive that it won't continue to be an easy road. to begin... they added one more medication: cytoxan, so I did my usual research and yikes... one of its side effects is you lose your hair. So in total anxiety, fear, and worry, I called the doctor and said no way am I doing this. I have come this far without it happening and it just won't work for me. She assured me that the dosage was so low that it wouldn't happen. Well the warnings say 3-6 weeks and I am approaching week #3. She also said that if my hair does start thinning they will readjust the medication. Phew!! (But I did check out wigs and the one I want is $1100.) wonder if Medicare will cover that??? So I am now weaning off of the Prednisone from the awful May I had. It takes 8 weeks to withdraw from the drug with little increments every 10 days....Oh the fun of medications. NOW with the cytoxan, they feel I don't need the methotrexate, which is what caused the problems of May (taking me off the methotrexate). So am I nervous...you bet. I am slowly reaching the limit of trusting everyone to know what medications I take. Therefore, I bring the list and check on which one is for what and dosage and days- to be sure I am taking it then correctly. But luckily I am down to only three medications, of which one is only once a week.

So things are great. I feel good, not great, energy is still a challenge, but all the numbers keep going up, which everyone finds amazing. Even me! The neuropathy in my left hand fingers is still there, so I am careful not to pick up anything hot with it. But it is a nuisance. so I read and read about what helps it. B12, acupuncture, massage - there is a remedy out there for everything.

So that is the latest. Thanks to all of you who read this and follow it! love you all....