Cha-Cha-Cha Changes

Well, once again, it has been a long time since I have written. It is hard to keep everyone updated regularly when I am not totally sure what is going on. Number one, it has been just about impossible for me to look at the computer screen, my head hurt so bad and my eyes were so blurry. On top of that I was having a hard time thinking clearly, and I didn't want to say things wrong and worry people. I wonder if it is worse to not write anything or to write something and have people take it wrong?

So to fill you all in, I went in and saw my primary care doctor following the transfusions and the IVIg treatments to discuss my meds and what was going on with the anemia. I had been feeling really awful over the weekend but couldn't get in touch with my neuro down in boston. I felt that the cyclosporin was really the culprit of all this mess, so I decided to just stop taking it. But then I kind of freaked out doing something that huge without consulting a doctor and I ended up taking one more dose. Well, that night my blood pressure went up to 179/129 and you can imagine how bad the headache and stomach were with pressure like that. I was able to bring it down with meds and rest, but I was quite honestly a bit frightened. Consequently, I stopped the cyclosporin again on my own until I could get in to see someone. Turns out that was a good move because according to my blood work, if I had taken one more dose of the cyclosporin it was very likely that I would have gone into renal failure and needed dialysis. Lovely. So now I have the MG, severe anemia and my kidneys weren't working. Fun times for all. My poor husband was starting to just lose it. It can be very intense around here.

My primary care got on the horn with the Guru down in Boston and he said that the anemia is likely not from the cyclosporin, but the kidneys and the blood pressure and the headaches were. So out goes the cyclosporin for good. I don't know if anyone remembers, but cyclosporin was the last oral med left to deal with the MG. I have taken all of them, and for one reason or another, I couldn't take them because they shut down other systems in my body. Not trying to be a downer here, just reality.

Here we are: we have to figure out where the anemia is coming from. I have scopes set for Monday, and it is possible that they were right to suspect Crone's Disease last year which would explain the anemia through internal bleeding. If not, we have done some other blood work to find out if there is something else going on with my immune system- it could be that my immune system has now decided to attack my red blood cells as well as my muscles. Keeping my fingers crossed that that isn't the situation here. Regardless, there is the question of what to do with the MG now that I can't take oral meds anymore. I don't know if you all recall, but last year we were considering a treatment plan that included chemotherapy. This is now our last step. No doom and gloom here. This is going to work, folks. I am going to start after the holiday season so I don't have to worry about getting sick. We will have to manage the MG with plasma exchange until we can start the cytoxan because IVIg is tough on your kidneys, and mine need time to heal.

I had another 2 units of blood yesterday, and I am feeling much better today. The family is going to head up to Wolfeboro today to see a holiday parade- I hear that Santa is even going to be there. We are enjoying our time together- Family is the most important thing of all and we are blessed to have each other. Jason is the best husband in the world, my kids are great, both my family and J's family are supportive as can be, and we have awesome friends. I am going to be fine- Just bald for a while! I just know that this is going to do it. REMISSION HERE I COME!