Here We Go Again

Well, did I not just say last week that we have been waiting for the bottom to fall out? I have been back down to Boston again- twice last week and once this week, with at least 2 more treatments to go.

It is time for me to stop kidding myself into thinking I can lead this normal life- I will be fine, as usual, but I need to face the fact that even when I feel good, I am not normal. Not like I want to be. Hey, I don't want to be a downer- It is just time to be a realist. The key here is to be a realist and somehow continue to be an optimist. I can do that. Heck. I am superwoman after all.

So apparently it is time for me to stop going to picnics when I am exhausted- let Jase take the kids and come home to a rested and healthier me. Let's face it folks, I can cover all this with jokes and meds and wine- all will give me some temporary relief- but they are just masking the fact that I will keep getting worse if I don't just STOP.

So the new plan (same as the old plan, really) is to get me back under control with Plasma exchanges, increase my cyclosporin level and continue to rest in the middle of the day. I am also supposed to never get sick. So I guess it is time to sell the kids to the gypsies. Although the heartbreak would probably be enough to land me 6 feet under.

I saw Dr. Gorson today, and the blood draws came back with everything looking good, except that my cyclosporin level was too low- which I am taking as a big positive. To be brief, that means that there isn't enough medicine in my system to keep me from going into crisis. I am overall feeling better, antibody by antibody! It will take some time for the meds to kick in, but the plasma exchanges should carry me through this rough spot.

As always, thanks for keeping up with what is going on with me, and we welcome your continued thoughts and prayers- put one in there that I will somehow after 12 and a half years learn to slow down!!!!

Addendum
I was just upstairs putting the kiddos to bed. Thomas was screaming his head off wanting me to snuggle him to sleep and Katherine was asking me to finish reading her book and say prayers with her. All the while, I am thinking about Jason being worn out from all the pressures of taking the kids for the day, working, doing the finances and worrying about his wife. I am also worried about my whole family and the strain this has put on all of them.

And then I started to get angry.

I just need to put this out there: THIS IS NOT MY FAULT. I didn't do anything to ask for this disease- and even if I am going to picnics or changing diapers or going up and down stairs or reading instead of sleeping (by the way, I am not always TIRED- just fatigued), this can still happen. Certainly, I need to slow down once it starts. I make jokes about being superwoman, but I really do try very hard to take it easy when I am feeling weak. The thing is, it is just about impossible to slow down when you have a 4 and a 2 year old. I just try to save up my energy to make it to some of the things that are important to me and to my children and husband.

I love my family more than anything in the world. I hate this disease more than anything in the world.
Posted by claire at 7:37 PM 0 comments
Labels: entry #2 tonight