$@*#@!&*#$ (When you can't say anything nice...)

My amazing cousin, Laura, told me last week that I don't always have to be okay...so here is some honesty:

I bawled like a baby the whole way home today...but when I could no longer see the road because my eyes were swelled shut...I decided it was time to buck-up! Things could be worse...I could have to wear tights to work everyday!

Seriously! We start the appointment with the scale. That normally would not bother me, but it revealed that I have gained 15 pounds in just over two months! Holy cow batman! The doctor was sweet enough to say, "Well you don't look like someone who has been on 60mg of steroids for two months. You must not have gained much weight!" I started to feel better, and then remembered how much money he is getting paid. Of coarse he was nice!

He reviewed my file and we discussed two drugs he was interested in using. He gave me the laundry list of side effects and risks. "These risks and side effects are very serious," he said. I smarted off and said," the encephalopathy isn't a walk in the park either!" At least he has a sense of humor. He informed me that he wasn't giving me a choice, he just wanted me to know how unpleasant it will be. The one we chose is pretty strong. Chemo drugs are the only drugs stronger. The plan is to be on them for 2-3 years, and then see if I can come off of them.

There are lots of "unknowns!" My doctor made me feel confident by assuring me that he isn't an expert on my disease...because there haven't been enough cases for anyone to be an expert. Out of all the research he has done, he said the best information came in the format of a doctor noting in a journal, "Hey...saw a crazy patient that I think has Hashimoto's Encephalopathy...and think this drug might work." He found a possible 120 cases in the world ever reported...and every patient responded differently. He promised me that he doesn't know if this drug will work, or how much we should try, or what will happen. He doesn't know if I should work, exercise, or stand on my head. We are on a "let's try and see" plan.

Here is the good news...not: The Mayo Clinic thought an injectable drug might be easier on my stomach and intestines. The drug we are using does not come in that form. But, my doctor said that it wouldn't matter, because the damage to the stomach and intestines starts after the drug is in the blood stream...therefore wouldn't matter what form I receive. Awesome! He also said, that it will be at least 3 months before I can be off steroids...if I will ever be able to come off them. This was right after he said, " It is not a matter of if the steroids will kill you, it is a matter of when." My pancreas is already damaged and now my bones have been stripped of calcium. I start calcium replacement tonight. The label says, "Do not take if you have stomach, intestinal, or kidney problems!" Doc found this slightly amusing...and reminded me that we don't have a choice.

I will have to get a pneumonia vaccine, flu shot, plus the swine flu shot. They all come with risks...but none are worse than mushy brain! He said to avoid sick people, but there was no point in living in a bubble. With two kids, I am going to be exposed. We will just have to roll with what ever happens.

I keep reminding myself that God will not give me more than I can handle. He doesn't promise life will be easy for anyone, but that we are not alone. With so few people who have walked in my shoes, this is hard sometimes. I have found myself mourning the life I had and plans I had made just two short months ago.

I love everyone who has been praying and offering support. It really is what has given me strength. I haven't had the time or energy to thank everyone properly, but please know that nothing has gone unappreciated.