Wednesday, April 21, 2010

Plans to return to NIH

I've been talking to Kevin about returning to the NIH for my one-year post protocol follow-up visit. It looks like I'll be going the end of June.

Some of the rules at NIH have changed, or tightened, depending on how you look at it. I used to be able to squeeze in a weekend in DC with my NIH visit. I have so many friends there, as well as family. NIH can no longer allow us to stay in town longer than we would if they're paying for the travel.

It's a bummer, but I do understand.

It's funny. During the protocol, as hard as it was to take the time off from work, I could hardly wait to get to the NIH. I was always worried they'd find me a little to happy about staying in the hospital. While I was working, however, frankly I never felt good. I was always under massive amounts of stress and every four months felt as though I was on the verge of complete and total exhaustion. Frankly being "in the hospital" was a welcome and much needed rest.

Now, although I'm happy to return to see everyone I know at NIH and to visit my favorite nurses etc, I don't have that same sense of needing to go to NIH to rest from the world.

I will be having a lung lavage on this trip. I've had one before. It's not exactly a fun procedure, but as long as they drug you well, you really don't care much. Grin!

Kevin was asking me about any changes in my health since he saw me last. I feel like since I left work my health is better than it has been in years. In some ways it creates a dilemma (for another post) about working as I do feel soooo much better. There are no huge differences. If anything, my high blood pressure has improved a lot so that, while I still take medication for it, I take much, much less than I used to. My acid reflux, while still a problem if I'm not careful, is much improved. My joints, while still achy more days than they aren't, are improved. It's a very mild ache typically - not really anything that keeps you from doing something. It's more of a minor annoyance that you learn to live with.

The one thing I expected would improve, but hasn't, are my issues around fatigue. It's much easier to manage when you work at home, but I'm still sometimes frustrated and amazed at how tired I can get one day, and how much different I can feel the next. Kevin has asked me to keep a journal for the next few months, so you'll probably be seeing more health posts. It's a practical matter. How many diaries can one girl keep? Grin! It's just easier to do it here.

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