Adding and subtracting

Only at a dinner party where you've known the guests for a long time could you hold up your plate and exclaim, "I'm eating spinach salad!"

This happened last week when I ate spinach for the first time in six years. Not that I was craving spinach. I had to eliminate as many other iron rich foods as possible because of the ferritin overload that was sitting on my liver due all those blood transfusions I had.

I knew all the bad consequences of  high ferritin, which I believe was 7,000 or more (micrograms per liter), compared to a normal level of 11-307. I chipped away at this by getting therapeutic phlebotomies (having a pint of blood removed every couple of months) and dissolving five nauseating Exjade tablets in water most mornings, downing, and waiting half an hour to eat. The tablets bind to iron and remove it from the bloodstream. I took periodic breaks because it was so hard on my stomach. It was a big day a few months ago when I learned that I was "normal" and did not need to renew my prescription.

So, bring on the spinach!

Now, for the subtracting.

I have decreased from three Budesonide tablets a day to two because the glucosteroid has gotten my collagenous colitis under control. In a month, I will check back in with my GI doctor in a month and hopefully continue to taper.

Any day I take fewer pills is a good day.

Finally, I am now going only every other Wednesday to Boston for ECP, or extracorporeal photopheresis, the light treatment that has worked wonders on my skin...and improved my overall movement and tennis game. This is my week off.

I never thought I would say this when I learned in May that I had to do this, but in a (small) way I will miss it. Not the transportation or the big needle in my arm for three hours, but the cheerful, funny nurses and the friendly, always smiling, physician's assistant and doctor.

My nurse practitioner, Melissa, had told me that she sometimes goes over to the Kraft Family Blood Donor for a feel-good visit, and while at first I didn't understand why, now I totally get it.

What I have, and what I do not have

Today I got the diagnosis for what was making me so sick to my stomach for 20 days, once recently and once in May. It is collagenous colitis,  an inflammatory bowel disease occurring after age 50, in women more than in men. Leave it to me to pick up some weird new thing.

The good news is that it is not caused by graft vs. host disease as suspected, meaning that it would not help to increase my prednisone dose. My lovely new GI doctor said I did not need to take those courses of flagyl and Cipro, although I did need to take the non-absorbable steroid Budesonide, which I now need to continue using until December. Then I can taper.

It is set off my some unknown cause and unfortunately can happen again. But it is benign, so I really can't complain. Oh by the way I have lost about 10 pounds during all of this.

I know what finally made it stop. I kept canceling the pizza mixers at Enfield until finally, with my month running out on my free mixer, I decided to just go, even though I was still having problems. I told Karen at the club that I was going to eat pizza and it would cure me. And sure enough, that's what happened. A scientific study would not find a link, but maybe the pizza scared it out of me.

On another food note, I woke up this morning with a terrible headache. Tylenol didn't work, so I tried Ibuprofen, which finally did the trick. I think it came on last night as I was eating some vegetable tempura to take a break from the chicken stew that I had prepared in an effort to get me through a few days. Living alone, I am not so great about eating a good dinner as I was when Joe was here. I thought some avocado roll and the tempura from Iya Sushi and Noodle would be an inexpensive and healthy alternative to what I had on hand.

Anyway, my rational mind won over when I resisted the temptation to look up "Signs of an an aneurysm," although I just did it and saw that a sudden, severe headache is one. But there are others too, so I feel safe in ruling that out.

Instead, I searched, "Does Japanese food cause headaches" and saw that the miso and soy sauce served with it can be culprits. Since I have had no problems with soy sauce before, I figured it was the miso that came with my vegetable tempura.

So that is what I have and what I do not have.