Monday, October 29, 2007

A Long Break

Okay, so I haven't written anything in a while. So sue me.

Lots of stuff going on. Before our trip to England, I was having some gastrointestinal distress. Like I was throwing up. Like every day. Okay, maybe not EVERY day, but multiple times per week. And I wasn't sick. It was just kind of a weird, sudden overload sort of thing. And it didn't matter what I ate, or how much.

In early September, I was complaining about this to another pal with PH (and I had made an appointment with the GI guy) and she said that those were the same symptoms she had when she was taking too much Revatio (the PH code name for Viagra). I asked her how long she'd been taking the high dose when she got the symptoms, and she said about 100 days. Wellllll, I'd had my dosage upped in May from 180 mg daily to 240 mg. About a hundred days earlier.

I shot off an e-mail to my PH specialist, asking if I could lower the dose since it didn't appear to be helping any, and it might be hurting some. He shot back that that seemed entirely reasonable to him, and I lowered the dose, and the symptoms got better. But not gone.

I saw the GI guy a few days later, and he said he thought it was probably gastroparesis, which is a semi-paralysis of the stomach caused both by autonomic neuropathy in diabetes and also several connective tissue diseases. Since I appear to have both, he thought it a good bet. So, the only real treatment is eating small meals often.

I have discovered the joys of the hors d'oeuvre menu.

In addition, I visited Mister Endocrinologist and my HbA1c was 5.8, which for those of you who don't know, means that yours truly has blood glucose under such good control such that it's nearly unmeasureably good. So, as a result, he is taking me down off the oral meds for diabetes, because they are both hard on the kidneys and stomach, and upping the insulin dosage. This is a little tricky, but I'm working it out.

Finally, I went to see Mrs Rheumy #1, my old original rheumatologist. I have two telangiectasia. Two. Most people who have them have hundreds or thousands. I have two. Telangiectasia are little red dots, maybe purply, which are visible on the face and hands, especially around the mouth and on the cuticles. They are cause by capillary malformations. They are the "T" in CREST syndrome, or limited scleroderma. I have one on my left ring finger cuticle, and one on the left side of my lower lip. Whatever the connective tissue disease is, I have a very wimpy case of it. Oh, except for the PH part.

I went to her because I was hurting all over, hard to get out of chairs, etc., and thought that it might be rheumatoid arthritis. She says it isn't, that it's bursitis in my hips. Challenging my emerging hula career, is she? She said I need to wear my good shoes and get orthotic devices. I told her I had some already, and she said I needed to wear them all the time. So I had to go shoe shopping (first time under a doctor's order!). And while they didn't have any pink saddle oxfords, they did have some very cute ones that are very comfortable, even with the orthotics.

So now, it is happy birthweek to me. I try to celebrate happy birthmonth, but sometimes that is very hard, so I do make a huge effort to have happy birthweek. When one is born on Hallowe'en, one needs to do something to set the birthday apart from the holiday.

On Sunday, we did the happy birthweek brunch at FarrahOlivia, which if you are a foodie like myself, you will recoginize as the restaurant of Morou Ouattara, who was sadly eliminated from The Next Iron Chef on the Food Network last week, unfairly and undeservedly.

My brunch was simple and wonderful. I had a tomato salad, and this is how it was constructed. On a very thin circle of puff pastry (about four inches around), smeared with a mild goat cheese, cherry heirloom tomatos were halved, topped with a balsamic vinegar syrup and spicy sprouts (maybe radish?) and garnished with a saffron and cayenne flavored salt on the side. Amazing.

The captain had flame-grilled asparagus, topped with grated boiled egg, bacon and a hard cheese (parmesan-like, but not).

I had bacon and eggs, well done but unremarkable, and the captain had a ham sandwich with shiitake mushrooms and truffles and a flavored mayo on the plate. Coffee was very dark roasted and served in a french press.

Delightful!

We have more birthweek (and birthmonth after) activities planned. Stay tuned.


3 comments:

Colleen said...

Happy Birthday, Ellen! You are such a fun person to know, and although we share a common crappy disease, you make me laugh and sometimes forget that I have it. Thanks for being a good phriend! I hope you enjoy your birthweek!
Colleen :)

Annette said...

Well, I guess I better sue you because I stopped checking your blog on a regular basis, since YOU WEREN"T WRITING!!! I'm thinking that the physicians in your area must all be driving nice new big cars! You poor thing. I don't know how you keep everything straight. It's a good thing that you're such a smart woman. I'm afraid I'd be screwing up all of the medicines and dosages!
Happy birthday, you sweet, young thing!

Jen said...

Hey Lovely Lady,
Well just stopping by to check your blog and nothing real recent.
Is that old age creeping up on ya??j/k..
Hope you are just busy, missed you in chat tonite.
Take care,try and stay out of the docs office...
Jen