Cutting Corners

(June 2, 2008)

First: About four days ago we received the letter from my Rheumatoid Specialist. If anything, the letter proved he didn't look at me at all--he said my right hand was the one that had been hurting, though at the time it was only my left hand that was severe. He also referred to my bloodwork in 2004, when actually it was my bloodwork from this April. He didn't correctly catalogue how my feet turn purple--he said they turn color in the cold, but really it's any time when I am sitting down, i.e. not walking. We're not sure, by the letter, if he even looked at my X-Rays. However, he did discuss my blood results for the most recent tests. I don't have Sceroderma. He admits that my Raynaud's phenomena is probably related to an undetermined rheumatic disease (which is more than the nurse who called us said). He also thinks I may be in the early stages of Sjögren’s syndrome (I saw in the clinic today that people normally develop it between 25-40). He recommends I see an eye doctor, an endocrinologist (thyroid doctor, in my case) and come again in three or four months. (Sjögren’s can seriously damage the eyes through Dry Eye, which I've had for a while--this will also help determine what I have through special tests the eye doctor can do.)

Second: In an attempt to cut corners, my mom took me to one of Laura's diabetes check ups (with an endocrinologist). Her doctor (Dr. C, we'll say) will be mine for the thyroid problem, and my mom likes her a lot. I instantly liked her too, because as soon as Mom mentioned I was getting a referral and started explaining, Dr. C turned to her computer to pull up my records. She immediately put me in for an appointment at the next avaliable time (which isn't till the end of the month, because Dr. C is going out for the month of June ). So that's set up.

Today I went to the clinic again. My usual clinic doctor is out for the month, so I saw another doctor. We talked to him about the several referrals, including getting a new Rheumatoid doctor. He was very good--attentive and willing to listen to the questions and explain what he thought. Mom went through the list of questions we had made. I think there's only a couple things worth pointing out here.

A couple of times over the last month or so, I've had severe pain in my kidney area. It normally happens from eleven in the morning to about one o'clock. I'll be hungry, so I'll go to have cereal or something. (I usually don't eat in the morning because of stomach problems.) As soon as I look at the box and think about eating, I start to hurt. I don't eat, and try to walk around or stretch to stop the pain. Very quickly it becomes agony to walk around--but to sit is complete torture. I find the only semi-comfortable way to deal with is is to lie in a stretch position I learned in ballet three years ago, and read a book. (Movies/TV doesn't distract me enough.) It happens almost at random, and sometimes a couple of days at a time. I've noticed that when I am sitting or lying in bed, I can often feel a slight aching in the kidney area all the time. We mentioned this to the doctor, and I think (it's all sort of blurry now) that he said if something was seriously very wrong, we would be able to tell. And otherwise, it should show up in a small test. He had me do the test again (though I've done it every time I see a doctor over the past couple of months). So... We'll see if anything shows.

Also, a few days ago, something weird happened to my heart. I was in the car with Mom and Dad, going to have a meeting/talk at McDonald's (a fun occassion). My heart sort of throbbed very hard, skipped and then beat quickly and weakly for several minutes. It was one of those things that, when you're aware of it, you go, "Oh, you know, this has happened a lot before--and I bet it isn't something completely normal. I ought to mention it." I also remembered that before I gave up riding my bike, whenever I did I would have blackouts. I would suddenly feel lightheaded and nauseous, and my vision would be covered my blotches. Eventually everything would go black, if I didn't stop to rest. Normally I would stop and sit down (I couldn't stand) for a few minutes. I remember once than my dad helped me up and onto my bike again, and had to catch me because I nearly fell over. I always thought I was going to faint, but I never did. I gave up riding my bike almost completely after that time. This, too, I thought worth mentioning. So, I did. The doctor listened thoroughly to my heart for a few minutes, then sent in a nurse to do a test on me. She had me hooked up to this big octopus of a machine (I felt rather like Frankenstein or Doc Oct) and the machine recorded my heartbeats. (I forget what it's actually called.) Nothing showed up, but my mom says nothing normally does--my grandpa had a heart attack once and they didn't believe him because it didn't show up on the machine immediately. The doctor decided to refer me also to a heart doctor for some more tests and possibly an ultrasound (which would be ubber cool).

So now I have referrals to an eye doctor, an endocrinologist, a heart doctor, and a Rheumatoid Specialist.