So, the Big Appointment was today, and yes, Dr. Hay confirmed for me that the Western Blot was correct. I do not have Lyme. On the one hand, hey, no antibiotics! On the other hand, long climb back to health from the pits of CFS, and in retrospect, little wonder I relapsed when I did. I went on a drug (Remeron) that drove me into a nervous breakdown, both while I was taking it and during the withdrawal. During this time, I lost one dearly beloved family member; for those keeping track, yes, that makes two since July. I then went straight back into a full workload at school, which was stupid considering my body wasn’t even over the Remeron problem. Stress after stress after stress. Concentration and memory began to fail–I pushed. Hard. And collapsed.
Which is how it happened in 2008, too, minus the bereavement. And I had a good year or two between collapses.
The three biggest problems, as I see them now, have to do with
b) stamina, and
c) food. Which is likely related to stamina.
a) has turned out to require psychiatric help. Fine. I’ll go to a shrink for that, quite happily. I need non-behavioral techniques, I’m afraid. I’ve had ample opportunity to give the behavioral stuff a try and it hasn’t worked. I would like to look into hypnotism, provided I can be hypnotised in the first place. Anything to stop these panic attacks from keeping me in this house, out of my car. Immobile. No more of that.
b) Stamina! I hear graded exercise isn’t bad for that. Or at least that’s what I’m choosing to believe. It’s an excuse to join the nearest JCC or the nearest Y. I’ll get a family membership, so my mother can go with me. And how do I get out of that gym contract? [headscratch] I’ll have Dad look into it. I didn’t dislike the gym, but it didn’t provide what I needed. I want to do water classes, for example. I discovered, this summer at the lake, that I can still move quite well in shallow water; it also provides resistance, which gets me exercise, which made me crazy hungry that afternoon. Which means…
c) Food may not be as much of a problem! Though I must note here that Dr. Hay told me flat-out, “Try Marinol.” Ha, yeah, only being able to eat a full meal once a day apparently calls for the cannabinoids. She sees HIV patients with similar eating issues, I guess.
Here I must digress into the only really negative bit of the day: apparently my primary care nurse cannot differentiate between clinical anorexia (as in “symptom correlating to lack of appetite”) and anorexia nervosa (which I had. HAD. and now no longer do, or I wouldn’t be asking for freaking Marinol). Ugh. Of course the practice doesn’t deal in appetite stimulants. Of course none of them actually deal with patients presenting with true anorexia, where you can’t keep the weight on and can’t seem to eat enough to gain. I swear on everything sacred that I AM DONE WITH STARVING MYSELF. I loved my body when it got curvier and I love it when it’s slim and supple. I only care about my weight now because I’m tired of having multiple wardrobes based on what size I wear this quarter. I buy the clothes to fit me, but darlings, I really hate having to buy extra clothes that I can’t use.
So I took Dr. Hay at her word and called her back, since I had a problem.
Really, I can’t rave enough about Strong’s Infectious Diseases Clinic, especially the staff. I felt respected. Nobody thought I was nuts. Dr. Yaqub, the lucky, lucky fellow (as in woman with a fellowship) was warm and very caring; ditto her attending, the incomparable Dr. Hay, and I know she’s got a great rep in the ID community or I wouldn’t be so ready to trust her. These are the people I would be working with now, down another leg of the Trousers of Time. This is my favorite branch of medicine. I’m not going to diss them for, what, defying everything science tells them? I know how to blend allopathic medicine with CAM to get the best results for me. Doctors are not Lawful Evil. I promise. Not by default, anyway. You may know some mad scientists; that’s your problem. Also, wonderful interior design. I love the open layout and the glassed-in everything. It’s possible to get up and breathe in the waiting area. I guess if you’re putting a bunch of people with immune disorders in one place, duh, you want them to have elbow room, but the same was true of all the clinics on that floor. Someone smart designed that.
I have other hurdles to jump, but not tonight. Tonight, I breathe, and give great thanks that I’ve been told not to let anyone near me with a big fat spinal needle.