To paraphrase the late Amy Winehouse, “Tryin’ to make me go to [cardiac] rehab and I say, okay, okay, okay.”
This week I entered my millionth and hopefully final phase in the great adventure in dizziness that began lo these 3 and a half years ago. The first part was to reduce my dependence on Cymbalta. My primary doctor, who I suspect is herself has an eating disorder or very least hysterical about all things weight-related, insisted that Cymbalta is the cause of my recent admission to the behemoth community. My husband, who I love, complained that it made me even spacier, when I am already a touch too spacey for his tastes. I myself had to wonder whether after two and a half years on this drug, my poor “hot” brain has cooled enough to go out on its own. I just wanted to know whether I could fledge.
[I’m raising a baby cedar waxwing at the moment, and the bird/nest imagery is top of mind.]
So I went in and pled my case to the neurological god. He quibbled that Cymbalta is technically “weight neutral,” and that the spaciness is merely Jimmy Buffet syndrome (admittedly, Jimmy Buffet Syndrome– JBS– is not actually bothering me, the sufferer. I’m very content living on the outskirts of Margaritaville), and that, most importantly, if I go off it I may have a really bad relapse.
So we agreed to drop it by half, 40 mg to 20, and see where that leads us. That was about 10 days ago. The first night I thought I would surely die and/or scratch my skin off entirely. I had a few days of excessive weepiness but not too terrible. But basically I said to myself, Well, that wasn’t so bad.
Then I hit the pain part. Knees, feet, hands, back, etc., etc. But especially feet and hands started feeling like arthritic crabs. Is it normal at 45 to say “ouch” with every step up or down stairs? I mean, verbally? So finally at the 7-day mark I called the neuro to ask for advice. They said to call my primary. Long story short, my primary said to split the difference and change it back to 30 mg. Her theory is possibly that my severe vitamin D deficiency (another topic) is making my joints hurt, and that the Cymbalta was masking it, and that when it was reduced the joint pain that was already there just became much more apparent. So mega-doses of vitamin D, and in the meantime, more Cymbalta. I’m all for going back up to 30. Maybe it was just too big a leap. I start the new dose tomorrow, so we’ll see where that goes.
Anyway, in the meanwhile, I started cardiac rehab finally last week. This was delayed for six months, six February, because I was too anemic for it. Whatever! It took ages to get the hemoglobin situation to improve, but finally it did, and so I finally got to go do a stress test at the Preventive Cardiology Dept. In a word: it sucked. I guess that’s two words. You get the idea. Lots of wires and what not, and an overly cheerful friendly guy and a brusque nurse and lots of machines beeping. I loved the little chart on the wall with pictures depicting a happy fellow lying in a hammock (1), then striding along happily (2), then gradually getting more and more stressed and exhausted until at 10 he’s doubled over and near collapse.
I had to walk on a treadmill, wearing all the wires and what not. Everything went fine for 7 minutes or so. They gradually increased the incline and I strode along happily in the 2-3 range. Then quite suddenly, I hit 10, started to feel very faint, started to hear the nurse commanding me to keep my eyes open, started having trouble breathing, then compounded by crying, fear, embarrassment, dread of dying and an extreme overwhelming desire to lie down at once. This they would not let me do. I had to walk, unable to see, clinging to these little handrails, for a few more minutes. Then sit for a while. And then, finally, I was allowed to become horizontal in my favorite, happy and safe position with lots of oxygeny goodness. This is why I can’t go to the normal gym! This is what it does!
What happened was that once my heart rate hit 160, my blood pressure unceremoniously plummeted by 50 points. This feels very, very bad when it happens. I queried whether this in any way happens to normal people and was assured that it does not. I can say that although the experience was dreadful in itself, I’m glad they got to see what I’m talking about, and it was verified yet again that I am not making this up and am not– repeat not– crazy.
So now I’m in the posse of very queen-sized black ladies, old white men who have had bypass surgery, and various other folks who are not in these categories. There’s a thin and fit black guy who wears a hat like Samuel L. Jackson. A few white ladies of a certain age. Some very spry-looking people. Lots of slim exercise physiologists in white coats. Everyone wearing complicated heart monitors and everyone’s heartbeats on screens. Nearly a 1:1 ratio of white coats to patients. Little blood pressure monitors on wheels. I was feeling pretty depressed about all this. How far away it seems to the days in 2009 when I was doing my BOSU workout with Pilates on alternate days.
Then I noticed one 20-something white woman who is totally fit and slim… ah, but she was wearing the mark of my people: support stockings. So I asked her, “Hey, do you have POTS?… I see your stockings.” and she laughed and said yes. We chatted quite a bit that first day. She told me how she had a sinus infection that somehow felled her completely. (I said mine started with a sinus/ear infection too!) She got POTS in April, and now is on disability because she can’t work, and had to move back in with her parents because she can’t be alone for fear of falling. Yesterday when I got there I found that my new POTS buddy was in really bad shape– ultimately she was taken out in a wheel chair to be collected by her mom!
My workouts, if you can even use that term, consist of gently paddling my feet on a recumbent bike or stepper thing. They want my heart rate to go up to around 130-138, but anytime I crack 110 or so, my BP starts to drop. 90/60 or that sort of thing. I start to see pretty white spots that aren’t there and we have to slow, slow down. Even so I made a touch of progress– from 10 minutes to 30, albeit on a pure wimp setting. Ben has been a great champion of supportiveness, reminding me that three years ago he was shuffling like an old man in his slippers and now he’s about to run his third half-marathon! I try to keep this in mind. You gotta start somewhere.
It’s a pain to drive all the way up to Cleveland M, W, and F., park, deal with the Clinic, etc. But one good thing: I feel secure there. I am not afraid of the bad thing happening again, because if it happens, which it probably won’t because they are so on the case, I’m in a place where a) I will be safe; b) people will know what is wrong with me and will take care of me, and c) I won’t be embarrassed because my compatriots have all BTDT themselves.
It’s a bridge, I hope, between this situation here and getting back to normal life. Ah, my BOSU… I never thought I’d miss you so much!! Someday we will be reunited.
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