It’s been a heckuva week in Bath, Ohio. I know that Hurricane Sandy really hammered the East Coast, and we are 500 miles away. I know that many people have lost their homes, been flooded out, and some have even died in this storm. So I have to count my blessings that we did not lose power for more than a couple minutes, and no major trees on our property went down and we are all warm, dry, safe and well.
Nonetheless, from what I can gather, things have been more messed up here than on the Upper East Side of Manhattan. Cleveland got blasted with those wild Sandy-fed north winds off the lake. Trees were down all over the place and that meant lots of power out; something like 150,000 customers are still in the dark. Among those places without heat or light is in fact our school. We have not had school in session since Monday. Also, needless to say, the weather has been horrendous. And Ben had gone out to Chicago on Sunday night, and then got stranded there on Monday night when the Cleveland airport was closed. Tuesday morning he did make it home, but had to go almost directly to work. Then an elderly family friend died. So now he has funeral-related things to deal with.
The net result is me and the boys trapped in a house for days on end.
We just got word that school will be closed again tomorrow, too! And now, due to Halloween in the mix, tons of candy just got poured on the flames. I am thankful for RedBox, which has provided me with the Three Stooges video that now has tamed them. And, just at the worst possible moment, National Novel Writing Month starts today. It’s November 1 all the sudden! So words must happen, no matter what else goes on.
And… today was my big new doctor appointment since I got diagnosed with the MTHFR thing. The lady is called Dr. Cheryl, and she works in a little blue cottage in Richfield. Last week I filled out a 15-page new-patient form, and then ended up writing an additional 4-page essay to explain what the F*ck has been happening with my poor, totally messed up self. This lady is very different from the Cleveland Clinic and the whole round robin of medical craziness. Unlike all those highly specialized and brainy people at the Clinic, she grasps that the leg bone IS connected to the knee bone. I’m so tired of doctors that just only care about their one part of expertise. The brain guy doesn’t care about the heart, and the heart guy doesn’t care about the uterus, and the uterus guy doesn’t care about the stomach and so on. But I am actually ONE person, one entity, one sentient life form, and all these parts actually interact and affect each other. Each one does not exist in its own little island, severed from all the rest. All the more so with a weird background ailments like POTS and MTHFR.
Also, it was just so much more homey there. Instead of a collection of giant buildings extending for blocks in all directions (the hand building, the eye building, etc.) it’s a tiny charming– human-scale– cottage with flowers in front of it. Inside I was directed by “Grandpa Money” (a sweet old guy who volunteers -!!- there) into a bedroom with a big comfy chair in it and a mural on the wall. It had 1800s-era wood trim around the doors and the floor was very far from level. The mural was a seascape by a moderately skilled painter. (She got the light right, the clouds were pretty good, but the kites were flying the wrong direction, and the kite strings were as thick as a man’s arm.) All these are elements that endeared me to the place at once. Dr. Cheryl herself, a perky young woman with an enormous pregnant belly out to here, further made me feel that I was in a whole different kind of place. And… she personally has POTS. I can’t emphasize this enough. She is one of us!! She gets it!!
She went over my massive dossier and asked me to clarify this and that. We talked about various tests coming up, and ones I’ve already had, and ones I haven’t had that she wants to get now. We talked indeed for a full hour. I never got the sense that she had to go, or that I was one of ten patients waiting for her (I was the only one there), or that there was any particular pressure or rush about it. This is a stark contrast to other appointments where I’ve actually had to physically CHASE doctors down to get a few more critical pieces of information, and they are running away at full speed.
Okay, so what’s the bottom line? Well, the main thing is that I need to get these nutrients into my body in a way and a form that they can be utilized, despite my genetic issues. We need it to get into my body already methylated (whatever that means, I take it to be like “ready to use”) and to bypass the questionable digestive system. That means… gulp.. shots. I have to give myself shots. Okay, only twice a week for three months, not so bad, right? And a TINY needle. … But she did mention that it kinda burns. Luckily (?) the compounding pharmacy in Cleveland where they make this stuff is … you guessed it… without power. So this will be a few days or maybe even next week before I get my hands on it and get my head around the idea. I’ve never given myself a shot before. I guess you just sort of DO IT. Also she gave me a (oral) supplement to help me get ready for and recover from my impending surgery on Nov 14, and I started taking that today.
For show and tell, I brought in literally a shopping bag of supplements from my cupboard. My mother gives them to me, and now and then I buy them when I’ve read something or other. They tend to accumulate. They drive Ben crazy. I put together a small baggie of what I’m actually taking now, and dragged in all the rest so she could tell me what to do with them. One by one, she patiently looked at them, read their ingredients and sorted them into groups. Some I could keep for the days when I can’t stand to do my shot. Others I should not take until after my surgery because they might make my bleeding worse. Others I won’t need. Only one actually alarmed her: niacin. She said I should throw it away! This apparently because it dilates your blood vessels, which is basically the last thing a POTS person needs.
We talked about the exercise problem. Yoga? I said. No, she said. Pilates? No. No, you could really pass out. She said I should get in a pool. Not a warm pool, nor a deep one. Not past my chest! Not swimming! Just walk in chest-deep water. The water will compress the blood vessels and make it easier to keep blood going up to my brain. If I don’t try to swim or go over my head I am unlikely to drown (my concern about swimming=passing out and quietly slipping under the water while the lifeguard is doing her nails), and with all that lovely pressure on my veins I will have plenty of oxygen in my brain! I will feel better while exercising that way. She also said that the Clinic has this (insane!!) inpatient rehab thing for people like me… and that it works well. Six weeks, inpatient!! Living at the hospital??! Gaah. No!! She could see I loathed this idea and said to just keep it in mind.
She also said that she doesn’t think I have endometriosis at all. It doesn’t hurt to check. But her thought it that it’s MTHFR plus too much estrogen, both of which she can treat. She also mentioned that menopause and POTS is hell on wheels, but that she can help manage it when the time comes. So I guess that’s something to look forward to!
And she thinks I should not try to get off the Cymbalta any time soon. It really does help with the symptoms for lots of people and lord knows it’s helped me. I’m at a comfortable cruising altitude of 30 mg a day. She said that if my husband thinks I’m too spacey, “Tell him to try going through the day with a constant head rush and see how he likes it!” Ah… so nice to be understood by one who’s actually lived it!!
So. Step one, is do the shots for the next three months and then see what happens after that. Maybe I will need to keep going on the shots, or maybe will be well enough to switch to normal-person oral supplements. She does think it will help me feel better. Maybe even much better, although I dare not hope too much.
Meanwhile… back at the Clinic: I have the stress echocardiogram coming up on November 12, with a cardiologist appt to follow the same day. Then the endometriosis thing on Nov 14. She pointed out that it’s much harder to recover from surgery with POTS than without, and to expect it to take a while longer than they say it will.
And then…? Onward. All in all I’m optimistic about this. I think this has been useful. I feel that we are getting closer, ever closer, to a real solution.
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