Amazing news…
After 8 months of dizziness… including two months of low-salt and diuretics, after an MRI of the brain and internal auditory canals with and without contrast, after two different electronystagmographies (water and air), the revolving chair test, balance testing, after four months of vestibular therapy, after a full neurological consult with a spinal specialist, after three views of neck x-ray, (to say nothing of the ER visit for chest pain and then the barium swallow), after a full neurological consult with a specialist in unexplained dizziness, after the tilt-table test, and after the nuclear testing of hemodynamics, blood volume and autonomic testing…
… turns out all I need is new socks. Yes. These fantastic socks, which strangle my legs from the knee to toe region, will compress my veins and keep the blood in my brain and make me not dizzy. And now I will get my life back and the world is new again.
Would that it were true!
[Collapses into hopeless sobbing.]
Let me back up a few days. On Tuesday, when I still didn't get the letter as to the results of the radioactive blood testing, I called the office. My dear friend Chynna said that lo and behold the letter was done and would be mail that afternoon! So that looked good for Wednesday. I sat in a snow bank near the mail box. And when it didn't come I was crushed once again. Thursday my mom and I were laying odds. Her money was on a hormonal malfunction of some kind (specifically adrenal exhaustion), mine was on Ehlers-Danlos Syndrome and overly stretchy blood vessels. But, whatever it was… soon we would know!
I felt sort of like a high school senior hoping for the fat envelope. I thought it would contain brochures about my condition, like "Ehlers-Danlos Syndrome and You" or "Living Well with Mitrial Valve Prolapse." But at the very least I expected a) a diagnosis; and b) a treatment plan of some kind.
And when it finally arrived on Thursday afternoon, and I saw at once that it was a skinny letter, I immediately knew that I was not going to get what I needed. I trudged the long snowy hike back from the mailbox dreading the total lack of anything useful that I would find in it, and then, that's indeed what I got.
It was the Al Capone's Vault of medical letters. It was not addressed to me, but to the vestibular doctor who kicked me to the curb months ago and who I will (one hopes) never see again. It was written all in doctor language that I could barely understand, even when I looked up all the terms. And in effect it said nothing… There was no ta-dah! We figured it out! Most of my tests were normal, which I guess is good. I mean, they didn't find something horribly wrong. So that's a good thing. Enclosed was a presciption for support stockings, too, but even that was only there because I directly asked for it. The dr had mentioned that I should have them after I flunked he tilt-table test, but at the time, let's face it, I was still having so many neurological– shoe-related– problems and had just barely mastered wearing any shoes at all, the idea of support hose seemed totally undoable.
But on Tuesday when I talked to Chynna, I said, hey, let's revisit that. I think I can handle it now. And she said they would throw a presciption in for me. (I have prescription socks!!)
What stunned me the most about this horrible letter was the total lack of interest in helping me or communicating with ME in any way. I was an afterthought. I was cc'd on the bottom. That's it. So I called Chynna back an said, "Well. I got the letter. What's missing in it is any sort of explanation as to what's causing my dizziness and any sort of plan for treating it." I was restraining the desire to scream at her, but I can see that she really does understand how awful this all is. She said quietly, even sadly, as if she knew this all along, "I'll have the nurse call you."
The nurse helped a bit. She explained that my blood moves a little bit too quickly around my whole body, and also that it does pool in odd places, like my abdomen, my pelvis, and my legs, when it really should be in my brain and heart. Also my heart beats a little bit weird at times. She allowed that all this might make me feel "crummy." But… I said… what do I do about it? She said to try the socks. I said I would but I could hardly see how the socks would change my life. She said she would talk to the doctor and tell her I'm miserable and see if there's anything else that might help.
Then she added, "Also you should be evaluated for Raynaud's Syndrome and Ehlers-Danlos Syndrome."
I said, "Well, who do I see for that?" (Like I need another SYNDROME!!! Or two!! For which there is no cure!! )
She said, "Hm…. I think it might be rheumatology… I'll check. You should see your primary care doctor…"
I said, "You mean, go see the doctor I see when I have a sort throat?"
She said, "Well, that would be a good place to start…"
I said, "TO START????!??!?"
[Leaps up to stomp on phone with both feet.]
[Blacks out from the sudden change in position.]
[Hits the floor unconscious.]
[Okay, not really. But I was pretty pissed.]
So, yesterday I went on an epic quest for the compression stockings. Rite-Aid. No. Walgreen's. No. They had some, in racks, that required actually kneeling on the floor to look at. Hecka dizzy. No luck. I then remembered this little pharmacy near us, the new sign for which was the subject of a full page article in our local monthly paper. It's the sort of place filled with old people things– walkers and commodes with handles, etc. Still, they didn't have the stockings I needed. But they did know the right place to send me.
That was my fourth pharmacy of the morning, but it was the place to be. I was dizzy as hell by the time I got there, which struck me ironic.They had a huge wall of compression stockings, and more in the back. They had a trained fitter. As I stood there filling out their little form, I started to black out. I caught myself and said, "Do you have a chair or something? I can't stand up this long." (the form was a one-page affair and very simple). They brought me into a little room and told me to take off my socks and boots. Cathy, my fitting specialist, measured my calf, ankle, and the height of my knees. Then she went away and brought back the stockings and some huge bright blue rubber gloves.
It was time for my "donning lesson." With great effort, wearing the huge nubby rubber gloves, she coaxed the strangulation hose onto my legs. You can't just put them on. You need a lesson. If you do it wrong you can tear them and make them run, or, worse, you can end up with it acting as a tourniquette. After she got one on, she had me try. It managed it to her satisfaction and she was willing to release the $60 socks to my care.
This lady DOES believe that within a week, they WILL change my life. Apparently the make my ankle into a funnel that shoots the blood back with the force of a fire hose. Wouldn't it be amazing if it DID work?? I have my doubts. I was wearing them all day yesterday and was dizzy as can be. But honestly, seeing as I have no other ideas at the moment, why not try it? Cheap compared to the mega-thousands we've spent on this so far. And no side effects, other than feeling that I've just aged by three decades. (It's one thing to wear them under my wool socks in the winter, but the summer…? Shudder.)
Meanwhile, the nurse said she'd call me back on Tuesday. I also plan to call the neurological god back at that time to revisit the Cymbalta. It occurs to me that while I didn't have depression at the start of this ordeal, now I kind of do. Perhaps that's the idea. They give you the depression through a Kafkaesque never-ending medical ordeal, and then they can give you a drug to cure it! But honestly, a magic pill is looking more and more and MORE attractive at this desparate point. And the neurologist, at least, seems to have some sort of interest in actually making me better. It's so refreshing!!
I did say I would try to migraine diet for two months, and see if it I was still dizzy. (and I am, and it's been ten weeks.) And I did say I was let the cardiologist route play out, and now apparently it has done so. So now I'm giving the socks a week to change my life. If the socks plus high salt minus all migraine triggers equals reasonable levels of normalcy I will then shift my focus towards accepting my dimished and greatly aged self. If not… I don't know. I have a lot of concerns about the Cymbalta or anything in that arena, but perhaps they can be addressed. It's hard to forget the words of trusted Vince, "We've really seen it help a lot of people."
Meanwhile, last night at bedtime I was gripped with a horrible realization: Cathy forgot to give me a doffing lesson. How do I get these crazy things off???