Wednesday, February 17, 2010

There Might Be Hope for Me Yet

Yesterday, I stumbled across a Website ( that talks about assistive products. There was a government organization that ran clinics for creating and distributing low-vision aids from the late 1960s to the late 1980s but no longer exists, but they made available all their publication and information so people can benefit from their knowledge. ( Apparently, there are special “field-expanding” glasses developed for people with reduced peripheral vision, even as severe as tunnel vision. The assistive devices don’t restore normal vision, obviously, but can help in day-to-day functioning, even, in some cases (depending on the severity of the condition and on state regulations) driving!!!!
Of course, one of the worst problems I’ve had in coping with my eye damage is not being able to drive. I go in April to have my vision tested again, and I’m going to have my peripheral vision tested to see if it is sufficient as-is for driving, at least in some situations. But in case it’s not, I want to find out more about these devices. I’ve posted information and questions to the two online support groups I’m a part of to see if any of the IIH “old hands” have used any of these devices. I have to do more research and reading on this subject, but I’ve just been so excited by skimming this website that I can’t really take it in! I even had Mike look it over (without telling him anything about the website), just to make sure I wasn’t seeing what I wanted to see (that there may be a device to help me drive again!). He came to the same conclusion I had. Woohoo! I mean, before I stumbled across this website yesterday, I had been mulling over such assistive devices, thinking about my friends with spina bifida and my friend paralyzed from the waist down who use assistive devices to drive and thinking that it would stand to reason for there to be such things for people with vision issues. But then, I thought, no, it really wouldn’t make sense because those friends, although they have a hard time steering with their arms and hands, can at least SEE the road and the things around them without difficulty. But someone once upon a time DID consider us poor unfortunate souls. (I’m taking a moment now to sing and dance in my head at this joyous coming-together of older knowledge and newer knowledge!)

Also, someone on one of the support groups today or yesterday posed an interesting question about hormones and IIH. Specifically, she wondered if anyone had had their hormones tested. Apparently, talk of hormones and IIH symptoms comes up a lot in the forums, but the doctors just keep pushing weight loss. The problem is that there are so many people with IIH who lose weight and still have symptoms, and there are even people who have never been overweight but have IIH, so she’s going to actually have her hormones tested. A couple of us expressed a deep interest to keep posted. I mentioned that I have tracked my symptoms on a calendar and have found that the past two or three times when my vision seems to have gotten grainier and a little more limited, it happens when I believe I might be ovulating. This is difficult for me to ascertain, of course, because I have only had three cycles since all of this happened and I’ve not generally been regular, but if this cycle begins on Day 28 or 29, it would hold pretty well with my theory. Anyway, when I mentioned this online as a reason for her to go for it and keep us posted (because I can’t afford to go to the doctor all the time with no insurance), someone else said she has the exact problem with her vision and pain spikes WHEN SHE OVULATES. (And she’s never weighed more than 150 when pregnant.) It’s so good to know I’m not alone… And that my observations are actually showing me something worthwhile. (Also, this second woman had thought of mentioning the hormone link to her doctors at Johns Hopkins, but now that I’ve mentioned my issue, she DEFINITELY is going to bring it up at her visit this spring.)
Well, I may not be able to do much on my own, but I’m planting seeds and encouraging others, and maybe we really can get somewhere in knowledge about this condition. (No, of course I don’t think I’m the key to pulling together all this information, but if we’re all working together and I can be a fresh supportive voice, all the better.)

* Stringham high: Received two shipments of seeds and gardening supplies today!
* Stringham low: Still surrounded by snow!
* Stringham super-high: Stephanie might be able to drive sometime this year!

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