So, basically, he's stumped. He offered to refer me elsewhere, which I suppose is a nice way of passing me off because he has no clue what to do with me. This would be frustrating on its own, never mind the fact that I'm also suffering from pretty debilitating hip and pelvic pain on a daily basis as well. Oh yeah, I forgot to mention I was also diagnosed with IBS over the summer, although that may have more to do with refeeding belly/bloating than anything else.
Okay, cutting the bitterness now. Really sorry to whine about this all the time, I'm gonna try and tone it down in the future, but I'm stumped and frustrated and really depressed about the whole situation. Anyway, my point was that I've been doing a little research online (I try not to, because it generally just makes me freak out) and I'm wondering if my body is still just woefully out of whack. Regarding my weight/nutrition, I am basically at the lowest healthy weight according to the charts, although my treatment team's goal weight for me is XX lbs higher. I've been pretty significantly underweight for the better part of three years now, and probably undereating for longer. Even now, I'm eating an okay number of calories, but not a huge amount by any means, and my diet is extremely limited. I take calcium supplements, fish oil pills, and a multivitamin, although I don't always remember. Going to make that a priority from now on.
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I just refuse to believe that at (almost) 22 years old, my body defies all modern medical knowledge. It has been my experience that specialists often focus ONLY on their area of expertise - aka the eye doctor ONLY looks at the eyes - and fails to take into account the fact that I also have multiple other rare, chronic conditions going at the same time. So now, I guess, it falls on me to keep the big picture in mind. Does anyone know how to get tested for vitamin deficiencies? I'm seeing my GP tomorrow and want to have some specific questions ready for her.
Wondering if anyone has had experience with this, or has any other suggestions. Thanks, love you all so very much. I promise to be more interesting/entertaining/positive next time.
I was severely vit D deficient-- one of the handful of endo ppl I saw figures that one out. You might try looking at uptodate.com & see if there's any other tests/malnutrition related tests that cld be done for eye related stuff. Poss inflammatory stuff? My eye probs are all allergy/inflam related so I'm biased. AAFP is also a decent resource & your schl is prob more likely to have access to that. Good ouck w the GP.
ReplyDeleteIt sounds like a very frustrating situation, I'm so sorry that your body is just so confused! I know you're working hard and doing everything you can, so it's gotta be discouraging that your body just isn't cooperating. I really hope your GP can address some vitamin issues that might help your eyes and pain. I take a Super B vitamin complex and find that it helps a lot on top of the multi-vitamin that I take. Just wanted to throw my two cents in on that. Anyway, I hope the appointment goes well and that the GP can address your whole self, not just in pieces and parts, and maybe find a solution that helps multiple problems. Good luck to you, I'll be thinking good thoughts!
ReplyDeletehey, i know we're different, but i wanted to let you know that after I had been weight restored (at not the lowest healthy # according to charts, but actually weight restored and had been eating well and doing this consistently - very very consistently and eating lots of healthy fats and also taking the vitamins that I began taking in residential), about 2 years later, my eyesight reversed and I no longer needed glasses... The only thing any doctor has been able to attribute it to was improved sustained nutrition.
ReplyDeleteWhen I was sick, I had severe -- I mean, SEVERE -- dry eye. I couldn't wear contact lenses, I was using eyedrops every five minutes even while wearing glasses, and I was miserable pretty much always. I found an online dry-eye community and read about people who couldn't go outside because they had to keep wet compresses on their eyes to withstand the pain, and I was convinced that was where I was heading.
ReplyDeleteInterestingly, this problem manifested itself not when I was at my absolute sickest (at my lowest weight and barely eating), but during "refeeding." I spent WAY too long at an inadequate weight, with an inadequate diet and no period, and my eyes were terrible during this time. I tried everything -- different kinds of eye drops, different contact lenses, different foods (though not enough calories' worth!), even fish oil and multivitamins -- but nothing helped. After more than two years of this, I was worried enough about the effect of amenorrhea on my bones that I finally got serious about gaining weight. In the same month that my period returned, my eyes dramatically improved. Now I wear contacts every day, and my need for eyedrops is reasonable. My eyes were hurting my quality of life, and now they're not -- it's incredible. I've read since then that estrogen levels are related to tear production, and in fact menopausal women often suffer from dry eyes.
So I guess I'd work really hard on weight restoration and see whether other improvements follow. As I'm sure you know, the lowest "healthy" weight on the charts is almost certainly not an optimal weight for you. And even if you get your period (I'm not sure -- I'm not a regular reader), it could be that your hormone levels are still not quite right. Or maybe the estrogen thing is bunk, and what really matters is reaching your body's optimal weight -- which, for me, happened to coincide with resumption of menstruation.
I know this sucks, and I'm sorry. Try to let the possibility of improving your eyes (and resolving your other health issues, too) motivate you to recover.
I find it very interesting that iheartdaisie said that her "problem manifested itself not when [she] was at [her] absolute sickest (at [her] lowest weight and barely eating), but during 'refeeding.'" As I mentioned to you in my earlier comment, I developed all of my GI/autoimmunish problems after I had reached a "healthy" BMI and was in pseudorecovery. It wasn't until I was able to take the final leap into full recovery that the symptoms disappeared. It really is a cruel twist of the disease - that when you are at you're most vulnerable (i.e., when you're taking the anxiety-provoking journey into recovery), your physical health deteriorates. It makes it tough to believe that what you're doing will be the best thing for you in the long run.
ReplyDeleteI think some of what you're experiencing is definitely due to the refeeding process. It's hell and often feels MUCH worse before it feels better. But I ran across a book a couple years ago (though I admit I've only skimmed it) that talks about vitamins and nutrition in anorexia recovery and the necessity of vitamin supplements, etc. It's really interesting - thought you might want to check it out and discuss it with your doctor: http://www.amazon.com/Answers-Anorexia-Breakthrough-Nutritional-ebook/dp/B004SHEVVA/ref=sr_1_2?ie=UTF8&qid=1350914560&sr=8-2&keywords=anorexia+nutrition
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