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March 02, 2009

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kiminfla

I've felt for a long time that a place like Mayo or Cleveland would be a good match for you. I'm sure I've written that to you before sometime. Of all the "sick" people I've "met" since my own illness journey began, you're the most likely candidate, imho, for a Dr. House - type, multi-specialty diagnostic workup.

From my own experience, trying to coordinate all the -ologists and all the opinions (or lack thereof - another topic entirely with the "I don't knows...", and come up with something conclusive is just not easy. Hasn't worked for me yet, although yes I have a definitive dx of CM, I still have a lot of unexplained whatever...

And your situation is similar to mine, only magnified to the nth degree, so I can only imagine the frustration you deal with, all while remaining "unwell".

Please do keep us updated as to what you decide to do. Cleveland Clinic has an office here in Florida and I might just get there someday yet!

Be blessed my friend, Kim

Queen Slug

Well I think Mayo would be a good place for you to be seen. I went there for me EDS dx & loved them. I am thinking of going to the hand clinic there for my hands since my OT stinks.

If you go to Mayo in MN let me know & I'll buy you a cup of tea & tell you the good (& but cheap) places to eat. ;)

virginia bennett

OSM, you know my situation...I went to NY alone 3000 mi from home, and did have a bad medical reaction, it was not good!!! Was I ever messed up, but God watched over me. (Thanks for your visit! Again)...

I do not suggest you go alone if you can help it. Even when I went for just evaluation, I did find someone online (Betsy, remember?) to meet me there and help me go thru the ropes...If you have someone online even who can go with you, or meet you there, and you can doing the flying alone...try to make that happen! I've been thru it, so that's my take on it.

I'm so glad you never give up! Fight that good fight, for your children, especially. I know that is what keeps you going! To be their best Mom and to find out anything else congenital you have...

Hi to Kiminfla!! wave, wave...miss our visits!!

love you, OSM, and I am praying this all just falls into place. I'm glad you are starting the process by allowing yourself to consider it. And find that online friend to meet you there, and spend time with you etc. You've done it yourself for so many.

love, your best WA friend!

One Sick Mother

thanks you guys so much for your support. It means an awful lot to me.

QS, I may take you up on that offer. ;)

OSM

fridawrites

I think one of the clinics might help. As far as NIH goes, don't feel bad and it's possible your doctor wasn't discrediting your severity here--if you look up the NYT article on rare diseases/NIH, the woman in that article shows symptoms unlike any that have ever been seen before. While yours are severe, I hope they're not that bad, though they could be--I'm newer to your blog and don't know. The endocrine problems are really unusual, though--maybe Mayo or Cleveland can advise in this regard after they've done some testing. They could probably pass on a better, more comprehensive picture anyway.

Hmm, one of my bosses (in the medical field) advised me to go to Mayo in my early twenties, thinking there was some bigger cause for everything. Maybe I should have done so then because I've turned out more expensive than that trip would have been.

My experience is that men get prescribed painkillers and other meds very readily--even in cases where they're not really needed but are minor symptoms.

Lisa Moon

Hmm, just reading this over, I felt like there is a shift happening for you - as though maybe you're coming into the 'right' time, or that things are falling into place...? or that they're NOT, so this is the next and most logical step?

At any rate, what I'm trying to say is I get a gut feeling reading this over that it's what you need to make happen for yourself, to get some answers, some treatment.

I've read, too, that men are more readily presribed painkillers, and stronger ones, with little questioning. It seems the line of thought is that if it's bad enough for a big, tough man to complain, then it must be akin to losing a limb. Nothing like good ol' outdated sexism to brighten your day, eh? Most of us women would agree, if men had to spend a few days in our bodies... dealing with menstruation and it's lovely cramping... then perhaps a nice day or so of childbirth... ahh, yes.

Sorry, got off track. ;)

Lisa Moon

Erm, yeah. So I was trying to be encouraging, like "Wow, it sounds like this is *right* for you - you know, when you just... KNOW?"

I hope it's something that would help you very much as I can only imagine how frustrating it must be to go on and on like this with no real answers.

In fact, I think you might consider working on your own doctorate of some sort; it certainly sounds like you've far more knowledge than most of these turkeys you've had to deal with!

*hugs*

fridawrites

I agree with Lisa--you're very smart and show better reasoning about your conditions than the doctors, who are often contradictory. The Mayo/Cleveland people can probably put things together a lot better and give a better perspective that your drs. can then work from--i.e., you can always refer back to what they wrote if they start going contradictory again.

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