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Still wandering around lost

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#1 debo_92


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Posted 16 September 2009 - 03:01 PM

I am still a newbie here and have only posted briefly previously. I have taken time to read many of the posts though. I find courage in those members who write about their struggles first with a diagnosis and then with coping when the diagnosis is made and treatment begins. I find camaraderie in those who are like me...waiting and wondering if a diagnosis will ever come.

I am still without insurance so I can't even work toward a diagnosis at this point. I keep an eye on my symptoms but not so much that I will drive myself crazy. I feel like focusing on all visible signs that appear while knowing I cannot schedule a doctor's appointment will only serve to make me feel worse. Who needs that?! I wonder though if I will remember enough of the symptoms that I am trying to push to the back of my mind.

I have recently started having these almost "stinging" pains that fire throughout my entire body. There are times when my ankles and feet are so stiff and so much pain is in them that I can barely walk. My hands become so stiff that I feel like I shouldn't even try to move them; or if I can move them their use is minimal (can't open jars, etc.). My pain is sometimes so severe that my sleep is disturbed (sometimes for multiple nights in a row). I try to tell myself that maybe I am aging quicker than others my age. I have had strange rashes and my mysteriously appearing bruises and spots keep coming. Scratches and minor cuts do not heal quickly and months later the scarring is still visible. My skin on my hands still splits spontaneously. I just wonder if I am crazy sometimes.

My Raynaud's is as severe as it has ever been and the thought of winter coming is scary this year. My heartburn is poorly controlled even though I take a prescription for this. My swallowing difficulty remains unchanged (occurs on occasion).

I wish the very best to each and every one of you. ;)

#2 Sweet


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Posted 16 September 2009 - 03:25 PM

Hi Debo,

I'm sorry you are hanging in limbo. As you know many here are in the same spot. I'm worried about you not seeking care due to lack of insurance. There are Community Health Centers around the country that are there to care for those in situations like yours. Have you checked to see if there is one near you? If you call the Health Department in your area, they would most likely know.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 16 September 2009 - 03:27 PM

Hi Debo,

I'm sorry you are still dealing with symptoms but unable to pursue a diagnosis right now. I went many years without health insurance, and it was not a pleasant thing at all.

You might want to take a calendar, and just jot down some symptoms on it, noting when they start and when they fade or worsen. Don't put a ton of effort into it, just enough to jog your memory when you finally get a decent consultation.

For Raynaud's, why don't you start a glove collection now? Maybe knit or crochet or stitch some, or haunt the Goodwill stores for cheap ones. Then you'll feel a little bit prepared, and have gloves to match a variety of outfits this winter.

Anyway, hang in there, we all feel for you.
Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Amanda Thorpe

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Posted 18 September 2009 - 09:31 AM

Hello Debo

I am sorry you're in such a position, as bad as being told you have sclero is it must be equally hard not knowing what is causing your symptoms and not being able to pursue treatment.

I hope you find a way around this and take care.
Amanda Thorpe
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#5 Kamlesh


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Posted 18 September 2009 - 12:02 PM

Hi Debo,

I have Reynaud and it is managed very well with Nifedipine (30 mg).

Just avoid grapefruit or juice while on Nifedipine.

Kind regards,


#6 Jeannie McClelland

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Posted 19 September 2009 - 02:20 AM

I know that in Colorado if one can't get COBRA for some reason (like the company has gone out of business), or other health insurance, the state fund will pick up coverage, albeit at a pretty hefty cost. I think it works out to be very close to what COBRA would cost, but with a much higher out of pocket limit.
Jeannie McClelland
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#7 Snowbird


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Posted 19 September 2009 - 02:41 AM

Hi Debo

I can't give any better advice than you have already received. Hope you dig into alternatives that could possibly help you. Sorry to hear you are having such a nasty time of things. Try to remember that the diagnosis is not nearly as important as controlling the symptoms that plague you...as best you can. ;)
Sending good wishes your way!