May. 12th, 2017

quirkytizzy: (Default)
Y'know, having a rare, incurable, autoimmune disease that one gets only by winning the worst of the genetic lottery draws, and that has ridiculously limited funding (often less than 2 billion a year into research)....might not be so isolating after all.

I finished my phone interview for Disability, this time armed with both a local, face-to-face representative and a national advocate. This time around, I am armed with ALL the paperwork needed and have given control of the process to an advocacy group. It was a surprisingly good call, with great sympathy given by the representative.

Her mother, she said, has lupus and so she sees the struggle. And it occurred to me that nearly everyone I've spoke to about my lupus at least KNOWS ONE PERSON themselves that HAS lupus. I've yet to meet anyone outside of the monthly lupus support group that I am sometimes able to attend that has lupus personally, but the fact that nearly everyone I know KNOWS someone with this disease makes it...

Less isolating. A little more bearable. I feel just a little less lost.

My Medicare has finally been reinstated. My normal prescriptions will run through either completely covered or else vastly discounted. I cannot describe the relief this is to me (and to Pat's wallet.)

There are days when I feel like this disease is a lost cause. There are days when I fight like hell with doctors and ER trips to get even the most unbearable symptoms to just back the hell off for a few days. I even experience some anger at being treated as if my migraines were nothing more than an excuse to beg for Imatrex (which is, like, the least addictive migraine med there is.)

I've only had to request narcotic pain medication three times in the entire last year, so hopefully this keeps me under the drug-seeker radar.

But overall, I've been so lucky in that people believe me. My GP has been exceptionally supportive in helping me through the Disability process. The pharmacies have also been helpful and never condescending.

They also don't dismiss the mental health issues, both pertaining the medical side and the mental side.

As I read over the struggles of others trying to for years to get diagnosed and the uphill battle at getting treatment...I'm glad - in the most perverse ways - that my lupus diagnosis came at the same time my kidneys and my brain were literally being eaten alive.

I've been lucky. Lupus, as uneducated as the populace seems to be about what it really does to a person, is not as isolated as I once thought. That gives me such great, grand hope.

In fact, with advocates, personal doctors, I seem to garner the most sympathies, often with them apologizing about me having come so sick as such a young (ish ) age. I talk and joke, gallows humor, laughing at the ridiculous of this whole thing, but it helps.

NOTE: I no longer indulge in gallows humor in the hospital. Saying things like "I'd load a shotgun to my mouth" tends to get taken pretty seriously.

My meds are hitting me, so please excuse the bad grammar littered all over the place.

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