Posted 7/11/2012 7:14 AM (GMT -7)
I've been living with a diagnosis of "fibromyalgia" since the mid-1990s and because I am a sex crime victim, doctors told me the chronic pain I live with is a result of PTSD. (post traumatic stress disorder)
Back in 1995 that diagnosis made sense but now it is 17 years later and there are new developments that really frighten me. Unfortunately, my job got outsourced in 2006 and I lost my health insurance, but I am still working as an "independent contractor" so earn too much to qualify for Medicaid. So I have to pay cash for all Doctor appointments and prescriptions and I honestly can't afford to do that often so I just stumble along trying to figure out what is wrong with me.
I had diarrhea for Five years (5 years, several times a day) and a free clinic I went to just gave me immodium and shrugged with no concern about it. Finally I started eliminating things from my diet and in the end became a vegan and, guess what, the diarrhea finally stopped. So that went well. I'm even losing weight, which I gained during the PTSD years as they kept giving me anti-depressants even though I was not depressed and all they did was cause weight gain...
Around June 10 this year I went for a walk and the sun was stronger than usual and I got a sunburn in the chest area, above my blouse. No big deal, a little sunburn. But a few days later the burn spread and turned into hives and the sunburn was even in places where the sun don't shine, so to speak, like all over my breasts and my legs, even though I was wearing pants. The burn lasted 3 weeks, the hives kept spreading. Even sitting close to a window seemed to make me burn more.
I went online and read about "allergy to the sun" and the Mayo Clinic website mentioned that my sun reaction could be related to immune system issues or even lupus. So I looked up lupus and realized a lot of my symptoms and other problems are also signs of lupus.
I have chronic eye infections, little sores in my nose and lips, horrible pain that makes it almost impossible to walk but I still plod along because what can you do... I just walk in pain. The diarrhea seems to be one of the symptoms and could be a sign of organs being affected. The hives and photo-sensitivity are new.
I am 64 years old and have to wait one more year to get Medicare and I hope then to get good medical care. Meanwhile, yesterday I went to a local free clinic (it cost me $75 because my $25K a year income disqualifies me for any discounts). After waiting two hours I finally saw a doctor, a woman from Pakistan or India. When I said, I have symptoms of lupus and I seem to have become allergic to the sun, she just laughed at me.
She did say, 'You are allergic to something" and gave me a prescription for steroids and they helped immediately with the hives. But she ignored my questions about the connection between the pain and the sun sensitivity and the infected eyes and how tired I am all the time. She actually got up and left the room and I didn't even realize the appointment was over. I think she thought by talking about pain I was asking for drugs, because if you are in a low income clinic, you must be an addict. I've run into that attitude before, so I just take Ibuprofen as much as I can until I start bleeding out of my rectum.
What I want is a diagnosis, because with a lupus diagnosis I would get Medicare now instead of having to wait until August 2013 when I turn 65. I don't know if this free clinic or any other free resource will get me that diagnosis. I don't even know how a person is diagnosed with lupus, but from my own research, it seems I have a lot of signs of it.
So meanwhile, I am trying to get lots of rest and using OTC meds and herbal help, such as Valerian and Melatonin and Ibuprofen for inflammation.
I wanted to join this forum just to find out. If this is not lupus, what the heck is it? It's been decades since I experienced the "trauma" that they told me was causing the pain 20 years ago. The pain just keeps getting worse. It moved into my legs in 2010 and has just gotten worse and worse. It's not muscle pain, it shoots throughout my body, as if through my central nervous system.
So, anyway, that's what I'm going through. Hope others here can share their experiences of not having insurance and trying to treat themselves, or someone may know where I can get a diagnosis and finally get Medicare.
PS I use the name Sunshine, because back in the 1970s that was my nickname, as I was a shining happy hippie ... but the name really doesn't fit me these days...