My First question, at least I think there is a quetion here somewhere
I was diagnosed in June with SLE with a side of Raynaud's, Fibromyalgia, Sjogren's, and anticoagulant and anticardiolipin antibody. They are just now discovering that I have probably been sick for at least 7 years. As of 7 years ago when I finally gave birth to a healthy child, I almost die on the table and wound up in ICU for two weeks. At the time, they assumed I had eclampsia, though none of the normal tests revealed that. What lead to the diagnosis this past year, was I developed a rash on my upper arm, that they thought was ring worm, but it quickly spread across my entire torso, and upper back. They did a biopsy and it showed consistent with Lupus. My initial consultation with a Rhuematologist and Immunologist confirmed through the criteria check, and many lab result. So here come the tough part: Since the diagnoses much has happened quickly, I went into kidney failure and underwent dialysis, I bleed none stop from June to December, which led to an emergency hysterectomy (though the ovaries where left in), I have been hospitalized with Pneumonia, as well as MRSA (after the surgery). And now, I am home, and quite frankly lost, terrified and unsure what to do?
I struggle with Doctor patient relationships, as I never am able to converse with them normally. I have a million questions, put tend not to ask as I do not want to burden or bother them. But this leaves me with zero knowledge about what I am dealing with. I though I could learn all I needed to know online, and discovered that will not work. One site makes it sound like all of this is no big deal and life goes on as normal, another site makes it sound like each flare up has the potential to kill me. Worst of all, I do not even know how to recognize a flare up. I am constantly in pain, (Though the medication Plaquinil 400mg a day has reduced it some.) I constantly ache and run low grade fevers every morning. My skin burns and itches at time to the point I cannot sleep. (I have gone the last 5 nights with less than 2 hours sleep, thanks to my skin.) I get headaches every day, I always feel like I have bronchitis, and every day tasks are exhausting.
When I discuss these things with a doctor, I do not get much response, other than "this is normal with the disease, we will see how things go on the Plaquinil". So I am left to conclude that I am just to sit back and deal with things until the point where the medications get it under control. But then a voice in the back of my head tells me that this is a dangerous route to take. And finally to top things off, my depression which I learned a long time ago to control, is back in full force and I am no longer able to shake it.
SO......long story short, I am seeking others that understand this disease to maybe help focus me on where to go first, or maybe at least help me learn what matters and what does not. I apologize in advance for sounding so manic, I am not normally so scattered, but I do fear I am loosing it just a bit these days. I am very thankful to have found this forum though, for speaking with others that have never lived this is difficult, I always get the response, "well you look really healthy" and it is a lost cause from that point forward. Any thought, advice and or guidance would be very much appreciated.
I have read a great deal already, and will continue to read more.
Thank you for the warm welcome and I look forward to getting to know everyone.