In our efforts to write this blog, we thought it would be good to spend Sundays with something for which we feel thankful. Every dissociative person or person with PTSD we’ve ever met or talked with has always had a long and winding road toward finding health-care professionals who understand the conditions, and who actually listen to your issues. Many sufferers still struggle, but we’re lucky that our medical doctor seems to have a good grip on these issues and makes a point of scheduling more time with us when we have our bi-monthly appointments.
One of the trickiest things we find with our conditions, which are complicated further with SLE, Systemic Lupus Erythematosus, or Lupus, is that as a dissociative, we never meet “textbook” test criteria for any condition. (My doctor actually calls me her non-textbook case.) Sometimes our Rheumatoid Factor and ANA (Anti Nuclear Antibody) tests match our condition, and sometimes they’re negative or our ANA matches other conditions entirely. (These are two key blood tests used for autoimmune diseases like Lupus.) But Lupus hasn’t been called the great imitator for nothing. Compounded by the physiological difficulties of any dissociative person (for example, one of us may be depressed, while others aren’t, making the use of anti-depressants problematic), our body seems sentient and intent on tricking our tests. We’ve actually blood-tested positive for every other autoimmune disease on the books, but the physical symptomology combined with enough positive ANAs considered Lupus-indicators prompted my doc to start focusing on Lupus and treating me for it. I can’t say I’m all better, but my symptoms are much more manageable thanks to having a doctor who listens.
I doubt many of us with the Lupus-caused Malar Rash (the facial butterfly rash) that is found among 50 percent of us or so would consider it a good thing, but for us, it was. (This is the one symptom of Lupus that is considered a tell-tell indicator, few other conditions have the same kind of rash.) The day we walked into her office after months of tests and a tentative Dx, my rash was very severe (and it isn’t all the time, thankfully), and my doc declared right then and there that Dx testing was done, she would now treat me (us) specifically for Lupus. Anyone who has been through the “House” style rigamarole of test after test for a Dx knows what a relief hearing that is. (Speaking of House, this all happened before I watched the show, although I have been amused at how often the team falls back on the possibility the patient of the week has Lupus.)
In honor of docs who listen, and recognition of the work some fine folk are doing to combat Lupus, we will post some related links this coming week. Today we’re posting the Lupus Foundation. If you or anyone you know suffers from this condition, I urge you to check it out (if you haven’t already).