A Dead Horse By Any Other Name
By this time I’ve been on the Lupie-go-Round for about 6 months. For some that sounds like a short hop, considering it took them many years to get a diagnosis. To me right now it seems interminable because I’m going nowhere fast, and nobody in the HMO system (to remain nameless, even though I’d like to blast them to kingdom come right here) is listening to me. I’ve been advised to pay out of pocket for a non-HMO physician, as I’d have a better chance, but who’s going to pay for that for me? I can’t afford it. That would kind of be WHY I have insurance in the first place.
For the record, I’m also getting really tired of the question (from people outside the Lupus community I mean), “Do you have an official diagnosis yet?” The answer is no. That doesn’t make the symptoms go away, or the fact that I plainly had a positive ANA result that is slightly above a low positive… which means it’s not a low positive… it’s a positive. I won’t debate that fact with anyone. I know what I read. It also doesn’t change the documented fact that you don’t have to have precise labs to actually have Lupus. I don’t mind explaining that part to anyone that isn’t educated in the matter, but I do mind the disbelieving attitude I get from some people because I don’t line up with a textbook. If there’s one thing I’ve learned in my months of conversation with many SLE diagnosed individuals, it’s that there is no such thing as a perfect profile on anyone. We’re like a bunch of snowflakes and there’s no way around that fact.
This label of “Preclinical Disease” has been a source of entertainment for me since the rheumatologist handed it to me. While I appreciate his demeanor, professionalism, education, and the time he spent with me in our two appointments… it still isn’t right. I considered it the words of someone tied by the system who might otherwise say that yes, this looks like Lupus to me even though you’re not full-blown at this time. That, partly because he offered me Plaquenil if I wanted it. In looking up the definition of that diagnosis however, I am bothered by what I found. Here it is: Of or relating to the period of a disease before the appearance of symptoms. Now… what part of I have pain of all types, a malar rash, serious digestive distress, photosensitivity, drug & venom sensitivity, a sulfa drug allergy, blood pressure drops when I stand up, memory loss, hair loss, splinter hemorrhages under my nails, hyper and hypo pigmentation, anxiety, breathing difficulties, and a tendency to develop infections did he miss??? It isn’t like I have all those symptoms, in overwhelming capacity, at all times, every single day, but the major ones are ever-present enough to cause me concern and change the way I function daily. I struggle to maintain normalcy because I don’t want to be a burden or chore to anyone else. There are still many wonderful things I want to see and do in my life – and plan to. I do like being self-sufficient, more than anyone realizes I guess… but I digress. That definition bothers me. I have symptoms. How can I have a diagnostic label that states that I do not? So they didn’t find the precise lab result they were looking for. That’s not a symptom. It’s a technical analysis. Where are we trying to go with this? (Besides out the door so I’m not taking up their precious time.)
I know a woman who was told recently, as she was handed some prescriptions, that she didn’t have Lupus and NOT TO COME BACK. What??? I mean, my response to that is 1. Thanks anyway you self-righteous S.O.B., I won’t. and 2. I’ll be looking for a way to get you sanctioned for negligence in care and 3. Doesn’t anyone take the Hippocratic Oath and believe in it anymore? Maybe that SHOULD be required by law for a physician. Military requires an oath… Police service requires an oath… Why not the person that is supposedly there to make sure you stay healthy and don’t die before your time unnecessarily? Where are the Drs that actually care how you feel? I need one.
Call it what you want, something isn’t right. It isn’t like waiting will make it any better, and in the mean time one of the important tests that could show a variance in disease activity was NOT repeated at the time I actually had pain, even though I requested it. The explanation I was given was that the ANA is a “nonspecific test”. Well if it’s so unimportant, why did my positive result prompt you to run more tests back in February in the first place? Not only that, why is it that every Lupie I know has the ANA repeated when there seems to be a change in their well-being? If it’s an indicator of disease activity, CHECK IT! But no. She refused. After five long years of payments into the insurance plan, I’m relatively certain I’ve paid for the tests several times over. I would reassign myself simply because I’m sick of looking at her smug face, but I know that the system will provide me with someone under the same limitations. It’s become a what-does-it-matter situation. I also might have to drive 17 miles (further than now) to find someone I can tolerate. While it might lower my blood pressure a bit to have someone new, I don’t know if I want to add that kind of driving distance to my problems.
In conclusion, I can only surmise that the good Dr. Rheumy decided that he had to come up with some sort of diagnosis for me so I would stop worrying. It doesn’t make me not worry. It makes me angry.