My Herstory, part 3
My Herstory, part 3 The final experience that has motivated me to continue studying and learning about the human body holistically comes from the last two years. Married life is different from any other kind of life I’ve experienced so far: both independent and dependent, I live in a constant battle with myself to get better. **** It starts with sweats. Despite baths, dips and long swims in the pool, despite putting the temperature in the apartment to a comfortable level, I can’t stop sweating. I end up at the clinic with a confused, “what in the world?” bafflement and receive as much in return. I sweat so much I can’t give a urine sample even with several cups of water gulped down. One doctor studies me critically. He runs through my medical history and suggests I am adjusting to the climate here, which is, to be fair, different than the one I had been in prior to moving. He also suggests the transition may be underscored by an emerging problem; to wit, he refers me to a rheumatologist. And so – I follow the steps to this blog. The rheumatologist – who is presently on maternity leave – sees things the general physician on shift did not: she sees inflammation in my knuckles and in my ankles; tests my range of movement – limited; and withdraws some blood for testing. It felt peculiar, to be in another specialist’s office. I have seen many over the last five years, but a rheumatologist? It made me feel old. Like I was aging twenty years ahead of myself. (Not that being old is a bad thing – it’s not, not inherently. There’s something to be said, however, for wanting to enjoy your prime years while you have them.) When the blood was drawn, I asked several questions. Why was it being drawn? Would I have to get it drawn frequently? Would I get answers? How did the testing work? And the answers presented to me were: *because the rheumatologist wanted to test me for autoimmune disorders *probably, if the results were such that I would require monitoring *I might, but I might not – autoimmune disorders are notorious in the field for being difficult *the testing worked like this: they would take my blood, stain it with chemicals, and depending on the pattern of the stains, could determine what category my illness, should I have one, fell under, and after which she could determine treatment
As you might imagine, I was stoked. Answers! Yay! Finally more understanding of why my body was being so confusing, another reason why what I was experiencing wasn’t just in my head or, as my OB put it, “just the depression”. Again, what I expected to happen was not precisely what actually happened. I go into her office when she says she has the results and wants to discuss them. I feel anticipation and a sort of hope – recovery is on its way, right? I can get back to normal. I can do the things my husband and I planned on doing. Only…she hands me papers explaining the staining pattern test. She hands me my lab results, and studies my face intently – with compassion, but no small exasperation at my follow-up anxiety. I did have positive results for an autoimmune problem. My ANA titer levels, tested previously at ‘high’, were so once again. My blood did reveal patterns – but staining patterns for all four types of the types of disorders they tested for. In a word? Confusion. (In case you haven’t noticed, confusion is a present and ongoing theme of my battle. This, due to both physiological attributes of what I have been told, and also because I am doing all I am able in my own power and still hitting walls.) She knew I had ongoing symptoms. She learned my symptoms flared more during the summer than the winter, which was unusual among autoimmune patients, whose flares tended to appear more in colder weather. She knew that my autoimmune system was not up to par when I described four years straight with at least two sinus infections every winter and spring. But what she did not know was why. Or what. Or quite how to treat me. And that, understandably, left me upset. In tears, again.
***** She has dealt with my subsequent visits with as much patience as she possibly can, though I know I tested it. I have been researching autommune disorders, but being no nurse or doctor myself, have to constantly ask those I see questions. Usually they’re questions the doctors cannot answer, or haven’t studied themselves. Which feeds my continued restlessness and drive, and so I research more. I do have medicine – untaken – in my pantry she prescribed me, for the high levels of inflammation. My most recent visit showed no inflammation whatsoever, so I left it untaken – knowing now (after my bladder infection) how sensitive I am to medication (nightmares almost every night since early October, when I started the antibiotics). Being told “no, we don’t have any answers for you” fed something in me. I’ve not been diligent in learning since I graduated college, content in trying to make it from day-to-day without going mad. Now, though, one of my watchwords is proactive. Doing nothing, learning nothing forces me to stay where I am: stuck. At least learning how the body works and continuing to ask questions keeps me busy and opens my mind to possibilities I hadn’t considered before. For example, I might take years to get diagnosed. On average, it takes a Spoonie seven to eleven years for a definitive answer, and longer still to be treated. In that time, who knows what the healthcare system might be like? On the other hand, I might experience another traumatic event like the complex migraine and the doctors might stumble on another clue. It wasn’t for nothing my body changed when I changed climates, nor is it totally unusual for the doctors to monitor me from a distance (read: appointments every three-to-six months). I started this blog because I know, without doubt, I am not the only one facing this long unknown. I am not the only one experiencing symptoms and researching what she can understand online, and pestering the doctors for better care. One upside so far: I was called by the insurance company, and told I was enrolled in a new program they were initiating. In it, I was to be put under a care manager, a person who could help manage my care - finding me doctors, recommending payment plans, and so on.
I am hopeful, at this point, that maybe the number of claims I have submitted (read: too many) have alerted someone that I am fighting something. Maybe through her I can get better treatment, or better awareness for the autoimmune system as a whole.
