When a Question Mark is all I’ve got

…so that nap never actually materialized. However, I am somewhat more rested a day later, and can better explain this recent experience. The nurse at the rheumatologist’s office took five vials of blood – and had to do so from my wrist. I have scar tissue built up on my right arm, where nurse after nurse after nurse have found the same five millimeters of space to thrust in a needle. I’ve repeatedly told nurses to use a spot elsewhere, but few listen – it gets wearying being dismissed, but at least this nurse listened to me. She had trouble, like almost all nurses all my life, getting any blood from my left arm. She didn’t want to draw from my hand – it’s a most painful experience – and the other option left was my wrist. She warned me, over the course of our chat, that it might not work, that she might have to order me to go get breakfast and then return (dehydrated veins will shrink, and if you haven’t eaten as I hadn’t owing to nausea, blood pressure can be low enough to not make the vein stand up enough to pull the blood out). Thankfully, that didn’t happen. What did happen was that in the middle of a sentence the world suddenly got blurry. A most curious sensation in my stomach, rather like a swoop, crawled its way up from deep below all the way up. I must have paled or turned green, because she peered at me in concern. She anticipated my need, and pulled out two ice packs (one for my chest, one for my back) and rested them on me, as well as pulled out some juice for me to drink. It helped quite a bit, but she made she I could walk before I left. I could, but felt unsteady, though I explained to the nurse this could also be because I had little sleep the night before. My husband, patient though he normally is, growled at me as we walked out, “Twenty minutes! That took twenty minutes!” I tried not to snap at him. I don’t know how it actually came out, but I did say, in response, “I nearly fainted.” Because I did – I leaned a little to the side in the chair where I sat as she inserted the needle. If it weren’t for the ice packs grounding me front and back, I am pretty darn sure I would have just passed out. What’s interesting to me is that this is not what bothers me. What bothers me is the rheumatologist asked if I wanted tests done – I had already explained on the phone I did – but then didn’t tell me what she was testing for. She told me she was doing a comprehensive blood panel, with additional tests, but it wasn’t until I was on the phone later with family that I examined the paperwork closely, and saw that every test had next to it a type marker – “connective tissue disease”.

Sigh. I am trying really, really hard to stay patient. I can’t afford to travel out for any doctors. I have to work with what I have. And what I have, unfortunately, is more questions. What is connective tissue disease? What is the medicine the doc prescribed me – she did explain to me that it is the safest she prescribes, but how does it really act? Is connective tissue disease considered a diagnosis, or is she doing these tests because I asked? What research I did find indicates CTD is a collective batch of symptoms from a set of specific autoimmune disorders. So picture a Venn diagram with disorders A, B, and C. The bits where they overlap are the bits the doctor’s describe as “connective tissue disorder”. I find it bizarrely funny, that the answer I have been pushing to find for years is still not actively genuinely definable. There is some disagreement among those in the medical community that CTD is real, because it ‘picks and chooses’ from these disorders. It would be like walking into your GP’s office, describing vomiting, bleeding and a broken bone as a “broken bone plague” or some such nonsense. I also found that prognosis is uncertain. CTD, such as it is, is not curable. There are “types” within this titled subset of autoimmune classification – such as Mixed Connective Tissue Disease, a specified component that has a six-to-ten-year additional lifespan after diagnosis. (this last fact I told my husband, and we had to sit with the thought. He held me close that night, and I held onto him as tightly as I could) I know I have to grapple with this as my reality. I know I have been fighting for answers for a long time. Yet, now that I been tested for this – do I fear having a name for this body of mine? Will it prevent me from having children? What can I do to stay healthy that’s affordable? What will healthcare look like in even a month’s time – will I still have coverage? I’m not sure. And for right now, I’m in waiting mode until I get that paper in the mail or that phone call.