I wish I had something brilliant or hysterical to write about, but I have spent the last week since my Dysautonomic crash recovering and sleeping 16 hours per day or more. That was definitely one of my worse crashes and one I would like to avoid. The actual written protocol that I have in my medical binder of records and other pertinent information, because doesn't everyone have one of those, to treat a crash is to carefully infuse fluids until my blood pressure begins to rise to my normal, treat pain as needed, and call the neurologist with any questions or concerns. Living in a small town, the local drs have no familiarity with someone as complicated as me and thus my neuro wrote out a treatment plan. Also unfortunately triggers are not easily avoided. They include things like getting too warm or too cold, being in a loud environment for too long, bright lights, flashing/flickering lights, stress both emotional and physical, low blood sugar, forgetting to drink enough (because I have no sense of thirst), and pain. Stress can actually include positive emotions like being excited about something. Things I can no longer do because of the triggers include going to concerts (I love music), going to movies in theaters (I have about a 60/40 odds of triggering a crash if I go see a movie, not in my favor, from the rapid flickering of the film and the loud soundtrack), attending any crowded events, being outside in summer. Yet even if I avoid all triggers I can still crash for no apparent reason, seemingly out of nowhere. This is something that it took a long time for my family to understand, that I really was sick at virtually every family get together because it was so stressful, loud, and crowded. Now the stress has been reduced a LOT, and as you can see from the video of the wrapping paper fight I did fine this year.
This coming week I have two doctors appointments that I have delayed just a wee little bit. So I have been having almost daily fevers for the past, um, two months or so. Sometimes Tylenol works, sometimes throwing in an illegal Ibuprofen finally works, sometimes they are stubborn. I know dysautonomia impacts my body's ability to regulate temperature so I am going with that being the cause, but I have a feeling my internist is going to be a little unhappy that it has taken me two months to come in and mention this to him so we can eliminate other possibilities. Actually I am taking bets between the internist on Monday and the hematologist on Tuesday as to who is more angry with me for my "ignore it and it will go away" approach to medicine. Hematology is my yearly checkin since I am on Lovenox (injections of blood thinners) for Lupus Anticoagulant (blood clotting disorder) after having had a stroke (RIND) when pieces of two blood clots in my arm broke off and went through the hole in my heart (PFO - we did not know about it until afterwards) to my brain. I think I may be bounced back to the GI doctor/nutritionist since even though I have recovered the ability to swallow, my stomach seems only able to tolerate simple grains like corn flakes, bagels, toast, corn chips, and rice. If I eat anything more complicated, especially a protein, I become very nauseous (Thank God for Zofran!) and my stomach hurts. Yet I am gaining weight as if preparing for a famine.
I will try to write something much more entertaining this week. If nothing else I can write about freezing to death tomorrow when temperatures are in the single digits with negative windchills and I am waiting for a handicap accessible bus to take me to my doctor's appointment and the fun of wheeling through snow and slush. Tomorrow I will be wearing enough layers that I will be able to do a wicked imitation of the kid in A Christmas Story "I can't put my arms down!".
Thank you for reading this!! You Rock!!