for a long time - at the very beginning of "all of this" back in 2010 when my attacks started - i wanted to be a patient. i wanted lots of tests done and monitors on me and all sorts of things so that we could figure out what was wrong with me, get me all fixed up, and then i could move on with my life.
if you have been a reader for all or most of my journey, you know that THAT is not the way things went. i had a few tests done in 2010 to rule out rare things - nothing appeared to be wrong with me neurologically so the conclusion was it must be psychological.
for the next 2 1/2 years i was treated for my attacks by a psychiatrist. there were blessings in this, in that i got help for anxiety/depression, but at no time did the attacks stop permanently. when i had one the questions would be "what were you worried/stressed/anxious about?" the questions were psychologically driven because a psychological problem is what i had.
then i changed psychiatrists and my new one said, this is not psychological but neurological. back to a neurologist i went. he gave some good help but when my attacks started increasing he didn't assist.
through what can only be looked back on as a miracle, god got me into utsouthwestern 9 months before their first available appointment. since then, i have had excellent doctors who agree, this is neurological - but are ruling everything else out to make sure it's periodic paralysis. they coordinate their efforts and are very efficient.
i am now a patient. a patient i wished to be 4 years and 5 months ago. and now, i don't want to be a patient.
because when you're a patient, there will be pain. i have had more blood work drawn in the past 5 months then i believe i have in my entire life combined. i have had an ecg, eeg, emg, mri, sleep study, heart monitor holter, and soon emu all in the past 5 months - and those appointments aren't including regular dr visits and obgyn for pcos + 2 x's weekly therapy. it's incredible to me to look at my schedule and see appt after appt after appt after appt.
all of these things have been uncomfortable. i am allergic to latex and sometimes get stuck with latex-ie products - so i get a rash. i've had more gunk in my hair then i ever thought i would. sticky patches and being stuck with needles = all not fun. the heart monitor i'm currently hooked up to is itchy and the electrodes don't stay on so i have to tape them on - it's quite the process.
being a patient is hard. it's exhausting and scary. you want tests to come back normal but you also hope they don't so at least SOMETHING will be wrong and you can get help for it.
why am i writing all of this? to say that i am gaining a greater appreciation for parents, children, adults who have more medical conditions than i do. their suffering is not over looked by god who sees all. when i am paralyzed i think of people with sma or als and how frustrated they must feel. at least i know in 20 minutes to 2 hours i'll have movement back. when my neck is frozen in an uncomfortable position i think of people in the hospital who cannot move themselves and how grateful i am when someone finally reads my mind and props my head up differently. when the electrodes and tape are itching/burning my skin i think of children/adults who have to be taped up on a regular basis and how irritated their skin must be. when i am getting an mri done i think of how grateful i am that i get to leave the hospital and don't have to stay. i think many people in there would be grateful to be well enough to leave. when i pick up my meds i think of the many people who would give anything to not feel depressed or anxious, but don't have the funds to get that help. i am grateful for parents who provide health insurance for me. when i can't drive for 5+ months until i am cleared by a doctor i think of those who can never drive and who must always rely on someone else for a ride.
yes my life is uncomfortable and not where i imagined it would be. yes i have pity parties. yes being a patient is hard. but i would be a fool not to realize the amazing blessings that have and are coming my way.
things may not be the way i wanted or expected, but it's all going to be alright.