Tuesday, April 8, 2014

20. Advance Testing, Day 2:  Dread!


Назва́лся гру́здем -- полеза́й в ку́зов.                            

                      If you undertook something, do it; If you pledge, don't hedge.

 Literal: If you called yourself a milk-mushroom -- get into the basket!


Awakened at 6 a.m. by a crushing migraine, I thought "Oh shit! I'm probably in here in isolation ward with the flu and will kill everyone".  Luckily, it was only a migraine and once I took my meds specifically for migraine, it's slowly subsided through the day.  But there's something about waking up ill even before you're to the 1st stage of the rough stuff that felt a bit daunting to me. 


Explaining to Dr. Fedorenko I was afraid my little cold was something bigger, he sat me down and told me that migraine is a rather typical "disease progression" with CIDP, and that it means 'peripheral nerves' in my head are damaged. He hopes they will heal after HSCT, but he says it is not the result of IVIg, but of CIDP. So, the day got off to that kind of a beginning.


I did not know the increasing migraines were "disease progression". I wish I'd been in here sooner! Shower and dress, considering how many more times I will have to wash my hair - not so many.


Resolute to my decision, I proceed with testing and a hopeful desire for the thumbs up for HSCT


Today is Day 2 of medical testing, so leaving the migraine aside, I should first say that it began with 


  1.  urine samples at dawn   


  2.  nasal and throat swabs about 10 minutes later


A break, but don't eat that breakfast they brought - you do that later after.  


  3. A large serious Russian woman came in with a q-tip swab test, gesturing I needed to turn over. Pointing to my bum. Of course I did, and she did, and that was that. 


  4.  Dr. F. arrived and escorted me to my lung capacity testing, which I had to repeat 3 times to get the scores that won me thumbs up from the 2 techs and Dr. F.  

  5.  Dr. F. says it is time for the test I've been dreading and trying to talk him out of: lumbar puncture.  


NOTE: my last lumbar puncture, used to Dx CIDP in late Jan, 2011, was miserable. First my neuro tried in his office, 4-5 jabs and never could enter my spine (I have vacuum disc in 3 spaces from auto accident at 18, so it's a tight messy fit for a needle into the spinal column).  No go. Reschedule for operating room and a spinal surgeon who did the lumbar puncture guided by visual aid, MRI or something on screen). Success, but took the better part of a morning and was traumatic.


I'm telling you that story so I can tell you this one:  Dr. F. told me yesterday and again this morning that the lumbar would be very easy.  No pain. I stressed.  In fact, the cold spray of alcohol was the worst of it, and I was finished before I even realized it. The man is magic! 


LIE FLAT FOR 2 HOURS. And then if I want to, he says, I can go for a walk since it is sunny and beautiful outside today. I did.  


Taking iphone photos on the way, Hansel & Gretel like, so I'd be able to find my way back into the hospital, I ventured out to the grocery store, which was a good 4-5 block distance away. But first I took in the grandeur of my fine old hospital, the grounds, and even the old log-built chapel on site.  


If I pointed out my room's window, it would be just about behind the head of this statue, and 3rd floor (of 4). So that is where I am right now, looking out, contented to be a milk-mushroom.




The trees I look out upon comprise a lovely park, at the end of which out of view to me to the far left of my room's view is the log-built chapel:


Serenity in and outside, grounds warming today in a full sun. I walked about a mile to the store and back, not getting lost a single time (thanks, Kristy).


  6. Back just in nick of time to get scowl and be dragged off to have my ultrasound of chest cavity and monitored heart tests. Dr. F. said they would just do those tomorrow if I was not back in time. Nyet! Today!



So, here I am, committed!  Milk-mushroom IN THE BASKET!


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