Things got real

After yesterday's evals, I was feeling pretty good.  I was rocking the transfer board transfers.  They complemented my core strength and upper body strength and my motivation.  Today was not so easy.  I wore a dress yesterday was plain underwear underneath.  Today I decided to wear a loose fitting pair of pants and a top so I didn't have to worry about flashing everyone.  Huge mistake.  It took me 10 minutes to get my pants up after I went to the bathroom 1st thing this am and I was dripping in sweat.  I changed into a dress again for the rest of the day.  Those issues in the bathroom made me start thinking of all the issues I can have in the bathroom away from home.  I already have trouble with public bathrooms having handicap stalls that are too small for my power chair.  I can't always get onto the toilet easily.  Having to be lined up and using a transfer board isn't going to make this any easier.  I frequently have to rely on being able to walk when  I go to friend house because even if their house is accessible, the bathroom is not.  Now my brain is running away with all kinds of scenarios of being in public and not being able to actually use the toilet.  I'm sure I will work them out eventually but I felt overwhelmed today.  When I go home, at first I will go to my medical appointments and that is all.  I'm going to need time to get used to the world again. 

I ended up fretting about these things all day.  Just before Stan went home for the evening, we said prayer together.  As I am praying for us to be able to learn to cope with my new limitations together, I start to break down and start to bawl.  Stan doesn't always know what to do when I start to cry like that.  He likes to be able to fix things, but that isn't a "I need it fixed" kind of cry.  It's just an "Im over whelmed and need to release some tension" kind of  cry.  I guess guys don't get those because he has always tried to "fix it".  After almost 28 years of marriage he has finally realized there is  nothing to  fix and I just need him to hold me and let me cry.  It always feels so good to release that pent up tension and just cry.  I figure I'm going to  be tweaking how I do everything for a bit until I find what works for me with my new limitations.

Evaluations, Friday 3/30

Friday, March 30th, 5pm  I completed the 1st day of rehab and I am exhausted.  It started bright and early at 7:30am with my PT evaluation.  He asked my a bunch of question about previous ability, how my house is set up, equipment I have at home, help I have at home, including home health (only for my IVIG).  Then he assessed my movement, spasticity and strength and that was the really strange part. All the doctors have been testing my movement and strength every day and Dr. Latorre tests my spasticity a little bit but this guy really tried to elicit the spasm and there was nothing. No tone, not even a little spasm.  We worked some more on transferring into the chair from the bed. I’m getting pretty good at it except my feet get stuck. Then I had OT after breakfast, I got to take a real shower. That felt so good. I had to have a lot of help with that too, partially because this bathroom is poorly designed to be used by someone in a wheelchair.  The shower is just a little bit too small and the shelf for the shampoo and body wash is at the opposite end of the shower from the water, which means once you are in the shower, the shampoo is behind you and you can’t reach it. Being that it was my 1st time in the shower, the therapist wasn’t going to leave me anyway. She wanted to assess my abilities and be available to help me as needed.  There is really no such thing as modesty in rehab. When you have a baby (I’ve had 3) your modesty is gone from the time you come into the hospital in labor until you deliver your baby and the placenta and get stitched up if you need that. Your OB is in there and 2-3 other staff, maybe more. When you are in rehab, someone helps you get dressed, take a shower, go to the bathroom every day for 2 weeks. I have had 5 people see me naked or mostly naked today.  Rehab trumps child birth for tearing away your modesty any day.

St. David's Rehabilitation Hospital. Physical rehab, not drug rehab

Rehab day 1, Thursday March 28 - I'm laying in bed in St. David's Rehab hospital and I decided that I  needed to start journaling all of this as it happened to help me cope with the emotional part of it. On Saturday, the 24th, I woke up with both of my legs paralyzed.  Not just paralyzed but completely flaccid.  Paralysis is not something new to me, but usually my MS affects 1 leg at a time and my spasticity usually stays or increases.  The previous week, I had been sick with a UTI and asthma, so my pump doctor increased my baclofen pump dose quite a bit on 2 different days.  The initial thought was that it was increased too much but after a decrease of 40%, there was no change.  The initial increase was only 20%. We ended up decreasing it by more than 60% and we are still not seeing much improvement and no increase in spasticity. The consulting neurologist, not my primary neurologist, quickly decided this was not my MS because of the lack of spasticity (I agree).  Among the differential were a virus i n the spinal cord which would be difficult to test for and an autoimmune disease called Chronic Immune Demylenating Polyneuropathy (CIDP),  I'll put a link to the disease page below so you can learn  more about it. They really couldn't do a whole bunch to figure out what it exactly was since it really could take a while.  They decided to treat me with 3 days of IVIG, treatment of choice for CIDP and send me to rehab. I will be here for 2 weeks minimum.

Overall It has been a very emotional week for me.  Each flare brings a certain amount of uncertainty, but I’ve had enough of them that I know I usually get some amount of function back.  I know how to maintain my independence at those lowest levels of functioning. This level of functioning is so far below though that I don’t know how to perform even the most basic ADLs this way.  I’ve really tried not to focus on that too much knowing that rehab can accomplish amazing things but it is hard when someone is having to wipe my butt after I have a bowel movement. I sometimes lay there trying to keep the tears out of my eyes while they are cleaning me up.  I think that is what has been the hardest for me. The staff has all be very compassionate as they help me with all of it like rolling over in bed and repositioning, something most 6 month babies can do. They also don’t treat me like an invalid. They allow me to do the few things I can do then quietly help me with the rest.  The real therapy starts tomorrow. I’ll have a PT and OT evaluation. I will write more after that.

Here is the link to the CIDP info.  Remember, I have not been diagnosed with this.  This is just in the differential.  Also, I don't know if this is in addition to my MS or if it would replace my MS diagnosis. https://rarediseases.info.nih.gov/diseases/6102/chronic-inflammatory-demyelinating-polyneuropathy