Easter in Rehab

(Stan and I out on the patio by the cafeteria.  I think I look a lot thinner than my photo taken at 189#.  I haven't been able to weigh in over 2 weeks.  What do you think of my "bling" around my wrist, aren't we stylish couple)

Today is Easter.  Today is also General Conference for those of us that belong to the Mormon religion so there was no church today, which I'm sure seems strange to all of  you Catholics and Baptists because Easter is an important reason to go to church.  General conference is a wonderful time though.  We get to here our prophet speak to us.  This time we even have a new prophet,  Russel M. Nelson.  In addition to being a prophet of God, he created and invented the 1st heart-lung bypass machine  to make open heart surgery successful.  He is famous world wide for his work as a cardiac surgeon.  As many lives as he has saved with his amazing surgeries, he will save even more in his current capacity as prophet, seer and revelator for the  world, not just our church.  I'm looking forward to going back and listening to these talks.

Stan and the boys came  up today to celebrate Easter.  We played games for a few hours and just relaxed.   I didn't have therapy today.  You only get it one day on the weekends got therapy.  I did practice going to the bathroom a several times and figuring out how to get my pants and underwear off.  That part is exhausting.  I need to talk with Dr. Northway, my urologist and have him help me figure a few things out.  I'm falling asleep.  I'm going to try to write earlier tomorrow.

Betrayal at Baulder's Gate.  We just stated so not much of a game play area.

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

It's November now...

Well, It's another month.  I wanted to post more frequently than that.  I don't know how all these moms with little kids post on their blogs so frequently.  I could probably post a little more, but I fall asleep at the computer quite frequently, which makes it difficult to type up a blog post.  Since I took a long nap this morning during my I.V.I.G. infusion, I feel pretty awake right now, so it's a good time to post.  Plus, I can't really do much during my infusions because when I do, I get a headache and my BP goes up.  It kinda sucks.  It drives me crazy to have to lay in bed for 2 days and have someone do everything for me.  I'm way to independent for this.  It took me about 6 months total before I really let my home nurse start doing a lot for me and then it wasn't until I got my second nurse that I started to give in.  My 1st nurse really didn't try to do much for me.  My second nurse really had to start insisting that I allow her to do things for me.  She wore me down though.  Now she does everything for me for the 2 days I get my infusion and we have become very good friends.

Sleeping for me has been really off lately.  I never sleep longer than 2 hours at a time at night before I wake up to either go to the bathroom, or because I am in pain, or because of muscle spasms.  I posted about that in detail in my last post, so I won't go into that any more, but to say that I had my consult with the specialist.  She is concerned I may have central sleep apnea from my MS.  I had a sleep study last week.  I'm still waiting on the results of the study.  It wasn't as bad as I thought it would be.  I didn't think I was going to be able to sleep with all the stuff all over me, but I was so tired that I fell asleep as soon as she left the room.  I'm still waiting on the results though.  It's been a week as of today so I hope to get them soon.  If there is any apnea, then I have to get another study done with the machine on to get the settings correct.  I'm hoping there is actually something they found that can be easily fixed.  Nothing else I have can be fixed.  Maybe this can be.  I'm just not confident that it can be helped.  I guess I've become cynical.

Wedding preparations are coming along.  I can't believe the wedding is in only 2 months now.  Rachael is starting to get really stressed out.  School is a lot busier this semester.  Tapestry didn't give her any classes this semester, so she had to get a job at Joann and they don't pay as well, so she has to work three times as many hours to make as much money and doesn't get off until 10pm 3 nights a week.  On top of that, she is planning a wedding.  Her photographer fell through the day before their engagement photo shoot, which pushed back their engagement photos getting done, which meant they can't get their engagement photos on the back on their wedding announcements since they need to get those ordered ASAP so they can get them mailed out by the end of the month. Today, I created an alternate back for their invitations so they can get them ordered.   Everything else seems to be going ok though.  Once they actually get their engagement photos done, I'll post a few photos from their engagement photos.

This Sunday is the primary program.  We have had 3 week of practice and the kids sounded pretty good last week.  I'll post on Sunday afternoon and let everyone know how it went.

Spiritual weekend

This weekend was a wonderful, spiritual weekend.  We had stake conference this weekend.  For those of you who are not LDS, stake conference is a conference for  a group of congregations, also known as wards, that make up a stake.  Stakes are kinda like a school district.  There is usually about 10 wards in a stake.  We all meet together and listen to our stake leaders speak to us.  We have them twice a year.  This conference, we had a visiting general authority from Salt Lake.  He was a member of the Quorum of the 70's.  His name is Elder Hamula.  He is an excellent speaker.  The  purpose of a 70 is to testify of Jesus Christ.  He did exactly that when he spoke and I could feel the spirit of the Holy Ghost testify to me so strongly of the truthfulness of the gospel.  I'm so grateful that I have the gift of the Holy Ghost to be my constant companion.  I am also grateful for the knowledge that my Heavenly Father loves me.  It makes these challenges I have to endure a little easier at times.  I'm not as likely to lash out at God even though I get frustrated at the never ending pain.

My most recent frustration is lack of sleep and daily fatigue.  I fall asleep all day long while I try to do things around the house and in my daily like.  Many of the things I fall asleep doing are not very safe to fall asleep during such as driving my wheelchair, cooking showering, washing dishes, sewing, standing and just about any other way you can imagine.  I broke my ankle on January 1st by falling asleep on the edge of the bathtub and falling over.  I rolled over with my entire weight on my foot and bent my ankle in half.  I had to have plates put in my ankle.  I spent 4 weeks in the hospital after that fall between complications after surgery and rehab.  I broke my ankle on my good leg, so I had to have a lot of rehab.  I'm not anxious to repeat that again.

My neurologist referred me to a sleep specialist last week.  I think I see 7 specialists on a regular basis now.  .On Wednesday, I had a 45 minute consult with the sleep specialist.  She is going to test me for sleep apnea.  She thinks I might have central sleep apnea from the MS.  I may not be breathing deeply enough to be getting enough oxygen at night because the proper signal is not getting from my brain to my airway.  She said it is a little more challenging to treat but it is treatable.  I have to have a sleep study done.  I am just waiting on insurance to authorize the sleep study.  She also put me on some medication during the day to keep me awake so I am not falling asleep in unsafe situations.  I"m still working on finding the right dosage, but I noticed a big difference even with the dose not being right.  I hope she can figure out what is causing my sleep problems.  I'm tired of not sleeping well  I rarely sleep more than 2 hours at a time at any given time.

Gaga Ball Game!!