Out in the real world

Today is my wonderful hubby's 50th birthday.  Happy birthday Stan.  He is the best husband a woman can ask for.  We had a birthday party for him on Saturday.  It was pretty casual.  We had music playing, we played board games and ate pizza, queso, cake, chips, and a veggies (the veggies were more for my sake than for anything).  It was a lot of fun and exactly what he wanted.

I have been out of the hospital for 12 days now.  It's kind of strange going from rehab to home PT.  I was getting 3-4 hours of PT/OT every day in rehab.  Since I have been home, I have had 2 - 30 minute sessions at home with the home health PT.  Now I am having to do a lot more for myself than I was at the rehab hospital; fixing  my own meals, driving myself to my appointments (I have hand controls and a handicap van for those who don't know), taking care of all my own personal hygiene without any assistance from anyone, cleaning up after myself, and sometimes others.  My family helps me a lot with the cleaning though so I am not  having to clean house.  My boys take care of the dishes, Stan helps with the laundry, especially washing/drying it which is more difficult for me to do since getting my wheelchair into the laundry room with the laundry baskets can be a bit crowded, I have one of those robot vacuums to take care of my floors.  Some things just get neglected for now, such as cleaning the shower ; It can just wait.  It's not that bad yet.  I think all the things I do at home that I don't do in the hospital take the place of the extra rehab.  I do have a home exercise plan that my OT/PT gave me before I left but my home PT doesn't want me to do all of that every day.  I stretch most days so my muscles don't get too tight, a problem that people  with spasticity can easily have and which can make walking difficult if it gets too bad.  Plus after sitting in the chair all day, it feels good to stretch out and not be scrunched up all the time.

Today in PT I made some progress.  I have been doing some standing at my counters and at the sink such as when I  brush my teeth.  Today, I used my walker and was able to walk from my sink to my fridge, a distance of about 5 feet.  I did that twice.  I realize I walked 5 feet in rehab, but I did that in the bars.  It is much harder to do that with a walker.  The walker isn't as stable as the parallel bars.  I am getting more muscle activation in my legs.  I am hoping to start getting even more.  I just had another IVIG infusion on Monday and Tuesday.  I usually get a big surge of improvement after my infusion so I am hopeful that I will start to see more improvements.

I saw my PCP today for a follow-up from my hospitalization.  Most of my follow-up issues are going to be for my neurologist, Dr. Westgate.  I'll see her in September.  My biggest concern for my PCP is regarding the autonomic dysreflexia.  Autonomic dysreflexia (AD) is a disorder that can happen in people with spinal cord injuries, and less common in people with Gillian Barre, MS, CIDP and other neurological disorders.  This occurs when there is damage to the spinal cord that causes the message from the brain to other parts of the body, especially the bladder and bowel, to not be relayed properly.  It gets all mixed up and instead of your brain receiving the message that your bladder is full or you need to empty your bowel, your BP spikes up, sometimes to dangerously high levels.  Bladder infections, tight clothing, infection, skin irritations can all cause this.  For me, bladder fullness is definitely a trigger.  I was very concerned about a UTI triggering it since I don't always know when I have one.  She has given me some quick acting BP medication to bring my BP down if it goes over 160/95 and won't come down.  Then I  need to seek medical attention ASAP.  I feel better knowing  I have something  to bring my BP down should it skyrocket.

I am starting to feel more like myself again on the inside.  Even though the 1st episode of this ascending paralysis was worse and my hospitalization in the spring was longer, this time was harder on my emotionally.  I went though a depression that I didn't have the 1st time.  I think because when it happened in  the spring, I just dealt with things as though this was an isolated incidence.  This second time, I realized if this could happen a 2nd  time, it could happen more than that.  I was still not fully recovered from the 1st time.  I could walk again but I was still very weak.  I think that  is why I got so much weaker so much faster.  I am just hoping 2 things 1) this doesn't happen again or 2) it waits until I can at least recover from this episode before it happens again.  This is especially since I have to have my baclofen pump replaced in October so I  don't want to be recovering from surgery and have another episode.  Also I only have 60 days of inpatient rehab per calendar year.  I have used something like 38 days, so I am running out.

I walked today

Today was a big milestone.  I walked 5 feet today both in the pool and in the therapy gym.  In the pool, I could only take tiny steps.  The water helped me move my feet a lot.  Later in the day, my therapist  had me try to walk in the gym between the parallel bars and at first I couldn't move my feet because I had too much friction on my feet with my shoes on.  Then she took a piece of paper and wrapped it around my toes and taped it to my shoes.  That allowed my feet to easily slide across the floor with very little friction.  After that, I  walked about 5 feet holding onto the parallel bars. 

On Tuesday, my rehab doctor, Dr. Latorre, met with my PT and my PT and my nurse for that day to discuss my progress and plan for discharge.  He set my tentative discharge date for August 3rd.  This hospitalization will end up being a total of 3 weeks, 1 week in the main hospital and 2 weeks in the rehab hospital.  Stan was really hoping that I wouldn't have to be in rehab as long since I was just in rehab only 3 months ago.  I learned a lot of skills that I would need to use while I was weak.  However, I was too weak to use many of those skills to start with.  I couldn't sit up when I 1st got to rehab so I couldn't  even transfer with the slide board.  I had to be moved with the lift.  Now I can transfer from the bed to chair and to the toilet by doing a stand and pivot.  I put my legs in the position I need the to be, stand up and  turn my body.  My legs don't move at all during this type of transfer.  My arms do most of the  work.  It's basically just hopping from the bed to the chair using my arms for support.  Going from my chair to the toilet, I use the grab bars next to the toilet to hoist myself up and I swing my hips over.  It's getting easier to move this way each day.

Tomorrow Stan and I  will celebrate our 27th wedding anniversary.  I am so grateful to have such a wonderful man for my husband. He has been  my rock through the last 11 years as I have battled MS and  now whatever this latest neurological illness is.  Our marriage is stronger now than  it ever has been.  I can honestly say that we have never had a fight.  We have disagreed on things and  had discussions about them, but we have never had a fight about them.   Dr. Latorre is giving me a pass tomorrow so I can leave the hospital for a little while so we can actually celebrate.  We are going to go out to eat somewhere, probably Joe's Crab Shack, then we haven't figured out what we are going to go do after that.  We may go home for a little while before we have to come back to the hospital.  We have to be back  here before midnight.  We are going to leave as soon as my therapy is finished tomorrow.  I'm hoping they have me scheduled earlier in the day rather than going late into the afternoon.