I haven't fallen off the edge of the eath

Just in case you were wondering, I am still around.  Life has just gotten busy.  I think I need to put "write on blog" on my calendar because then it will get done.  PT and doctors appointments have become my full time job since my last big hospitalization.  During my last episode of paralysis, it turns out my bowel was damaged, so I have pelvic physical therapy once a week, pool therapy once a week and regular PT once a week.  I go for my weigh-in at Ideal Protein once a week and usually see the chiropractor while I am there.  I almost always have at least 1 doctors appointment each week.  The week of Halloween, I have 3.  Having a chronic illness is a full time job.  I have to factor in a lot of drive time too since we moved out to Del Valle.  All of my doctors are at least 25-30 minutes away and a few are 40 minutes away.  I would really love to have a more energy efficient vehicle.  Handicap vans are not the most energy efficient things.  They are always big and the equipment weighs a lot.  I really didn't think I would still be driving a van when  I didn't need it to chauffeur kids around.  I would love to be able to drive a smaller car.  I am so grateful to have this van though and that we were able to inherit it from Stan's mom when she passed away.  These handicap vans cost double the  cost of a regular van.

Last week I  had my 4th hospitalization for the year.  I have broken 2 personal hospitalization records this year.  Not somethings I was trying to do.  First, longest hospitalization - 5 weeks.  Second, most hospitalizations in 1 year -4.  My previous record was 3 and all 3 of those were fairly short, like 2-3 days.  This year I have spent over 8 weeks in the hospital.  Now I bet you want to know why I was in the hospital.  It was actually planned.  I had to have my baclofen pump replaced.  The battery was almost dead so we wanted it done while my deductible and  out of pocket max were still met.

This surgery was much easier than the initial placement.  Only had to be in the hospital over night.  I was in the hospital then in rehab for 2 weeks last time.  The worst part of the recovery has been  unrelated to the surgery.  I have a condition called autonomic dysreflexia.  It developed after my 2nd paralysis episode.  This means the autonomic nervous system doesn't regulate itself the way it should.  The autonomic nervous system controls all of the nerves that are involuntary like in your heart, blood vessels, lungs, sweat glans, hair follicles and many other areas.  This disorder is common after spinal cord injuries and can happen in things like Guillan Barre or multiple sclerosis.  My paralysis episodes are very much like Guillan Barre, they just don't fit the diagnostic criteria because of some of my test results.  So, after we got home from the hospital, my skin started feeling like I was sunburned everywhere.  I have had this a few times but not  really since I started IVIG.  This is the one symptom I have a hard time dealing with.  I can never get comfortable.  The breeze from the ceiling fan makes my skin burn.  There were some strange things with it though.  I was getting goosebumps everywhere off and on.  There was a lot of pain associated with the  goosebumps.  They are the worst on my legs.  Also my legs feel like I haven't shaved in several days despite the fact that I have shaved twice since my surgery.  It's like the goosebumps are pushing the hair follicles out more.  If  anything rubs on those stubbly areas, it hurts even more.

I have found nothing that gives me any lasting relief.  Stan gave me a blessing and commanded the nerves to begin healing and the pain to ease.  I have pleaded with God to take away the pain multiple times and asked him what I needed to do to get rid of the pain.  I've broke down into tears a couple of times a day.  Early Saturday morning I really broke down but decided I needed to approach this a bit differently.  I prayed to god and told him I was going to turn this over to him.  I asked him to help me have faith in the blessing Stan gave me.  Then I asked him to inspire me that  I would know things that would prevent the  pain from getting worse.  I immediately received some very clear instructions.  These instructions not only kept my pain from getting worse, but I actually experience some improvement.  Sleeping has been difficult for me, but I have been able to sleep on my side better than I usually can.  The really strange thing is that I wake up hot but it I remove the covers, or even just the top blanket,  then I get goosebumps and I am in more pain.  I am really hoping my AD was just triggered by the surgery and the pain.  I really don't think I could deal with this on a daily basis.

Hospital day 5

I got out of the ICU last night.  We were hoping I could go straight to rehab, but they didn't get the PT eval done, despite it being ordered on Sunday.  It didn't get done until this afternoon as a matter of fact.  Hopefully insurance will approve rehab early tomorrow so I can get over to rehab and  not just have to sit here in the main hospital doing nothing.  Medically, I am stable now.  I am just soooo weak that I can't go home.  PT tried to get me out of bed today and we didn't get very far.  They brought me to the edge of the bed and had me sit up with lots of help.  Then the therapist let go and I fell backwards.  I had to  either be held up by someone else or lock my arms behind me.

I am am still paralyzed from the waist down but I can get my hips to  make tiny movements.  I can't get anything at all from my knees or feet.  My hands, arms and shoulders are really weak.  I can hold my cup, silverware, and feed myself.  I can hold my phone, control the remote.  I can't raise my arms over my head though.  My diet was advance today to something resembling regular food.  It is called mechanical soft.  Everything comes up from the cafeteria already cut up, as if I can't cut up my own food.  I still am eating a lot of things like yogurt and pudding and mashed potatoes.  Stan got me a big smoothie this afternoon.  I still have some trouble with swallowing.  I have to swallow 2 or 3 times to get each bite down and I have to take really small bites and chew it forever.  I was already a really slow eater.  When we go out to eat, I'm going to have to tell them to bring my food out 1st so we aren't there forever.  I have to have a swallow study some time  while  I am here.  They are going to stick a fiber optic scope down my throat and watch what happens while I am swallowing.  It doesn't really sound fun to me but hopefully they can figure out what exactly is causing my swallowing issues and give me some strategies to fix it or they can figure out something else to fix it.

I want to thank everyone that is praying for me and my family.  I am a firm believer in prayer and have a lot of faith that Heavenly Father answers prayers.