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.

First weekend of rehab

I transferred from the main hospital over to the rehab hospital Thursday night around 6pm.  I was a bit miffed after I  called the insurance company and they told me on Thursday afternoon that they had only gotten the request for rehab on Wednesday afternoon.  The order for PT eval was written on Sunday afternoon.  It wasn't actually done until Tuesday. 

Friday I had all of my PT/OT evaluations done.  I have a lot of work to do.  My trunk and arms are very weak.  My legs are both paralyzed still.  I can't move from the waist down.  I'm not sure how long I will be here.  Probably at least a week.  I had regular therapy on Saturday.  It was decided I didn't need speech therapy for swallowing issues.  I still have some minor swallowing issues but they believe they are from reflux problems combined with a little bit of swallow dysfunction.  They don't  think they can do much with speech therapy until I get my reflux problems under control.  I have been on  several medications to control it and nothing seems to be working.  It seems to never been under control. I have an appointment with a new ENT who specialized in laryngeal-pharynx reflux.  Maybe he can get to the bottom of the problem.  I am almost wondering if it is time to consider surgery for my reflux.

I also got to take a shower yesterday for the 1st time in 8 days.  I had had sponge baths and used dry shampoo but that just isn't the same thing.  My hair looked so gross before I got into the shower and it felt even worse.  I had to even change my pillow case because it felt grease from my hair.  It was disgusting.  The last time I had washed my hair was when I colored it, so my hair dye got all over the towels.  When I  had my kids, the hospital nurses tease you that you lose all your dignity and you will show your body to anyone after you have a baby.  I argue that rehab is absolutely worse than having a baby.  You have to have so much help getting dressed, moving from the wheelchair  to the bed/chair/shower/toilet, pulling pants/underwear up, etc.  The staff here gets really used to it, so it isn't unusual for someone to be sitting in a wheelchair butt-naked when the staff helps the dry off, get dressed etc.  The "staff" can consist of therapist, therapy assistants, nurses, techs, and just about anyone else.  The only person who hasn't seen me naked while I have been in rehab has been my doctors.  Sorry for the TMI.

Another TMI topic is my catheter.  I was hoping I could get it out when I came over to rehab.  In general, Dr. Latorre doesn't like his  patients to have indwelling catheters in and likes to get them out as quickly as possible.  He did last time.  This time, he isn't rushing it.  Since I can't sit up on the toilet on my own yet and my hands are still weak, Dr. Latorre wants the to get a little bit stronger before he takes the catheter out.  This thing is driving me crazy.  I really want it out.  The plan is to try to take it out on Monday and see how I do without it.  I have to use a catheter on a regular basis anyway but I just drain my bladder and don't leave it in place.  The OT didn't feel like I had the muscle control in my hands to be able to insert the catheter right now so thought I needed to continue to have the indwelling catheter.  She also felt I didn't have the upper body control to sit up on my own to be able to use the I&O catheter.  I've used it laying in bed before, I just have to have extra help since I can't see when the container is full or the catheter stops flowing.

I hope I will  get to start pool therapy tomorrow.  I get so much progress from being in the pool and I don't have to worry so much about my upper body weakness and gravity and falling.  I can actually work on my legs and my core without worrying about falling.  I can do so much in the pool that I can't do any where else.

As much as I hate being in the hospital, I'm glad I don't h ave to be out there in the heat.  Yesterday, Stan and Rachael were here visiting and we went over to the gift shop.  It was 105 outside at 4pm.  The heat index a that time was  108.  We never left the shade so I never felt the full effects of the temperature.  Today,  the actual temperature is  suppose to be 108.  It's 2:55pm right now and it is 104 outside.  It eels like 108-109.  It has been a really, really hot summer.  We have had over 35 days that have been over 100 degrees so far this year.  We haven't even hit August yet.  August is going to be a scorcher.

I want to again thank everyone for the prayers given on my behalf.  Thank-you to those of you who put my name on the prayer roll in the temple.  If you read this blog, let me know.  Leave a comments just to say HI.  I feel like no one is reading this except my dad because he tells me he reads it.

Big leaps forward, then 1 step back

I will warn you THIS POST CONTAINS MANY TMI STATEMENTS SO READ AT YOUR OWN RISK
I know that  is not how the saying  goes, but I  feel as though I took  more than  steps forward for my little step back  today.  My sleep was really off last night despite Dr. Latorre having me on scheduled sleeping pill.  I've never taken a sleeping pill regularly, or even as needed.  I've taken Ambien once and that knocked me on my backside.  I got 1 Ambien tab before I left the hospital after going in for preterm labor and getting a bunch of shots to stop it (the shots make you very jittery).  I don't remember getting  home, and then I slept for 22 hours straight except for stumbling to the bathroom  every few hours (I was pregnant)  Because of that experience, I shy away from sleeping pills.  However, Dr Latorre (my rehab Dr in case you don't remember) wants to make sure I am getting adequate sleep so he  has ordered a sleeping pill to be given every night.  Last night, not even that was enough because I kept waking up to pee   When you can't walk to the  bathroom and you have to use a catheter to pee, this can take quite a while and can result in being wide awake when you are done.  Despite being careful not to drink too much after 8pm, I had to pee 3 times last night.  Sometimes it was a lot and sometimes it wasn't.  Then I started itching a lot which is one of my annoying MS symptoms so I put lotion on the effected areas, benadryl cream and finally just asked for some oral benadryl.  I had 3 bouts of sleep that were 2-3 hours each.  I was not ready to wake up.

Now this am, when the nurse took my am vitals, my BP was 100/56.  For those of you who are not medical, this is a low BP.  It I  was someone who was walking, it could have made me faint when I stood up out of  bed.  Since I was moving to the wheel chair, that wasn't a problem.  We did hold my diuretic which keeps my legs from swelling because I am in the wheelchair all the time.  I had some dizziness during PT a short time later and my heart rate was pretty fast, like 120.   My BP was good after a few hours of drinking a lot of fluids. My HR has been up most of the day, higher than my norm of 95-105.  I kept having to pee really frequently though but only had small amounts.  Usually I can only tell if my bladder is full when I have more than 750cc of urine in there but this am it was 200-300cc and I felt like I was going to burst.  A urine culture has been sent but the urninalysis was normal so we will just have to see how the culture comes out.

While all of this was happening this morning, I started having some muscle spasms again.  I would have been perfectly happy if they never came back and they took my pump out. This is one of  the biggest reasons all my doctors and  I were sure I had a UTI. No change in dose on my pump today.  We will see what happens with my spasms today.  I did get the OK to do  my bed to chair transfers alone today, but I can't go to the bathroom by myself.

I my speech and cognitive therapy today, I was given the game Luminosity on the tablet as my homework assignment.  It was challenging but I was surprised to find out when it scored me that I did better than 20-39% of the people who are my age

Progress Report

I'm not going to report on the things I did today because frankly, it's the same things every day as far as therapy goes.  I will tell you about the great progress that I has become most apparent today.  When Dr. Latorre came in to adjust my pump more today, he assessed movement, strength and spasticity/tone.  Still no spasticity or tone, which is still so strange but I could more my right foot at the ankle rather than just the toes and my left one actually moved some at the ankle.

In the therapy gym. I stood quite a long time with support.  I was able to take a few very small steps with assistance.  I think if my foot didn't drag so much on the ground I might be able to take bigger steps.

In the pool, I walked about 20 feet although the PT had to scoot the  rt foot along.  I can do a lot more exercises in the pool and have more movement.

I also worked with the speech therapist today on strategies for when I forget words or when I replace words with wrong words.  Many of them were things I am already doing.  We also discussed memory strategies.  I used to have a sharp memory.  Now it's as dull as a ball.  I do all the things she suggested there too.  Use a calendar, use a check list, keep notes in a smart phone or notebook. Set alarms for things.  These are all things I do on a daily basis so I don't forget appointments, things I have to do, projects I want to do, grocery items, medications, etc.  I'm glad I'm an organized person or I could never keep it all  straight.

Sleeping pill is kicking in again so I am off to the land of ZZZzzzzz.

Rocked Transfers, Added Pool time

I can honestly say that I ROCKED transfers today.  I did most of my transfers today without the use of  the slide board.  I did what is called a squat pivot transfer.  We started doing that yesterday in the bathroom after struggling with the slide board and pinching the inside of my leg, causing a big blood blister.  It hurt so bad.  Also the slide board fell into the toilet.  That  is what made the decide they needed to figure something else out for the bathroom.  Now, my legs have gotten strong enough that I can pull up with the bar, stand for 30 seconds or so to pull my pants down, then sit back down, then stand and pivot over to the toilet.  I repeat this process on my way back, with a rest stop in between.  I can do all of my transfers pretty much by myself with just a little bit of supervision.

This morning, we started some therapy in the pool. I couldn't walk or swim from station to station so she had to carry me which felt strange.  Once I was there, I was able to do more in the water than I  could in the gym.

I also had a more extensive speech and memory evaluation.  I did fine on the evaluation.  As I explained the problems I have with my speech, such as replacing words in conversation, forgetting the names of objects and people.  Those are the biggest.  Of course, those couldn't be replicated in the evaluation.  Those are usually things that come up in higher stress situations.  She just showed me pictured and asked me to  identify them.  I had no problems with that.  She also did a longer version of the memory test and I did poorly on that again.  We decided not to pursue speech therapy here because it will detract from the other therapy I need.  I get 3 hours a day of therapy no mater what kind of therapy it is.  Once I get a little more mobility back and I am not needing such intensive PT, I may look into speech therapy a little more.

The nurse just gave me a sleeping pill that Dr. Latore insisted I take while I am in the hospital and I am having trouble staying awake.  I really need to post around dinner rather than at 9pm