This is beginning to be a habit

I know it seems like I only post when I am in the hospital or when something is wrong, but that is about the only time  when my life slows down long enough for me to write.  I do want to find more time to write because I want to write my life store but I don't want to post that entire thing on my blog.  There are so many people wanting updates though that I thought I needed to start updating again.  I also have been writing out my weight loss story and I do plan on posting that.  I'm going to post that in sections because it is 6 pages long in Google Docs.

So, on Sunday, we had an amazing opportunity.  President Russell M. Nelson came to San Antonio to speak at the Alamodome.  We left the house at 2pm and  got there and into our seats by about 3:45.  He wasn't speaking until 6, so there was a lot of waiting around to do.  There was a lot of people there.  One of the speakers said there were over 23,500 people there.  Elder and  Sister Bednar spoke.  Sis. Bednar's talk was about 5 things she learned living in Texas.  They lived in Texas for a while before Elder Bednar became president of BYU-I.  Several of their grandchildren were born in Austin around the same time I was having my children. Bro Ochoa of the 70 and his wife spoke.  Then Sis. Nelson spoke about what life has been like since her husband's call to be prophet and the change she has seen in him.  The President Nelson spoke.  His talk was a lot about the gathering of Israel both here and in the afterlife. 

So while we were there, my central nervous system decided to go haywire again.  When the prophet came in, I could stand.  I listened to all the speakers and waited until the general authorities were escorted out of the Alamodome.  I went to stand up when the prophet was exiting the stage and my right leg was paralyzed.  Since it was only the 1 leg, we thought it was going to be a normal MS flare and not an episode of ascending paralysis.  Monday morning when I woke up, my left leg was also paralyzed.  Now we were facing something new.  I have never experienced the paralysis onset like this before.  We weren't sure if this was an MS flare with bilateral paralysis or the start of another episode of ascending paralysis.  I didn't have any weakness anywhere else.  Stan stayed at home for an hour to see if I was going to get any weakness but decided to head into work around 9am.  I emailed Dr. Westgate to find out if she  wanted me to go to the hospital or go in to see her.  She emailed me back around 11am with instructions to go to the hospital.  I had just decided that I needed to go there anyway because my arms and  torso had started to feel weaker.

We got to the ER and they took me back to the room right away.  The ER doctor came in pretty fast too.  He had already looked over my history and my records from my previous hospital admissions.  It was already decided that I was going to be admitted.  I just had to wait on the attending doctor to come see me and for a bed to be assigned.  It took about 3 hours before I got up to a room.  By that point, I could only shrug my shoulders a tiny bit.  We were really surprised that they admitted me to a regular room this time and not the ICU like the last 2 times.  I got to my room around 6pm, got my dinner ordered.  Stan had to feed me.  After the boys visited and went home, I tried to go to sleep, only to wake up about 15 minutes later choking on my secretions.  I couldn't swallow my own saliva and I was having trouble breathing.  The ICU manager came up to my room and stayed  with me until the doctor could come evaluate me and they could get me transferred to the ICU.  The ICU doctor saw me as soon as I got to the unit and decided I was didn't need to be intubated yet and they wanted to wait to see if I could turn things around with the 1st dose of IVIG since it was currently infusion.  They did some breathing tests frequently over the next several hours.  I stayed borderline until partway through the next day.  I was finally out of the woods breathing wise by early afternoon.  I still required oxygen though.  I wasn't allowed to eat or drink anything except for 1-2 ice chips per hour because I couldn't swallow without choking.  That lasted until the next afternoon when   I was allowed to start with soft food and slowly advance my diet.  I finished my IVIG on Thanksgiving early in the am (like 4am.)  By the time the doctors rolled around at 9ish, I was able to lift my arms off the bed a little bit, move my hands, move my torso some and wiggle my toes just a tiny bit.

I've been out of the ICU for 3 days now.  I can raise my hands over my head well enough that I can braid my hair.  I can lift my torso off the bed.  I can turn myself with help.  I still have very little movement below my waist except that tiny twitches I have in my feet and my upper body is very weak.  I can't open my milk cartons, or some of the bottles, like soda bottles, but I am getting stronger every day.

The plan is for me to be transferred to the rehab hospital as soon as insurance approved the referral.  I'm going to call on Monday and find out when they estimate an answer.  I know I only have 60 days of inpatient rehab per year and I have used about 34 maybe, so I still have 26 days, almost 4 weeks worth.  I shouldn't need more than 2, maybe 3 weeks.  I usually bounce back really fast from these once I start going through PT/OT, especially

When the neurologist saw me in the ICU (not my normal one, but the one who saw me the last time I was here), he did make a few recommendations for me.  He thinks I should go see a neurologist at one of the teaching hospitals in Houston or Dallas once I am able to travel.  Dr. Westgate, my regular neurologist, has mentioned this once already to me, so she has been thinking this way too.  She hesitated though because the one I saw in Houston prior to seeing her said that my symptoms were being caused by stress.  I have no doubt that stress makes my symptoms worse, but they are by no means the sole cause of them.                                                                                                                                             

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.

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.

Neglected

I promised myself  I was not going to neglect this blog once my medical crisis was over.  I need to make sure I keep up with it.  I need to come up with a writing schedule of some sort.  I'm still trying to get my life back to normal after 5 weeks in the hospital.   It takes a while.  I'm finally feeling more like my normal self; I have more normal energy levels, at least for me.  I have chronic fatigue so normal energy is relative.  The home PT/OT discharges me last Friday so I will start out patient PT on Tuesday.   This means my schedule is going to get a bit busier since I have to fit PT in twice a week.  While working with home PT, I have started walking a little bit again.  I can walk with a quad cane or walker around our kitchen table up to 3 times on a good day.  After that, my right leg, which is my weaker leg, gets very shakey.  Still this is huge considering 1 month ago I couldn't move my legs at all and could just barely move my feet a little.  Still no answers on what is wrong with me or if it will happen again.  I think not knowing if it will happen again is the thing that scares me the most .

I've been trying to clear off my unfinished project shelf in my sewing room.  I have quilts and other half finished projects that I started several years ago but never finished.  Usually someone needed me to sew something urgently so my bigger project got shelved then never picked back up.  The first UFO project I'm starting on is a quilt for Jeremy that is a TARDIS  from Dr. Who.  I've been working on it pretty regularly for the last 2 weeks when time and energy allow and I am almost done.  Weakness in my arms no longer allows me to quilt large projects any longer so I pay someone else to do the actual quilting.  I am hoping it will go to the quilters before the end of the month.  I'll post pictures when it is complete.

Lastly,  I am back on track with losing weight.  I've lost 7 pounds since being out of the hospital.   I am getting really close to my goal weight.  It's less than 30 pounds away now.  I'll know exactly how much tomorrow since I use my weigh in at the office as my official weight.   I feel so much better since losing weight.  I look back at my before pictures and can't even believe I was that heavy.  I never want to be that big again.

Finally Home

I actually came home yesterday afternoon, a day earlier than planned.  On Wednesday afternoon, my PT met with my family and we made sure I could get into my van.  While I was sitting in the drivers seat of the van, my therapist made a comment about how easy it would be for me to just drive home.  As we talked more, we decided that I could go home after OT taught my home health nurse how to help me with transfers.  We worked it out with the case manager.  Yesterday, I sprung it on Dr. Latorre.  Usually they don't do therapy on the day you go home and I had a full day of therapy scheduled.  I didn't  see the point of staying there over night just to wait for home  health to be arranged.  I was so happy to be home.

The house wasn't as bad as it could have been.  The kitchen was about what  I had expected.  The boys consider "cleaning the kitchen" to consist of doing the dishes that are in the sink.  The kitchen counters were pretty messy with  trash, crumbs, sticky stuff and general junk that needs to be put away. The fridge had a lot of rotten food in there.  I threw some of it  away immediately.  There is still something in there that smells though.   It took all of  my will power not to go in and clean the kitchen.  I had to do a little bit of clean up this morning before I could make my breakfast but I'm trying to be careful and not over doing things my 1st day out of the hospital

The rest of the house was pretty good.  There were blankets all  over the couch which is pretty normal for us since the cats have scratched up the couch.  The table is cluttered.  Our bed had stuff all  over it but it w as an easy clean.  Our bathroom smelled like cat pee though.  Patches was diagnosed with a  tumor in her throat just a few days before I was admitted. She went down hill quickly and went off somewhere by herself and  passed away, or so we assume because she hasn't been seen for more than a week.  Prior to her disappearance, she was drooling everywhere and it was really smelly according to Stan.  She also kept peeing in she shower, so I'm sure she is the one who peed on the carpet in the bathroom.  Lucky may have done it too to cover up Patches marking.  You can just never tell with  cats.  They never did this in our old house but when we moved into the apartment while our house was being built, we had a problem with the cats doing their business in the showers.  That transferred over to the new house.  We put hinges on the  door to keep the bathroom doors closed.  We thought they had stopped so we let our bathroom door open when I couldn't  walk again just before Christmas.

Next week, everything in my regular life starts up again.  On Monday, I have my pain doctor appointment then in  the afternoon I will  have my home health PT eval.  Tuesday I have to have an EMG as part of the continued work up to figure out this ascending paralysis.  I will also meet with the OT that afternoon.  Wednesday is going to be my crazy day.  I have had an appointment with my urologist in the morning.  Then I have my 1st weigh in since being in the  hospital, then my follow-up with Dr. Westgate.  In between, I need to stop by Quilter's Folly to pick up my new block of the month.  Andrew is going to drive that day so I can preserve energy.  The rest of the week is empty so I can rest.  I didn't want my schedule to be that full so close to my discharge.  I would have preferred to spread those appointments out a bit but I've  had the pain Dr. appointment for over a month, and the urologist for 6 months.  Dr. Westgate wanted to see me the week after I  got out of the hospital.  I'm hoping she can get to the  bottom of this quickly.  The neurologist I saw in the hospital  told me that it was very likely that the ascending paralysis could happen again.  I hope it's easier to get answers this time than when I 1st started having neuro problems.  It took a year to diagnose me with MS.

The end is in sight

It has been a really long couple of weeks.  I was 1st admitted to the hospital on March 24th.  I have been in the hospital for 4 weeks and 3 days now.  1 week prior to this admission, I had spend 24 hours in the hospital with chest pain that  turned out not to be cardiac related but the beginning of an asthma exacerbation.  I am scheduled to go home on Friday.  I can't wait.  5 weeks of  being in the hospital is a really long time.  It's my new hospitalization record.  I hope it stands for a long time.

Over the weekend, it seems like my strength increased a lot.  On Friday I started being able to stand from my wheel chair and then pivoting over to the toilet.  It was pretty challenging at first, but it is pretty easy now.  It seems a little silly that the staff has to supervise me since they just watch to make sure I am ok.  I couldn't really take any steps on Friday on land or in the pool but today I was able to walk about 20 feet both within the  parallel bars and with a walker. 

Tomorrow my PT and  OT will  have a meeting with my rehab doctor to discuss my progress.  They are going to recommend that I be allowed to be independent in my room for all of my activities in preparation for discharge on Friday.  This week we are going to continue to work on arm and hand strength by working on my quilt block, leg strength and flexibility, core strength, fine motor skills and lots more.  When I go home, I will have Rehab without Walls which will come to my house for a few months to do therapy and continue working on all of these things.

I'm sure everyone is tired of  hearing about the hospital so I can start writing  about other things.  I also plan on starting to write some of my like history in this blog.  I have a booklet with life history prompts and I plan on  using those prompts as my post title and then my entire post with center around that prompt.  Maybe one of these days I can just make my blog into a book with some minor editing.

Progress Report

It's been a few days since I updated this because it's been just the same thing going  on every day here.  I've been going to PT and OT and getting a little bit stronger each day.  Today we added pool therapy.  Here is a break down of the things I couldn't do when I got out of the ICU but I can do now.  Some of  them are pretty small things, but are a big deal for me.  They are big steps toward independence even though they seems like such small things.  First of all, I can  roll over by myself and position myself in almost any sleeping  position.  I still have a little bit  of trouble if I need to position pillows under or between my legs but I can  get into a comfortable position on my own.

2nd, I can sit on the edge of the bed without falling over.  The last day that I was in ICU, the therapist had me try to sit on the edge of the  bed and  I  could not hold myself up.  I still have a little bit of  weakness in my trunk that shows up at various times, such as when  I am trying to stand, when I was in the  pool, and when  I am trying to bend over to pick  something  up from a sitting position and coming back up (like if I drop something)

3rd, I can transfer from my chair to the bed and vice versa independently.  I started doing  this  independently only 48 hours prior  to going to the ICU.  It's the quickest way for me to get in and out of bed.  This became possible only because my trunk became strong enough to hold myself upright.  I used a slide board to do this transfer.  The slide board created a bridge between  the chair and the bed or whatever else I am transferring to and I slide across the bridge.

The biggest thing is I can stand a little bit.  This allows me to do a stand pivot transfer to the toilet from my chair..  Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery.  Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet.  This gives me a huge amount of  freedom when I am out in public.  I won't have to carry my slide board with me when  I  go places or have to figure out  how to maneuver in a handicap stall that is just a little bit too small.

Overall, my strength is coming back too.  When the doctor does a neuro exam,  they assign a number to each  extremity for strength ranging from 0-5.  A score of 5 is a normal, strong extremity with no deficits.  It's been a long time since I have scored a 5 on a neuro exam.  A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid.  When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone.  It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement.  When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities.  Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+.  These numbers are a huge improvement from my ICU time.

I have 1 more week in rehab and then I get to go home.  It seems like I have been here forever.  I am so ready to go home.

Where did those muscles come from?

I have been in physical therapy for the years and years, mostly for my legs, especially my right leg.  It has been paralyzed multiple times.  With lots of PT and IVIG, I regain my ability to walk at least some.  I've had paralysis in every extremity in my body at some point over the last 10 years.  The majority of the exercise I get come from PT exercises and a recombant bike at a slow pace for 20-30 minutes most days.  These are not the kind of work outs that can make a person sore.  This is why I was very surprised when just a day of rehab made me very, very sore.  I started getting a little sore after my first 2 hours of PT/OT yesterday.  We did core work almost exclusively.  I took some Tylenol and felt better.  This morning though, I was very sore.  My back and obliques hurt a lot.  It's not my normal back pain.  My abs hurt too.  I guess that is what happens when those muscles are paralyzed for a few days, then have to be strengthened.  I feel like I did 500 sit ups.  I guess the soreness is worth it is because my trunk is stronger today than it was yesterday.  I can hold myself up for several minutes before I start to drift.  Do you know what the worst thing about being sore is?  Being in the hospital, I am limited to what the doctor orders for pain and they only ordered Tylenol every 8 hours.  Who gives Tylenol every 8 hours?  I need to get this changed as soon as I  see Dr. Latorre in the morning.

My ICU visit

I typed this up a few days ago but  it would not publish to save my life so  I just saved it but no such luck there either, so here it goes again, attempt number 2 to share with you my ICU experience.  It's one I hope  never to have to experience ever again.

On Sunday, while still in rehab, I woke up with my legs reparalyzed.  I let my nurse know and went back to sleep.  a few hours later, right during shift change of course, I woke up again and could not move from the waste down.  This was serious business and to this nurses brain meant lots of bad stuff was about to happen.  I tied not to freak out but insisted my day nurse call the doctor.  He didn't  hesitate to order an mri of my back and consulted with the attendings at the main hospital.  The rest of the day continued without incident until about 5pm when my hands started to feel weak.  I couldn't hold my phone or control my wheelchair.  This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement.  By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital.  I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands.  I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.

I received 2 blessings that day.  The first one was given to me by my husband when he got to the rehab center shortly after the  paralysis started to return.  I love Stan's blessings.  He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life.  Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time.  I  needed to  turn to my Heavenly Father in pray and turn to the scriptures.  I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me.  My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving.  I will be ther 1st to admit that I am not very good about letting others help me.  I want to  do things myself, even after 10 years of dealing with this disease. I have been really working on that though.  After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the  situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it.  Bishop's blessing told me I would be healed in the Lord's time and  I  needed to put the work into getting better but the healing process had already started.  I needed to stay faithful, which I did all week.  While there was reassurance in these blessings, they didn't keep me from being totally scared.   I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass.  I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ.  Each time I go through one of these medical trials, I learn a little more about the  atonement of Jesus Christ.  I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.

They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator.  They did a test every 2 hours to see if my diaphragm was getting weak.  By the 4th or 5th test, I was at the bottom limit for diaphragm involvement.  I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal.  I got a little bit out of breath when I talked and I was sleepy a lot.  I did best when I slept.  My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.

Monday afternoon I had to go get a spinal tap to test for a bunch of things.  I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old.  They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true.  My body was completely flaccid.  Interestingly, even my neck, which for all intense and  purposes doesn't seem effected because I can still move it,  is no longer tight and spastic like it usually is.  That part is really nice actually.  I would like that fact that I have no spasticity if I could actually walk and move my body around.  "Body, you did not need to go from one extreme to the other, you really didn't."  I don't know why I just bothered trying to tell my body that little bit of advice.  I don't know about your body, but mine never listens to me.  I was never a rebellious teenager, but I have a rebellious 40+ body.  I wish I would have been a  rebellious teenager if this is the trade off 😁

Ok, now that we took that little detour, back on track.  After I got back  to the ICU from the spinal tap, they started another round of IVIG.  It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the  next as far as total dose.  Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days.  The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month.  My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit.  I slowly regained use of my hands, arms and torso as the night progressed.  Nothing from my legs or hips though.  I'll take what I can get though.  I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger.  It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me.  I know the blessing told me that I would regain use of my body again, but when you are laying  in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch  your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.

 My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks.  It's really hard to write)  I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date.  Those kinds of things really discourage me and they are defeatist thinking.

I had my PT and OT evaluations today.  I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back  quickly.  Their evaluation on top of the blessings I have received make me confident that I will walk again.  I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.

 I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything.  I hope everyone has a great weekend

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

More transfers and more standing.

The 1st full day I was here, I was asked what my goals were.  I said I wanted to be as independent as possible so I didn't have to rely on my family for my basic needs such as ADLs,  I have always greatly valued my independence.  I am willing to ask people to help me do things so that I can preserve my energy but I don't want to have to have people do the most basic things for me.  I don't want to be pitied or treated like I am weak.  My legs are weak but I am not weak.  I may not be able to make a big family meal, but I want to be able to make my own meals for myself or heat up leftovers.

Next,  I wanted to be able to stand so I can do my weight checks for my Ideal Protein diet.  Being that there is a big gap in this blog, it is not really clear here that I have lost 60 pounds since June 19 and I have 40 more to go.  I need to be able to weight in weekly to monitor my progress.  It's possible to weigh in a wheel chair but it is a pain in the butt.  Worse case scenario I would make an arrangement with Dr. Latorre (my rehab Dr.) to weigh at his office every week or 2.  I would prefer to use the IP scale because it tells body fat and lean body mass but this would only be worse case scenario.  I am well on my way to being able to stand on the scale though.  I have been  able to stand at the parallel bars with lots of extra support.  I can shift my weight side to side.  The strange thing with standing up is that I  can't feel my muscles engaging when I stand.  The staff tells me my legs are doing all the work but I don't have any control over it and I can't feel the muscles doing anything.  There is an exercise bike I use that can tell us when my muscles kick in and when they are just flaccid - it all feels the same to me.  It is very strange.  It is also very strange that there is NO tone in my legs and no muscle spasms.  We are still decreasing the baclofen dose since I don't need it.  Dr. Latorre has cut it in half or more in the 10 days I have been in the hospital

To be independent, I have got to master these transfers and that has been harder than I thought.  I've mastered transferring from the bed to chair and back.  I'm getting pretty fast and it's pretty smooth.  The toilet and the shower are another story.  I think it's managing the clothing.  I won't get into detail because that  is TMI.

Lastly, I will probably get a speech therapy evaluation.  I don't know if anything will come of it but we will see.  Any of you who converse with me regularly know about the problem I have with switching words so things don't always make sense, forgetting words, not being able to say words properly, etc.  I only scored a few points under passing but it qualified me to have an evaluation.  I'll post about it after I have it

Some good things happened today

I think I've recovered from being totally overwhelmed on Saturday although I will admit I still haven't mastered betting my pants down, getting to the toilet, doing my business, getting back to the chair and getting my pants up.  That is what started getting me overwhelmed in the 1st place.  It's getting a bit easier but the transfer board just doesn't stay very well on the toilet and it is hard to get your underwear up when you can't stand up.  I have to recline my seat all the way and roll back and forth hiking up each side.  It wears me out.  The staff wants to help me a lot, especially the new tech but it is important that I do as much as I can by myself but then I have to realize that I am still learning how to do all of  this and I still need a lot of help so I need to realize when I need it.  It's a balancing act.

When I worked with physical therapy this afternoon, she had me standing up for 20 minutes.  Now before you get excited I was not standing by myself.  I couldn't even feel my muscles activating while I was standing.  I was in standing frame that pulled me into a standing position then held me there.  After a short break, I was able to do a few minutes of standing at the parallel bars on my own.  The 3rd time, I did feel my muscles engage but it was erratic and out of control.  Regardless, it was muscle engagement and it is a start.

Dr. Latorre decreased my baclofen dosage again.  Still no spasticity.  It still feels really strange to not have spastic legs.

My therapist have a meeting with my doctor tomorrow and they will give me a better idea of how long I need to be here.  My OT was telling me today that she thinks until maybe next weekend so that means no Bluebonnet  shop hop.  I'm bummed.  It was going to be so fun doing that with Delia and Margie.

My diet has really suffered the last 2 days.  I have had a lot of cravings, way more than usual.  I'm sure that means I am no longer in Ketosis.  When I am firmly in  Ketosis, I really don't crave sugary foods at all.  The last 2 days, I have had many, many times when I needed to eat when the only thing available is the food on the unit and there is nothing IP friendly here.  I have had 2 snacks of graham crackers and pudding.  Andrew is picking me up a new weeks worth of IP snacks.  That will help with these between the meal munchies. 
Getting sleepy so I am off to try to sleep.

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.