I forgot...

...to add to the post below that I was weighed on Sunday and I have lost 8 pounds since being in the hospital.  That weight loss put my at my weight loss goal.  Now I am not counting on this being a 100% accurate weight, neither am I counting on it staying there.  I say that because my weight fluctuates a lot in the hospital and because they weighed me by weighing my in my wheelchair, then weighing my chair by itself.  They had  a hard time getting my chair to stay on the scale by itself so he was having to hold it there while trying to touch it as little as possible.  My chair weighs 400 pounds.  That is 100 pounds more than I thought it did.  That sucker is HEAVY!!  I was excited anyway.  I'm trying really hard not to blow it and screw up for the next week that I am here.  I'm ready to be on maintenance.  I figure this is good practice for how I need to eat the rest of my life so that is what I have been doing, trying to eat like I am in maintenance.

First week of Rehab

I haven't posted since I have been in rehab, so I figured I should give everyone an update, if anyone is reading this.  Day one of rehab is just evaluations.  I was hoping I would get my same physical therapist that I had my 1st 2 admissions, but I saw someone from a different floor for my evaluation.  She wasn't going to be my therapist and didn't  know who I would have.  My OT wasn't the same either.  I had a different one in March/April and in July.  I had worked a few times with the  one I got though and  I like her.  My PT, Kelsey, was my second choice if I couldn't get Victoria back.  I know, you probably don't care, but I might want to remember  this later.

Evaluations,Thursday November 29th- I can sit on the side of the bed now but I'm still  a little unsteady.  I can't move my legs but I can wiggle my toes just a tiny bit.  If you blink, you will miss it.  My arms are weak.  I can lift them up to my head but not all the way over my head.  I can transfer from the bed to the chair with the transfer board but it takes a lot of effort and  leaves me exhausted.  PT tried to get me to stand but she had to pull me up most of the way and hold me up the entire 10 seconds so I don't really think that counted much.  She said she could feel a little bit of muscle activation when I did that though, so the potential  is there.

Each day I have gotten a little bit stronger, gotten a little bit of movement back here and there.  I have been sore and tired.  I felt like I have been working out with heavy weights for hours on end rather than just 1# weights and trying to move my own legs.  On Monday, I started pool therapy.  In the pool, it is so much easier to move around and walk. The 1st day in the pool 2 days ago, I walked about 6 feet and I had to rest half way there.  Today, I did 2 laps of 6 feet in the pool before I had to rest.  Yesterday, I walked 8 feet on land with a walker.  My core strength is almost back to normal.  I can tell I still have a little bit of work to do because my abs and obliques are sore after therapy.  All of this therapy has really kicked up my muscle spasms.  At first, the spasms would help activate my muscle movement.  Now that I can get the muscles activated myself, the spasms just make my muscles more fatigued.  Tomorrow, my doctor is going to make adjustments to my baclofen pump to help those spasms.  It is a fine balancing act.  Too much baclofen and my legs get weak, not enough and I have muscle spasms.  For the most part, my dose is spot on and I only have to have it tweaked occasionally.  It was one of the best things I had done.

I am scheduled to go home on December 12th.  I am confident I will  be ready to go home.  I may not be walking very much, but enough that I can stand at the kitchen stove to cook and stand up to get the higher things I need in the kitchen, especially since I will be home alone during the day.  I am a little bit nervous about that part.  I have never been home alone when I first come home from the hospital.  I have always had someone at home to help me.  I am sure that  I will be fine.  I usually didn't  need the help but it was nice to know that Andrew was there if I needed him.

I'll be posting the next part of my weight loss journey soon.

Approved for rehab

I finally got approved for rehab yesterday.  So now that we have insurance on board, the rehab hospital didn't have any beds.  I was so frustrated.  When you are inpatient in the regular hospital, you get 30 minutes of PT every other day.  When I'm in the ICU, that is about all I can tolerate.  Now that I am on  the floor, I need so much more.  When I get to rehab, I'll get 3 hours a day, more if I go to the pool.  I need all of that if I am going to get back to walking.  They told me they should have a bed for me this morning.

I am doing better staying on my diet this time.  It is impossible to stay 100% on a ketogenic diet in the hospital.  I can't get the hospital to send me enough vegetables, and the proper vegetables to meet that requirement.  Plus, so much of their menu is centered about pasta and bread.  I'm trying not to have bread type products more than once a day.  I will be excited if I can maintain through this hospitalization.  When I get home, I am hoping that I have not gained any weight, then I can get back on track.  I had 8 pounds to lose when I entered the hospital last week and I am determined not to let this hospitalization set me back too far.  My goal was to start transitioning into maintenance after January 1st and I still want to do that if at all possible. Being so close to maintenance, this will actually give me a good chance to test the waters.  I'm much more ready for the challenge of that than I was during the summer.  I just stress ate a lot during my summer hospitalization and ended up gaining weight.  Of coarse the fact that I haven't gotten out of bed in 9 days doesn't help my weight at all.

Devotional from a prophet of God

Here is a little video clip about the devotional in San Antonio we attended.  I didn't know there was a Q&A with the prophet and some youth.  That would have been so cool to attend.  Jeremy would have asked him "Where is the sword of Laban?".  There was a Q&A with the stake president and  our youth a few months ago and that is what Jeremy asked the stake president.  He answered by quoting a scripture in the Book of Mormon that simply says "I know not".  I can't remember the reference but I will ask Jeremy later and come back and add it.

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.                                                                                                                                             

Stan and I at the devotional, 11/18/18

Here is a photo of Stan and  I that was taken at President Nelson's devotional on Sunday, November 18th. Patricia Hodge shared a photo with you  View photo You received this mail because Patricia Hodge shared these photos with you. If you no longer wish to receive email notifications of shared photos, unsubscribe here. Get the Google Photos app Google LLC 1600 Amphitheatre Pkwy Mountain View, CA 94043 USA

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.