General Update

I have been doing Ideal Protein since June 24, 2017.  My goal weight was 150 pounds or to be in a size 12 pants.  Two weeks ago,  I was able to buy 2 pairs of size 12 jeans.  They are actually a little bit big in the waist but I need the extra room in my hips and lower abdomen.  My weight was 158 though.  I thought about continuing with phase 1, but I was really sick of the Ideal Protein foods and I really wanted to expand my variety of foods.  I was planning on continuing a paleo/keto way of eating though. 
     On 1/14/19, I began phase 2 of the Ideal Protein plan.  The biggest difference between phase 1 and phase 2 is you go from eating 3 IP foods to 2 and you go from eating 8 oz lean protein to eating 16 oz lean protein.  I am having a hard time eating that much protein.  My protein still has to consist of meat and eggs.  No dairy products yet for protein.  I am trying to add little bits here and there to increase my protein amounts each day.  It doesn't help that I had to start antibiotics on Thursday for a UTI that cause me to have a bit of nausea.  In the past, we tried to avoid this particular antibiotic, but since I am allergic to most of the major antibiotic types, this is one of the few left to treat my UTI's, so I just do the best I can. 
     I am still losing a little bit of weight, but slower than on phase 1.  I will go to phase 3 on Thursday.  I get to add in dairy products and some fruit.  I am going to stick with berries and small oranges for now.  I will continue with 2 IP foods per day for 2 more weeks then I can go off them completely if I wish or eat them as I want to.  I will probably continue using the pancake mix since it is a nice low carb alternative.
     The other excitement in our life is that we are having to get a new van.  Last week, the ramp on my van broke AGAIN!!  I took it into the shop to be repaired and found out it was going to be very expensive to fix and they said there were other parts that would probably break down shortly after that.  The kneel already needed to be replaced, which puts extra strain on the ramp and that is expensive too.  I have some minor engine problems but pretty normal stuff for a 12 year old van with 120,000+ miles on it; oil leak, power steering leak, poor gas mileage.  My van doesn't like the cold.  It makes a lot of extra noise when it is cold and the van door works very slowly in the cold.  NOT a good thing when you have to sit and wait for the ramp to come out to get in the van.  We decided it wasn't worth it to fix the ramp and decided to replace the van.  They had a 2016 with less than 5000 miles on it that was 15,000 less than it would be brand new.  It is a Chrysler Town and Country.  I had really thought I would get a Honda when I replaced it, but they are so much more expensive and there weren't any available, especially in our price range.  This one is a top of the line with leather interior, power everything,  and lots of cool gadgets.  It is a tan color with a pearl finish so it will hide the dirt well since we have new subdivisions being built on either side of us so there is mud on the road all the time.  My white van is always dirty.  They had to order a transfer seat and a part to attach my hand controls since the one for the Dodge isn't compatible with the Chrysler.  They are going to install all of that on Friday and I get to take possession of it then.  I am very excited about getting a reliable van, plus having the added luxuries this one has, such as the automatic tailgate, the backup camera that isn't backwards, and a radio that will actually connect with my media player in my phone (my current radio will only connect to my phone but not the media player.  I have to manually connect the media player every time I get in the car, unless there are 2 phones in the car then it will connect the other persons, not mine-go figure).
     Lastly, I have an appointment with a neurologist in Dallas at UT Southwestern on February 20th.  She is a specialist in MS and autoimmune neurology.  Please pray that she can figure out why I have had those 3 episodes of ascending paralysis and that I don't have another one before I can go see her.  Also, pray that she believes there is a physical cause and doesn't blame it on psychological causes.  That happened to me early in my neurological history and I get nervous when doctors can't figure out a cause that they will start pulling out the psychological card just because they don't understand what is going on.

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.                                                                                                                                             

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.

In the ICU again

I intended to keep this up to date a little better but I haven't done a very good job.  I have a good reason to add an update now though.  Friday the 13th proved to be a bad day for me.  I'm not superstitious so I usually don't worry too much about the date except when I was working at the hospital because it always proved to be a busy shift.  Friday evening, we decided to go see Ant-man and Wasp.  It was a pretty good movie although not my favorite Marvel movie.  I was walking just fine for me prior to leaving the house.  On the way there, I went to move my foot of the accelerator to the brake and it wouldn't move.  Thank heaven for hand controls.  I had to use my hand to move my leg off the accelerator before I could break w/ the hand controls.  We got to the theater and I discovered it was both legs that were paralyzed, not just one.  That means this wasn't just one o f my MS flares and I needed to  watch for it to start moving up my body. I told Stan about it in the lobby and said we could go ahead and see the movie since we had already bought the tickets but if I felt the  paralysis spreading, I would let him know and we  would leave.  By the time the movie was done, I was paralyzed up to my bra line.  We sent the boys home in the Civic and we headed to the ER in my van.  Stan gave me a blessing in the van.  That was a 1st.

We got to the ER about 8:20.  I told the nurse what was going on and  what I had been through in April and they got me back in about 5 minutes even though there were several people there before me.  That is what triage is all  about though.  The ER doctor came in pretty fast. He had reviewed my medical records from my previous admission.  By this time, my arms were a little weak.  He  wasn't  messing  around and decided to admit me, but not to ICU.  About an hour later, the attending MD came in and I could barely move my arms.  Still  I was going to the floor though and not  ICU.  I was kind of surprised but figured it was probably because my diaphram wasn't involved last time.  By the time the nurse came in and told me I had a room ready and I was ready for transfer, I could barely move anything and they had decided  I needed to go to  ICU.  It was after MN now and no longer the 13th.  I think I  got to the  ICU around 1:30. Around 2am I  started having trouble swallowing.  I didn't have that problem last time. They got the 1st dose of  IVIG started about 2:30.  About 12 hours later, I started being able to move my fingers just a little bit.

I have had 3 doses now.  I have the movement back to my arms, shoulders and upper torso but they are very weak.  I'm starting to get a little bit of motion to my hips, but I have to assist a lot with my arms and  upper body.  So far I haven't gotten anything back to my legs yet which is disappointing.  I had to stay NPO all day Saturday but Sunday my swallow started getting better so they let me have purred foods and thin liquids.  It's a very limited diet.  It's also high carb and more sugar than  I have had in an entire year.  The worst part is that I can't swallow pills so they have to be crushed up and put in food or given IV.  Some of them are horrible tasting and make me gag.

I just found out they are going to transfer me to a regular room tonight.  Hopefully I will move to rehab tomorrow.

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.