Sticks and Stones, Part 2

Six months after I graduated from nursing school, I got engaged to be married.  I got married 4 months later. During the 1st year of marriage, I gained about 10 pounds, but I was still pleased with how I looked and felt.  There is just something about being happily married that makes you a little complacent with your diet. The year after that, I was pregnant with my 1st child.  I gained 38 pounds with my pregnancy. I did the Weight Watchers plan when my daughter was 6 months old and lost the last 15 pounds I had left in just few months.

Now I know that all of this seems like minor weight issues of a young adult women.  Little did I know it was about to get much worse. I have had asthma since I was 11 years old.  When I was 25 years old, I had a severe asthma attack and had to go on steroids. It took 3 years for me to get off of them.  I had to be hospitalized for my asthma during that time and we struggled with multiple medications and doctors visits to keep my asthma under control.  I couldn’t breathe very well so I couldn’t exercise very much, especially if the weather was cold, wet or the pollen counts were high. My weight exploded no matter what I did.  I was so hungry all the time. I never felt like I was full. My weight went up to 220 pounds. It was the heaviest I had ever been. My face was really puffy. I had a “moon face” from the steroids.  My weight stayed up there for a few years. I tried several diets during this time. Susan Powter was really popular so I did her diet. She was the queen of the low fat fad. She believed that you could lose weight if you kept your intake of fat really low, like 10%.  She also was a huge advocate of eating things that weren’t processed. She said before you ate something, you should ask “Did it grow that way?”. I started eating more produce as a result of that question. However, just because something is low fat, doesn’t make it healthy.  Many low fat items are loaded with sugar. I recall may mornings I would have a “whole wheat” bagel and fat free cream cheese for breakfast, or steel cut oats with honey and cut fruit. Both of those were considered healthy choices but are both loaded with sugar and carbs. I never looked at the sugar, carbs or really even the  total calories of the things I ate. I calculated the percentage of fat and that is how I decided if it was ok for me to eat. I did lose some weight on this plan, but found it was not maintainable nor was it consistent. The low fat foods frequently lacked taste so there was no incentive to make them a part of your daily life, with the exception of fruits and vegetables.  Low fat crackers, breads, etc taste like cardboard. I wanted to enjoy the things I ate.

To complicate matters even more, I had a second child during this time too.  During my pregnancy, I had to spend 6 weeks on bedrest for preterm labor. Thankfully I only gained 13 pounds during my 2nd pregnancy and left the hospital a few pounds under my pre-pregnancy weight.  Some doctors will tell you that breastfeeding is a good way to lose weight since it burns additional calories to produce breastmilk. I can tell you that that is a lie. I have breastfed all 3 of my children and I cannot lose weight while I am breastfeeding. Then, it was much harder to get to the gym and  make healthy meals with 2 young children at home. My 2nd child was a demanding baby. He had colic as an infant, then developed severe separation anxiety when he got a little older. I couldn’t leave him with anyone, sometimes not even with my husband, or he would just scream until I got back. Weight loss was not my major focus.  I wasn’t gaining weight at this point though. I was maintaining my weight, so I can’t beat myself up too much.

To be continued...

Sticks and Stones, Part 1 (reposted)

The first time I posted this, it scrolled it across the screen and cut everything off and I didn't  notice it. I deleted that  post and I am reposting it now.  Sorry about that.

“Sticks and stones can break my bones but names will never hurt me”.  When I was growing up, that is what we were taught to tell a bully when they called us names that were intended to belittle us.  As a young adult in my mid 20, weighing over 200 pounds, I realized that the phrase should have been “Sticks and stones will break my bones but words will hurt forever”.  

When my step dad came into my life, I was 10 years old and built like a toothpick.  Over the next few years, puberty entered my life and I got my curves like I was supposed to.  My step dad made fun of me for it. He called me “Fatty Patty” and would make rude comments about gaining weight.  I thought I was so overweight in high school. Looking back at photos, I wish I would have realized I was at a healthy weight. I have never been the supermodel thin girl that some of my friends were though.  All I needed to do was develop good eating and exercise habits to make sure I stayed that way. I did OK all through my junior year in high school until my senior year. I started working a part time job and would stop and get fast food  on my way home from work. My mom wasn’t the best cook and I never had time to eat at home. We also never ate fast food when I was growing up. My single mom could not afford it so it was a luxury for me. I started my senior year at 135 and ended it at 175.  This was the beginning of my weight problem, the beginning of my yo-yo dieting. This was going to be a long road of body hating and body shaming.

After high school, I went to nursing school.  Nursing school was one of the most stressful things I have ever done in my life, maybe up until this past year, but you will learn more about that later.  Almost everyone gains weight their 1st year of college. I didn’t have the added issue of moving away from home, living on dorm food and all of that. I lived at home all through college.  My second semester of college, I went on my first serious diet. I had to get a PE credit and I had always loved gymnastics, so I took a gymnastics glass for 1 credit. My weight was somewhere between 180-190 at this point at age 18.  I was out of shape too. This wonderful gymnastics instructor took a special interest in me and spoke to me after class one week into class about my weight. She offered to help me with a weight loss plan and I accepted. I started on the Scarsdale Medical Diet.  This diet was popular in the late 1970s and the 1980’s. It was very similar to the current low carb diets that are popular now. The diet gave you a specific meal plan to follow for a few weeks then you were supposed to eat a more regular diet for 2 weeks. It was more involved than that, but it was a long time ago so I don’t remember the details.   My weight fluctuated some during nursing school due to stress but by the time I graduated, I was down to 145. I was almost 21 years old. It was a big struggle and I fought some pretty big demons right after I graduated. When I was working night shifts at the hospital, it was really easy for old eating habits to creep back in. I started to get very obsessive about tracking calories and about what  I ate. My roommate commented once that she never saw me eat. I blew it off, figuring it was just because I worked nights so we were never awake at the same time. I realized though that she was right. I was hardly eating anything and I was taking a lot of vitamins and telling myself that would be enough. I got some counseling and stopped the behavior before I became anorexic. Looking back, that really scares me.  I have seen myself in both extremes - the overeating and the under eating. Neither one are pretty.

To be continued...

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.

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.

Crappy day today

After having such a wonderful day on Friday, today has been a really crappy day.  It all started yesterday actually.  I really struggled yesterday with feeling very emotional.  Going out on a pass on Friday was wonderful but coming back into the hospital was so hard for me.  It made me so sad, almost depressed.  I tried to put on a happy face and just do the best I could but I really struggled.  It was made worse by the fact that I had no therapy on the weekend.  Typically, you get therapy the 1st weekend you are here, then the following weekend it just depends upon census and the therapist that  are here.  The unit was pretty full  and there are a lot of therapist on vacation, so I got no therapy this weekend at all.  I just kept thinking there is no reason for me to be here.  I was on the verge of tears all weekend.
     Then yesterday I "walked" Stan to the car when he left the hospital for game night.  I was outside for about 20 minutes in the heat.  When I came back in, my BP was elevated to 160/108 and my HR was 118.  I was having  palpitations.  After about half an hour, things were back to normal.  It happened 1 other time.  Then today I had an asthma attack and had  to have a neb treatment.  That had my heart racing but I knew it  was only medication side effects.  This morning, I woke up with really bad abdominal pain in my right upper quadrant, along with some tenderness.  The doctor ordered an ultrasound and it was normal, although it took all day to get it done.  I had to be NPO for 6 hours before it could be done, but they took 8 hours to get here to do it.  I was hungry and grumpy all day long.  It was not pretty.  I had no further palpitations but I did talk to the attending about it and he wants to get a STAT EKG if it happens again.  I have had a full cardiac work up so I  don't think it is any big deal.
     Now I have had my US, I've been able to eat and I feel a little better so  I am not  as grumpy but I  still l feel like I am on the verge of tears again.  I was a total party pooper when it came to the family games.  I hung out with Stan and the boys.
     I think it is time for me to be a little more pro-active with these feelings of depression.  I need to start talking with Eden again, even if it is over the phone for now.  I need to be journaling.  I also need to let go of  some expectations.  I have been having a hard time with the fact that I get no visitors except my immediate family.  Stan and the boys, Rachael and Zack.  No one from church has visited.  My own brother hasn't even visited me, nor did he visit me the last time i was here.  .  He doesn't call me either.  He is such a weenie.

I walked today

Today was a big milestone.  I walked 5 feet today both in the pool and in the therapy gym.  In the pool, I could only take tiny steps.  The water helped me move my feet a lot.  Later in the day, my therapist  had me try to walk in the gym between the parallel bars and at first I couldn't move my feet because I had too much friction on my feet with my shoes on.  Then she took a piece of paper and wrapped it around my toes and taped it to my shoes.  That allowed my feet to easily slide across the floor with very little friction.  After that, I  walked about 5 feet holding onto the parallel bars. 

On Tuesday, my rehab doctor, Dr. Latorre, met with my PT and my PT and my nurse for that day to discuss my progress and plan for discharge.  He set my tentative discharge date for August 3rd.  This hospitalization will end up being a total of 3 weeks, 1 week in the main hospital and 2 weeks in the rehab hospital.  Stan was really hoping that I wouldn't have to be in rehab as long since I was just in rehab only 3 months ago.  I learned a lot of skills that I would need to use while I was weak.  However, I was too weak to use many of those skills to start with.  I couldn't sit up when I 1st got to rehab so I couldn't  even transfer with the slide board.  I had to be moved with the lift.  Now I can transfer from the bed to chair and to the toilet by doing a stand and pivot.  I put my legs in the position I need the to be, stand up and  turn my body.  My legs don't move at all during this type of transfer.  My arms do most of the  work.  It's basically just hopping from the bed to the chair using my arms for support.  Going from my chair to the toilet, I use the grab bars next to the toilet to hoist myself up and I swing my hips over.  It's getting easier to move this way each day.

Tomorrow Stan and I  will celebrate our 27th wedding anniversary.  I am so grateful to have such a wonderful man for my husband. He has been  my rock through the last 11 years as I have battled MS and  now whatever this latest neurological illness is.  Our marriage is stronger now than  it ever has been.  I can honestly say that we have never had a fight.  We have disagreed on things and  had discussions about them, but we have never had a fight about them.   Dr. Latorre is giving me a pass tomorrow so I can leave the hospital for a little while so we can actually celebrate.  We are going to go out to eat somewhere, probably Joe's Crab Shack, then we haven't figured out what we are going to go do after that.  We may go home for a little while before we have to come back to the hospital.  We have to be back  here before midnight.  We are going to leave as soon as my therapy is finished tomorrow.  I'm hoping they have me scheduled earlier in the day rather than going late into the afternoon. 

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.

I almost forgot

I almost forgot to post about my weight loss milestone this past week.  I have hit the 70 pound lost mark.  Actually, I am down 72 pounds.  I have about 25 pounds to go.  Here is a photo of me at 247 pounds.  I took it the day I started Ideal Protein.  My "BEFORE" picture.

Here is a picture I took the other day at Target when I tried on this dress. I wasn't sure of  how it looked on my, especially the stripes, so I sent Stan a picture for his opinion.  It is a size medium.  The clothes I am wearing in the above photo are a size 2XL top and a size 22 jeans.  I kept this entire outfit so when I am done, I can put it on and everyone can see how I will drown in it.  I am currently wearing a medium in most things, especially tops and loose fitting dresses or full skirts, and large in some things , like pants, especially if  they have a zipper.  Birthing 3 babies gave me big hips and a genetics gave me a big butt.  If it is a number size for pants, I need a 14.  I am aiming for a size 10 or 12.  I think losing 25 more pounds will  easily do that, especially since some of my 14s are starting to get a little bit bigger in the waist.  It's just the butt and the legs that are still more fitted.

The stripes going in 2 different direction give this dress a strange look at my waist.  You can see my baby fat in the photo around my lower abdomen (from having babies, not being a baby) but you can see it because I am wearing my swim suit and it actually made that  part of my body stand out rather than acting like a girdle like I though it would.  It is much more flattering without the swimsuit under it.  You can also tell a lot in my blog photo.  My face looks so thin compared to my before photo.  After I  get out of the hospital, I want to take some better current photos.  I'm not going to  take the photos with my old fat clothes util I  have lost all the weight I  want to.  Also, Rachael and I can wear the same size tops, but not the same size pants.  I have a bigger butt than she does.  She has bigger boobs than I do though.

With the swallowing problems I have had this weekend, I have had more sugar in the last 5 days than I have eating in the last 5 months.  I have eaten about 10 containers of pudding since I've been in the hospital.  I got a bunch of Ideal Protein pudding and had Andrew pick it up today so I won't be having all that sugar so much.  I have to take my medication mixed in pudding or apple sauce, both have lots of sugar and I have to  eat a lot of soft foods, so i am getting a lot of puddings and yogurts with my meals.

I am finally ready to fall asleep I think.  I  have been up most of the night with pain in my legs and just general can't  sleep because I am in the hospital.

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.

What else can go wrong?

Actually, I learned a long time ago not  to ask that question because the answer is LOTS!  I mentioned in my last post that I have started walking more now.  Since I can walk some, I haven't been using my wheelchair in the kitchen when I prepare my meals since cooking from a wheelchair is a bit difficult.  Since I started standing to prepare my meals, I started having trouble with dizziness after I stand for a few minutes, but only in the morning.  I thought it was my blood sugar getting too low since it was only happening in the morning.  I have a glucometer so I checked my blood sugar during these dizzy spells and it was in the 80s or 90s.  Then I checked my BP and  BINGO.  I couldn't even get it to register on my machine.  After the dizziness started to resolve, my BP was only 95/68.  That is not very high.  I wasn't getting blood to my brain.  That is why I was dizzy.  I tried several  things to see if it would get better but finally just went to the doctor.  She thinks maybe the paralysis episode I had may have messed up my autonomic nervous system.  Your autonomic nervous system controls all of those things you don't have to think about such as breathing, heart rate, BP, swallowing, sweating.  She did a bunch of blood work, which was all  normal, even my CBC which had been really abnormal in the hospital.  Now she is referring me to the cardiologist for a work up and wants me to notify Dr. Westgate.  I'm waiting for the cardiologist to get back with me because her 1st available appointment was the end of July for existing patients.  I would  just really like  my body to behave itself and work properly for once.  I have been doing my best to give it only top notch nutrition and  to exercise regularly at my ability level.  The least it could do it stop attacking itself.

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.

My Follow-Up with my Neurologist

I want to make sure I keep up with my blog and not neglect it just because I am out of the hospital.  There is still going to be a lot of things going on with my health and my life that I want to journal about.  Maybe people want to read about my life and  maybe not.  Maybe someone will read about my neurological problems and have some clue as to what is happening to me and help me find answers. 

Yesterday I went to my neurologist office and had a nerve conduction study done.  To my surprise, it came back normal.  After my ascending paralysis, I expected it to be abnormal and so did she.  If it had been Guillan-barre or CIDP, the nerves would not have been able to  respond but they responded normally.  The only nerve that didn't was the nerve that  came from my central nervous system down to my feet and back.  They couldn't get any response from that at all.  So I do not have CIDP like the hospital neurologist thought.  My neuro went through the numerous abnormal labs that I had.  Many of them pointed to generic autoimmunity, which we knew I already had.  One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the  symptoms for, but over half of the people with this have small cell lung cancer.  Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything.  I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances. 

I walked away from the  doctors office rather disappointed.  I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong.  She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system.   It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all.  My doctor can't tell  me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body.  Over 10 years ago we went through this limbo process before I found Dr. Westgate.  Then, I had several doctors tell me that my illness was psychological.  No one is telling my that now, but I think that period of time seriously planted some deep fears in me.  I'm so afraid someone is going to tell  me that  my illness is in my head like  they did 10 years ago.  It's obvious it isn't since I don't have reflexes and I  was paralyzed but it has now become a phobia.  I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial.  It's bad enough to have  to go though the trial of the physical illness.  The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.

On a more positive note, I had my 1st weigh in since getting out of the hospital.  I lost 2 pounds since my last weigh in, which was prior to going into the hospital.  It was hard to stay on program in  the hospital.  The menu there was very high in carbs and it  was very difficult to get extra vegetables.  The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert.  You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.

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

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

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.