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.                                                                                                                                             

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.

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.

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.

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