Going Home Thursday

I had intended to post updates while I was in the hospital, but things have been a little crazy.  Plus, I have had a lot more trouble with my hands this time.  It has affected my writing and definitely my typing and many other areas I have yet to discover.  I'm sure it will be an issue with my sewing. 

When I moved over to rehab, I was pretty weak.  After all the evals were in and we got a response from insurance, it was decided I would get to go home on the March 14th.  That would make my full hospitalization 3 weeks long.  Now, I have been in rehab for 11 days and I am doing better than they expected, so now I get to go home on the 12th, after Dr. Latorre refills my baclofen pump.

There has been several things different about this hospitalization.  First of all, the movement to my upper body came back slower than normal.  It took 3 days for me to start being able to move my hands, then once I could wiggle my fingers a little bit, it took more than 24 hours before my arms were strong enough to feed myself. 

I had my evaluations at rehab 6 days after the onset of paralysis.  Usually, I don't have too much trouble with the slide board transfers on my eval day.  They are a little challenging due to weakness, but I know the technique well.  This time, I could not transfer on my own.  I needed help to get from the bed to my chair.  I still had the indwelling catheter in, so I didn't have to worry about transferring to the toilet just yet.  Toilet transfers are much more difficult than bed transfers.  The slide board doesn't fit onto a toilet seat very well.  During my 2nd or 3rd admission for ascending paralysis, I discovered it is much easier to just slide directly over to the toilet from my wheelchair rather than trying to use the slide board.  I have been doing it that way ever since until I can do stand-pivot transfers.  However, my catheter was discontinued around 6pm on the 1st day, but I was already done with therapy, so I had to I&O cath from bed.  It didn't take too long before my transfers were much easier.  They still weren't easy though.

The other thing that was different this time is the staff has been more knowledgeable about my diagnosis.  There was a rather extensive medical journal article published recently about Functional Motor Disorder, which is just another name for Functional Neurological Disorder.  Recently, the staff here had a journal review of the article.  This means they have all heard of it and actually have some information about how it is treated.  This time my therapy has been a bit different.  We have tried to do  more movements that are "natural" so my brain will use the proper pathways and not the messed up pathways.  We are going to continue using this PT method in outpatient PT.  I am also going to start cognitive behavior therapy to start trying to eliminate the messed up "software" in my brain so it will only use the proper "software"/pathways.  Hopefully this will decrease the severity of the paralysis episodes and put more time between the paralysis episodes.  Ideally, I would like them to eventually stop, but I know from the blessings I have received that the time for that has not come yet.

The other big news I have is I have a new calling.  I have been serving as the Relief Society secretary in our ward for the last 8 months.  I was supposed to meet with a member of the bishopric the Sunday I was admitted.  When my paralysis started, I called the executive secretary and told him I wasn't going to be at church the next day and asked if they could do the interview over the phone.  I got a call about an hour later from the 2nd counselor in the bishopric releasing me as secretary then calling me as 1st counselor in the Relief Society presidency.  I was a little nervous about a calling with so much responsibility, but I know that the Lord is aware of my situation and the new Relief Society president is aware of it also, since she is my ministering sister.

I found a book on Amazon called Overcoming Functional Neurological Symptoms.  It is suppose to help with reprogramming my brain and helping me access the normal pathways in my brain and eliminating the abnormal pathways the FND has created.  I just started working on it.  It is actually a workbook, not just a self-help book.  I will also be starting cognitive behavior therapy specific to FND that will hopefully help eliminate those abnormal pathways.  I am starting things off by keeping a daily journal on how I feel both emotional and physically as well as documenting the things I do.  We are hoping we can find the trigger for the paralysis episodes. 

It happened at QuiltCon

My friend Delia and I love going to QuiltCon together.  It is a quilt convention that comes to Austin every other year.  I have made a few quilts, but I have to admit that quilting is not my love.  My sewing loves are machine embroidery and bag making.  If I can combine the two, that is even better.  While at QuiltCon, I discovered there is a charity where I can make simple bags, they get mailed to Africa, then a company there will fill them with non-disposable menstrual supplies and hand them out to the girls in the villages so they don't have to miss school.  They even give you the purse pattern.  It is a pretty simple pattern, so I plan on using a lot of my scraps to make purses and send them to Africa.  Here is their website if you want to check it out -https://sewpowerful.org/ .  I'll try to post some of the purses I make on here.  Since the patterns are simple, I plan on using my creativity to have some fun with it, maybe even combining it with embroidery.

After we checked out all the shops, we went through all the display quilts.  There are some really cool ones.  Some were done by hand and others by machine.  They were incredible.  I will never have that kind of talent with quilts, but since it isn't my passion, I'm ok with that.  When we were looking at the last row of display quilts, my feet felt like they had gone to sleep.  They were just resting on the footrest of my chair, so they shouldn't have felt that way.  I knew what was happening.  I tried to wiggle my toes, but they were paralyzed.  We were finished with QuiltCon anyway, so we headed to the car.  I hadn't told Delia anything yet but when I got to the car, my legs were totally paralyzed.  I had some trouble transferring over to the driver's seat.  Delia was a little freaked out.  I was able to drive home though due to my hand controls. 

When I got home, I told Stan what was going on.  We no longer rush into the hospital.  I ate lunch, packed my bag, we watched some TV and did a dressing change on the cat's leg.  I decided it was time to go to the hospital when the paralysis moved up to my torso and I was having trouble transferring in and out of my wheelchair.  I was admitted and got up to my room around 1 am.  By  8 am on Sunday morning, I was totally paralyzed except my head.  It took it a little longer for the paralysis to fully set in.  It has been very slow to resend.  I first got a little bit of wiggle to my fingers yesterday morning.  Usually, by the end of the day, I can raise my arms and feed myself.  I didn't start feeding myself until this morning and I can still only raise my forearm.  I was able to sit on the side of the bed today and was able to hold myself up.  Yesterday, I kept falling over.  I should be going to the rehab hospital tomorrow.  I suspect I will be there longer than last time (only 8 days) since my strength just isn't coming back as quickly as it has in the past.  We will see what happens once I start moving around in rehab.  Hopefully my brain will remember how to send the messages properly once they can get me up and moving. 

I'm trying really hard to stay as much on my diet as possible.  My diet goals are to get as many vegetables as possible and not get any sugary foods while I am here.  It is impossible to avoid carbs, but I will just start right back on keto as soon as I get home.  Part of keeping this weight off is going to be learning how to manage eating on vacation, in the hospital, for holidays and birthdays, then being able to go back to the strict keto diet as soon as those things are over.  I think I am finally getting the hang of it.

Our mini vacation

We were supposed to leave for the Mayo clinic in Arizona on Tuesday.  Since my appointment was cancelled and I couldn't get an appointment in Minnesota, Stan and I decided we needed to get away for a few days.  He already had the time off from work and I had cancelled all of my appointments.  We decided we were going to go to Houston and visit some of the museums.  We hadn't been to any of the museums in Houston since Rachael was competing in dance.  Whenever we had dance competitions in Houston, we would always go to the museums there.  The kids loved the children's museum in Houston.    

Monday morning I had a few appointments.  Jeremy had a dentist appointment with a new dentist at 10, Stan had a chiropractor appointment at 9:40 and Lucky (our cat) had a vet appointment at 10:40.  I took Jeremy to the dentist, leaving Lucky in the van (don't worry, it was a good day for it, overcast with temps in the 60s).  The plan was for Stan to go to his appointment then to come pick up Lucky.  It didn't work out that way.  I left Jeremy there, took Lucky and Stan came to get him.  

Lucky's vet appointment went well.  He has had a rough time lately.  I'll have to tell you the story of how he got his name some time.  Lucky has a tumor on his ankle and the skin has been broken.  When I was in the hospital last, it got very infected with a resistant bacteria called Pseudomonas.  We have been doing daily dressing changes and giving him oral antibiotics for over a month now.  Cats are not easy to give medication to.  You can't hide it in food like you can with dogs, at least not with Lucky.  He his a picky eater.  The vet said to put it in yogurt but he won't eat dairy foods.  I've never seen a cat not like dairy.  His infection is finally cleared up.  We still have to do the dressing changes though.  Now we have to go to the surgeon to find out what the next step is.

Houston was fun.  I'm so glad I don't live there though.  Parking was a nightmare wherever we went and was expensive.  The museum was a lot of fun.  We went to the planetarium show.  Tom Hanks was the narrator for the show.  We had been to this museum before, but the last time was 15 years ago and we had 3 little kids with us then.  This was definitely a calmer visit.  

We also went to the butterfly center there.  It is so cool.  It is a huge greenhouse full of plants and trees with hundreds of butterflies flying around in it. They do all kinds of research on butterflies there too.  They had some cocoons set up for display.  There was a butterfly that had just emerged from  it's cocoon.  It's wings were still wet and limp.  I've never seen that in real life.

We went to a really cool restaurant for dinner.  It was called The Hobbit.  It was an old house converted into a restaurant.  It had mismatched wooden tables and chairs.  There was a very low to the ground chair made from logs with a fur covering on it.  There was art work on the walls from the Hobbit and Lord of the Rings.  It was a cool place.  The Lamb burger was delicious too.  I splurged a little bit and had some sweet potato fries.  We had dinner at the Cheesecake Factory.  I ate in plan for dinner, white fish with an olive oil/basil/sundried tomato topping, asparagus and cauliflower.  It was delicious and 100% keto friendly.  The cheesecake didn't even tempt me.  I haven't weighed since I got back, so I don't know if I gained any weight while we were on vacation.  I felt like I ate more than I usually did and I couldn't eat as many vegetables as usual.  I'm not stressed about it though.  Part of making this weight loss a permanent part of my life is learning how to navigate vacation and how to splurge a little bit when I am on vacation without letting it pack on the pounds and totally derail me.   

New Year, New Diagnosis

There is way too much that has happened in the last year to update this blog with the details, but I will try to sum everything up.  Over the last 2 years, I have continued to have ascending paralysis episodes approximately every 3 months.  I have seen multiple neurologist for this as my neurologist was stumped.  It was decided pretty early on that this could not be from MS.  My MRI remained free of lesions still.  After 12 years of aggressive disease, there is no way I wouldn't have lesions.  So now I was without a diagnosis at all.

In June of 2019, I went to a different hospital for my paralysis and saw a different team of neurologist.  I had some of the tests repeated during an acute attack that had previously been done between episodes.  They remained normal.  This neurologist thought that I had Functional Neurological Disorder.  She explained that this disorder is like having a software problem in your brain.  All the computer hardware (you nerves and brain) work just find, but the software is all messed up.  We all know what kind of problems a computer can have when the software is messed up.  She sent me to the website www.neurosymptoms.org to learn all I could about the disorder.   We spend the weekend reading the entire website.  I had a lot of questions.  There were things I felt didn't fit.  One of the most important things we read is that if you don't accept your diagnosis, you cannot ever get better.  The way you get better is to reprogram your brain, but I couldn't find any information about how that is done.

Over the next 6 months, I had all of my questions and concerns answered and finally was able to accept the diagnosis just before Christmas.  My neurologist didn't know much about it, so I started seeking for a provider that could help me with "reprogramming my brain".  I found that had an FND clinic at the Mayo clinic.  I was able to get an appointment at the Arizona clinic, but a few weeks prior to my appointment, they called and cancelled my appointment because they don't treat FND at that location, despite the fact that I asked 3 different times and was told that they did in fact treat it there.  They referred me to the Minnesota location.  I called for an appointment there but my case had to be reviewed by the doctor before I would be given an appointment.  I gave them as much information as I could about my medical history.  I got an email 2 days later than I would not be offered an appointment.

My PT, Irina, has been amazing.  She is certified in neurology, but didn't know anything about FND.  That isn't stopping her.  She has been researching the disorder and trying to find out how to use physical therapy to help me.  In every publication I have read, it states that PT, specific to FND is a vital part of recovering both from the weakness associated with FND and reprogramming the brain.  Irina has asked me to keep a journal of everything I do every day and how I feel both physically, mentally and emotionally.  I plan on using this blog for that purpose.  She is hoping by keeping this journal, we can figure out a trigger for my flare-up.  If we can find a trigger, maybe we can avoid that trigger. 

The other thing I will use this journal for is to help me as I write my book.  I started writing a book about 6 months ago about the trials of my life and how they have helped me build my testimony, understand the Atonement of Jesus Christ and made me the person I am today.  Now that I have this FND diagnosis, I also want to use it as a way to help other people with this disorder.  There is a serious lack of information about this disorder.  Part of the problem is that it is a fairly new disorder.  It is similar to conversion disorder, and some doctors will use the name interchangeable, but conversion disorder has a definite psychiatric cause.  FND does not.  For some people, there is a history of trauma prior to the onset of their disorder, but not for everyone.  Some have a history of other medical problems that trigger the disorder.  They have not found a definite things that triggers the brain to go haywire like this.   They also haven't found a definite way to reprogram it.  The doctor who diagnosed me made it sound like that reprogramming was possible, but the information I have been finding says that most patients only get slightly better at times, but then have relapses, much like MS.  The only difference is there is no permanent damage to the brain like there is in MS, at least that they know of.  There is a lot of research being done on this disorder now.  They have discovered that functional scans of the brain of FND patients do show abnormalities.

So, in the past, I have not done a good job of keeping up with my blog, even when I really wanted to.  I hope I can do better this time since it is important that we try to find a trigger.  My goal is to post about 3 times/week, maybe more.