Supernatural

 Supernatural is an exercise program that is available for the Oculus Quest Virtual Reality headset.  It is a little difficult to explain it with words, so here is a short video to show you how the workouts are done with the Oculus Quest.

The workouts are divided into 3 levels, low, medium, and high.  They have recently added a boxing component also.  The low-level workouts are slower and almost all of them stay within a 180-degree area, which I can easily reach in my wheelchair.  When I first started using Supernatural, all that was fine.  A low-level workout was plenty challenging for me.  After I had been working out for several months, I was ready for something more challenging.  I tried a few mid-level workouts, but they all had 360-degree rotation.  I tried to just ignore the targets that were coming at me from behind and wait for them to come back around to the front, but that meant I sat for half the workout at times.  I sent several email requests to the Supernatural team requesting at least a few higher-level workouts that were not 360-degrees.  Each time, I was told there all the lower-level workouts were limited to 180 - degrees or less (that wasn't even true.  There are lower-level workouts that were 360-degrees).  I even posted on their Facebook page requesting higher-level workouts that were not 360-degrees.  Each time I explained my reason for wanting this.

Finally, my request was addressed.  I got a Facebook message in the middle of December that the newest update had added Front Facing mode and they would like me to try it out and fill out a survey.  This was a setting in the settings menu that would turn every workout into front-facing only.   For the squats and lunges shown in the video above, you set your own height settings within the app.  They even tell you how to set it for seated, which is what you need to do when using it from a wheelchair.  This allows the game to take your specific height into consideration when sending the triangles for the squats.  It is a very individualized program.  They requested I do specific workouts and then fill out the survey.  There were 1 of each level of the "flow" workouts ( the flow workouts are the ones shown in the video above) and 1 of each level of the boxing workouts.  The workouts were all 10-13 minutes long.  I was able to do all of the flow workouts, even the high-intensity workouts.  You have to sometimes ignore the coach's instructions as they say so turn or move into a different position for the boxing stances.  They don't pertain to someone doing the workout in forward-facing mode, but there is no way to turn off the coach.  I wish there was.  Finally, I had the challenge I had been wanting for the last 6 months.  The low-intensity boxing was great, but I need a lot more practice with boxing before I do the boxing at higher levels routinely.  The movements are just different, so I need to practice more at it.  I was sure sweating a lot when I was finished and it definitely got my heart rate up.  I could feel it through my arms, shoulders, back, and core.  I was sore the next day.

Getting a good cardio workout from a wheelchair can be a challenge.  Generally, upper body-only workouts don't get your heart rate elevated very much.  Supernatural for the Oculus Quest is a really good total body workout for the able-bodied individual and a really good upper-body/core workout for those of us in wheelchairs.  There is a subscription fee for the program, but it is well worth it.  The subscription fee of $19/month or $179/year allows up to 4 users to use the program and have their own user profile so they can have their own settings since the workouts and stats are so individualized.  

Southside Market BBQ

 Southside Market BBQ is a BBQ restaurant in the central Texas area, with locations in Elgin, Bastrop, and Hutto, which are all small towns not far from Austin.  I believe they originated in Elgin.  Their sausages can be purchased in most of the HEB grocery stores in Austin and surrounding areas.

Parking - There is a lot of accessible parking and it is all right in front of the door.  In addition to the accessible parking, there is just a lot of parking in general.  I find this helpful to know also.  Since I have a wheelchair ramp, when I can't get a van-accessible parking spot, a nice big parking lot means I can park away from the main parking area so I can take up 2 spots so I have room to deploy my ramp.  People are less likely to be enraged by someone taking up 2 spots if they are doing it in a far-off spot.

Once inside, you get in line to order your food.  The line is made by the rope barricades to form a queue.  I frequently have trouble moving through those ropes because there usually isn't enough room, but not here.  There is plenty of room between the ropes to move through easily in a wheelchair all the way until I'm to the front of the line.  Once you order and they get your food together, you have to carry it on a tray into the dining room.  I had my husband with me, so he carried our tray.  Had I been alone, the tray was small enough it would have fit on my lap, even with my short legs, or I'm sure a staff member would have helped me to the table with the tray. 

Dining room: I was a bit nervous when I first went into the dining room.  The tables are picnic-style tables.  The first ones you come across have benches at them, with inadequate room at the ends for a wheelchair,  A wheelchair would block the aisle and access to the other tables.  However,  a few of the tables farther into the dining room had chairs at them rather than benches.  Drinks were self-serve fountain drinks.  The fountains were not too high and everything was within reaching distance.  The BBQ sauce was right on the table, so it was right within reach.

Bathrooms: The bathrooms were great.  I frequently have problems in bathrooms that the soap or the paper towels are difficult to reach, so there is a baby changer in the accessible stall.  This bathroom had none of that.  The accessible stall was nice and big and didn't have a baby changer in it.  The soap dispenser was easily reachable as were the paper towels.

Southside Market BBQ was one of the most accessible restaurants we have been to.  There wasn't a single thing I had difficulty with during our dinner there.  I could have easily eaten there by myself without any problems at all.  I wish more establishments were like this.

Slaughter Lane Chiropractic

 I started seeing Dr. David Wagner at Slaughter Lane Chiropractic about 5 years ago when I was unhappy with my previous chiropractor.  I was suffering from a pretty significant head tilt at the time, known as torticollis.  I was also over 100 pounds overweight.  Dr. Wagner was able to fix my head tilt.  Through the office, I was introduced to the Ideal Protein weight loss program.  Once I decided to go on the weight loss program, I lost 100 pounds over the next 18 months and have now kept it off for over 3 years.  Dr. Wagner and his office staff are wonderful.  They are extremely professional, kind, and caring.  The office feels like home.  

Having said that, the purpose of this blog is to review the accessibility of the office.  In that regard, the office has a few issues.  The staff does everything possible to make things as easy for me though.  

Parking:  There is 1 accessible parking spot and the stripped area is on the wrong side for most vans' ramps.  It isn't an issue though because the accessible spot is right next to their back porch and there is a large open area next to the spot so there is plenty of room for my ramp.  Because of this, if there is someone in the accessible spot, I can park in the spot next to it and use the stripped area for my ramp.  There is also a stripped area a few spots down that is used for a walkway that can be used for my ramp. Sometimes parking can still be a problem.  It is a very small parking lot that is not only served by the chiropractor's office but 2 other small businesses.  At times, the parking lot is very full and I've had to park in the grass and deploy my ramp there.  That only happens rarely.

The office is located in an old, converted home.  This comes with a few issues.  There are 2 exam rooms.  Exam room 1 is easily accessible for my wheelchair and I have no problem getting in there.  Exam room 2 is more difficult.  I can't be adjusted in that room for several reasons.  The room is down a narrow hallway and the door is very narrow, so my chair barely fits.  It is also a smaller room, so it is difficult to maneuver in there.  Lastly, the table is just too long for my 5' tall body, but that has nothing to do with accessibility.  The room for the Ideal Protein appointments also has a narrow door.  My chair will fit through it, but I have to go very slow and be very careful so I don't mess up the door.  Since the pandemic started, I haven't needed to go into that room as my Ideal Protein appointments have all been over the phone and my weigh-ins have been done at home via a Bluetooth scale.

Bathroom:  This is the room I have the most problem with.  The bathroom is actually a nice, big accessible bathroom.  There are bars next to the toilet and there is an accessible sink and toilet in there.  However, they ruin all of that by pulling a long, decorative table in there that really serves no purpose except to be a decoration.  When I need to use the bathroom, the staff has to take the table out of the bathroom and move it into the hall.  I've complained about that over and over.  Dr. Wagner told me that his wife, who is in charge of decorations, put that table in there.  She is aware it causes problems and she wants the staff to just take the table out when someone with a wheelchair needs to use it.  She was my first weight loss coach, so as a person, I really like her, but I really dislike that she chooses her decorative aesthetics over the accessibility of their clients.

Back in the treatment room, there are multiple tables for various treatments after adjustments.  There were fewer tables in there when I first started seeing Dr. Wagner.  When his son graduated and joined the practice, they added more tables.  When I need therapy, they have to move a table in order for me to fit into the room.  I have to do the therapy from my chair since the tables don't adjust and I can't transfer onto them when I can't stand.  It isn't difficult to do therapy from my chair though.

If you live in the Austin area and need a chiropractor, I recommend Slaughter Lane Chiropractic despite the accessibility issues with the office.  The staff works very hard to overcome these issues and make things go smoothly for me when I am in the office.

United Access

 United Access is a "car dealership" exclusively for accessible vehicles.  My first accessible van was inherited from my mother-in-law when she passed away.  I was very grateful for that van.  It had some issues though.   The model I had was pre-automatic doors, so it had to be retro-fit with a wire pully that opened my door automatically, then deployed my ramp.  The wire used to snap or come off the pully all the time, necessitating a trip into United Access.  They were always wonderful and got my van in as soon as they could.

I have unfortunately have 2 car accidents since being in a wheelchair, both minor, but requiring body work on my van.  You cannot rent an accessible van from a normal car rental place.  I had to arrange to rent the van from United Access.  Of course, they don't have a rental contract with any insurance companies, but the insurance companies all agreed to pay for the van through United Access.  United Access agreed to take payment directly from the insurance company rather than have me pay for the van, then get reimbursed by the insurance company.  I was very grateful for this since accessible van rental is very expensive.  

I am fortunate to have a United Access location only 30 minutes from my home.  United Access also has other stores like Mobility works.  There may be other, but that is the one I know about.  If there isn't a store in your city, contact them and they can still work with you on purchasing a vehicle and getting it delivered to your location.  

Texas State Railroad, Palestine, Texas

 We went to Palestine, Texas at the end of September to ride on the Texas State Railroad, a historic train ride through the area around Palestine.  As we were planning our trip, I called the train office as we couldn't find anything on their website about accessibility.  I was told that the train could not handle any power chairs because they weighed too much and the isles were too narrow.  I don't own a manual chair, but I was told the Texas State Railroad had one we could borrow for the day.  I was not ready to make reservations, so she told me I could either make them online or call back when I was ready.  FYI, you cannot make ADA reservations online.  They must be made over the phone.  ADA reservations can only be made for the First-class car.

Parking:  There is plenty of parking there, with lots of van accessible parking too.  If you need parking that is close, you won't find it.  All of the accessible parking is quite a distance from the depot.  I'm not really sure why that is.  You also have to cross over the train tracks, but they do put something over the tracks so you don't have to step over the elevated tracks or worry about tripping over any of the tracks or slats or anything like that.  It is perfectly safe, even for someone not that stable.  

Bathrooms:  I used the bathroom at the depot prior to us checking in so I could still use my power chair.  With the number of people there, the line into the bathroom was rather long, so I'm glad I did this.  The accessible stall was difficult to use.  It was a big stall, but only because it was long.  It was no wider than the regular stalls.  It wasn't wide enough for my chair to turn around it.  I could stand at this time, so I didn't have to slide over to the toilet, but that would have been a challenge.  Getting out of the stall was a huge challenge though.  I had to open the door from behind me since I had to back out of the stall, and try to maneuver the door while backing out of the stall, and all the way past the other stalls in a crowded bathroom.  Thankfully people are usually very accommodating of me in my wheelchair and will move out of the way.

The train:  We checked in at the train depot and were directed to the office to get the manual wheelchair.  They brought out a manual wheelchair with only one foot rest, left it and said we could just leave my power chair right there in the hall.  I was not comfortable just leaving my power chair just sitting in the hall since it is basically my legs, and it costs the same amount as a small car, so I had my husband take it to our van after I transferred into the manual chair.  As I was sitting there, I caught the person who brought out the chair and asked if they had another wheelchair.  She said they didn't.  I told her that a manual chair with a broken foot rest was unacceptable.  It was dangerous for a person to sit without a foot rest on one side because they either had to sit with their leg dangling for extended periods of time, or they had to put both of their feet on one foot rest, which causes back pain from sitting off to the side that way.  She shrugged her shoulders and said "sorry".  It obviously wasn't her job and she didn't care.

Once on the train, we were taken to "first class".  First class was a joke.  It was a room with a bunch of mismatched, old, wooden table and chairs.  We were the only ones in the car.  We could see in the car ahead of us.  There was nice couches and tables in that car.  There was one worse though.  They have an open air car.  As we got onto the train, there is a large open space, then a snack bar off to the right that we had to pass to get to our car.  My chair would have fit down the isle in the "First class" car.  I'm pretty sure it would have fit past the snack bar too.  That is the only place it would have been tight.  If there had been fitting issued, I think it would have been feasible to load my chair on the train, then transfer me over to the manual at this point for the trip.  This way I could have my power chair for the stop over depot at the half-way point of the trip.  I really don't buy their excuse that a power chair weighs too much.  This is a train people.  It was designed to carry both people and frieght, even in the 1860s.  Plus, if weight was truly a concern, they would have to ask the weight of the passengers prior to boarding.  There was a man on our train that probably weighed just as much as my power chair, and was just as wide as it was (I am not body shaming here, just using it as a point that if he could be on this train, then so could my power chair)  

The stop over was a big problem for me.  My husband was able to push me around most of the time, but the bathroom was an issue.  I was all on my own here.  I have upper body weakness, which is why I have a power chair and not a manual chair in the 1st place.  In addition to the weakness, I am very petite, being only 5' tall, so the manual chair was really too big for me too, meaning I could only move it a little bit at a time.  It took me forever to get down the bathroom stall, and no one was willing to help me.  I got stuck going over the threshold into the bathroom as it has a really big bump at the entrance.  Thankfully someone helped me there.  As just a general review of the stop-over, it was boring.  We were there for 90 minutes.  There was a small gift shop, a continuous running video about the train,  a bunch of pictures and stories on the wall that was their "museum", and a box lunch caboose.  You are not allowed to bring your own food so that you can have an "authentic experience", yet the only food offered are hardly authentic 1860s food.  They are things like hamburgers, hot dogs, chicken tenders, fries, served in a box, and eaten on benches outside the depot.  There is a picnic area, but it was not accessible on that particular day.  It was raining and the area was not covered.  It was muddy and would have been difficult to get to in a power chair, let alone in a manual chair.  The lunch experience was anything but authentic.  I think being allowed to bring a picnic lunch would  have been much more romantic and authentic.  Their rules were not about being authentic, they were about making money.  The food was not even that good.

I have fibromyalgia and arthritis.  The train ride in the manual wheelchair with all the bumping and jaring was not good for my body.  By the time we got back to our van, I was in a lot of pain.

Overall, I would not recommend this train ride for someone in a wheelchair, or someone with chronic pain.  It was obvious to me that the people in charge of the train made no effort to make sure the disabled people riding the train had an enjoyable time too.  Better effort could have been made to make things accessible without ruining an antique train in the process.  

La Quinta Inn & Suites by Wyndham Palestine, Texas

 We stayed at the La Quinta Inn & Suites by Wyndham in Palestine, Texas at the end of September when we went to Palestine as part of a vacation trip.  We went to Palestine for the purpose to ride the train there.  I will review the train in another post.  As always, we reserved an accessible room.  We checked into the room and I stayed in the room while my husband went down to the van to get the rest of our things.  I went to the bathroom where I discovered the first major problem with this room.  The bathroom door was located right by the room door.  It opened out into the hall of the room.  Because it is an accessible room, which requires a wider doorway/door,  the door took up most of the room in the hall.  My wheelchair didn't fit between the wall and the door.  If I did a lot of maneuvering, I could manage to get past the door eventually, but I did damage the wall with my chair.  It might have been possible for a smaller chair to get past, but my chair is an average size, so it would have had to be a really small chair.  Getting out of the bathroom was even more difficult than getting into the bathroom.  

My husband went downstairs to complain to the clerk about the room.  He came up to the room to see the door.  He commented, and I quote "other people have complained, but I didn't know what they were talking about".  There had been other complaints about this door!!.  Nothing had been done!!.  There were no other rooms available as all the accessible rooms were just like this one.  We asked about taking the door off, but he said there was no on sight maintenance.  My husband said he would do it himself.  The clerk said we could do what we needed to.  There was no manager on sight now, so we would have to speak with her tomorrow.

Bathroom: the rest of the bathroom was barely accessible.  There was a toilet with bars around it.  There was a regular tub, although it did have bars inside it.  There was no shower bench in the tub.  We had to ask for one.  The shower had a regular shower head in it, not a hose at all.  There was no way to direct the water onto my body except to move the shower chair, but each time you move the shower chair, the legs that are inside the shower have to be adjusted to keep the chair level.  My husband was with me, so he was able to adjust it for me.  

The room: The bed was too high.  This seems to be a common problem with hotel rooms.  I was able to stand on this trip, so not as big of an issue for me this time, but if you cannot stand, this may be an issue.  I am never fond of the height of hotel beds in general though because even when I can stand, I am only 5' tall, so they can be challenging for me.  The rest of the room was spacious.  There was a table, a couch, and 2 TVs.  From an accessible point of view,  the table was a problem.  There was a power strip between the table and the couch that was ideal for plugging in a laptop while using it at the table, but it was unreachable from my chair.  The  only plugs I could reach from my chair were the ones on the night stands, and on the left side of the bed (as you lay in the bed)

Parking: There were 3 accessible parking spots, with 2 of them being van accessible.  There weren't a lot of people using them so we never had too much competition for them.

Pool:  They had an outdoor pool.  We noticed there was a chair lift from the parking lot, so we inquired at the front desk to see how to use it.  We were told the battery was in place and it should be working.  We went down to the pool only to find out the lift didn't work at all.  There was no controller at all.  We reported it to the front desk, but she didn't know anything about it.

Now, back to the issue about the door.  After my  husband and I returned from our train trip, I asked to speak with the manager.  I reported to her the problem I had with the bathroom door, along with the issue of the shower not having a hose.  The manager told me the hotel was like that when the owners bought it and there was nothing they could do about it.  She was not apologitic at all.  She was actually rather rude about it.  She did say she would report to the owners about the shower head and see about getting it replaced.  I told her I thought it was pretty disgraceful that a hotel that had had many different complaints about an accessible room had done nothing to try to fix it.  At this point she sort of gave me an apology, but it came with an eye roll.

I would not recommend this hotel for someone in a wheelchair due to the problem with the bathroom door alone.  Add in the problem with the tub/shower, and this makes this hotel's accessible rooms not accessible at all as far as I'm concerned.  They definitely are not accessible for someone in a wheelchair who is by themselves.  Our stay would have been a nightmare had my husband not removed the bathroom door.

A Quilter's Folly

 My husband calls A Quilter's Folly my second home, especially prior to the pandemic when I would spend hours and hours there.  I have been a customer there for many, many years, pre-wheelchair.  The staff all know me well. This makes A Quilter's Folly one of the most accessible fabric stores I have ever been in.

Parking:  There is 1 accessible parking spot right in front of the entrance to the store.  It is a van-accessible spot, although the striped area is a bit on the small side.  If you only need parking in close proximity, there is a lot of parking spots in close proximity to the entrance.  When the only accessible spot has been occupied, since I do require the room for my ramp to deploy, I am able to parallel park directly across from the entrance, along the curb.  There are rarely any cars parked there, so I can just pull up along the curb.

The store:  Despite this being a store full of fabric, there is always plenty of room down the isles.  When they rearrange the shelves, the owner always does so with my wheelchair in mind.  The first thing she tells me when I come in after a rearrangement is "tell me if there is something you can't get to."  There are things in the notions area that are out of my reach, but there is always a staff member available to get things down for me.  When I am there to shop, the staff will help me get the fabric bolts off the shelves for me too as they can be difficult for me to manage depending upon my upper body strength.

The Classroom:  A Quilter's Folly offers all kinds of classes, both for sewing and embroidery (although not as many as they did prior to the pandemic.  Hopefully they will start to come back soon).  The classroom area is a bit tight, but when I am signed up for a class, they reserved the spot for me that provides the most room for my chair and set up an ironing board that is accessible for me.

Bathroom:  There is a clear, open path back to the bathroom, which is in the storage area of the store.  The bathroom is large enough that my chair can easily fit in there and rotate 360 degrees.  It is a standard accessible bathroom.

I know some of you may be thinking that this store does all of this because I have been such a long-time customer.  That may be true, but I am sure the owner would do this for anyone.  She was a hospice nurse prior to retiring to run her store full time.  She and her staff would go out of their way to help anyone in need in the store, including making the store more accessible if someone with a different chair style than mine was having a hard time getting around.

Fairfield Inn and Suites Fort Worth at Cityview

This is my first post regarding accessibility in the travel industry.  I hope to be adding restaurants and other businesses as I go. I may come up with a rating system down the road sometime, but not yet.   

The first hotel I am reviewing is the Fairfield Inn and Suites Fort Worth at Cityview.  I will be reviewing 2 different experiences at this hotel.  Our first experience occurred the first week of October.  We initially had reservations at another hotel, but because of some confusion in the reservation process, we had reserved a hearing impaired room rather than a wheelchair-accessible room with a roll-in shower.  The hotel called its franchise sister hotel and changed our reservations to this hotel.

Parking: There are a total of 4 accessible parking spots, 2 in the front of the hotel and 2 at the side.  This is a small hotel.  We never had problems with parking.  Being in a wheelchair and having a van with a side ramp, accessible parking is important for me, not just for close proximity, but so I have room for my ramp.  The striped area next to the spots was nice and roomy too.

Bathroom: It was a nice bathroom.  There was plenty of room for my chair to maneuver around.  There were bars around the toilet and it was an elevated toilet.  The shower was a very large roll-in shower.  It had a built-in bench at the end closest to the door with the shower controls easy to reach right next to the bench.  The shower head was on a hose and was removable.  The other end of the shower had a regular shower head with room for a person to stand.  There was a knob close to the shower controls that enabled the water flow to be switched so it went to one end or the other or both.  It was awesome.  I have a basic roll-in shower at home.  Now I want one like this.  The hair dryer was stored on a shelf under the sink so it was easy to reach.  The shelf was a very convenient place to put my make-up and skincare so it wasn't all over the bathroom counter when I wasn't using it.

The room: The room was a bit more of an issue.  It was tiny.  There was only a walking path around the king-sized bed.  My wheelchair fit on the left side (when in the bed) and at the end, but not on the right.  When I say fit, I mean just barely fit.  There was very little room between the wall and the bed on the side, or the bed and the desk at the end.  Since my chair only fit on that one side, this presented a big problem for my husband.  My husband requires CPAP at night, but there was not a plug on his side of the bed for some reason, only on my side.    He had to stretch his CPAP machine across the side of the room so he could plug it in at the end of the bed.  He also couldn't plug his phone in next to him.  He had to plug it in at the end of the bed.  There was a minifridge that was low enough, but it was difficult for me to get into because it opened towards the head of the bed and I could only get to it from the other side (I hope that made sense).  My husband had to get things out of it for me.  The hangers in the closet were down low so I could reach them.  I didn't need the iron, but if I had needed it, it was out of my reach.  The bed was much higher than the seat of my wheelchair.  I could stand at that time, so it wasn't an issue for me, but I can't always stand, so that is a potential problem.  The door was extremely heavy and I couldn't open it by myself (I have upper body weakness).  I know hotel doors have to be heavy for fire safety, but accessible rooms should have a button to open them or something.  This room would have been difficult for me to manage had I been alone.

Amenities: This hotel offered a breakfast buffet.  The things I wanted I could easily reach.  If someone in a wheelchair wanted bagels or muffins, that would have been a problem though.  They were in a stacked holder (I don't know what to call it) that might have been out of reach for someone in a chair.  I didn't go into the gym, but all I saw in there was a treadmill and an exercise bike.  They had a pool along with a lift.  We inquired about how to work the lift and the staff said they just needed to charge it.  The next day, we got the lift battery from the staff and attempted to use it.  The lift still didn't work.  

Staff:  The staff was very kind and tried to be helpful

Our next visit to this hotel was on Black Friday.  We had a fairly good experience at this hotel, despite the room being a bit small and it was close to where we needed to be.  We made reservations for the proper type of room this time and double-checked them several times.  The reservations were made several weeks in advance.  They were for an accessible room with a roll-in shower.  When we arrived, the clerk gave my husband the key cards.  He verified with her that it was a room with a roll-in shower before we went up to the room.  This time I cannot stand, so a roll-in shower is vital.  She told us it wasn't, then checked her computer and told us there wasn't a roll-in shower room available.  This hotel only has 2 and one was being used long-term and the other just checked in 3 days ago but they wouldn't check out until the next day.  We asked why our room wasn't saved for us if we had a reservation.  She said someone made a mistake.  She offered us a room with an accessible bathroom, but it was a tub with a removable shower chair.  She also upgraded our room.  That was an acceptable option for us.  However, when we got up to the room, it wasn't accessible, and there wasn't a tub either.  The bathroom was small.  There was a half wall between the sink and the toilet.  My wheelchair didn't fit past the wall.  It was a glassed-in shower stall with the door opposite the toilet, so I couldn't get to the shower either.  I wouldn't have been able to maneuver my chair in such a way that I could have transferred to a shower bench even if I could.  We went back downstairs and told her that it was not an accessible room.  She told us it was mismarked, then said she didn't have any other rooms for us.  We are 3 hours from home on Thanksgiving weekend.  She called 1 hotel to see if they had an available room but they were booked.  She said that was all she was allowed to do.  We asked her "What do you expect us to do?  We had reservations.  We are 3 hours from home with no place to stay".  She just kept saying there was nothing else she could do.  My husband was able to call around and get another hotel reservation about 20 minutes away.  It also costs us $30 more.  The manager was not available.  I have tried to call her a few times but have had to leave a message.  She has not called me back.  I will be emailing the cooperate office also.

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.

General Update

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

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.