This is beginning to be a habit

I know it seems like I only post when I am in the hospital or when something is wrong, but that is about the only time  when my life slows down long enough for me to write.  I do want to find more time to write because I want to write my life store but I don't want to post that entire thing on my blog.  There are so many people wanting updates though that I thought I needed to start updating again.  I also have been writing out my weight loss story and I do plan on posting that.  I'm going to post that in sections because it is 6 pages long in Google Docs.

So, on Sunday, we had an amazing opportunity.  President Russell M. Nelson came to San Antonio to speak at the Alamodome.  We left the house at 2pm and  got there and into our seats by about 3:45.  He wasn't speaking until 6, so there was a lot of waiting around to do.  There was a lot of people there.  One of the speakers said there were over 23,500 people there.  Elder and  Sister Bednar spoke.  Sis. Bednar's talk was about 5 things she learned living in Texas.  They lived in Texas for a while before Elder Bednar became president of BYU-I.  Several of their grandchildren were born in Austin around the same time I was having my children. Bro Ochoa of the 70 and his wife spoke.  Then Sis. Nelson spoke about what life has been like since her husband's call to be prophet and the change she has seen in him.  The President Nelson spoke.  His talk was a lot about the gathering of Israel both here and in the afterlife. 

So while we were there, my central nervous system decided to go haywire again.  When the prophet came in, I could stand.  I listened to all the speakers and waited until the general authorities were escorted out of the Alamodome.  I went to stand up when the prophet was exiting the stage and my right leg was paralyzed.  Since it was only the 1 leg, we thought it was going to be a normal MS flare and not an episode of ascending paralysis.  Monday morning when I woke up, my left leg was also paralyzed.  Now we were facing something new.  I have never experienced the paralysis onset like this before.  We weren't sure if this was an MS flare with bilateral paralysis or the start of another episode of ascending paralysis.  I didn't have any weakness anywhere else.  Stan stayed at home for an hour to see if I was going to get any weakness but decided to head into work around 9am.  I emailed Dr. Westgate to find out if she  wanted me to go to the hospital or go in to see her.  She emailed me back around 11am with instructions to go to the hospital.  I had just decided that I needed to go there anyway because my arms and  torso had started to feel weaker.

We got to the ER and they took me back to the room right away.  The ER doctor came in pretty fast too.  He had already looked over my history and my records from my previous hospital admissions.  It was already decided that I was going to be admitted.  I just had to wait on the attending doctor to come see me and for a bed to be assigned.  It took about 3 hours before I got up to a room.  By that point, I could only shrug my shoulders a tiny bit.  We were really surprised that they admitted me to a regular room this time and not the ICU like the last 2 times.  I got to my room around 6pm, got my dinner ordered.  Stan had to feed me.  After the boys visited and went home, I tried to go to sleep, only to wake up about 15 minutes later choking on my secretions.  I couldn't swallow my own saliva and I was having trouble breathing.  The ICU manager came up to my room and stayed  with me until the doctor could come evaluate me and they could get me transferred to the ICU.  The ICU doctor saw me as soon as I got to the unit and decided I was didn't need to be intubated yet and they wanted to wait to see if I could turn things around with the 1st dose of IVIG since it was currently infusion.  They did some breathing tests frequently over the next several hours.  I stayed borderline until partway through the next day.  I was finally out of the woods breathing wise by early afternoon.  I still required oxygen though.  I wasn't allowed to eat or drink anything except for 1-2 ice chips per hour because I couldn't swallow without choking.  That lasted until the next afternoon when   I was allowed to start with soft food and slowly advance my diet.  I finished my IVIG on Thanksgiving early in the am (like 4am.)  By the time the doctors rolled around at 9ish, I was able to lift my arms off the bed a little bit, move my hands, move my torso some and wiggle my toes just a tiny bit.

I've been out of the ICU for 3 days now.  I can raise my hands over my head well enough that I can braid my hair.  I can lift my torso off the bed.  I can turn myself with help.  I still have very little movement below my waist except that tiny twitches I have in my feet and my upper body is very weak.  I can't open my milk cartons, or some of the bottles, like soda bottles, but I am getting stronger every day.

The plan is for me to be transferred to the rehab hospital as soon as insurance approved the referral.  I'm going to call on Monday and find out when they estimate an answer.  I know I only have 60 days of inpatient rehab per year and I have used about 34 maybe, so I still have 26 days, almost 4 weeks worth.  I shouldn't need more than 2, maybe 3 weeks.  I usually bounce back really fast from these once I start going through PT/OT, especially

When the neurologist saw me in the ICU (not my normal one, but the one who saw me the last time I was here), he did make a few recommendations for me.  He thinks I should go see a neurologist at one of the teaching hospitals in Houston or Dallas once I am able to travel.  Dr. Westgate, my regular neurologist, has mentioned this once already to me, so she has been thinking this way too.  She hesitated though because the one I saw in Houston prior to seeing her said that my symptoms were being caused by stress.  I have no doubt that stress makes my symptoms worse, but they are by no means the sole cause of them.                                                                                                                                             

I haven't fallen off the edge of the eath

Just in case you were wondering, I am still around.  Life has just gotten busy.  I think I need to put "write on blog" on my calendar because then it will get done.  PT and doctors appointments have become my full time job since my last big hospitalization.  During my last episode of paralysis, it turns out my bowel was damaged, so I have pelvic physical therapy once a week, pool therapy once a week and regular PT once a week.  I go for my weigh-in at Ideal Protein once a week and usually see the chiropractor while I am there.  I almost always have at least 1 doctors appointment each week.  The week of Halloween, I have 3.  Having a chronic illness is a full time job.  I have to factor in a lot of drive time too since we moved out to Del Valle.  All of my doctors are at least 25-30 minutes away and a few are 40 minutes away.  I would really love to have a more energy efficient vehicle.  Handicap vans are not the most energy efficient things.  They are always big and the equipment weighs a lot.  I really didn't think I would still be driving a van when  I didn't need it to chauffeur kids around.  I would love to be able to drive a smaller car.  I am so grateful to have this van though and that we were able to inherit it from Stan's mom when she passed away.  These handicap vans cost double the  cost of a regular van.

Last week I  had my 4th hospitalization for the year.  I have broken 2 personal hospitalization records this year.  Not somethings I was trying to do.  First, longest hospitalization - 5 weeks.  Second, most hospitalizations in 1 year -4.  My previous record was 3 and all 3 of those were fairly short, like 2-3 days.  This year I have spent over 8 weeks in the hospital.  Now I bet you want to know why I was in the hospital.  It was actually planned.  I had to have my baclofen pump replaced.  The battery was almost dead so we wanted it done while my deductible and  out of pocket max were still met.

This surgery was much easier than the initial placement.  Only had to be in the hospital over night.  I was in the hospital then in rehab for 2 weeks last time.  The worst part of the recovery has been  unrelated to the surgery.  I have a condition called autonomic dysreflexia.  It developed after my 2nd paralysis episode.  This means the autonomic nervous system doesn't regulate itself the way it should.  The autonomic nervous system controls all of the nerves that are involuntary like in your heart, blood vessels, lungs, sweat glans, hair follicles and many other areas.  This disorder is common after spinal cord injuries and can happen in things like Guillan Barre or multiple sclerosis.  My paralysis episodes are very much like Guillan Barre, they just don't fit the diagnostic criteria because of some of my test results.  So, after we got home from the hospital, my skin started feeling like I was sunburned everywhere.  I have had this a few times but not  really since I started IVIG.  This is the one symptom I have a hard time dealing with.  I can never get comfortable.  The breeze from the ceiling fan makes my skin burn.  There were some strange things with it though.  I was getting goosebumps everywhere off and on.  There was a lot of pain associated with the  goosebumps.  They are the worst on my legs.  Also my legs feel like I haven't shaved in several days despite the fact that I have shaved twice since my surgery.  It's like the goosebumps are pushing the hair follicles out more.  If  anything rubs on those stubbly areas, it hurts even more.

I have found nothing that gives me any lasting relief.  Stan gave me a blessing and commanded the nerves to begin healing and the pain to ease.  I have pleaded with God to take away the pain multiple times and asked him what I needed to do to get rid of the pain.  I've broke down into tears a couple of times a day.  Early Saturday morning I really broke down but decided I needed to approach this a bit differently.  I prayed to god and told him I was going to turn this over to him.  I asked him to help me have faith in the blessing Stan gave me.  Then I asked him to inspire me that  I would know things that would prevent the  pain from getting worse.  I immediately received some very clear instructions.  These instructions not only kept my pain from getting worse, but I actually experience some improvement.  Sleeping has been difficult for me, but I have been able to sleep on my side better than I usually can.  The really strange thing is that I wake up hot but it I remove the covers, or even just the top blanket,  then I get goosebumps and I am in more pain.  I am really hoping my AD was just triggered by the surgery and the pain.  I really don't think I could deal with this on a daily basis.

First weekend of rehab

I transferred from the main hospital over to the rehab hospital Thursday night around 6pm.  I was a bit miffed after I  called the insurance company and they told me on Thursday afternoon that they had only gotten the request for rehab on Wednesday afternoon.  The order for PT eval was written on Sunday afternoon.  It wasn't actually done until Tuesday. 

Friday I had all of my PT/OT evaluations done.  I have a lot of work to do.  My trunk and arms are very weak.  My legs are both paralyzed still.  I can't move from the waist down.  I'm not sure how long I will be here.  Probably at least a week.  I had regular therapy on Saturday.  It was decided I didn't need speech therapy for swallowing issues.  I still have some minor swallowing issues but they believe they are from reflux problems combined with a little bit of swallow dysfunction.  They don't  think they can do much with speech therapy until I get my reflux problems under control.  I have been on  several medications to control it and nothing seems to be working.  It seems to never been under control. I have an appointment with a new ENT who specialized in laryngeal-pharynx reflux.  Maybe he can get to the bottom of the problem.  I am almost wondering if it is time to consider surgery for my reflux.

I also got to take a shower yesterday for the 1st time in 8 days.  I had had sponge baths and used dry shampoo but that just isn't the same thing.  My hair looked so gross before I got into the shower and it felt even worse.  I had to even change my pillow case because it felt grease from my hair.  It was disgusting.  The last time I had washed my hair was when I colored it, so my hair dye got all over the towels.  When I  had my kids, the hospital nurses tease you that you lose all your dignity and you will show your body to anyone after you have a baby.  I argue that rehab is absolutely worse than having a baby.  You have to have so much help getting dressed, moving from the wheelchair  to the bed/chair/shower/toilet, pulling pants/underwear up, etc.  The staff here gets really used to it, so it isn't unusual for someone to be sitting in a wheelchair butt-naked when the staff helps the dry off, get dressed etc.  The "staff" can consist of therapist, therapy assistants, nurses, techs, and just about anyone else.  The only person who hasn't seen me naked while I have been in rehab has been my doctors.  Sorry for the TMI.

Another TMI topic is my catheter.  I was hoping I could get it out when I came over to rehab.  In general, Dr. Latorre doesn't like his  patients to have indwelling catheters in and likes to get them out as quickly as possible.  He did last time.  This time, he isn't rushing it.  Since I can't sit up on the toilet on my own yet and my hands are still weak, Dr. Latorre wants the to get a little bit stronger before he takes the catheter out.  This thing is driving me crazy.  I really want it out.  The plan is to try to take it out on Monday and see how I do without it.  I have to use a catheter on a regular basis anyway but I just drain my bladder and don't leave it in place.  The OT didn't feel like I had the muscle control in my hands to be able to insert the catheter right now so thought I needed to continue to have the indwelling catheter.  She also felt I didn't have the upper body control to sit up on my own to be able to use the I&O catheter.  I've used it laying in bed before, I just have to have extra help since I can't see when the container is full or the catheter stops flowing.

I hope I will  get to start pool therapy tomorrow.  I get so much progress from being in the pool and I don't have to worry so much about my upper body weakness and gravity and falling.  I can actually work on my legs and my core without worrying about falling.  I can do so much in the pool that I can't do any where else.

As much as I hate being in the hospital, I'm glad I don't h ave to be out there in the heat.  Yesterday, Stan and Rachael were here visiting and we went over to the gift shop.  It was 105 outside at 4pm.  The heat index a that time was  108.  We never left the shade so I never felt the full effects of the temperature.  Today,  the actual temperature is  suppose to be 108.  It's 2:55pm right now and it is 104 outside.  It eels like 108-109.  It has been a really, really hot summer.  We have had over 35 days that have been over 100 degrees so far this year.  We haven't even hit August yet.  August is going to be a scorcher.

I want to again thank everyone for the prayers given on my behalf.  Thank-you to those of you who put my name on the prayer roll in the temple.  If you read this blog, let me know.  Leave a comments just to say HI.  I feel like no one is reading this except my dad because he tells me he reads it.

My ICU visit

I typed this up a few days ago but  it would not publish to save my life so  I just saved it but no such luck there either, so here it goes again, attempt number 2 to share with you my ICU experience.  It's one I hope  never to have to experience ever again.

On Sunday, while still in rehab, I woke up with my legs reparalyzed.  I let my nurse know and went back to sleep.  a few hours later, right during shift change of course, I woke up again and could not move from the waste down.  This was serious business and to this nurses brain meant lots of bad stuff was about to happen.  I tied not to freak out but insisted my day nurse call the doctor.  He didn't  hesitate to order an mri of my back and consulted with the attendings at the main hospital.  The rest of the day continued without incident until about 5pm when my hands started to feel weak.  I couldn't hold my phone or control my wheelchair.  This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement.  By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital.  I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands.  I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.

I received 2 blessings that day.  The first one was given to me by my husband when he got to the rehab center shortly after the  paralysis started to return.  I love Stan's blessings.  He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life.  Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time.  I  needed to  turn to my Heavenly Father in pray and turn to the scriptures.  I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me.  My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving.  I will be ther 1st to admit that I am not very good about letting others help me.  I want to  do things myself, even after 10 years of dealing with this disease. I have been really working on that though.  After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the  situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it.  Bishop's blessing told me I would be healed in the Lord's time and  I  needed to put the work into getting better but the healing process had already started.  I needed to stay faithful, which I did all week.  While there was reassurance in these blessings, they didn't keep me from being totally scared.   I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass.  I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ.  Each time I go through one of these medical trials, I learn a little more about the  atonement of Jesus Christ.  I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.

They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator.  They did a test every 2 hours to see if my diaphragm was getting weak.  By the 4th or 5th test, I was at the bottom limit for diaphragm involvement.  I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal.  I got a little bit out of breath when I talked and I was sleepy a lot.  I did best when I slept.  My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.

Monday afternoon I had to go get a spinal tap to test for a bunch of things.  I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old.  They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true.  My body was completely flaccid.  Interestingly, even my neck, which for all intense and  purposes doesn't seem effected because I can still move it,  is no longer tight and spastic like it usually is.  That part is really nice actually.  I would like that fact that I have no spasticity if I could actually walk and move my body around.  "Body, you did not need to go from one extreme to the other, you really didn't."  I don't know why I just bothered trying to tell my body that little bit of advice.  I don't know about your body, but mine never listens to me.  I was never a rebellious teenager, but I have a rebellious 40+ body.  I wish I would have been a  rebellious teenager if this is the trade off 😁

Ok, now that we took that little detour, back on track.  After I got back  to the ICU from the spinal tap, they started another round of IVIG.  It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the  next as far as total dose.  Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days.  The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month.  My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit.  I slowly regained use of my hands, arms and torso as the night progressed.  Nothing from my legs or hips though.  I'll take what I can get though.  I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger.  It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me.  I know the blessing told me that I would regain use of my body again, but when you are laying  in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch  your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.

 My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks.  It's really hard to write)  I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date.  Those kinds of things really discourage me and they are defeatist thinking.

I had my PT and OT evaluations today.  I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back  quickly.  Their evaluation on top of the blessings I have received make me confident that I will walk again.  I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.

 I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything.  I hope everyone has a great weekend

Big leaps forward, then 1 step back

I will warn you THIS POST CONTAINS MANY TMI STATEMENTS SO READ AT YOUR OWN RISK
I know that  is not how the saying  goes, but I  feel as though I took  more than  steps forward for my little step back  today.  My sleep was really off last night despite Dr. Latorre having me on scheduled sleeping pill.  I've never taken a sleeping pill regularly, or even as needed.  I've taken Ambien once and that knocked me on my backside.  I got 1 Ambien tab before I left the hospital after going in for preterm labor and getting a bunch of shots to stop it (the shots make you very jittery).  I don't remember getting  home, and then I slept for 22 hours straight except for stumbling to the bathroom  every few hours (I was pregnant)  Because of that experience, I shy away from sleeping pills.  However, Dr Latorre (my rehab Dr in case you don't remember) wants to make sure I am getting adequate sleep so he  has ordered a sleeping pill to be given every night.  Last night, not even that was enough because I kept waking up to pee   When you can't walk to the  bathroom and you have to use a catheter to pee, this can take quite a while and can result in being wide awake when you are done.  Despite being careful not to drink too much after 8pm, I had to pee 3 times last night.  Sometimes it was a lot and sometimes it wasn't.  Then I started itching a lot which is one of my annoying MS symptoms so I put lotion on the effected areas, benadryl cream and finally just asked for some oral benadryl.  I had 3 bouts of sleep that were 2-3 hours each.  I was not ready to wake up.

Now this am, when the nurse took my am vitals, my BP was 100/56.  For those of you who are not medical, this is a low BP.  It I  was someone who was walking, it could have made me faint when I stood up out of  bed.  Since I was moving to the wheel chair, that wasn't a problem.  We did hold my diuretic which keeps my legs from swelling because I am in the wheelchair all the time.  I had some dizziness during PT a short time later and my heart rate was pretty fast, like 120.   My BP was good after a few hours of drinking a lot of fluids. My HR has been up most of the day, higher than my norm of 95-105.  I kept having to pee really frequently though but only had small amounts.  Usually I can only tell if my bladder is full when I have more than 750cc of urine in there but this am it was 200-300cc and I felt like I was going to burst.  A urine culture has been sent but the urninalysis was normal so we will just have to see how the culture comes out.

While all of this was happening this morning, I started having some muscle spasms again.  I would have been perfectly happy if they never came back and they took my pump out. This is one of  the biggest reasons all my doctors and  I were sure I had a UTI. No change in dose on my pump today.  We will see what happens with my spasms today.  I did get the OK to do  my bed to chair transfers alone today, but I can't go to the bathroom by myself.

I my speech and cognitive therapy today, I was given the game Luminosity on the tablet as my homework assignment.  It was challenging but I was surprised to find out when it scored me that I did better than 20-39% of the people who are my age

Progress Report

I'm not going to report on the things I did today because frankly, it's the same things every day as far as therapy goes.  I will tell you about the great progress that I has become most apparent today.  When Dr. Latorre came in to adjust my pump more today, he assessed movement, strength and spasticity/tone.  Still no spasticity or tone, which is still so strange but I could more my right foot at the ankle rather than just the toes and my left one actually moved some at the ankle.

In the therapy gym. I stood quite a long time with support.  I was able to take a few very small steps with assistance.  I think if my foot didn't drag so much on the ground I might be able to take bigger steps.

In the pool, I walked about 20 feet although the PT had to scoot the  rt foot along.  I can do a lot more exercises in the pool and have more movement.

I also worked with the speech therapist today on strategies for when I forget words or when I replace words with wrong words.  Many of them were things I am already doing.  We also discussed memory strategies.  I used to have a sharp memory.  Now it's as dull as a ball.  I do all the things she suggested there too.  Use a calendar, use a check list, keep notes in a smart phone or notebook. Set alarms for things.  These are all things I do on a daily basis so I don't forget appointments, things I have to do, projects I want to do, grocery items, medications, etc.  I'm glad I'm an organized person or I could never keep it all  straight.

Sleeping pill is kicking in again so I am off to the land of ZZZzzzzz.

More transfers and more standing.

The 1st full day I was here, I was asked what my goals were.  I said I wanted to be as independent as possible so I didn't have to rely on my family for my basic needs such as ADLs,  I have always greatly valued my independence.  I am willing to ask people to help me do things so that I can preserve my energy but I don't want to have to have people do the most basic things for me.  I don't want to be pitied or treated like I am weak.  My legs are weak but I am not weak.  I may not be able to make a big family meal, but I want to be able to make my own meals for myself or heat up leftovers.

Next,  I wanted to be able to stand so I can do my weight checks for my Ideal Protein diet.  Being that there is a big gap in this blog, it is not really clear here that I have lost 60 pounds since June 19 and I have 40 more to go.  I need to be able to weight in weekly to monitor my progress.  It's possible to weigh in a wheel chair but it is a pain in the butt.  Worse case scenario I would make an arrangement with Dr. Latorre (my rehab Dr.) to weigh at his office every week or 2.  I would prefer to use the IP scale because it tells body fat and lean body mass but this would only be worse case scenario.  I am well on my way to being able to stand on the scale though.  I have been  able to stand at the parallel bars with lots of extra support.  I can shift my weight side to side.  The strange thing with standing up is that I  can't feel my muscles engaging when I stand.  The staff tells me my legs are doing all the work but I don't have any control over it and I can't feel the muscles doing anything.  There is an exercise bike I use that can tell us when my muscles kick in and when they are just flaccid - it all feels the same to me.  It is very strange.  It is also very strange that there is NO tone in my legs and no muscle spasms.  We are still decreasing the baclofen dose since I don't need it.  Dr. Latorre has cut it in half or more in the 10 days I have been in the hospital

To be independent, I have got to master these transfers and that has been harder than I thought.  I've mastered transferring from the bed to chair and back.  I'm getting pretty fast and it's pretty smooth.  The toilet and the shower are another story.  I think it's managing the clothing.  I won't get into detail because that  is TMI.

Lastly, I will probably get a speech therapy evaluation.  I don't know if anything will come of it but we will see.  Any of you who converse with me regularly know about the problem I have with switching words so things don't always make sense, forgetting words, not being able to say words properly, etc.  I only scored a few points under passing but it qualified me to have an evaluation.  I'll post about it after I have it

Things got real

After yesterday's evals, I was feeling pretty good.  I was rocking the transfer board transfers.  They complemented my core strength and upper body strength and my motivation.  Today was not so easy.  I wore a dress yesterday was plain underwear underneath.  Today I decided to wear a loose fitting pair of pants and a top so I didn't have to worry about flashing everyone.  Huge mistake.  It took me 10 minutes to get my pants up after I went to the bathroom 1st thing this am and I was dripping in sweat.  I changed into a dress again for the rest of the day.  Those issues in the bathroom made me start thinking of all the issues I can have in the bathroom away from home.  I already have trouble with public bathrooms having handicap stalls that are too small for my power chair.  I can't always get onto the toilet easily.  Having to be lined up and using a transfer board isn't going to make this any easier.  I frequently have to rely on being able to walk when  I go to friend house because even if their house is accessible, the bathroom is not.  Now my brain is running away with all kinds of scenarios of being in public and not being able to actually use the toilet.  I'm sure I will work them out eventually but I felt overwhelmed today.  When I go home, at first I will go to my medical appointments and that is all.  I'm going to need time to get used to the world again. 

I ended up fretting about these things all day.  Just before Stan went home for the evening, we said prayer together.  As I am praying for us to be able to learn to cope with my new limitations together, I start to break down and start to bawl.  Stan doesn't always know what to do when I start to cry like that.  He likes to be able to fix things, but that isn't a "I need it fixed" kind of cry.  It's just an "Im over whelmed and need to release some tension" kind of  cry.  I guess guys don't get those because he has always tried to "fix it".  After almost 28 years of marriage he has finally realized there is  nothing to  fix and I just need him to hold me and let me cry.  It always feels so good to release that pent up tension and just cry.  I figure I'm going to  be tweaking how I do everything for a bit until I find what works for me with my new limitations.