I actually came home yesterday afternoon, a day earlier than planned. On Wednesday afternoon, my PT met with my family and we made sure I could get into my van. While I was sitting in the drivers seat of the van, my therapist made a comment about how easy it would be for me to just drive home. As we talked more, we decided that I could go home after OT taught my home health nurse how to help me with transfers. We worked it out with the case manager. Yesterday, I sprung it on Dr. Latorre. Usually they don't do therapy on the day you go home and I had a full day of therapy scheduled. I didn't see the point of staying there over night just to wait for home health to be arranged. I was so happy to be home.
The house wasn't as bad as it could have been. The kitchen was about what I had expected. The boys consider "cleaning the kitchen" to consist of doing the dishes that are in the sink. The kitchen counters were pretty messy with trash, crumbs, sticky stuff and general junk that needs to be put away. The fridge had a lot of rotten food in there. I threw some of it away immediately. There is still something in there that smells though. It took all of my will power not to go in and clean the kitchen. I had to do a little bit of clean up this morning before I could make my breakfast but I'm trying to be careful and not over doing things my 1st day out of the hospital
The rest of the house was pretty good. There were blankets all over the couch which is pretty normal for us since the cats have scratched up the couch. The table is cluttered. Our bed had stuff all over it but it w as an easy clean. Our bathroom smelled like cat pee though. Patches was diagnosed with a tumor in her throat just a few days before I was admitted. She went down hill quickly and went off somewhere by herself and passed away, or so we assume because she hasn't been seen for more than a week. Prior to her disappearance, she was drooling everywhere and it was really smelly according to Stan. She also kept peeing in she shower, so I'm sure she is the one who peed on the carpet in the bathroom. Lucky may have done it too to cover up Patches marking. You can just never tell with cats. They never did this in our old house but when we moved into the apartment while our house was being built, we had a problem with the cats doing their business in the showers. That transferred over to the new house. We put hinges on the door to keep the bathroom doors closed. We thought they had stopped so we let our bathroom door open when I couldn't walk again just before Christmas.
Next week, everything in my regular life starts up again. On Monday, I have my pain doctor appointment then in the afternoon I will have my home health PT eval. Tuesday I have to have an EMG as part of the continued work up to figure out this ascending paralysis. I will also meet with the OT that afternoon. Wednesday is going to be my crazy day. I have had an appointment with my urologist in the morning. Then I have my 1st weigh in since being in the hospital, then my follow-up with Dr. Westgate. In between, I need to stop by Quilter's Folly to pick up my new block of the month. Andrew is going to drive that day so I can preserve energy. The rest of the week is empty so I can rest. I didn't want my schedule to be that full so close to my discharge. I would have preferred to spread those appointments out a bit but I've had the pain Dr. appointment for over a month, and the urologist for 6 months. Dr. Westgate wanted to see me the week after I got out of the hospital. I'm hoping she can get to the bottom of this quickly. The neurologist I saw in the hospital told me that it was very likely that the ascending paralysis could happen again. I hope it's easier to get answers this time than when I 1st started having neuro problems. It took a year to diagnose me with MS.
Friday, April 27, 2018
Monday, April 23, 2018
The end is in sight
It has been a really long couple of weeks. I was 1st admitted to the hospital on March 24th. I have been in the hospital for 4 weeks and 3 days now. 1 week prior to this admission, I had spend 24 hours in the hospital with chest pain that turned out not to be cardiac related but the beginning of an asthma exacerbation. I am scheduled to go home on Friday. I can't wait. 5 weeks of being in the hospital is a really long time. It's my new hospitalization record. I hope it stands for a long time.
Over the weekend, it seems like my strength increased a lot. On Friday I started being able to stand from my wheel chair and then pivoting over to the toilet. It was pretty challenging at first, but it is pretty easy now. It seems a little silly that the staff has to supervise me since they just watch to make sure I am ok. I couldn't really take any steps on Friday on land or in the pool but today I was able to walk about 20 feet both within the parallel bars and with a walker.
Tomorrow my PT and OT will have a meeting with my rehab doctor to discuss my progress. They are going to recommend that I be allowed to be independent in my room for all of my activities in preparation for discharge on Friday. This week we are going to continue to work on arm and hand strength by working on my quilt block, leg strength and flexibility, core strength, fine motor skills and lots more. When I go home, I will have Rehab without Walls which will come to my house for a few months to do therapy and continue working on all of these things.
I'm sure everyone is tired of hearing about the hospital so I can start writing about other things. I also plan on starting to write some of my like history in this blog. I have a booklet with life history prompts and I plan on using those prompts as my post title and then my entire post with center around that prompt. Maybe one of these days I can just make my blog into a book with some minor editing.
Over the weekend, it seems like my strength increased a lot. On Friday I started being able to stand from my wheel chair and then pivoting over to the toilet. It was pretty challenging at first, but it is pretty easy now. It seems a little silly that the staff has to supervise me since they just watch to make sure I am ok. I couldn't really take any steps on Friday on land or in the pool but today I was able to walk about 20 feet both within the parallel bars and with a walker.
Tomorrow my PT and OT will have a meeting with my rehab doctor to discuss my progress. They are going to recommend that I be allowed to be independent in my room for all of my activities in preparation for discharge on Friday. This week we are going to continue to work on arm and hand strength by working on my quilt block, leg strength and flexibility, core strength, fine motor skills and lots more. When I go home, I will have Rehab without Walls which will come to my house for a few months to do therapy and continue working on all of these things.
I'm sure everyone is tired of hearing about the hospital so I can start writing about other things. I also plan on starting to write some of my like history in this blog. I have a booklet with life history prompts and I plan on using those prompts as my post title and then my entire post with center around that prompt. Maybe one of these days I can just make my blog into a book with some minor editing.
Thursday, April 19, 2018
Progress Report
It's been a few days since I updated this because it's been just the same thing going on every day here. I've been going to PT and OT and getting a little bit stronger each day. Today we added pool therapy. Here is a break down of the things I couldn't do when I got out of the ICU but I can do now. Some of them are pretty small things, but are a big deal for me. They are big steps toward independence even though they seems like such small things. First of all, I can roll over by myself and position myself in almost any sleeping position. I still have a little bit of trouble if I need to position pillows under or between my legs but I can get into a comfortable position on my own.
2nd, I can sit on the edge of the bed without falling over. The last day that I was in ICU, the therapist had me try to sit on the edge of the bed and I could not hold myself up. I still have a little bit of weakness in my trunk that shows up at various times, such as when I am trying to stand, when I was in the pool, and when I am trying to bend over to pick something up from a sitting position and coming back up (like if I drop something)
3rd, I can transfer from my chair to the bed and vice versa independently. I started doing this independently only 48 hours prior to going to the ICU. It's the quickest way for me to get in and out of bed. This became possible only because my trunk became strong enough to hold myself upright. I used a slide board to do this transfer. The slide board created a bridge between the chair and the bed or whatever else I am transferring to and I slide across the bridge.
The biggest thing is I can stand a little bit. This allows me to do a stand pivot transfer to the toilet from my chair.. Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery. Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet. This gives me a huge amount of freedom when I am out in public. I won't have to carry my slide board with me when I go places or have to figure out how to maneuver in a handicap stall that is just a little bit too small.
Overall, my strength is coming back too. When the doctor does a neuro exam, they assign a number to each extremity for strength ranging from 0-5. A score of 5 is a normal, strong extremity with no deficits. It's been a long time since I have scored a 5 on a neuro exam. A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid. When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone. It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement. When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities. Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+. These numbers are a huge improvement from my ICU time.
I have 1 more week in rehab and then I get to go home. It seems like I have been here forever. I am so ready to go home.
2nd, I can sit on the edge of the bed without falling over. The last day that I was in ICU, the therapist had me try to sit on the edge of the bed and I could not hold myself up. I still have a little bit of weakness in my trunk that shows up at various times, such as when I am trying to stand, when I was in the pool, and when I am trying to bend over to pick something up from a sitting position and coming back up (like if I drop something)
3rd, I can transfer from my chair to the bed and vice versa independently. I started doing this independently only 48 hours prior to going to the ICU. It's the quickest way for me to get in and out of bed. This became possible only because my trunk became strong enough to hold myself upright. I used a slide board to do this transfer. The slide board created a bridge between the chair and the bed or whatever else I am transferring to and I slide across the bridge.
The biggest thing is I can stand a little bit. This allows me to do a stand pivot transfer to the toilet from my chair.. Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery. Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet. This gives me a huge amount of freedom when I am out in public. I won't have to carry my slide board with me when I go places or have to figure out how to maneuver in a handicap stall that is just a little bit too small.
Overall, my strength is coming back too. When the doctor does a neuro exam, they assign a number to each extremity for strength ranging from 0-5. A score of 5 is a normal, strong extremity with no deficits. It's been a long time since I have scored a 5 on a neuro exam. A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid. When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone. It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement. When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities. Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+. These numbers are a huge improvement from my ICU time.
I have 1 more week in rehab and then I get to go home. It seems like I have been here forever. I am so ready to go home.
Sunday, April 15, 2018
Where did those muscles come from?
I have been in physical therapy for the years and years, mostly for my legs, especially my right leg. It has been paralyzed multiple times. With lots of PT and IVIG, I regain my ability to walk at least some. I've had paralysis in every extremity in my body at some point over the last 10 years. The majority of the exercise I get come from PT exercises and a recombant bike at a slow pace for 20-30 minutes most days. These are not the kind of work outs that can make a person sore. This is why I was very surprised when just a day of rehab made me very, very sore. I started getting a little sore after my first 2 hours of PT/OT yesterday. We did core work almost exclusively. I took some Tylenol and felt better. This morning though, I was very sore. My back and obliques hurt a lot. It's not my normal back pain. My abs hurt too. I guess that is what happens when those muscles are paralyzed for a few days, then have to be strengthened. I feel like I did 500 sit ups. I guess the soreness is worth it is because my trunk is stronger today than it was yesterday. I can hold myself up for several minutes before I start to drift. Do you know what the worst thing about being sore is? Being in the hospital, I am limited to what the doctor orders for pain and they only ordered Tylenol every 8 hours. Who gives Tylenol every 8 hours? I need to get this changed as soon as I see Dr. Latorre in the morning.
Friday, April 13, 2018
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
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
Friday, April 6, 2018
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
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
Thursday, April 5, 2018
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.
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.
Wednesday, April 4, 2018
Rocked Transfers, Added Pool time
I can honestly say that I ROCKED transfers today. I did most of my transfers today without the use of the slide board. I did what is called a squat pivot transfer. We started doing that yesterday in the bathroom after struggling with the slide board and pinching the inside of my leg, causing a big blood blister. It hurt so bad. Also the slide board fell into the toilet. That is what made the decide they needed to figure something else out for the bathroom. Now, my legs have gotten strong enough that I can pull up with the bar, stand for 30 seconds or so to pull my pants down, then sit back down, then stand and pivot over to the toilet. I repeat this process on my way back, with a rest stop in between. I can do all of my transfers pretty much by myself with just a little bit of supervision.
This morning, we started some therapy in the pool. I couldn't walk or swim from station to station so she had to carry me which felt strange. Once I was there, I was able to do more in the water than I could in the gym.
I also had a more extensive speech and memory evaluation. I did fine on the evaluation. As I explained the problems I have with my speech, such as replacing words in conversation, forgetting the names of objects and people. Those are the biggest. Of course, those couldn't be replicated in the evaluation. Those are usually things that come up in higher stress situations. She just showed me pictured and asked me to identify them. I had no problems with that. She also did a longer version of the memory test and I did poorly on that again. We decided not to pursue speech therapy here because it will detract from the other therapy I need. I get 3 hours a day of therapy no mater what kind of therapy it is. Once I get a little more mobility back and I am not needing such intensive PT, I may look into speech therapy a little more.
The nurse just gave me a sleeping pill that Dr. Latore insisted I take while I am in the hospital and I am having trouble staying awake. I really need to post around dinner rather than at 9pm
This morning, we started some therapy in the pool. I couldn't walk or swim from station to station so she had to carry me which felt strange. Once I was there, I was able to do more in the water than I could in the gym.
I also had a more extensive speech and memory evaluation. I did fine on the evaluation. As I explained the problems I have with my speech, such as replacing words in conversation, forgetting the names of objects and people. Those are the biggest. Of course, those couldn't be replicated in the evaluation. Those are usually things that come up in higher stress situations. She just showed me pictured and asked me to identify them. I had no problems with that. She also did a longer version of the memory test and I did poorly on that again. We decided not to pursue speech therapy here because it will detract from the other therapy I need. I get 3 hours a day of therapy no mater what kind of therapy it is. Once I get a little more mobility back and I am not needing such intensive PT, I may look into speech therapy a little more.
The nurse just gave me a sleeping pill that Dr. Latore insisted I take while I am in the hospital and I am having trouble staying awake. I really need to post around dinner rather than at 9pm
Tuesday, April 3, 2018
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
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
Monday, April 2, 2018
Some good things happened today
I think I've recovered from being totally overwhelmed on Saturday although I will admit I still haven't mastered betting my pants down, getting to the toilet, doing my business, getting back to the chair and getting my pants up. That is what started getting me overwhelmed in the 1st place. It's getting a bit easier but the transfer board just doesn't stay very well on the toilet and it is hard to get your underwear up when you can't stand up. I have to recline my seat all the way and roll back and forth hiking up each side. It wears me out. The staff wants to help me a lot, especially the new tech but it is important that I do as much as I can by myself but then I have to realize that I am still learning how to do all of this and I still need a lot of help so I need to realize when I need it. It's a balancing act.
When I worked with physical therapy this afternoon, she had me standing up for 20 minutes. Now before you get excited I was not standing by myself. I couldn't even feel my muscles activating while I was standing. I was in standing frame that pulled me into a standing position then held me there. After a short break, I was able to do a few minutes of standing at the parallel bars on my own. The 3rd time, I did feel my muscles engage but it was erratic and out of control. Regardless, it was muscle engagement and it is a start.
Dr. Latorre decreased my baclofen dosage again. Still no spasticity. It still feels really strange to not have spastic legs.
My therapist have a meeting with my doctor tomorrow and they will give me a better idea of how long I need to be here. My OT was telling me today that she thinks until maybe next weekend so that means no Bluebonnet shop hop. I'm bummed. It was going to be so fun doing that with Delia and Margie.
My diet has really suffered the last 2 days. I have had a lot of cravings, way more than usual. I'm sure that means I am no longer in Ketosis. When I am firmly in Ketosis, I really don't crave sugary foods at all. The last 2 days, I have had many, many times when I needed to eat when the only thing available is the food on the unit and there is nothing IP friendly here. I have had 2 snacks of graham crackers and pudding. Andrew is picking me up a new weeks worth of IP snacks. That will help with these between the meal munchies.
Getting sleepy so I am off to try to sleep.
When I worked with physical therapy this afternoon, she had me standing up for 20 minutes. Now before you get excited I was not standing by myself. I couldn't even feel my muscles activating while I was standing. I was in standing frame that pulled me into a standing position then held me there. After a short break, I was able to do a few minutes of standing at the parallel bars on my own. The 3rd time, I did feel my muscles engage but it was erratic and out of control. Regardless, it was muscle engagement and it is a start.
Dr. Latorre decreased my baclofen dosage again. Still no spasticity. It still feels really strange to not have spastic legs.
My therapist have a meeting with my doctor tomorrow and they will give me a better idea of how long I need to be here. My OT was telling me today that she thinks until maybe next weekend so that means no Bluebonnet shop hop. I'm bummed. It was going to be so fun doing that with Delia and Margie.
My diet has really suffered the last 2 days. I have had a lot of cravings, way more than usual. I'm sure that means I am no longer in Ketosis. When I am firmly in Ketosis, I really don't crave sugary foods at all. The last 2 days, I have had many, many times when I needed to eat when the only thing available is the food on the unit and there is nothing IP friendly here. I have had 2 snacks of graham crackers and pudding. Andrew is picking me up a new weeks worth of IP snacks. That will help with these between the meal munchies.
Getting sleepy so I am off to try to sleep.
Sunday, April 1, 2018
Easter in Rehab
(Stan and I out on the patio by the cafeteria. I think I look a lot thinner than my photo taken at 189#. I haven't been able to weigh in over 2 weeks. What do you think of my "bling" around my wrist, aren't we stylish couple)
Today is Easter. Today is also General Conference for those of us that belong to the Mormon religion so there was no church today, which I'm sure seems strange to all of you Catholics and Baptists because Easter is an important reason to go to church. General conference is a wonderful time though. We get to here our prophet speak to us. This time we even have a new prophet, Russel M. Nelson. In addition to being a prophet of God, he created and invented the 1st heart-lung bypass machine to make open heart surgery successful. He is famous world wide for his work as a cardiac surgeon. As many lives as he has saved with his amazing surgeries, he will save even more in his current capacity as prophet, seer and revelator for the world, not just our church. I'm looking forward to going back and listening to these talks.Stan and the boys came up today to celebrate Easter. We played games for a few hours and just relaxed. I didn't have therapy today. You only get it one day on the weekends got therapy. I did practice going to the bathroom a several times and figuring out how to get my pants and underwear off. That part is exhausting. I need to talk with Dr. Northway, my urologist and have him help me figure a few things out. I'm falling asleep. I'm going to try to write earlier tomorrow.
Betrayal at Baulder's Gate. We just stated so not much of a game play area.
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