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.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Wednesday, February 26, 2020
Wednesday, December 5, 2018
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.
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.
Saturday, November 24, 2018
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.
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.
Sunday, October 21, 2018
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.
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.
Wednesday, August 15, 2018
Out in the real world
Today is my wonderful hubby's 50th birthday. Happy birthday Stan. He is the best husband a woman can ask for. We had a birthday party for him on Saturday. It was pretty casual. We had music playing, we played board games and ate pizza, queso, cake, chips, and a veggies (the veggies were more for my sake than for anything). It was a lot of fun and exactly what he wanted.
I have been out of the hospital for 12 days now. It's kind of strange going from rehab to home PT. I was getting 3-4 hours of PT/OT every day in rehab. Since I have been home, I have had 2 - 30 minute sessions at home with the home health PT. Now I am having to do a lot more for myself than I was at the rehab hospital; fixing my own meals, driving myself to my appointments (I have hand controls and a handicap van for those who don't know), taking care of all my own personal hygiene without any assistance from anyone, cleaning up after myself, and sometimes others. My family helps me a lot with the cleaning though so I am not having to clean house. My boys take care of the dishes, Stan helps with the laundry, especially washing/drying it which is more difficult for me to do since getting my wheelchair into the laundry room with the laundry baskets can be a bit crowded, I have one of those robot vacuums to take care of my floors. Some things just get neglected for now, such as cleaning the shower ; It can just wait. It's not that bad yet. I think all the things I do at home that I don't do in the hospital take the place of the extra rehab. I do have a home exercise plan that my OT/PT gave me before I left but my home PT doesn't want me to do all of that every day. I stretch most days so my muscles don't get too tight, a problem that people with spasticity can easily have and which can make walking difficult if it gets too bad. Plus after sitting in the chair all day, it feels good to stretch out and not be scrunched up all the time.
Today in PT I made some progress. I have been doing some standing at my counters and at the sink such as when I brush my teeth. Today, I used my walker and was able to walk from my sink to my fridge, a distance of about 5 feet. I did that twice. I realize I walked 5 feet in rehab, but I did that in the bars. It is much harder to do that with a walker. The walker isn't as stable as the parallel bars. I am getting more muscle activation in my legs. I am hoping to start getting even more. I just had another IVIG infusion on Monday and Tuesday. I usually get a big surge of improvement after my infusion so I am hopeful that I will start to see more improvements.
I saw my PCP today for a follow-up from my hospitalization. Most of my follow-up issues are going to be for my neurologist, Dr. Westgate. I'll see her in September. My biggest concern for my PCP is regarding the autonomic dysreflexia. Autonomic dysreflexia (AD) is a disorder that can happen in people with spinal cord injuries, and less common in people with Gillian Barre, MS, CIDP and other neurological disorders. This occurs when there is damage to the spinal cord that causes the message from the brain to other parts of the body, especially the bladder and bowel, to not be relayed properly. It gets all mixed up and instead of your brain receiving the message that your bladder is full or you need to empty your bowel, your BP spikes up, sometimes to dangerously high levels. Bladder infections, tight clothing, infection, skin irritations can all cause this. For me, bladder fullness is definitely a trigger. I was very concerned about a UTI triggering it since I don't always know when I have one. She has given me some quick acting BP medication to bring my BP down if it goes over 160/95 and won't come down. Then I need to seek medical attention ASAP. I feel better knowing I have something to bring my BP down should it skyrocket.
I am starting to feel more like myself again on the inside. Even though the 1st episode of this ascending paralysis was worse and my hospitalization in the spring was longer, this time was harder on my emotionally. I went though a depression that I didn't have the 1st time. I think because when it happened in the spring, I just dealt with things as though this was an isolated incidence. This second time, I realized if this could happen a 2nd time, it could happen more than that. I was still not fully recovered from the 1st time. I could walk again but I was still very weak. I think that is why I got so much weaker so much faster. I am just hoping 2 things 1) this doesn't happen again or 2) it waits until I can at least recover from this episode before it happens again. This is especially since I have to have my baclofen pump replaced in October so I don't want to be recovering from surgery and have another episode. Also I only have 60 days of inpatient rehab per calendar year. I have used something like 38 days, so I am running out.
I have been out of the hospital for 12 days now. It's kind of strange going from rehab to home PT. I was getting 3-4 hours of PT/OT every day in rehab. Since I have been home, I have had 2 - 30 minute sessions at home with the home health PT. Now I am having to do a lot more for myself than I was at the rehab hospital; fixing my own meals, driving myself to my appointments (I have hand controls and a handicap van for those who don't know), taking care of all my own personal hygiene without any assistance from anyone, cleaning up after myself, and sometimes others. My family helps me a lot with the cleaning though so I am not having to clean house. My boys take care of the dishes, Stan helps with the laundry, especially washing/drying it which is more difficult for me to do since getting my wheelchair into the laundry room with the laundry baskets can be a bit crowded, I have one of those robot vacuums to take care of my floors. Some things just get neglected for now, such as cleaning the shower ; It can just wait. It's not that bad yet. I think all the things I do at home that I don't do in the hospital take the place of the extra rehab. I do have a home exercise plan that my OT/PT gave me before I left but my home PT doesn't want me to do all of that every day. I stretch most days so my muscles don't get too tight, a problem that people with spasticity can easily have and which can make walking difficult if it gets too bad. Plus after sitting in the chair all day, it feels good to stretch out and not be scrunched up all the time.
Today in PT I made some progress. I have been doing some standing at my counters and at the sink such as when I brush my teeth. Today, I used my walker and was able to walk from my sink to my fridge, a distance of about 5 feet. I did that twice. I realize I walked 5 feet in rehab, but I did that in the bars. It is much harder to do that with a walker. The walker isn't as stable as the parallel bars. I am getting more muscle activation in my legs. I am hoping to start getting even more. I just had another IVIG infusion on Monday and Tuesday. I usually get a big surge of improvement after my infusion so I am hopeful that I will start to see more improvements.
I saw my PCP today for a follow-up from my hospitalization. Most of my follow-up issues are going to be for my neurologist, Dr. Westgate. I'll see her in September. My biggest concern for my PCP is regarding the autonomic dysreflexia. Autonomic dysreflexia (AD) is a disorder that can happen in people with spinal cord injuries, and less common in people with Gillian Barre, MS, CIDP and other neurological disorders. This occurs when there is damage to the spinal cord that causes the message from the brain to other parts of the body, especially the bladder and bowel, to not be relayed properly. It gets all mixed up and instead of your brain receiving the message that your bladder is full or you need to empty your bowel, your BP spikes up, sometimes to dangerously high levels. Bladder infections, tight clothing, infection, skin irritations can all cause this. For me, bladder fullness is definitely a trigger. I was very concerned about a UTI triggering it since I don't always know when I have one. She has given me some quick acting BP medication to bring my BP down if it goes over 160/95 and won't come down. Then I need to seek medical attention ASAP. I feel better knowing I have something to bring my BP down should it skyrocket.
I am starting to feel more like myself again on the inside. Even though the 1st episode of this ascending paralysis was worse and my hospitalization in the spring was longer, this time was harder on my emotionally. I went though a depression that I didn't have the 1st time. I think because when it happened in the spring, I just dealt with things as though this was an isolated incidence. This second time, I realized if this could happen a 2nd time, it could happen more than that. I was still not fully recovered from the 1st time. I could walk again but I was still very weak. I think that is why I got so much weaker so much faster. I am just hoping 2 things 1) this doesn't happen again or 2) it waits until I can at least recover from this episode before it happens again. This is especially since I have to have my baclofen pump replaced in October so I don't want to be recovering from surgery and have another episode. Also I only have 60 days of inpatient rehab per calendar year. I have used something like 38 days, so I am running out.
Sunday, July 22, 2018
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.
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.
Tuesday, July 17, 2018
Hospital day 5
I got out of the ICU last night. We were hoping I could go straight to rehab, but they didn't get the PT eval done, despite it being ordered on Sunday. It didn't get done until this afternoon as a matter of fact. Hopefully insurance will approve rehab early tomorrow so I can get over to rehab and not just have to sit here in the main hospital doing nothing. Medically, I am stable now. I am just soooo weak that I can't go home. PT tried to get me out of bed today and we didn't get very far. They brought me to the edge of the bed and had me sit up with lots of help. Then the therapist let go and I fell backwards. I had to either be held up by someone else or lock my arms behind me.
I am am still paralyzed from the waist down but I can get my hips to make tiny movements. I can't get anything at all from my knees or feet. My hands, arms and shoulders are really weak. I can hold my cup, silverware, and feed myself. I can hold my phone, control the remote. I can't raise my arms over my head though. My diet was advance today to something resembling regular food. It is called mechanical soft. Everything comes up from the cafeteria already cut up, as if I can't cut up my own food. I still am eating a lot of things like yogurt and pudding and mashed potatoes. Stan got me a big smoothie this afternoon. I still have some trouble with swallowing. I have to swallow 2 or 3 times to get each bite down and I have to take really small bites and chew it forever. I was already a really slow eater. When we go out to eat, I'm going to have to tell them to bring my food out 1st so we aren't there forever. I have to have a swallow study some time while I am here. They are going to stick a fiber optic scope down my throat and watch what happens while I am swallowing. It doesn't really sound fun to me but hopefully they can figure out what exactly is causing my swallowing issues and give me some strategies to fix it or they can figure out something else to fix it.
I want to thank everyone that is praying for me and my family. I am a firm believer in prayer and have a lot of faith that Heavenly Father answers prayers.
I am am still paralyzed from the waist down but I can get my hips to make tiny movements. I can't get anything at all from my knees or feet. My hands, arms and shoulders are really weak. I can hold my cup, silverware, and feed myself. I can hold my phone, control the remote. I can't raise my arms over my head though. My diet was advance today to something resembling regular food. It is called mechanical soft. Everything comes up from the cafeteria already cut up, as if I can't cut up my own food. I still am eating a lot of things like yogurt and pudding and mashed potatoes. Stan got me a big smoothie this afternoon. I still have some trouble with swallowing. I have to swallow 2 or 3 times to get each bite down and I have to take really small bites and chew it forever. I was already a really slow eater. When we go out to eat, I'm going to have to tell them to bring my food out 1st so we aren't there forever. I have to have a swallow study some time while I am here. They are going to stick a fiber optic scope down my throat and watch what happens while I am swallowing. It doesn't really sound fun to me but hopefully they can figure out what exactly is causing my swallowing issues and give me some strategies to fix it or they can figure out something else to fix it.
I want to thank everyone that is praying for me and my family. I am a firm believer in prayer and have a lot of faith that Heavenly Father answers prayers.
Monday, July 16, 2018
In the ICU again
I intended to keep this up to date a little better but I haven't done a very good job. I have a good reason to add an update now though. Friday the 13th proved to be a bad day for me. I'm not superstitious so I usually don't worry too much about the date except when I was working at the hospital because it always proved to be a busy shift. Friday evening, we decided to go see Ant-man and Wasp. It was a pretty good movie although not my favorite Marvel movie. I was walking just fine for me prior to leaving the house. On the way there, I went to move my foot of the accelerator to the brake and it wouldn't move. Thank heaven for hand controls. I had to use my hand to move my leg off the accelerator before I could break w/ the hand controls. We got to the theater and I discovered it was both legs that were paralyzed, not just one. That means this wasn't just one o f my MS flares and I needed to watch for it to start moving up my body. I told Stan about it in the lobby and said we could go ahead and see the movie since we had already bought the tickets but if I felt the paralysis spreading, I would let him know and we would leave. By the time the movie was done, I was paralyzed up to my bra line. We sent the boys home in the Civic and we headed to the ER in my van. Stan gave me a blessing in the van. That was a 1st.
We got to the ER about 8:20. I told the nurse what was going on and what I had been through in April and they got me back in about 5 minutes even though there were several people there before me. That is what triage is all about though. The ER doctor came in pretty fast. He had reviewed my medical records from my previous admission. By this time, my arms were a little weak. He wasn't messing around and decided to admit me, but not to ICU. About an hour later, the attending MD came in and I could barely move my arms. Still I was going to the floor though and not ICU. I was kind of surprised but figured it was probably because my diaphram wasn't involved last time. By the time the nurse came in and told me I had a room ready and I was ready for transfer, I could barely move anything and they had decided I needed to go to ICU. It was after MN now and no longer the 13th. I think I got to the ICU around 1:30. Around 2am I started having trouble swallowing. I didn't have that problem last time. They got the 1st dose of IVIG started about 2:30. About 12 hours later, I started being able to move my fingers just a little bit.
I have had 3 doses now. I have the movement back to my arms, shoulders and upper torso but they are very weak. I'm starting to get a little bit of motion to my hips, but I have to assist a lot with my arms and upper body. So far I haven't gotten anything back to my legs yet which is disappointing. I had to stay NPO all day Saturday but Sunday my swallow started getting better so they let me have purred foods and thin liquids. It's a very limited diet. It's also high carb and more sugar than I have had in an entire year. The worst part is that I can't swallow pills so they have to be crushed up and put in food or given IV. Some of them are horrible tasting and make me gag.
I just found out they are going to transfer me to a regular room tonight. Hopefully I will move to rehab tomorrow.
We got to the ER about 8:20. I told the nurse what was going on and what I had been through in April and they got me back in about 5 minutes even though there were several people there before me. That is what triage is all about though. The ER doctor came in pretty fast. He had reviewed my medical records from my previous admission. By this time, my arms were a little weak. He wasn't messing around and decided to admit me, but not to ICU. About an hour later, the attending MD came in and I could barely move my arms. Still I was going to the floor though and not ICU. I was kind of surprised but figured it was probably because my diaphram wasn't involved last time. By the time the nurse came in and told me I had a room ready and I was ready for transfer, I could barely move anything and they had decided I needed to go to ICU. It was after MN now and no longer the 13th. I think I got to the ICU around 1:30. Around 2am I started having trouble swallowing. I didn't have that problem last time. They got the 1st dose of IVIG started about 2:30. About 12 hours later, I started being able to move my fingers just a little bit.
I have had 3 doses now. I have the movement back to my arms, shoulders and upper torso but they are very weak. I'm starting to get a little bit of motion to my hips, but I have to assist a lot with my arms and upper body. So far I haven't gotten anything back to my legs yet which is disappointing. I had to stay NPO all day Saturday but Sunday my swallow started getting better so they let me have purred foods and thin liquids. It's a very limited diet. It's also high carb and more sugar than I have had in an entire year. The worst part is that I can't swallow pills so they have to be crushed up and put in food or given IV. Some of them are horrible tasting and make me gag.
I just found out they are going to transfer me to a regular room tonight. Hopefully I will move to rehab tomorrow.
Wednesday, May 2, 2018
My Follow-Up with my Neurologist
I want to make sure I keep up with my blog and not neglect it just because I am out of the hospital. There is still going to be a lot of things going on with my health and my life that I want to journal about. Maybe people want to read about my life and maybe not. Maybe someone will read about my neurological problems and have some clue as to what is happening to me and help me find answers.
Yesterday I went to my neurologist office and had a nerve conduction study done. To my surprise, it came back normal. After my ascending paralysis, I expected it to be abnormal and so did she. If it had been Guillan-barre or CIDP, the nerves would not have been able to respond but they responded normally. The only nerve that didn't was the nerve that came from my central nervous system down to my feet and back. They couldn't get any response from that at all. So I do not have CIDP like the hospital neurologist thought. My neuro went through the numerous abnormal labs that I had. Many of them pointed to generic autoimmunity, which we knew I already had. One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the symptoms for, but over half of the people with this have small cell lung cancer. Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything. I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances.
I walked away from the doctors office rather disappointed. I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong. She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system. It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all. My doctor can't tell me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body. Over 10 years ago we went through this limbo process before I found Dr. Westgate. Then, I had several doctors tell me that my illness was psychological. No one is telling my that now, but I think that period of time seriously planted some deep fears in me. I'm so afraid someone is going to tell me that my illness is in my head like they did 10 years ago. It's obvious it isn't since I don't have reflexes and I was paralyzed but it has now become a phobia. I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial. It's bad enough to have to go though the trial of the physical illness. The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.
On a more positive note, I had my 1st weigh in since getting out of the hospital. I lost 2 pounds since my last weigh in, which was prior to going into the hospital. It was hard to stay on program in the hospital. The menu there was very high in carbs and it was very difficult to get extra vegetables. The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert. You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.
Yesterday I went to my neurologist office and had a nerve conduction study done. To my surprise, it came back normal. After my ascending paralysis, I expected it to be abnormal and so did she. If it had been Guillan-barre or CIDP, the nerves would not have been able to respond but they responded normally. The only nerve that didn't was the nerve that came from my central nervous system down to my feet and back. They couldn't get any response from that at all. So I do not have CIDP like the hospital neurologist thought. My neuro went through the numerous abnormal labs that I had. Many of them pointed to generic autoimmunity, which we knew I already had. One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the symptoms for, but over half of the people with this have small cell lung cancer. Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything. I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances.
I walked away from the doctors office rather disappointed. I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong. She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system. It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all. My doctor can't tell me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body. Over 10 years ago we went through this limbo process before I found Dr. Westgate. Then, I had several doctors tell me that my illness was psychological. No one is telling my that now, but I think that period of time seriously planted some deep fears in me. I'm so afraid someone is going to tell me that my illness is in my head like they did 10 years ago. It's obvious it isn't since I don't have reflexes and I was paralyzed but it has now become a phobia. I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial. It's bad enough to have to go though the trial of the physical illness. The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.
On a more positive note, I had my 1st weigh in since getting out of the hospital. I lost 2 pounds since my last weigh in, which was prior to going into the hospital. It was hard to stay on program in the hospital. The menu there was very high in carbs and it was very difficult to get extra vegetables. The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert. You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.
Friday, April 27, 2018
Finally Home
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.
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.
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.
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
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.
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
Saturday, March 31, 2018
St. David's Rehabilitation Hospital. Physical rehab, not drug rehab
Rehab day 1, Thursday March 28 - I'm laying in bed in St. David's Rehab hospital and I decided that I needed to start journaling all of this as it happened to help me cope with the emotional part of it. On Saturday, the 24th, I woke up with both of my legs paralyzed. Not just paralyzed but completely flaccid. Paralysis is not something new to me, but usually my MS affects 1 leg at a time and my spasticity usually stays or increases. The previous week, I had been sick with a UTI and asthma, so my pump doctor increased my baclofen pump dose quite a bit on 2 different days. The initial thought was that it was increased too much but after a decrease of 40%, there was no change. The initial increase was only 20%. We ended up decreasing it by more than 60% and we are still not seeing much improvement and no increase in spasticity. The consulting neurologist, not my primary neurologist, quickly decided this was not my MS because of the lack of spasticity (I agree). Among the differential were a virus i n the spinal cord which would be difficult to test for and an autoimmune disease called Chronic Immune Demylenating Polyneuropathy (CIDP), I'll put a link to the disease page below so you can learn more about it. They really couldn't do a whole bunch to figure out what it exactly was since it really could take a while. They decided to treat me with 3 days of IVIG, treatment of choice for CIDP and send me to rehab. I will be here for 2 weeks minimum.
Overall It
has been a very emotional week for me. Each flare brings a
certain amount of uncertainty, but I’ve had enough of them that I
know I usually get some amount of function back. I know how to
maintain my independence at those lowest levels of functioning. This
level of functioning is so far below though that I don’t know how
to perform even the most basic ADLs this way. I’ve really
tried not to focus on that too much knowing that rehab can accomplish
amazing things but it is hard when someone is having to wipe my butt
after I have a bowel movement. I sometimes lay there trying to keep
the tears out of my eyes while they are cleaning me up. I think
that is what has been the hardest for me. The staff has all be very
compassionate as they help me with all of it like rolling over in bed
and repositioning, something most 6 month babies can do. They also
don’t treat me like an invalid. They allow me to do the few things
I can do then quietly help me with the rest. The real therapy
starts tomorrow. I’ll have a PT and OT evaluation. I will write
more after that.
Here is the link to the CIDP info. Remember, I have not been diagnosed with this. This is just in the differential. Also, I don't know if this is in addition to my MS or if it would replace my MS diagnosis. https://rarediseases.info.nih.gov/diseases/6102/chronic-inflammatory-demyelinating-polyneuropathy
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