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.
Showing posts with label walking. Show all posts
Showing posts with label walking. Show all posts
Wednesday, December 5, 2018
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.
Thursday, July 26, 2018
I walked today
Today was a big milestone. I walked 5 feet today both in the pool and in the therapy gym. In the pool, I could only take tiny steps. The water helped me move my feet a lot. Later in the day, my therapist had me try to walk in the gym between the parallel bars and at first I couldn't move my feet because I had too much friction on my feet with my shoes on. Then she took a piece of paper and wrapped it around my toes and taped it to my shoes. That allowed my feet to easily slide across the floor with very little friction. After that, I walked about 5 feet holding onto the parallel bars.
On Tuesday, my rehab doctor, Dr. Latorre, met with my PT and my PT and my nurse for that day to discuss my progress and plan for discharge. He set my tentative discharge date for August 3rd. This hospitalization will end up being a total of 3 weeks, 1 week in the main hospital and 2 weeks in the rehab hospital. Stan was really hoping that I wouldn't have to be in rehab as long since I was just in rehab only 3 months ago. I learned a lot of skills that I would need to use while I was weak. However, I was too weak to use many of those skills to start with. I couldn't sit up when I 1st got to rehab so I couldn't even transfer with the slide board. I had to be moved with the lift. Now I can transfer from the bed to chair and to the toilet by doing a stand and pivot. I put my legs in the position I need the to be, stand up and turn my body. My legs don't move at all during this type of transfer. My arms do most of the work. It's basically just hopping from the bed to the chair using my arms for support. Going from my chair to the toilet, I use the grab bars next to the toilet to hoist myself up and I swing my hips over. It's getting easier to move this way each day.
Tomorrow Stan and I will celebrate our 27th wedding anniversary. I am so grateful to have such a wonderful man for my husband. He has been my rock through the last 11 years as I have battled MS and now whatever this latest neurological illness is. Our marriage is stronger now than it ever has been. I can honestly say that we have never had a fight. We have disagreed on things and had discussions about them, but we have never had a fight about them. Dr. Latorre is giving me a pass tomorrow so I can leave the hospital for a little while so we can actually celebrate. We are going to go out to eat somewhere, probably Joe's Crab Shack, then we haven't figured out what we are going to go do after that. We may go home for a little while before we have to come back to the hospital. We have to be back here before midnight. We are going to leave as soon as my therapy is finished tomorrow. I'm hoping they have me scheduled earlier in the day rather than going late into the afternoon.
On Tuesday, my rehab doctor, Dr. Latorre, met with my PT and my PT and my nurse for that day to discuss my progress and plan for discharge. He set my tentative discharge date for August 3rd. This hospitalization will end up being a total of 3 weeks, 1 week in the main hospital and 2 weeks in the rehab hospital. Stan was really hoping that I wouldn't have to be in rehab as long since I was just in rehab only 3 months ago. I learned a lot of skills that I would need to use while I was weak. However, I was too weak to use many of those skills to start with. I couldn't sit up when I 1st got to rehab so I couldn't even transfer with the slide board. I had to be moved with the lift. Now I can transfer from the bed to chair and to the toilet by doing a stand and pivot. I put my legs in the position I need the to be, stand up and turn my body. My legs don't move at all during this type of transfer. My arms do most of the work. It's basically just hopping from the bed to the chair using my arms for support. Going from my chair to the toilet, I use the grab bars next to the toilet to hoist myself up and I swing my hips over. It's getting easier to move this way each day.
Tomorrow Stan and I will celebrate our 27th wedding anniversary. I am so grateful to have such a wonderful man for my husband. He has been my rock through the last 11 years as I have battled MS and now whatever this latest neurological illness is. Our marriage is stronger now than it ever has been. I can honestly say that we have never had a fight. We have disagreed on things and had discussions about them, but we have never had a fight about them. Dr. Latorre is giving me a pass tomorrow so I can leave the hospital for a little while so we can actually celebrate. We are going to go out to eat somewhere, probably Joe's Crab Shack, then we haven't figured out what we are going to go do after that. We may go home for a little while before we have to come back to the hospital. We have to be back here before midnight. We are going to leave as soon as my therapy is finished tomorrow. I'm hoping they have me scheduled earlier in the day rather than going late into the afternoon.
Friday, May 25, 2018
What else can go wrong?
Actually, I learned a long time ago not to ask that question because the answer is LOTS! I mentioned in my last post that I have started walking more now. Since I can walk some, I haven't been using my wheelchair in the kitchen when I prepare my meals since cooking from a wheelchair is a bit difficult. Since I started standing to prepare my meals, I started having trouble with dizziness after I stand for a few minutes, but only in the morning. I thought it was my blood sugar getting too low since it was only happening in the morning. I have a glucometer so I checked my blood sugar during these dizzy spells and it was in the 80s or 90s. Then I checked my BP and BINGO. I couldn't even get it to register on my machine. After the dizziness started to resolve, my BP was only 95/68. That is not very high. I wasn't getting blood to my brain. That is why I was dizzy. I tried several things to see if it would get better but finally just went to the doctor. She thinks maybe the paralysis episode I had may have messed up my autonomic nervous system. Your autonomic nervous system controls all of those things you don't have to think about such as breathing, heart rate, BP, swallowing, sweating. She did a bunch of blood work, which was all normal, even my CBC which had been really abnormal in the hospital. Now she is referring me to the cardiologist for a work up and wants me to notify Dr. Westgate. I'm waiting for the cardiologist to get back with me because her 1st available appointment was the end of July for existing patients. I would just really like my body to behave itself and work properly for once. I have been doing my best to give it only top notch nutrition and to exercise regularly at my ability level. The least it could do it stop attacking itself.
Friday, April 13, 2018
My ICU visit
I typed this up a few days ago but it would not publish to save my life so I just saved it but no such luck there either, so here it goes again, attempt number 2 to share with you my ICU experience. It's one I hope never to have to experience ever again.
On Sunday, while still in rehab, I woke up with my legs reparalyzed. I let my nurse know and went back to sleep. a few hours later, right during shift change of course, I woke up again and could not move from the waste down. This was serious business and to this nurses brain meant lots of bad stuff was about to happen. I tied not to freak out but insisted my day nurse call the doctor. He didn't hesitate to order an mri of my back and consulted with the attendings at the main hospital. The rest of the day continued without incident until about 5pm when my hands started to feel weak. I couldn't hold my phone or control my wheelchair. This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement. By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital. I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands. I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.
I received 2 blessings that day. The first one was given to me by my husband when he got to the rehab center shortly after the paralysis started to return. I love Stan's blessings. He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life. Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time. I needed to turn to my Heavenly Father in pray and turn to the scriptures. I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me. My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving. I will be ther 1st to admit that I am not very good about letting others help me. I want to do things myself, even after 10 years of dealing with this disease. I have been really working on that though. After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it. Bishop's blessing told me I would be healed in the Lord's time and I needed to put the work into getting better but the healing process had already started. I needed to stay faithful, which I did all week. While there was reassurance in these blessings, they didn't keep me from being totally scared. I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass. I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ. Each time I go through one of these medical trials, I learn a little more about the atonement of Jesus Christ. I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.
They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator. They did a test every 2 hours to see if my diaphragm was getting weak. By the 4th or 5th test, I was at the bottom limit for diaphragm involvement. I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal. I got a little bit out of breath when I talked and I was sleepy a lot. I did best when I slept. My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.
Monday afternoon I had to go get a spinal tap to test for a bunch of things. I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old. They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true. My body was completely flaccid. Interestingly, even my neck, which for all intense and purposes doesn't seem effected because I can still move it, is no longer tight and spastic like it usually is. That part is really nice actually. I would like that fact that I have no spasticity if I could actually walk and move my body around. "Body, you did not need to go from one extreme to the other, you really didn't." I don't know why I just bothered trying to tell my body that little bit of advice. I don't know about your body, but mine never listens to me. I was never a rebellious teenager, but I have a rebellious 40+ body. I wish I would have been a rebellious teenager if this is the trade off 😁
Ok, now that we took that little detour, back on track. After I got back to the ICU from the spinal tap, they started another round of IVIG. It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the next as far as total dose. Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days. The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month. My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit. I slowly regained use of my hands, arms and torso as the night progressed. Nothing from my legs or hips though. I'll take what I can get though. I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger. It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me. I know the blessing told me that I would regain use of my body again, but when you are laying in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.
My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks. It's really hard to write) I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date. Those kinds of things really discourage me and they are defeatist thinking.
I had my PT and OT evaluations today. I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back quickly. Their evaluation on top of the blessings I have received make me confident that I will walk again. I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.
I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything. I hope everyone has a great weekend
On Sunday, while still in rehab, I woke up with my legs reparalyzed. I let my nurse know and went back to sleep. a few hours later, right during shift change of course, I woke up again and could not move from the waste down. This was serious business and to this nurses brain meant lots of bad stuff was about to happen. I tied not to freak out but insisted my day nurse call the doctor. He didn't hesitate to order an mri of my back and consulted with the attendings at the main hospital. The rest of the day continued without incident until about 5pm when my hands started to feel weak. I couldn't hold my phone or control my wheelchair. This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement. By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital. I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands. I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.
I received 2 blessings that day. The first one was given to me by my husband when he got to the rehab center shortly after the paralysis started to return. I love Stan's blessings. He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life. Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time. I needed to turn to my Heavenly Father in pray and turn to the scriptures. I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me. My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving. I will be ther 1st to admit that I am not very good about letting others help me. I want to do things myself, even after 10 years of dealing with this disease. I have been really working on that though. After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it. Bishop's blessing told me I would be healed in the Lord's time and I needed to put the work into getting better but the healing process had already started. I needed to stay faithful, which I did all week. While there was reassurance in these blessings, they didn't keep me from being totally scared. I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass. I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ. Each time I go through one of these medical trials, I learn a little more about the atonement of Jesus Christ. I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.
They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator. They did a test every 2 hours to see if my diaphragm was getting weak. By the 4th or 5th test, I was at the bottom limit for diaphragm involvement. I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal. I got a little bit out of breath when I talked and I was sleepy a lot. I did best when I slept. My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.
Monday afternoon I had to go get a spinal tap to test for a bunch of things. I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old. They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true. My body was completely flaccid. Interestingly, even my neck, which for all intense and purposes doesn't seem effected because I can still move it, is no longer tight and spastic like it usually is. That part is really nice actually. I would like that fact that I have no spasticity if I could actually walk and move my body around. "Body, you did not need to go from one extreme to the other, you really didn't." I don't know why I just bothered trying to tell my body that little bit of advice. I don't know about your body, but mine never listens to me. I was never a rebellious teenager, but I have a rebellious 40+ body. I wish I would have been a rebellious teenager if this is the trade off 😁
Ok, now that we took that little detour, back on track. After I got back to the ICU from the spinal tap, they started another round of IVIG. It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the next as far as total dose. Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days. The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month. My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit. I slowly regained use of my hands, arms and torso as the night progressed. Nothing from my legs or hips though. I'll take what I can get though. I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger. It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me. I know the blessing told me that I would regain use of my body again, but when you are laying in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.
My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks. It's really hard to write) I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date. Those kinds of things really discourage me and they are defeatist thinking.
I had my PT and OT evaluations today. I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back quickly. Their evaluation on top of the blessings I have received make me confident that I will walk again. I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.
I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything. I hope everyone has a great weekend
Friday, March 23, 2012
I am still alive
I am really not doing very well at this blogging stuff. It has been almost a year since my last post. I am going to try for more frequent, but short post. I wait too long to update, then feel overwhelmed because I have so much to post. No more. Life is good now though. Still in a wheel chair, but walking some. Hope to be able to walk around the house soon. I'm working hard at it even though I'm a little tired of going to PT twice a week.
We just thought we were busy last year. This year, busy took on a whole new meaning. Stan was called to be bishop of the Austin ward. I don't see him much on Sunday, or Tuesday and Wednesday for that matter. We have already received many blessings from his calling though and I know there are many more to come. Even though he doesn't think so, he truly is a man of God and he is the right man for the calling.
Our quilting club at church, Sisters in Stitches, is starting a new project. It is a block of the month project that is going to be a Book of Mormon/Woman of Faith quilt. I got to pick the first block. I chose the Chimney and Cornerstone block because the Book of Mormon is the cornerstone of our religion. I have a few corrections I have to make to the file, but then I want to post it on my blog so if you want to make a Book of Mormon quilt too, you can. Mandy, one of the other members, has made a blog just for the quilt, so I will also put a link to her blog.
I gave up on selling bags at Etsy. I couldn't keep up with bags for the site and still sew the things I wanted too. I would rather sew what I want to. I do still do custom orders, so that is still fun.
Ok, post one down. Not too bad. I'll try to not wait 10 months to post again.
We just thought we were busy last year. This year, busy took on a whole new meaning. Stan was called to be bishop of the Austin ward. I don't see him much on Sunday, or Tuesday and Wednesday for that matter. We have already received many blessings from his calling though and I know there are many more to come. Even though he doesn't think so, he truly is a man of God and he is the right man for the calling.
Our quilting club at church, Sisters in Stitches, is starting a new project. It is a block of the month project that is going to be a Book of Mormon/Woman of Faith quilt. I got to pick the first block. I chose the Chimney and Cornerstone block because the Book of Mormon is the cornerstone of our religion. I have a few corrections I have to make to the file, but then I want to post it on my blog so if you want to make a Book of Mormon quilt too, you can. Mandy, one of the other members, has made a blog just for the quilt, so I will also put a link to her blog.
I gave up on selling bags at Etsy. I couldn't keep up with bags for the site and still sew the things I wanted too. I would rather sew what I want to. I do still do custom orders, so that is still fun.
Ok, post one down. Not too bad. I'll try to not wait 10 months to post again.
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