I finally got approved for rehab yesterday. So now that we have insurance on board, the rehab hospital didn't have any beds. I was so frustrated. When you are inpatient in the regular hospital, you get 30 minutes of PT every other day. When I'm in the ICU, that is about all I can tolerate. Now that I am on the floor, I need so much more. When I get to rehab, I'll get 3 hours a day, more if I go to the pool. I need all of that if I am going to get back to walking. They told me they should have a bed for me this morning.
I am doing better staying on my diet this time. It is impossible to stay 100% on a ketogenic diet in the hospital. I can't get the hospital to send me enough vegetables, and the proper vegetables to meet that requirement. Plus, so much of their menu is centered about pasta and bread. I'm trying not to have bread type products more than once a day. I will be excited if I can maintain through this hospitalization. When I get home, I am hoping that I have not gained any weight, then I can get back on track. I had 8 pounds to lose when I entered the hospital last week and I am determined not to let this hospitalization set me back too far. My goal was to start transitioning into maintenance after January 1st and I still want to do that if at all possible. Being so close to maintenance, this will actually give me a good chance to test the waters. I'm much more ready for the challenge of that than I was during the summer. I just stress ate a lot during my summer hospitalization and ended up gaining weight. Of coarse the fact that I haven't gotten out of bed in 9 days doesn't help my weight at all.
Wednesday, November 28, 2018
Sunday, November 25, 2018
Devotional from a prophet of God
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.
Stan and I at the devotional, 11/18/18
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