Home from the hospital!!

Don't look too closely at this picture. Because, um, yeah, I've looked better. My kids are cute though!


Ok, this is going to be an incredibly self-obsessed post. I'm only going to talk about me, so if that is going to annoy you, you've been warned! I am going to write this not just for those of you who want to know, but also for my own records. I've been trying to create a timeline of the appearance of various M.S. symptoms, and I've found that going through my archives of past emails I've sent is the most accurate record of what's beeng going on with my illness. So anyway, sorry in advance for the boring laundry list of medical stuff.



Well after 10 long days in the hospital, I am HOME!!! The hospital stay was pretty good. I went down to MRI the first night I was there, and that was pretty grueling. Three hours in the MRI machine isn't too fun. In the past I've been able to kind of zone out in the MRI and it hasn't been too bad. But this time I had to do the brain and spinal cord, with and without contrast dye, all back to back. So it was a VERY long time. The worst of it was the spinal MRI. That one takes the longest. They scan your whole spinal cord and then pull you out and inject this dye in your vein and then do the whole thing again. But you can't move at all! You have to remain completely still for the whole thing. They strap your head in this sort of vice thingy, and the MRI machine is this little tube so you can't really move anyway, even if you tried. Unfortunately, I got my head on a bad pressure point and not even all the way through the first half of the spinal scan, the back of my head began to really hurt. And then my sinuses didn't like something in that room and I couldn't breathe out of one side of my nose with absolutely drives me INSANE. And I couldn't move at all! The pain from my head and the annoyance of not being able to breathe right were bad, but the worst of it was knowing there was absolutely nothing I could do about either one, and I had no idea how long I had left to lie there. There's no clock or anything to be able to count down, and you really do lose track of reality while you are in the machine. Toward the end I was seriously getting close to a panic attack, wondering if I should just call out and tell the MRI tech I couldn't take it anymore, or what! But I made it, she pulled me out, moved me over to the brain coil, and then I was able to get my head in a more comfortable position, I could breathe slightly better, and I knew it would be over soon. I felt like such a baby because it wasn't as if I were in excruciating pain or anything even close to it. I was just getting panicked and didn't think I could do it!! The MRI tech was really nice, though. It was actually her second to the last day working at the hospital, and her last night on call. She came up to see me the next evening to say goodbye, and I thought that was really sweet. I don't think she went to say goodbye to all her patients!

So anyway, for the first 5 days I was up on the acute care floor, I had my own room and lots of time to do nothing. I read through the conference edition of the Ensign, read "The Road to Serfdom," watched some movies, read through the last couple of months of Time Magazine, slept, and did a couple of sessions with Physical Therapy. On Friday night they moved me down to the inpatient rehab clinic and that wasn't quite so pleasant. I had to share a room with a woman who had broken her hip. The first couple of nights she was in a lot of pain and woke up frequently groaning and moaning. She also was not as pleasant to some of the nurses as she could have been, and spent most of her time when the doctor came to see her, badmouthing her other doctor that did her first hip replacement (I guess her first hip replacement had become lose, and she was getting ready to come in for a revision when she fell and broke her OTHER hip!). It is not a good idea to badmouth a doctor to another doctor! She was also had long and frequent telephone conversations with lots of people where she felt the need to complain about the nurses, doctors, physical therapists, etc., etc., etc. I was feeling pretty sorry for myself for the first couple of days. Then I got really disgusted with myself and realized that I was being incredibly self-centered. I realized that I was so lucky compared to most of the other patients there, because I was not in any pain. Many patients were there because of injury or surgery, and their rehab was so much more difficult than mine. How can I begrudge this woman her right to complain and have loud phone conversations when she was certainly in pain the whole time. Anyway, she went home on Tuesday so my last three days were quiet and peaceful. In rehab they have you do several sessions with Occupational Therapy and Physical Therapy each day. OT, for those who don't know, is sort of like "life skills." They teach you how to do things around the house, laundry, dishes, making beds, etc. They have a couple of rooms set up like a house, with a bathroom area, kitchen, laundry, bed, closet, etc. Physical Therapy is just physical stuff, exercises and stretching and stuff. It was great, day by day, to see the clock turn backwards and be able to regain skills I didn't have the day before.

I was worried the transition home would be hard. It was the last time I was hospitalized. But I'm doing fine! I had a little breakdown at the hospital the night before I left, not really about anything in particular, just generalized anxiety and worry about what was going to happen. When I was in the hospital, I felt like I was "doing" something (even though I was doing nothing!), and the idea of going home just to wait for symptoms to come back was pretty depressing. But yesterday afternoon and today have been just fine. I'm so glad to be with my boys again, the weather has been gorgeous, and I had some good conversations with the contact people at a couple of the Halt-MS study centers.
So I feel very good, not least because I am doing so much better physically than I was when I left!



OK, so here's where I'm going to document symptoms and stuff, so ignore if you want. This is just for my records.
I had 5 days of Solumedrol treatment (the IV steroids) in the hospital and I'm on a tapering dose of Prednisone for the next month to try to extend the benefit of this round of steroids as long as possible. As you all know, I just LOOOOOVE steroids, so I'm SUPER excited to get to be on them for the next month!! (Insert dripping sarcasm). But I'll take it if it gives me a longer time feeling good!



I'm also on 20mg Baclofen 3 times a day. I started taking the Baclofen at the lower dose, 10mg 3x/day a month ago, but it really wasn't controlling my spasticity. The 20mg 3x/day seems to be working pretty well. I can feel the spasticity creep up when it gets close to my next dose, but not to any degree like it was before. At first the Baclofen was giving me headaches and making me feel nauseated, but I think I've mostly adjusted and except for a few headaches here and there, it's not too bad. This is a pretty intense drug, though, one of the big warnings on the label is NOT to discontinue use suddenly because doing so can cause hallucinations and seizures. Nice, huh? It works, though.

It is really amazing the difference 10 days makes. I am up walking around, that's the biggest thing. I don't think I need the walker I was using in the hospital (also it is the ugliest thing imaginable, no way to glam that thing up!), so my cane and I are getting to be friends again. I am using the wheelchair to wheel myself longer distances, not really because I need it, but just to try to conserve energy (this was a big thing I was working on with the occupational therapists in the hospital). But it is amazing to be able to just stand up when I want to, and walk when I need to!



In the hospital, I started seeing results from the steroids pretty quick, after just a couple of days. It was really exciting to wake up each day and discover more that I could do than I could do the day before, instead of the other way around! One of the biggest reliefs to me was getting my foot-flexing muscles back. Man, there were so many times when I just wanted desperately to be able to flex my feet! I made Ben come over and flex them for me sometimes, but that inability to move my feet was extremely disconcerting, especially at night. And then, getting my hip flexor muscles back was huge! That's a pretty important muscle for walking, as it allows you to lift your foot off the ground. I had been "walking" by sort of slinging my hips so that my leg would swing around, or else just dragging my foot along the floor. This is a very exhausting and dangerous way of walking! But probably the biggest help to me was getting my abdominal muscles back. I never realized that you use your abdominal muscles for nearly everything. Everything from sitting up, turning over in bed, raising your body from, for example, a chest-to-knees position, everything. I'm also feeling much better in more subtle ways. For example, I have lots of trouble controlling my blood pressure when my M.S. is acting up. I've noticed this periodically during bad times of MS I will have trouble blacking out whenever I stand up, or even sit up too fast. In the hospital, it was interesting to see how that stabilized over the days I was there. The first few days I was there, my blood pressure was all over the place. Mostly very low (85/50), but occasionally randomly really high (120/80, which is very high for me). As the steroids kicked in, I stabilized to where I normally am (110/68), and stayed almost EXACTLY there, only varying by a couple points at the most. I think just the fact of having stabilized blood pressure has had a huge impact on my overall feeling good. My breathing has gotten much better, too. I had one final bad breathing episode on Sunday night, but nothing since then. The deal with my breathing was two fold. First, I had a sensation of a belt tightening around my ribs, compressing my ribs and making it difficult to inhale. This was the strangest sensation, because for the life of me, it felt JUST like a belt really was around my ribs! I'd have to feel to make sure there wasn't anything there! Not just the tightness, but on my skin I really felt the sensation of something wrapped tightly around me. It is really bizarre to have your body telling you one thing, and your eyes telling you another. But the other thing with my breathing was being unable to control my diaphragm very well. I've noticed this over the past couple of months, mostly at church when trying to sing. Being able to sing well depends entirely on being able to control your diaphragm (well, ok, being able to match pitch is important too!). I do not have correct vibrato technique-- I know you're supposed to actually use your vocal cords to produce the vibrato, but I never learned how to do that, so I do it using my diaphragm. Well, over the past couple of months, I became unable to do produce vibrato at all. And I just couldn't draw enough breath to be able to sing through more than a measure or two at most. Reading scriptures to my boys in the morning was laughable, because I'd have to stop and take another breath every 3 or 4 words. Anyway, last Sunday I got a "pass" to be able to come home for a couple of hours. We watched the First Presidency's Christmas broadcast, and I discovered I could sing again!! It was great! I've been able to sleep much better as well, not waking up feeling like I was forgetting or unable to breathe.

Other random things that have also improved my quality of life: ITCHING has stopped. Another weird MS symptom is generalized, random itching. Do you ever get an itch, and then try to scratch, but find that when you scratch, it's not really that place that itches? Does that make any sense? It really drives me crazy!! But that's gone away since the steroids. Bladder spasticity is much better. Ok, I know this is way TMI, but I seriously had to get up to the bathroom EVERY TWO HOURS!! My bladder was so spastic, it couldn't expand hardly at all, so I'd have to pee all the time. I felt like an old man. It's also really hard to sleep when you have to get up every two hours, and ESPECIALLY when it take you 10 minutes just to get yourself up out of bed, into the wheelchair, into the bathroom, and then back and into bed again. So the combination of not having to use the wheelchair just to go across the room to the bathroom, and then not having to get up every 2 hours, has been so, so great.



In the week before I went in to the hospital, I was struggling with feelings of claustrophobia. I never thought about claustrophobia in terms of paralysis, but it was awful. I couldn't move my legs, and I would start to feel trapped, even though I wasn't physically confined by anything. This was especially troubling at night. That added with my issues breathing, and I came close to having full-blown panic attacks. I asked my doctor about the claustrophobia thing, and he said the feeling of claustrophobia is more related to feeling powerless and out of control, rather than a physical reaction to being confined. That made sense to me. I wonder of para/quadraplegics have that problem? I guess you'd get used to it after a while.



So that's the run down on what's going on with me symptomatically. I feel like I'm back where I was about 4 weeks ago in terms of my ability to walk. I feel ok walking short distances without my cane (like, from my desk to the kitchen table, etc.), but it's definitely still hard. My legs still feel very weak and stiff. I know some of that is muscle atrophy after not being able to walk for a few weeks, and that should come back with use and physical therapy. But some is probably also due to nerve damage. It will be interesting to see how much more improvement I see over the next week or so. I'll be doing physical and occupational therapy 3 times a week for the next three weeks to maximize the improvement from the steroids. I have a little anxiety over this, because I am going to be finding out where my new "baseline" is, and I'll have to reconcile myself to whatever remains as likely being permanent. But honestly, it's ok. I feel like I'd be more than ok for the rest of my life if I can just stay where I am right now!!

Ok, I better go now since I'm ignoring my kids and they are doing experiments and that is never a good sign.
I'm just so glad to be home!