another update

I'm really tired today, so please forgive me if this isn't clear or inclusive. Things are going really well today and I'm making some great improvements. I had my second visit the Physical Therapist today. She's really great. During the first visit she had me up trying to walk and switched me to a walker versus my canes. I still couldn't lift my feet up due to the numbness and sudden weakness. But today, I showed a lot of improvement. The numbness on the left is from ankle down now and on the right, I can use my knee again. I'm lifting my feet a bit when walking and am strong enough to start using forearm crutches. My pain level is also improving. I'm still doing IV pain medicine, but so far today I've only had one dose and am trying to tough it out until after dinner for the second one. I noticed that it was causing nausea, so it's best to take it after I eat instead of before. Oh, it also makes me incredibly loopy, so I try to take it when no one is going to talk to me (like at night).

Now the bad news. I started the steroids today and am having the same reaction. It's not as bad as before, but there is noticeable discomfort in my stomach. I also completely forgot about the metallic taste it leaves in my mouth and didn't get any mints or candies. I think I can tough it out, but it's kind of disgusting. Despite the adverse reaction, I'm going to stick to the treatment plan and hopefully I'll see more improvement in my body over the next few days.

I'm really hoping to feel better by Wednesday so I can avoid doing the inpatient rehab program they are trying to set me up for. I know it's a good thing and can greatly improve my abilities, but our wedding is less than 3 weeks away and I can't see myself being in a hospital until the last few days before the ceremony. Everyone keeps saying that I should just rest and do the program, but I'm really hands on and want to go to all the meetings and prepare the favors. We'll see what happens.

OK and the neuro, Dr. C just came in to check on me. She doesn't want me to take the bladder pills anymore because they put me at higher risk for bladder infections. Which, although they initially thought I had, I have actually never had a bladder infection. Fuck. This makes me really sad. The blue pills were my last hope before diapers or Poise pads and now I'm just being told to take my chances. I'm not happy about this at all. She also doesn't know when I might get discharged or sent to the rehab facility or what. She just said it could happen tomorrow or Thursday or never. I guess I need to be patient, go with the flow, and try to rest and heal.

A little more info

Nilaja brought my computer to me and the hospital has free internet, so I figured I would take this opportunity to update on how I'm doing.

Honestly, I'm not doing so good. While we've managed to get the pain under control, I still have a lot of numbness and can't walk. So, they set up a catheter so I don't have to worry about making it to the bathroom. The doc sent some of the urine to the lab and discovered that I have a bladder infection. So, I'm doing IV antibiotics to knock that out. Meanwhile, I was sent to get new MRIs (this time including my spinal cord) and the on call neuro Dr. C, who I was planning to see for a second opinion, found a legion on my spinal cord. It doesn't mean anything new, but we can add that to the list. Dr. C believes the bladder infection could have sparked all the other stuff happening in my body and wants to treat me aggressively. After three days of antibiotics, they are going to do the steroid infusion. This time, they are going to load me up with medicine before, during, and after to ward off any adverse reaction. They have started me on Protonix and I'm already feeling some relief in my gut. Speaking of which, I'm having an impossible time with food today. Every bite or sip makes me nauseated and I've vomited twice since getting here. I'm hoping this goes away soon. Oh, and they're giving me Ambien to sleep tonight and I've got my fingers crossed that it will work.

I don't know how long I'm going to be here, but it doesn't sound like an overnight stay and morning release. I'm trying to be patient and optimistic, but I don't like hospitals and would rather be at home working on wedding favors. But I am glad to be getting competent and aggressive treatment. I'm starting to feel more secure about having a good wedding day and that's all that matters to me right now.

I'm gonna try to get some sleep now. I'll keep you updated on my adventures in hospital land. And if you're local and want to visit, I'm at Alta Bates in Berkeley. Email me for more details.

Not feeling well

Hi folks,

This is Nilaja. Chris asked me sign on and let you all know that she's in the hospital. Long story short, I took her to the emergency around 2:30 this morning (saturday 6/27/09) due to an increasing in leg numbness and overall pain. The doctors decided it was a good idea if she stay in the hospital for at least a night. So right now she's in the hospital being pumped full of pain killers and I'm heading back there for the evening.

Nilaja

Bad Day For My Body

After another sleepless night, I was not looking forward to running my errands today. I knew that even on a good day those errands would take a lot out of me, so I feared what might happen when my low tank was ran dry. Now I know. Basically, both legs are numb (with mild paralysis- if that's possible), tingling, heavy, and on fire, with occasional sharp pains traveling into my lower back. I am trying to stay mobile, but the numb feet make standing difficult and I'm relying on two canes to drag myself around. It's not pretty.

It all started after doing the blood test. For some reason when they draw blood my body revolts. I was waiting for the bus to take me to Berkeley and the numbness started. It was only in my toes, but I was freaking out. The last time I had a blood test, I had a really strange reaction where my legs were on fire and then I got hypersensitive everywhere. That was terrifying and I didn't want that to happen while I was alone or on the bus.

I made it safely to Berkeley, but I knew I was in trouble by the time I reached my second destination, my old office to pick up my supplements. It's been two months since I've been back there, but it still felt like home. I'm so glad it was my second stop because it gave me a minute to recharge. I was so tired and my pain level was rising pretty quickly. But, seeing the folks in that office (who are truly like family) lifted my spirits. I even got some help with my shoulder pain. I didn't stay long because I wanted to get to Nilaja so I could eat and close my eyes for a bit.

Once I got to her job, I was in bad shape. Nilaja helped me to her car and fed me some lunch, but I think I was already at the point of no return. Shortly after she returned to her office (I'd planned to wait in the car for the last bit of her work day and ride home with her), both legs went numb and I couldn't move them. I've had the numbness before, but never with any type of paralysis. I texted Nilaja who came out to check on me and she proceeded to poke and prod my legs until we were both sufficiently worried. We agreed that the best thing to do was remain calm and give my legs some time to recover.

Unfortunately, they haven't recovered. Getting from the car up to our apartment was by far the hardest thing I've ever done. I couldn't get my shoes on, so I literally dragged my new white socks across the garage floor. Since then, I've been in bed.

I'm honestly really afraid. I feel like I'm getting hit with everything right now and I don't know how much more I can handle. I'm so tired and in so much pain. I hope that I can walk tomorrow.

again

I don't want to bore you with more late night ramblings about how I can't sleep, but when I'm sitting here in the dark hoping to get just a few decent hours, I can't help but come here. This weird sleep pattern is kicking my butt. I am not getting the quality or quantity of sleep that I need and my body reflects that. Today was a pain and fatigue day. Every move I made sent bolts of pain shooting through my body and to make matters worse, I'm pretty sure I pinched a nerve or pulled a muscle in my shoulder. So sad.

I was able to rest for most of the day today and since I've been keeping up with the cleaning and cooking, there was no anxiety about the condition of our place. I was hoping the rest and having a mellow day would encourage some sleep tonight, but no dice. And what's worse, I can't rest tomorrow because I have a bunch of errands to run (go pick up my vitamins, finally do the blood test, go to the bank). I guess there's always Friday.

A new symptom and an older one getting worse

My newest symptom (or at least the symptom that I've recently identified as probably MS-related) is choking. Lately, I've been having instances where I go to swallow, the food starts to go into my throat, but I don't swallow. I choke. Then I start to panic, my eyes water, and I gag/cough for several seconds, before self-preservation kicks in and I'm able to calm down, close my eyes, and tell myself to swallow. And then it's over.

This has happened at least twice a day for the last 4 or 5 days and each time the situation is different. I'm choking with food, without food, while standing, while sitting, while watching tv, while cleaning, and even while singing. I've been choking so much that my throat is sore. I don't know how to make this stop or happen less frequently, but I am on alert.

I'm mostly optimistic about dealing with this because I can usually get my throat clear by just concentrating and telling myself to swallow. It seems so simple, but it's like when I start to swallow my brain forgets what it's doing midway and I just need to remind it. It's pretty scary, but I'm dealing with it. I also know how to do the Heimlich maneuver on myself, just in case that ever becomes necessary (and since the falls started I've been carrying my phone around the apartment with me just in case).

The symptom currently getting worse is numbness in my legs. Since last week I've been having these episodes where, on just one side, my baby toe will go numb. That's fairly normal, but over the next 30-45 minutes, my other toes will go numb and then the numbness will spread up my leg to my hip. I will remain numb from toe to hip for about 2 hours and then it disappears. It's really strange and painful. When my leg is numb, it feels heavy and achy. If I touch it or try to put weight on it, sharp burning pains shoot from the point of contact throughout my leg. I have no idea why this is happening or how to make it ease up. Luckily it only happens on one side at a time and the most I get an attack like this once a day.

Oh, and regarding my eye, I haven't noticed any improvements yet. I think the darkness has lightened a bit, but it's hard to tell. It is still painful to move the eye.

This is getting really old.

I am so over this insomnia. I can't begin to tell you how frustrating this is. In the past week I have had two good nights of sleep (and didn't need Ativan at all) and every other night has been a struggle for sleep. I take a pill or two around 9 pm and then settle onto the bed to wind down. I watch a little tv for a bit and then it's lights out. Honestly, I feel sleepy until I turn my light off. It's as if my body thinks the darkness means time to get up and go. I know I'm backwards about a lot of things, but this is just too much for me. From the point that we turn the lights off, I am awake until 1 or 2 in the morning. So, when my alarm goes off at 4:30 for us to exercise, there's no way I can get up. I lay there until 7 when Nilaja leaves for work, and then I'm up for the day.

And you know, I would accept the insomnia if I could sleep all day long. I can't. I started off by not letting myself sleep all day because I thought that's why I can't sleep at night. But now I don't have to force myself to stay awake, it just happens. Remember how good I felt after taking those naps? Now I can't take a nap to save my life (this will be literal pretty soon). Lately, I've been trying to do chores or crafts, with the hope that I'll tire myself out and be able to sleep through the night. Obviously, that isn't happening.

So, now I'm feeling desperate. I need something to help me sleep ASAP. At this point I don't care if I sleep all day long, I just need to do something other than toss and turn for hours or sit on the couch watching Discovery Health until I start to dose off. And the worst part of it all is that I feel so tired and worn out. I'm sleepy and yawning, but when I go to lay down, I wake up. Why is this happening to me?