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.
Monday, June 29, 2009
Saturday, June 27, 2009
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.
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
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
Thursday, June 25, 2009
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.
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.
Wednesday, June 24, 2009
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.
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.
Tuesday, June 23, 2009
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 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.
Monday, June 22, 2009
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?
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?
Thursday, June 18, 2009
H. pylori
I talked to Dr. F on Tuesday evening and he believes the steroids activated some Heliobacter pylori that was living in my stomach. He said it would explain the pain and it makes sense that antacids provide temporary relief but the pain returns. They can do a blood test to check for it, so I'll do that and follow-up with my primary care doctor. If I do have H. pylori, then I'll do a course of antibiotics and be done with it. If it isn't, I don't know the next step. Hopefully, we get the results back quickly and my stomach heals. I'm not excited about dealing with my PCP, but I'm willing to do whatever it takes to get my stomach healthy again.
Tuesday, June 16, 2009
Yesterday was such a good day! Today is not.
Yesterday, I was happy. Actually, I've been happy for the past few days. Things have just been going so well, despite having no improvement in my vision, still having stomach discomfort, and fatigue.
Friday night was really great, I had a lot of fun with my friends and I'm so glad I didn't let the fatigue ruin my evening. I felt so good when I got home that I decided not to pre-medicate before my injection. It was the second time I tried that and once again I didn't have any flu-like symptoms. I'm starting to really like Betaseron.
Saturday and Sunday were spent with Nilaja. We didn't do much, but managed to stay busy and have a really good time. I was able to make a nice dinner on Saturday and on Sunday I baked a cake. It was a good weekend. Oh, I also decided not to take the pottery class and used the money I would have spent for that to buy more art supplies. I still need new brushes, but I got some basic acrylic paint, canvas, and a cheap tabletop easel (Michael's was having a fantastic sale).
The weekend was so mellow and relaxing that by Monday morning I was energized and ready to start the week. I got up early, cleaned our apartment, showered, and ate breakfast by 10:30 am. Then I turned on my favorite music, sat down at the dining room table, and painted. My new favorite hobby is painting. It is so relaxing and I was able to drop my need for perfection and just paint. I was so happy. When I was painting, I didn't care about the pain, numbness, or even my vision. All my attention and energy went to creating something that I would be proud to hang on my wall. (I'll see if Nilaja can take a picture of it for me to post for everyone to see.)
I was planning to get up today and work on some purple flowers for our bedroom, but it's not going to happen today. Last night around bedtime I started feeling weird. I started having what I thought might be chest pain, some dizziness, and my legs and feet were on fire. I was finally able to fall asleep (thanks to Nilaja who wouldn't let me retreat to the couch to watch info-mercial until the morning). When I got up this morning, I tried to get on track, but it's not going to happen. My fatigue is really strong today and my stomach hates me. All the pain from last week is amped up and I've already vomited once today. I put in a call to Dr. F and might even take a chance with my PCP (she's so incompetent). I'm starting to wonder if the steroids did more than passing damage. I hope not.
Friday night was really great, I had a lot of fun with my friends and I'm so glad I didn't let the fatigue ruin my evening. I felt so good when I got home that I decided not to pre-medicate before my injection. It was the second time I tried that and once again I didn't have any flu-like symptoms. I'm starting to really like Betaseron.
Saturday and Sunday were spent with Nilaja. We didn't do much, but managed to stay busy and have a really good time. I was able to make a nice dinner on Saturday and on Sunday I baked a cake. It was a good weekend. Oh, I also decided not to take the pottery class and used the money I would have spent for that to buy more art supplies. I still need new brushes, but I got some basic acrylic paint, canvas, and a cheap tabletop easel (Michael's was having a fantastic sale).
The weekend was so mellow and relaxing that by Monday morning I was energized and ready to start the week. I got up early, cleaned our apartment, showered, and ate breakfast by 10:30 am. Then I turned on my favorite music, sat down at the dining room table, and painted. My new favorite hobby is painting. It is so relaxing and I was able to drop my need for perfection and just paint. I was so happy. When I was painting, I didn't care about the pain, numbness, or even my vision. All my attention and energy went to creating something that I would be proud to hang on my wall. (I'll see if Nilaja can take a picture of it for me to post for everyone to see.)
I was planning to get up today and work on some purple flowers for our bedroom, but it's not going to happen today. Last night around bedtime I started feeling weird. I started having what I thought might be chest pain, some dizziness, and my legs and feet were on fire. I was finally able to fall asleep (thanks to Nilaja who wouldn't let me retreat to the couch to watch info-mercial until the morning). When I got up this morning, I tried to get on track, but it's not going to happen. My fatigue is really strong today and my stomach hates me. All the pain from last week is amped up and I've already vomited once today. I put in a call to Dr. F and might even take a chance with my PCP (she's so incompetent). I'm starting to wonder if the steroids did more than passing damage. I hope not.
Friday, June 12, 2009
Free For All Friday: Ask Me Anything!
I've decided to bring back FFAF. Once again, you can ask me whatever you want (within reason**)! Just comment below and I will make a post on Monday to answer all the questions. You can comment anonymously or logged in. Ideally, your questions will be MS related, but if you want to know more about my life, I'll be happy to share.
**Obviously, I'm not going to give out personal information like my address or phone number! I have to keep my family safe.
**Obviously, I'm not going to give out personal information like my address or phone number! I have to keep my family safe.
I'm tired
I've been trying to get a nap in the past few days to try to tackle this fatigue, but it isn't working. Even though I'm now sleeping through the night and taking a nap during the day, I'm just as tired as always. It sucks. Right now all I want to do is sleep until Sunday, but I have plans tonight and stuff to do tomorrow. But the frustrating thing is that even if I did sleep until Sunday, I would still wake up exhausted and ready to go back to sleep. So, I get to make a choice, cancel tonight's plans, sleep, and still be tired or go out, have fun with friends, and still be tired. Obviously, I'm going out.
I just had to come here and complain for a moment. I'm trying so hard to be good and rest up, but it isn't working. I really thought I'd reach a point where I would start to feel better, but it feels like my wheels are spinning. I keep thinking, "It's only fatigue, why can't I push through this?" Gaaaaahhhh!!! I'm so frustrated.
Today has also been a day of numbness and tingling. Per usual, my feet are numb and I have pins and needles running up both legs, which is made worse by moving my legs. This could be walking, sitting down, or even adjusting my position while in bed. It sucks. Thankfully it's not leg pain, but when coupled with the fatigue it's making me feel incredibly run down. And by the way, I still can't see out of my right eye and my stomach has not healed. Today is pretty shitty. Thank you for letting me whine.
I just had to come here and complain for a moment. I'm trying so hard to be good and rest up, but it isn't working. I really thought I'd reach a point where I would start to feel better, but it feels like my wheels are spinning. I keep thinking, "It's only fatigue, why can't I push through this?" Gaaaaahhhh!!! I'm so frustrated.
Today has also been a day of numbness and tingling. Per usual, my feet are numb and I have pins and needles running up both legs, which is made worse by moving my legs. This could be walking, sitting down, or even adjusting my position while in bed. It sucks. Thankfully it's not leg pain, but when coupled with the fatigue it's making me feel incredibly run down. And by the way, I still can't see out of my right eye and my stomach has not healed. Today is pretty shitty. Thank you for letting me whine.
Wednesday, June 10, 2009
A First Time for Everything
Today I took a nap. That's right, I stopped all my obsessive cleaning, ignored the DVR full of tv shows, and took a nap. I know I claim to rest and nap all the time, but today I took a REAL nap. Not one of those naps where I lay down and watch tv, or put an ice pack on my forehead and listen to soothing music. Nope, I put on my pjs (OK, I was already in my pjs), closed the blinds, turned off the tv, got under the covers, and slept. It was so nice. Even after my daily phone call, I went back to sleep and slept for another hour.
And you know what, when I finally got out of bed I had energy again. I wanted to bounce around the apartment for a bit and giggle with Nilaja. I was even able to make dinner and wash the dinner dishes, which I haven't done in months. That may not sound like a big deal to most people, but since I usually zonk out mid-meal, having energy to even clear the table is celebration worthy. I am happier than I can express.
Also, I'm still keeping food down, though my stomach has not completely healed. I'm hoping that the steroids didn't cause any permanent damage and by Friday my stomach will be back to normal. Unfortunately, my right eye has not improved one bit, but I'm trying to be patient and optimistic.
Maybe more naps will help.
And you know what, when I finally got out of bed I had energy again. I wanted to bounce around the apartment for a bit and giggle with Nilaja. I was even able to make dinner and wash the dinner dishes, which I haven't done in months. That may not sound like a big deal to most people, but since I usually zonk out mid-meal, having energy to even clear the table is celebration worthy. I am happier than I can express.
Also, I'm still keeping food down, though my stomach has not completely healed. I'm hoping that the steroids didn't cause any permanent damage and by Friday my stomach will be back to normal. Unfortunately, my right eye has not improved one bit, but I'm trying to be patient and optimistic.
Maybe more naps will help.
Tuesday, June 9, 2009
No more steroids, ever
Last night, after I finished my post, I got really sick. My stomach became really upset and I was having the most excruciating burning and aching. From there, I started having intermittent heart racing, an intense headache, jaw pain, and a whole lot of anxiety. I was really afraid. I called the Betanurse and she suggested I call my neuro immediately, though I don't think she understood that if I could call my neuro I would be calling her. She just frustrated me and I decided to try to go to bed. Of course all the weird gut stuff and headache triggered the MS, and the room started spinning and I had shooting pain in both legs. It was crazy. By the middle of the night I was contemplating the ER.
I was able to get about two hours of sleep and that really helped with the MS symptoms, but the stomach and heart stuff continued. Nilaja helped me get dressed and Sophia took me to the hospital for the infusion. As soon as I arrived and started talking to Carol, she decided not to do the infusion. At first I was upset, but she was right. Last night was seriously awful and I would rather lose the vision than have the stomach pain. She took my vitals and we spoke with Dr. F, he agreed completely, Carol took out the IV hookup, and I came home.
And as soon as I walked in the door, the vomiting started. Fuck. I called Dr. F and he suggested I eat some bland foods (rice, corn, melon) and if I continue to vomit I can get some pepcid and the pink stuff. I've been eating frozen corn and my tummy didn't like that, but I'm going to try and give it some time, try to take a nap, and see how I feel later before I take more medicine.
That's where I am now. My eyesight has not improved, my tummy is killing me, and I can't keep any food down. Also, it seems that the Solumedrol increases urine, which would explain the TWO accidents yesterday. That isn't particularly relevant except to explain why life sucks today and resting is difficult with me up running to the restroom every hour. I need to get me some diapers.
I was able to get about two hours of sleep and that really helped with the MS symptoms, but the stomach and heart stuff continued. Nilaja helped me get dressed and Sophia took me to the hospital for the infusion. As soon as I arrived and started talking to Carol, she decided not to do the infusion. At first I was upset, but she was right. Last night was seriously awful and I would rather lose the vision than have the stomach pain. She took my vitals and we spoke with Dr. F, he agreed completely, Carol took out the IV hookup, and I came home.
And as soon as I walked in the door, the vomiting started. Fuck. I called Dr. F and he suggested I eat some bland foods (rice, corn, melon) and if I continue to vomit I can get some pepcid and the pink stuff. I've been eating frozen corn and my tummy didn't like that, but I'm going to try and give it some time, try to take a nap, and see how I feel later before I take more medicine.
That's where I am now. My eyesight has not improved, my tummy is killing me, and I can't keep any food down. Also, it seems that the Solumedrol increases urine, which would explain the TWO accidents yesterday. That isn't particularly relevant except to explain why life sucks today and resting is difficult with me up running to the restroom every hour. I need to get me some diapers.
Monday, June 8, 2009
1 down 2 to go
The Solumedrol infusion went very smoothly. The nurse, Carol, was super sweet, informative, and thorough. I felt so comforted with her. My friend Sophia chaperoned the whole event and keep me laughing and talking. Carol was also really open and inclusive with her, which is rare but made us both happy. Carol also suggested I bring the same friend each time so that she can help track changes and reactions, and Sophia was more than happy to oblige. I was there for about two hours if we include registration and all the orientation stuff, but the time flew by. Since my veins were being really wonky, I asked her to leave the hookup in my arm, so tomorrow whe just needs to hook up the bag.
Unfortunately, I haven't had any symptom relief yet. That's a little frustrating, but expected. I do have the weird bitter metalllic taste that is common with taking steroids, but it's not too bad. Most food covers it and I've been sucking on Werther's in the interim. The nurse also suggested that this would make me want to eat and that is definitely happening, despite my post-meal nausea. I'm hoping to just head to bed soon, so I don't spend the whole evening munching. Surprisingly, I don't have excessive amounts of energy and am quite exhausted. That just another reason why the bed is calling my name. (It's also why this whole post is poorly formatted and more me just running off the details than explaining the day.)
Oh, we did my fifth injection today and instead of me doing it on my belly, Nilaja did it in the back of my left arm. I've gotten really good and fast at it, so the whole injection process is painless (literally and figuratively).
There is one strange thing that I need to keep track of, I'm running a fever. It's low-grade, but I had it this morning and also before my injection. I'll stay on top of that and contact my doctors if it doesn't go away, but I'm not worrying about it yet.
Unfortunately, I haven't had any symptom relief yet. That's a little frustrating, but expected. I do have the weird bitter metalllic taste that is common with taking steroids, but it's not too bad. Most food covers it and I've been sucking on Werther's in the interim. The nurse also suggested that this would make me want to eat and that is definitely happening, despite my post-meal nausea. I'm hoping to just head to bed soon, so I don't spend the whole evening munching. Surprisingly, I don't have excessive amounts of energy and am quite exhausted. That just another reason why the bed is calling my name. (It's also why this whole post is poorly formatted and more me just running off the details than explaining the day.)
Oh, we did my fifth injection today and instead of me doing it on my belly, Nilaja did it in the back of my left arm. I've gotten really good and fast at it, so the whole injection process is painless (literally and figuratively).
There is one strange thing that I need to keep track of, I'm running a fever. It's low-grade, but I had it this morning and also before my injection. I'll stay on top of that and contact my doctors if it doesn't go away, but I'm not worrying about it yet.
Sunday, June 7, 2009
Raise your hand if you knew this was coming.
I can't sleep. I knew this would happen. Since I was a kid I always had a lot of anxiety and none of that has changed. Now, instead of only having insomnia the night before Christmas or my birthday, I have it whenever anything mildly exciting or different is going to happen. So, I'm awake right now. I knew this was going to happen and I tried to avoid it. I spent the whole day cleaning and doing laundry in hopes of completely exhausting myself. I made sure I had dinner relatively early and gave myself plenty of time to unwind before lights out. On top of that, I took 2 ativan and crossed my fingers. It almost worked, but then I forgot one important thing, I didn't empty my bladder. As soon as I started to drift off, I got that feeling and having just changed the sheets, I did not want to chance making it through the night (which I would have done with ease a few months ago). As always, that short trip to the bathroom woke me up completely and I laid there another hour before giving up and coming to the couch.
While I'm here, I might as well tell you that I'm insanely nervous about the infusion tomorrow. I'm not sure why, but I am. I've been looking forward to it and hoping it restores my vision (which is pretty much gone in the right eye), but I guess I'm also worried that it's going to make me sick. I have my zantac and candies, I have a good friend taking me, and I have none of the risk factors for adverse reactions, but I'm still afraid of what may happen. Actually, I'm more worried that it's too late and my vision will never improve. That's what scares me the most. I'll adjust and learn to cope without my right eye, but I don't want to do that. I want both eyes (as much as I have of the left one anyway).
Well, I honestly want a lot of things, but this week I'll settle for my vision.
While I'm here, I might as well tell you that I'm insanely nervous about the infusion tomorrow. I'm not sure why, but I am. I've been looking forward to it and hoping it restores my vision (which is pretty much gone in the right eye), but I guess I'm also worried that it's going to make me sick. I have my zantac and candies, I have a good friend taking me, and I have none of the risk factors for adverse reactions, but I'm still afraid of what may happen. Actually, I'm more worried that it's too late and my vision will never improve. That's what scares me the most. I'll adjust and learn to cope without my right eye, but I don't want to do that. I want both eyes (as much as I have of the left one anyway).
Well, I honestly want a lot of things, but this week I'll settle for my vision.
Thursday, June 4, 2009
The Good, The Bad, and The Ugly. Plus ways to help.
The Good: I spoke to Dr. F this morning and he was very sympathetic and apologetic. I guess the Optometrist shared more with him than she did with us, and while I felt she was in left field, she wasn't. He talked about my options and recommended I do the IV steroids for 3 days. I agreed and thanked him for listening and taking such good care of me. He also told me that he received the reports from Maine and was really surprised by them.
The Bad: Despite all my anxiety and trying to get immediate treatment, I can't start the IV infusion until next week. It needs to be done on 3 consecutive days (outpatient) and the clinic is only open Monday through Friday. I'm set for Monday at 11:30 am. I think I'll make it until then, but I am nervous. My vision is much worse than I thought. I was out today running a few errands and it was really difficult. My depth perception is gone and everything I see is weird and shadowy. I really wish I could have started the treatment today, but I can't, so I'm just going to chill at home for the next few days.
The Ugly: There were spots on my MRI in 2005. There were only 2, but they were noted on the report. But no one said anything. No one thought it meant anything. They write in their reports that I already had numbness, tingling, and pain, plus these 2 spots, but they all decided that it wouldn't change or spread. I'm so angry. If I'd known about it, I would have done a follow up 6 months later. I would have continued to pursue it. But I was told that nothing was there and that I'd be fine. But I'm not. I now have 10 spots, I walk with a cane, I randomly piss myself, and now I can't see. I am currently gathering all the reports and films (I have the 2005 MRI right next to me), I'm going to give it to the radiologist who read my most recent MRI and see what he says. And then I'm consulting an attorney. (If you know an attorney, especially one that does free consultations, please forward that info to me.)
{exhale}
Due to my current situation, I need some help:
Until my eye resolves, I need a little help getting around. I don't know the times of the Tuesday and Wednesday infusions, but I will need help getting there and back. They are taking place at Herrick on Dwight in Berkeley and the entire procedure should take an hour. I don't necessarily need someone with a car, just someone who can ride the bus with me, make sure I get the right stop, and walk me back to my apartment. If you are interested in helping out, please comment below, email me, or send me a message on Facebook. I already checked with the infusion folks and they said that it's fine to bring a friend to keep me calm throughout the procedure. It doesn't need to be the same person each day and if you have some time to give on Tuesday or Wednesday and would like to be "on call," please let me know with the times that you are available.
The Bad: Despite all my anxiety and trying to get immediate treatment, I can't start the IV infusion until next week. It needs to be done on 3 consecutive days (outpatient) and the clinic is only open Monday through Friday. I'm set for Monday at 11:30 am. I think I'll make it until then, but I am nervous. My vision is much worse than I thought. I was out today running a few errands and it was really difficult. My depth perception is gone and everything I see is weird and shadowy. I really wish I could have started the treatment today, but I can't, so I'm just going to chill at home for the next few days.
The Ugly: There were spots on my MRI in 2005. There were only 2, but they were noted on the report. But no one said anything. No one thought it meant anything. They write in their reports that I already had numbness, tingling, and pain, plus these 2 spots, but they all decided that it wouldn't change or spread. I'm so angry. If I'd known about it, I would have done a follow up 6 months later. I would have continued to pursue it. But I was told that nothing was there and that I'd be fine. But I'm not. I now have 10 spots, I walk with a cane, I randomly piss myself, and now I can't see. I am currently gathering all the reports and films (I have the 2005 MRI right next to me), I'm going to give it to the radiologist who read my most recent MRI and see what he says. And then I'm consulting an attorney. (If you know an attorney, especially one that does free consultations, please forward that info to me.)
{exhale}
Due to my current situation, I need some help:
Until my eye resolves, I need a little help getting around. I don't know the times of the Tuesday and Wednesday infusions, but I will need help getting there and back. They are taking place at Herrick on Dwight in Berkeley and the entire procedure should take an hour. I don't necessarily need someone with a car, just someone who can ride the bus with me, make sure I get the right stop, and walk me back to my apartment. If you are interested in helping out, please comment below, email me, or send me a message on Facebook. I already checked with the infusion folks and they said that it's fine to bring a friend to keep me calm throughout the procedure. It doesn't need to be the same person each day and if you have some time to give on Tuesday or Wednesday and would like to be "on call," please let me know with the times that you are available.
Wednesday, June 3, 2009
Rant!
I really expected the next thing I post to be details about IV steroids and really getting to the bottom of my eye issue. But I can't do that. I just got back from seeing the eye doctor and I'm so pissed out right now. Not a little upset or frustrated, but so angry that I could spit. First off, she's an optometrist, not an ophthalmologist. This meant that she was much more interested in fitting me for glasses than figuring out why I can't see. We started talking about my impairment and I told her that my eye has gotten so bad that I can't do anything. I have trouble getting dressed, cooking, and even fun stuff like painting and crocheting. So she offered me an eye patch. I kid you not. I have a blindspot in the middle of my eye, all I see as shades of gray, and her solution is an eye patch (I'm really trying not to curse). I wanted to walk out right that minute. Then she asked me several times if I had diabetes and if I knew the signs of diabetes, and I just kept reiterating that my sugar is fine. Then she put in some drops and sent me out to the waiting room again.
At this point I'm so upset that I'm tearing up and I ask Nilaja to step outside with me while I call Dr. Friedberg. Emily, the office manager, answered and I explained everything that was going on. She got my chart and then started explaining to me what the receptionist had noted the day before and Dr. Friedberg's response to that. I know I don't communicate well, but she got everything all wrong. She wrote something about a headache and Dr. F figured it was the occipital neuralgia (my original diagnosis) and that's why he didn't respond. But that's not what I told her. I tried to explain it all to Emily and she seemed to get where I was coming from. Phew! Unfortunately, Dr. F wasn't there, so I have to wait until tomorrow morning.
I went back in and she took some pictures of my eyes before telling me to come back in a few weeks. Oh, and call her once a week to check in and she gave me her home phone number just in case something new comes up. She also gave me some little grid thing she wanted me to work on (whatever). I have no intention of seeing her ever again.
And I'm angry. So very very angry. And disappointed. And scared. The Prednisone is not helping me and I feel like I'm running out of time on this. I wish all these people could understand what it's like not to be able to see. Even the doctor today could see the permanent damage from the first time, and she had no response. Just that I don't have liver disease, high blood pressure, diabetes, or kidney disease. No, I don't. I have Multiple Sclerosis. I have Optic Neuralgia. And it's taking all my strength not to go to the ER or sleep in the hallway outside of Dr. F's office.
At this point I'm so upset that I'm tearing up and I ask Nilaja to step outside with me while I call Dr. Friedberg. Emily, the office manager, answered and I explained everything that was going on. She got my chart and then started explaining to me what the receptionist had noted the day before and Dr. Friedberg's response to that. I know I don't communicate well, but she got everything all wrong. She wrote something about a headache and Dr. F figured it was the occipital neuralgia (my original diagnosis) and that's why he didn't respond. But that's not what I told her. I tried to explain it all to Emily and she seemed to get where I was coming from. Phew! Unfortunately, Dr. F wasn't there, so I have to wait until tomorrow morning.
I went back in and she took some pictures of my eyes before telling me to come back in a few weeks. Oh, and call her once a week to check in and she gave me her home phone number just in case something new comes up. She also gave me some little grid thing she wanted me to work on (whatever). I have no intention of seeing her ever again.
And I'm angry. So very very angry. And disappointed. And scared. The Prednisone is not helping me and I feel like I'm running out of time on this. I wish all these people could understand what it's like not to be able to see. Even the doctor today could see the permanent damage from the first time, and she had no response. Just that I don't have liver disease, high blood pressure, diabetes, or kidney disease. No, I don't. I have Multiple Sclerosis. I have Optic Neuralgia. And it's taking all my strength not to go to the ER or sleep in the hallway outside of Dr. F's office.
Everyone, say hello to Nilaja
As I was contemplating going to the ER last night and not sure whether they would keep me there or what, I thought it would be good for someone to let you know where I've disappeared to. I asked my wife if she would like to be an official contributor here and she said yes! So, now if I get really sick and disappear, she can sign on and let you know what's happening. This will also give her an opportunity to share her side of the story and let you all know how she's coping with a broken wife. Please feel free to say a big welcome to her on this post and look forward to her writing to you soon.
Getting worse
The Mrs. and I like to go to the fitness center to use the treadmills when she get home from work. Yesterday was like every other day until 5 minutes in when I noticed some weirdness with the bush outside the window. I kept staring and finally checked my eyes. First I covered the right and everything looked normal. I could see all the leaves and their veins, even little water droplets. Then I cover the left and my jaw dropped. I looked out the window and everything was in shades of gray with the same dark line bisecting my vision. I was stunned. I immediately stopped the treadmill, sat down, and called Dr. F. I left a message for him since he was with a patient and came back up to the apartment (I don't like crying in public).
My eye has not changed and I did not hear back from Dr. F. I'm really freaked out and terrified that my vision loss will end up permanent. I spent last night researching ON and polling all the MS groups that I know to see how they were treated and what kind of results they saw. Everyone said they were treated with intravenous steroids for 3 days and then put on the oral Prednisone taper afterward. Everyone who did this saw results immediately and were back to "normal" after the first 3 days. I only found negative information when I researched doing just the oral taper to treat the ON. I guess there are more chances that it will reoccur. No thank you. There were a few people who didn't treat their ON and spent a few weeks to a few months to recover. I'm not willing to chance it.
So, the plan is, get up and dressed before the offices open. Call the ophthalmologist and try to get an appointment today. Call Dr. F and try to see him today. And if none of them have any answers or suggestions, maybe try the hospital. It is my vision that we're talking about!
My eye has not changed and I did not hear back from Dr. F. I'm really freaked out and terrified that my vision loss will end up permanent. I spent last night researching ON and polling all the MS groups that I know to see how they were treated and what kind of results they saw. Everyone said they were treated with intravenous steroids for 3 days and then put on the oral Prednisone taper afterward. Everyone who did this saw results immediately and were back to "normal" after the first 3 days. I only found negative information when I researched doing just the oral taper to treat the ON. I guess there are more chances that it will reoccur. No thank you. There were a few people who didn't treat their ON and spent a few weeks to a few months to recover. I'm not willing to chance it.
So, the plan is, get up and dressed before the offices open. Call the ophthalmologist and try to get an appointment today. Call Dr. F and try to see him today. And if none of them have any answers or suggestions, maybe try the hospital. It is my vision that we're talking about!
Monday, June 1, 2009
Prednisone vs. Ativan and Melatonin = I'm awake and miserable
One of the few things that I hate more than insomnia is taking pills (especially prescriptions). I will try everything before taking a pill. So, when I finally accepted a prescription for a chemical sleeping aid I was pretty desperate for a good night of sleep. And yet I'm awake. One of the side effects of Prednisone is INSOMNIA! {insert exhausted scream here} Dr. F warned me this might happen, and to combat it he suggested I take a whole melatonin and a whole ativan. I was a little hesitant to take so much sleeping aid (I'm pretty sensitive to medication, there was a time when a quarter of a melatonin would put me over), but I did it and I'm still awake. I am exhausted and sleepy, I even have that weird lighteheaded-dizzy-fogginess that you get when you take sleeping aids. But after laying there for over 2 hours and doing the counting and breathing techniques, I am getting no where. On the brighter side, the interferons make me sleepy, so that combined with the melatonin and ativan may work. Or it may mean extended irritability and moodiness. Fun.
On a slightly related note, there have been no changes in my vision or the pain in my eye. I was hoping for fast results, but I guess I need to be patient.
On a slightly related note, there have been no changes in my vision or the pain in my eye. I was hoping for fast results, but I guess I need to be patient.
Optic Neuritis
First, I want to say a big thank you to everyone who sent me messages and emails today. I really appreciate all the kind words and thoughts.
Dr. Friedberg confirmed that I have optic neuritis and that it is the reason I have no peripheral vision in my left eye. The good news is that we caught it early and I should make a full recovery. All I have to do is take oral Prednisone (a corticosteroid) for 6 days and rest. That's it. I already took the first dose (6- 10 mg tablets) and I step down from there until the last day when I take just one pill. He's hoping that this dosing method will help me avoid the multitude of side-effects. As always, I resisted the prescription, but I knew he was hesitant about putting me on them anyway so I feel comfortable. He did say that it can clear up without treatment, but with my history and the fact that I never fully healed on the left, he doesn't want to chance it. I agree with him. He also gave me something for sleeping and some eye drops since my eye is red from me trying to rub off the blindspot.
I'm really happy knowing that my vision should improve, but I can't help being really angry that they didn't figure this out 4 years ago. I also realized earlier that they did a MRI back then and told me it was clear. I'm starting to think that somebody screwed up and you better believe I'm on the case. Everyone I called was trying to be difficult and evasive, but they don't realize that all I have is time. Dr. F's office staff is also trying to get all my records and a copy of the films, because even though it won't have much bearing on my future treatment, it will answer a lot of questions.
Dr. Friedberg confirmed that I have optic neuritis and that it is the reason I have no peripheral vision in my left eye. The good news is that we caught it early and I should make a full recovery. All I have to do is take oral Prednisone (a corticosteroid) for 6 days and rest. That's it. I already took the first dose (6- 10 mg tablets) and I step down from there until the last day when I take just one pill. He's hoping that this dosing method will help me avoid the multitude of side-effects. As always, I resisted the prescription, but I knew he was hesitant about putting me on them anyway so I feel comfortable. He did say that it can clear up without treatment, but with my history and the fact that I never fully healed on the left, he doesn't want to chance it. I agree with him. He also gave me something for sleeping and some eye drops since my eye is red from me trying to rub off the blindspot.
I'm really happy knowing that my vision should improve, but I can't help being really angry that they didn't figure this out 4 years ago. I also realized earlier that they did a MRI back then and told me it was clear. I'm starting to think that somebody screwed up and you better believe I'm on the case. Everyone I called was trying to be difficult and evasive, but they don't realize that all I have is time. Dr. F's office staff is also trying to get all my records and a copy of the films, because even though it won't have much bearing on my future treatment, it will answer a lot of questions.
Back to the Neuro
I'm seeing my neurologist at 2:30 pm today. I was hoping to wake up feeling much better, but I didn't. My eye has not improved. And honestly, I'm terrified. When this all happened on the left, I was so busy working on Ugly Ducklings, preparing for knee surgery, and getting pumped for my last year of college, that I didn't notice until it was too late. As weird as it may sound, I wish I was busier so that I wouldn't have to feel it. You know what I mean? If this is going to happen, I would prefer not noticing every shock of pain and not feeling or seeing the weird cloudiness.
I'm also really pissed off about the whole thing. With all the hospital visits, weird symptoms, and my previous vision loss, you'd think someone would have figured it out. And I can't help thinking that if I'd gotten my diagnosis a few years ago, then maybe I wouldn't be where I am now. I wouldn't be in my 20s and losing my vision or peeing through my clothes or falling down or any of this stuff. GAH!!! I'm just so frustrated.
But I can't live in the past and wish things had unfolded differently. I'm going to keep moving forward and try to get on my feet. More later after I see Dr. F.
I'm also really pissed off about the whole thing. With all the hospital visits, weird symptoms, and my previous vision loss, you'd think someone would have figured it out. And I can't help thinking that if I'd gotten my diagnosis a few years ago, then maybe I wouldn't be where I am now. I wouldn't be in my 20s and losing my vision or peeing through my clothes or falling down or any of this stuff. GAH!!! I'm just so frustrated.
But I can't live in the past and wish things had unfolded differently. I'm going to keep moving forward and try to get on my feet. More later after I see Dr. F.
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