Oh, Happy Day! I am feeling better today! I started a new medicine this morning called Provigil. It is an anti-fatigue medicine, typically prescribed for people with Narcolepsy. While I'm sure this condition isn't funny to those who suffer from it, I was a little amused. We all have our weak moments, right? So I digress. I was prescribed this back in January, but didn't fill it until right before my flare-up. So I didn't end up taking it. I felt I needed my rest to recover and that it would be counter-productive to energize myself when I needed to heal. So I waited.
I have felt better this week overall. I told Dave my biggest complaint at this point was feeling tired. So it seemed a good time to try the new meds. My neuro said to take a half of a pill at breakfast & a half a pill at lunch. If this didn't help then a whole at breakfast, and half at lunch, up to one whole one at each meal. I don't think it'll be necessary to increase.
So I wanted to start with a little caution since I didn't know how I would respond. I have seen many posts of how different MS patients have responded from energized to hyper to overwhelmed. So I decided to just do the half pill at breakfast. After an hour, my fatigue seemed to disappear and I felt pretty good. After around 3 hrs I thought I was a little hyper, heart racing slightly and had to catch my breath. I decided to skip the lunchtime pill. At about 1:30pm, I started crashing, fast. Fatigue was coming and weakness was spreading. I wanted to rest, but didn't really have the time.
Around 2:30, I re-evaluated myself. I calculated how long the effects had benefited me and came up with about 5 hours. So, I decided to take the other half. My thought is in 5 hrs it'll be time to put the kids to bed and wind down. So I gave it a try. It was better! I felt more energized again, but no hyper or heart racing, etc. So it occurs to me I was drinking my usual coffee in the morning. I know! Maybe, less caffeine with the Provigil, right? I mean I still want my coffee, but I could cut back until I find the best amount to limit the added effects. Hey trial & error was what I was going for today.
It is about 8:30 now, and I feel the effects wearing off. Getting tired, which is perfect since I should go to bed soon. But the best part is, I felt almost normal this afternoon. I mean normal like I haven't felt in two years! Don't get me wrong, there were some symptoms. Some leg weakness & pain, but I figured I didn't take my pain pill today. I need to manage both things better, but it's a start.
I also need to remind myself with Provigil that MS did not take a vacation that this is designed to wake me up a bit to function in my daily life. I got a little excited with the burst of energy & walked a little too fast. I caught myself falling in the parking lot. I caught myself! I'm fine, but I need to remember my limits and reap the benefits. My leg is still off, but I think this will be a good thing. I am hopeful and who could ask for more? So I have been using this tagline on & off, so I will end with it. Hoping for miracles & positive attitudes!
Thanks for all your love & support! It means the world to me!
Tammy
Thursday, February 18, 2010
Thursday, February 4, 2010
Brain Boost
So yesterday was my last day of IV Steroids. I had a burst of energy in the afternoon and definitely felt alot better. Pain was gone, numbness was gone, fatigue was gone, weakness was gone! I was alittle off-balance, but things were looking up. At around 7pm, I hit my wall! Fatigue started setting in, so I made sure I was ready to get right in bed after my shot. I slept pretty good.
This morning, I still felt better. Normal MS mode, I would say. Can't expect miracles, right? But I started to get really fatigued around 8am and my right leg started to go numb again. I told Dave I needed to go lay down. So from 9:15am until 2:30pm, I slept! When I woke up, I felt a little shaky and my legs felt weak. Now the pain is there again. *sigh*
I just thought the effects would last a little longer than this. I still feel better than I did, don't get me wrong, but I don't feel good. I start the Provigil, anti-fatigue meds, on Saturday. Hopefully that can bring some new benefits to my body.
Trying to stay positive through my frustration. I am happy I do not feel anywhere close to what I was experiencing last week. But I just want to keep the Brain Boost a little longer! Love & kisses! -Tammy
This morning, I still felt better. Normal MS mode, I would say. Can't expect miracles, right? But I started to get really fatigued around 8am and my right leg started to go numb again. I told Dave I needed to go lay down. So from 9:15am until 2:30pm, I slept! When I woke up, I felt a little shaky and my legs felt weak. Now the pain is there again. *sigh*
I just thought the effects would last a little longer than this. I still feel better than I did, don't get me wrong, but I don't feel good. I start the Provigil, anti-fatigue meds, on Saturday. Hopefully that can bring some new benefits to my body.
Trying to stay positive through my frustration. I am happy I do not feel anywhere close to what I was experiencing last week. But I just want to keep the Brain Boost a little longer! Love & kisses! -Tammy
Wednesday, February 3, 2010
Strong Minded
Started Steroid IV Infusions on Monday. My flare-up that started last week with the overwhelming numbness escalated over the weekend. The pain became so bad I was in tears much of Saturday & Sunday afternoon. The "inside" tremors were bad too. This is basically when you feel like your whole body is shaking or vibrating from the inside out, but can't be seen to the naked eye. It's really unnerving. Add that to the whole body feeling numb, and well, I was a mess.
After I finished my paper route on Sunday morning, I had a bad scare. During the route I was ok, not great, but functional enough to do my job. After each part of the morning I was more tired, but no other symptoms but the numbness. So I finished my sample papers and started home. Dave had mentioned he wanted to go get milk after I got home, but I thought I'd just pick it up. So I am driving down Gratiot before 13 Mile Rd and all of a sudden I feel like I'm not breathing. I think WTF, I'm not breathing, so I start taking very deep breaths. Then I start to feel like I could pass out. Keep in mind, I'm still driving. It was like that feeling you get when you stand up to fast and that snowy feeling comes over your eyes like when your tv cuts out. I start looking around to see where I can pull over. The closest thing is Kroger. I figure it's early Sunday morning still, not alot of traffic, so people should have time to move away from me if I crash. And I'm not going over 35 mph so the worse that can happen is I hit the median. So I think if I start to pass out, I'll just throw it in park & hope for the best.
So I make it to Kroger still feeling weak and light-headed. I think I need to go in the store. If I'm gonna collapse, I need to be around people. No one is gonna find me in my car. Now I don't take my cane with me on my route so I'm free walking. Not very steady. As I'm walking I think people must be staring, right? but I remember that "I look so good" so probably not. If anything people are annoyed that I am not moving fast enough for them. Of course the milk is at the back of the store. I realize it's not so important to get the milk, but I was stalling to see if I was gonna be all right so mine-as-well accomplish something. I am trying not to cry and get my bearings. I think maybe I have low blood sugar, but there is no candy in the aisle I'm in & I don't want to go to another aisle, so I just pay for my stuff and slowly make it to the car.
I remember I have graham crackers in my purse for Paul, so I eat them. They don't help, but I tried. I decide I need to go home. So I take the most direct route, 13 Mile to Harper. I get home and want to cry, but keep it together. I walk in the house & Dave says, "Hi, hon! how you feeling? ... ...What's wrong?" I immediately burst into tears. Paul says "What's wrong Mommy?" I can't answer. Kristina says, "Did somebody die?" I shake my head. I can't stop crying. I finally tell Dave what happened and how scared I was.
I remember I'm supposed to watch my nephew the next day, he's only 5 months. I don't think it's a good idea. So I text my mom & ask her to cover for me. Then text my sister about the change in plans. I make arrangements for my sub to cover my route the next day. And try and eat something. I start crying again because the pain, numbness, inside tremors and fatigue is becoming more extreme. Kristina notices & goes to find Dave. He says he wants to take me to the hospital. I tell them the ER can't help me. He wants to know why not. I explain they are there to keep me alive and I'm not dying. I just have a bad MS flare-up. I decide to call my neurologists after hours line and get their opinion.
My neuro is not on call, but the head of neuro is. he asks if I have a fever, I say no. he said that would be the only reason he would send me cuz of possible liver or kidney infection form the meds. He advises me he will start me on IV steroids in the morning.
I take a pain pill and go to sleep for 4 hrs. The next day, I go in to start the steroids. My neuro is on vacation so I see another one in the practice. He is very nice and very compassionate, Dr Kahnst, I think. He says he wants 5 days of steroids, but asks if I've done that before. I say I only have had 3 days in the past, but that Dr. Beall has mentioned bumping me up to 5 days if necessary. So he states we will do 3 days and add the other two if necessary. Today will be day 3 for me, so we will see. I don't know what exactly he will be looking for as far as improvement to add the other two days. Not sure if he will be at this office today or not, he wasn't there yesterday.
So far the pain is alot less and the numbness is gone. I am still extremely tired, and very weak. The steroids do not give me energy like most people, they wipe me out. They cause my heart to race, and when I lay down it sounds so loud and feels like it'll jump out of my chest. They also make me weepy and bitchy. i remembered the mood thing before, so I made a conscious note to myself that if someone pisses me off I should give them a pass since I'll probably be overreacting. So I am trying to bite me tongue. Overall so far so good. Except for the incompetent person at the Social Security office that I hung up on, it's been fine ;)
So there it is. Hopefully on the mend. Maybe the steroids will make my mind stronger...like Arnold! The Dr's are doing "something" so I'll take it. Be well, stay positive and love life! I'm doing my best!
PS I signed up for the MS Walk in Troy, MI on Sunday May 2, 2010. I actually enrolled in the middle of all this drama. I figure I will walk in any capacity I am capable of that day. I'm asking people to support me financially or walk with me that day. I named my team "The Brain Farts". Always keeping my sense of humor! If you are interested in joining my team add this link in your browser & check me out:
http://main.nationalmssociety.org/site/TRC/Walk/MIGWalkEvents?pg=peditor&fr_id=13951&px=7658887
Thanks again for all your love & support! -Tammy
After I finished my paper route on Sunday morning, I had a bad scare. During the route I was ok, not great, but functional enough to do my job. After each part of the morning I was more tired, but no other symptoms but the numbness. So I finished my sample papers and started home. Dave had mentioned he wanted to go get milk after I got home, but I thought I'd just pick it up. So I am driving down Gratiot before 13 Mile Rd and all of a sudden I feel like I'm not breathing. I think WTF, I'm not breathing, so I start taking very deep breaths. Then I start to feel like I could pass out. Keep in mind, I'm still driving. It was like that feeling you get when you stand up to fast and that snowy feeling comes over your eyes like when your tv cuts out. I start looking around to see where I can pull over. The closest thing is Kroger. I figure it's early Sunday morning still, not alot of traffic, so people should have time to move away from me if I crash. And I'm not going over 35 mph so the worse that can happen is I hit the median. So I think if I start to pass out, I'll just throw it in park & hope for the best.
So I make it to Kroger still feeling weak and light-headed. I think I need to go in the store. If I'm gonna collapse, I need to be around people. No one is gonna find me in my car. Now I don't take my cane with me on my route so I'm free walking. Not very steady. As I'm walking I think people must be staring, right? but I remember that "I look so good" so probably not. If anything people are annoyed that I am not moving fast enough for them. Of course the milk is at the back of the store. I realize it's not so important to get the milk, but I was stalling to see if I was gonna be all right so mine-as-well accomplish something. I am trying not to cry and get my bearings. I think maybe I have low blood sugar, but there is no candy in the aisle I'm in & I don't want to go to another aisle, so I just pay for my stuff and slowly make it to the car.
I remember I have graham crackers in my purse for Paul, so I eat them. They don't help, but I tried. I decide I need to go home. So I take the most direct route, 13 Mile to Harper. I get home and want to cry, but keep it together. I walk in the house & Dave says, "Hi, hon! how you feeling? ... ...What's wrong?" I immediately burst into tears. Paul says "What's wrong Mommy?" I can't answer. Kristina says, "Did somebody die?" I shake my head. I can't stop crying. I finally tell Dave what happened and how scared I was.
I remember I'm supposed to watch my nephew the next day, he's only 5 months. I don't think it's a good idea. So I text my mom & ask her to cover for me. Then text my sister about the change in plans. I make arrangements for my sub to cover my route the next day. And try and eat something. I start crying again because the pain, numbness, inside tremors and fatigue is becoming more extreme. Kristina notices & goes to find Dave. He says he wants to take me to the hospital. I tell them the ER can't help me. He wants to know why not. I explain they are there to keep me alive and I'm not dying. I just have a bad MS flare-up. I decide to call my neurologists after hours line and get their opinion.
My neuro is not on call, but the head of neuro is. he asks if I have a fever, I say no. he said that would be the only reason he would send me cuz of possible liver or kidney infection form the meds. He advises me he will start me on IV steroids in the morning.
I take a pain pill and go to sleep for 4 hrs. The next day, I go in to start the steroids. My neuro is on vacation so I see another one in the practice. He is very nice and very compassionate, Dr Kahnst, I think. He says he wants 5 days of steroids, but asks if I've done that before. I say I only have had 3 days in the past, but that Dr. Beall has mentioned bumping me up to 5 days if necessary. So he states we will do 3 days and add the other two if necessary. Today will be day 3 for me, so we will see. I don't know what exactly he will be looking for as far as improvement to add the other two days. Not sure if he will be at this office today or not, he wasn't there yesterday.
So far the pain is alot less and the numbness is gone. I am still extremely tired, and very weak. The steroids do not give me energy like most people, they wipe me out. They cause my heart to race, and when I lay down it sounds so loud and feels like it'll jump out of my chest. They also make me weepy and bitchy. i remembered the mood thing before, so I made a conscious note to myself that if someone pisses me off I should give them a pass since I'll probably be overreacting. So I am trying to bite me tongue. Overall so far so good. Except for the incompetent person at the Social Security office that I hung up on, it's been fine ;)
So there it is. Hopefully on the mend. Maybe the steroids will make my mind stronger...like Arnold! The Dr's are doing "something" so I'll take it. Be well, stay positive and love life! I'm doing my best!
PS I signed up for the MS Walk in Troy, MI on Sunday May 2, 2010. I actually enrolled in the middle of all this drama. I figure I will walk in any capacity I am capable of that day. I'm asking people to support me financially or walk with me that day. I named my team "The Brain Farts". Always keeping my sense of humor! If you are interested in joining my team add this link in your browser & check me out:
http://main.nationalmssociety.org/site/TRC/Walk/MIGWalkEvents?pg=peditor&fr_id=13951&px=7658887
Thanks again for all your love & support! -Tammy
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