Tuesday, May 14, 2013
My First MS Blog: Nuvigil #2 and other news
My First MS Blog: Nuvigil #2 and other news: Ok so this med is not working for me! Sigh... So they are upping the dose to see if that will make a difference...so to be continued..... ...
Nuvigil #2 and other news
Ok so this med is not working for me! Sigh... So they are upping the dose to see if that will make a difference...so to be continued.....
So since my diagnosis I started following some different blogs as well reading others personal perspective of their own trials on MS groups. Reading these gave me the idea to do this blog for myself. I have to say it helps. It is the diary I know I would never do using pen and paper! How sad is it that picking up a pen and paper is now outdated and too much effort lol. Anyway, a few good points I have read recently that certainly apply to me and some random thoughts:
1. I am so aware of my body that I get on my own nerves..seriously. Every tingle, increasing fatigue, vision blip causes me to be concerned if it is something to worry about or if it is just normal, a fluke. It is very frusturating to live this way but there seems no way around it.
2. I dislike the office staff at my neurologists! But I love my Dr! So I am staying, but geeze you would think they would be kind and have comapssion considering what their patients are going through. The PA actually said to me "whats up" when I called to tell her about the med that is not working! Really- "whats up"! I'll tell you whats up, I have MS and am trying to manage my symptoms and need your help thats whats up! If she could only walk a day in my shoes where I feel like I have to peel my eyelids open to remain upright. So that's "whats up" lady. I could go on but I will spare you...
3. Cognitive issues are a problem! Right now I can not remember what my #3 was actually going to be, but I know it was a good one! It will come to me... maybe
4. I hate that my nail polish chips the day after I paint my nails....just threw that in there because it really bothers me...
5. Social support from other is so important! I am still working on this one. Planning a possible trip to see my family which will help me a lot!
6. The shots are getting to me. The skin reactions are painful and irritating! When will that end.....um never! Unless I am lucky enough to go on an oral med someday.
7. I am glad I have been diagnosed, but pissed that I could have been on treatment 15 years ago! What were those doctors thinking? The older you are when you are diagnosed the more progressed your disease. Yeah me!
So hopefully if anyone else is reading this they can relate to some of it. At the very least it helps me to write it down! I have a lot to be thankful for and a lot to still figure out an learn. One day at a time people, one day at a time!
So since my diagnosis I started following some different blogs as well reading others personal perspective of their own trials on MS groups. Reading these gave me the idea to do this blog for myself. I have to say it helps. It is the diary I know I would never do using pen and paper! How sad is it that picking up a pen and paper is now outdated and too much effort lol. Anyway, a few good points I have read recently that certainly apply to me and some random thoughts:
1. I am so aware of my body that I get on my own nerves..seriously. Every tingle, increasing fatigue, vision blip causes me to be concerned if it is something to worry about or if it is just normal, a fluke. It is very frusturating to live this way but there seems no way around it.
2. I dislike the office staff at my neurologists! But I love my Dr! So I am staying, but geeze you would think they would be kind and have comapssion considering what their patients are going through. The PA actually said to me "whats up" when I called to tell her about the med that is not working! Really- "whats up"! I'll tell you whats up, I have MS and am trying to manage my symptoms and need your help thats whats up! If she could only walk a day in my shoes where I feel like I have to peel my eyelids open to remain upright. So that's "whats up" lady. I could go on but I will spare you...
3. Cognitive issues are a problem! Right now I can not remember what my #3 was actually going to be, but I know it was a good one! It will come to me... maybe
4. I hate that my nail polish chips the day after I paint my nails....just threw that in there because it really bothers me...
5. Social support from other is so important! I am still working on this one. Planning a possible trip to see my family which will help me a lot!
6. The shots are getting to me. The skin reactions are painful and irritating! When will that end.....um never! Unless I am lucky enough to go on an oral med someday.
7. I am glad I have been diagnosed, but pissed that I could have been on treatment 15 years ago! What were those doctors thinking? The older you are when you are diagnosed the more progressed your disease. Yeah me!
So hopefully if anyone else is reading this they can relate to some of it. At the very least it helps me to write it down! I have a lot to be thankful for and a lot to still figure out an learn. One day at a time people, one day at a time!
Monday, May 13, 2013
My First MS Blog: Nuvigil..not so much
My First MS Blog: Nuvigil..not so much: So last week I broke down and called my neuo for a script for something to help with my extreme fatigue. He sent me some samples of Nuvigil....
My First MS Blog: My First MS Blog: Fatigue
My First MS Blog: My First MS Blog: Fatigue: My First MS Blog: Fatigue : Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a strug...
Nuvigil..not so much
So last week I broke down and called my neuo for a script for something to help with my extreme fatigue. He sent me some samples of Nuvigil. I guess it is a commenly perscribed med for people with MS who have fatigue issues.
So today was my first go round with taking the med....and .....nothing! I still felt tired and exhaused all day! So now what? Wel I guess I will continue to take it this week to see if today was a fluke and then call back for another solution. Sigh.....
On a brighter note I had a great talk with a girl at work who also has MS. I feel so relieved that I have someone I know who I am able to bounce things off of. I was initially asking her about fatigue and this med to see if she had any solutions.
It's very had to find support. I don't mean support in terms of websites or the MS society etc. I mean finding someone who can relate and who you can learn from. Like one of my questions today was "how do you know when you are having a relapse". Seriously, how do you know? That is something I have yet to figure out. Am I having on now because I am so tired? I dont know! There is so much to figure out. Other blogs and websites do help, but sometimes you feel so isolated as if no one understands, and I guess how can they if they don't have MS or know much about it.
One thing I have really been missing is my family. I live really far away from any family support, short of weekly phone calls. And when I speak to my family I certainly don't want to blabber on about my illness. There is more to life to talk about. But I do miss the ability to pop over to moms or stop by my brothers. Sometimes you just need your mom! Maybe a vacation home is in order, however I am positive I would never make the long drive these days in fear of falling asleep or not being alert as I should be. Nuvigil can kick in any time now.....
So today was my first go round with taking the med....and .....nothing! I still felt tired and exhaused all day! So now what? Wel I guess I will continue to take it this week to see if today was a fluke and then call back for another solution. Sigh.....
On a brighter note I had a great talk with a girl at work who also has MS. I feel so relieved that I have someone I know who I am able to bounce things off of. I was initially asking her about fatigue and this med to see if she had any solutions.
It's very had to find support. I don't mean support in terms of websites or the MS society etc. I mean finding someone who can relate and who you can learn from. Like one of my questions today was "how do you know when you are having a relapse". Seriously, how do you know? That is something I have yet to figure out. Am I having on now because I am so tired? I dont know! There is so much to figure out. Other blogs and websites do help, but sometimes you feel so isolated as if no one understands, and I guess how can they if they don't have MS or know much about it.
One thing I have really been missing is my family. I live really far away from any family support, short of weekly phone calls. And when I speak to my family I certainly don't want to blabber on about my illness. There is more to life to talk about. But I do miss the ability to pop over to moms or stop by my brothers. Sometimes you just need your mom! Maybe a vacation home is in order, however I am positive I would never make the long drive these days in fear of falling asleep or not being alert as I should be. Nuvigil can kick in any time now.....
Thursday, May 9, 2013
My First MS Blog: Fatigue
My First MS Blog: Fatigue: Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a struggle let me tell you! I final...
Fatigue
Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a struggle let me tell you! I finally broke down and called my dr. for a script for medication to assist with the extreme fatigue. I hate the thought of taking another medication, but weighing that against a losing battle of complete exhaustion I have no other choice.
It's funny because my dr. has mentioned in the past how important it is to stay active and get enough exercise. I love to walk on my trail, but right now I can hardly walk down the hall, lol. So yes Dr., exercise sounds great, but I am so exhausted I can barely stand upright!
I was speaking to a friend of mine today and she was very smpathetic to my struggle. She likened my fatigue to that of having a newborn where you are so delierious with fatigue you don't know if you are coming and going. Now I have never experienced having children but that does seem like a good comaprison. I am delieriously exhaused so therfore my balance is off, I can't think straight and at times I just feel like crying because I am beside myself. So yes that is how I have seen many of my friends who have newborns! It may be very similar. Maybe I should carry a baby doll around with me to make me feel like I am tired for a reason! lol
The interesting thing is I am now learning from my body when I am going to have days like these because I wake up like this. I wake up exhausted not just tired and its hard to move and think. So these are the days when hopefully this medication will help to give me a boost!
The days are longer, the sun is shining, my sandels are ready to be worn and I just want to have some spunk! I guess it always could be worse! Now time to rest up!
It's funny because my dr. has mentioned in the past how important it is to stay active and get enough exercise. I love to walk on my trail, but right now I can hardly walk down the hall, lol. So yes Dr., exercise sounds great, but I am so exhausted I can barely stand upright!
I was speaking to a friend of mine today and she was very smpathetic to my struggle. She likened my fatigue to that of having a newborn where you are so delierious with fatigue you don't know if you are coming and going. Now I have never experienced having children but that does seem like a good comaprison. I am delieriously exhaused so therfore my balance is off, I can't think straight and at times I just feel like crying because I am beside myself. So yes that is how I have seen many of my friends who have newborns! It may be very similar. Maybe I should carry a baby doll around with me to make me feel like I am tired for a reason! lol
The interesting thing is I am now learning from my body when I am going to have days like these because I wake up like this. I wake up exhausted not just tired and its hard to move and think. So these are the days when hopefully this medication will help to give me a boost!
The days are longer, the sun is shining, my sandels are ready to be worn and I just want to have some spunk! I guess it always could be worse! Now time to rest up!
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