Josi's Multiple Sclerosis Blog
I'm a 35 year old woman, blogging my day to day life with Multiple Sclerosis.
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Sunday, April 10, 2011
Been doing some drawings lately
I've been trying to get back into art, but to do so, I need to re learn how to create using my hands the way that they work now. These drawings, up close are a series of scribbles, because to create them, I hold my hand still and move my entire arm. I can't wait to get back into the paints, and hope everyone is enjoying the beginning of spring.
Saturday, April 2, 2011
Home from a week in the clinic, no more narcotics
I'm finally off my narcotic pain medications, which I've been taking pretty constantly since about 2000. My doses had gotten rather high, which made the drugs dangerous to my liver, not to mention my overall well being.
Unfortunately, the only option for pain that I was given at all during my stay was lyrica (which I hate) and tylenol. I'm on a much lower dose of lyrica than previously which helps, and the tylenol takes the edge off, but I must say that my pain is still not controlled, but tolerable so I can learn to deal with that.
I entered the clinic last week with pneumonia, so I had breathing treatments, oxygen etc my first three days there. My medications were switched around, and oddly, since then my fatigue is much, much improved. I'm also not staying in bed all day anymore.
One of the issues addressed while I was there was something that I've been battling for years and that is my depression. It's a sensitive subject for me because I guess my family doesn't get depressed or anything. None of them ever show it or talk about such things. In my family, I'm the crazy one. I've never been able to make eye contact. I've never acted like other people. I was never what they call normal at all. When I was 22 I had to seek help for the depression, because I had held it in for so long that it manifested as anorexia.
I hear that depression is common with ms. I sometimes wonder if it perhaps was an early symptom. Having it looked at, and some medications adjusted has really helped me cope with the hand I was dealt in life.
It's my second day home, and I'm feeling poorly adjusted, but being hopeful. The clinic was a very safe, and controlled enviornment. I didn't have to worry about messing up, or not having support, or being emotionally abused, which is common for me here. I am cared about here, and loved, but, the negativity is difficult to ignore. I just have to remember that the life is always beautiful, no matter how I feel, and all that I have to do is find the beauty, even if it is just the small things. I also have to remember that I am in control of how I feel, and other people can't "make" miserable. I often just choose to be misrable because of the negativity around me. I am trying to change that.
I woke up around 7 a.m. because that was the time the clinic woke me up for vitals and meds. Had my breakfast and coffee at 8 just like in the clinic. The only difference was, this coffee had caffine. Wonder if a little caffine means i'm already slipping up? Hmmm.
I also had a little bit of a flare while I was there. They think it had started a bit before entering the clinic. Now using a walker and starting physical therapy as soon as I can get transportation sorted out. Also going to outpatient therapy for the meds..just waiting to get in and once again, sorting out transport.
Unfortunately, the only option for pain that I was given at all during my stay was lyrica (which I hate) and tylenol. I'm on a much lower dose of lyrica than previously which helps, and the tylenol takes the edge off, but I must say that my pain is still not controlled, but tolerable so I can learn to deal with that.
I entered the clinic last week with pneumonia, so I had breathing treatments, oxygen etc my first three days there. My medications were switched around, and oddly, since then my fatigue is much, much improved. I'm also not staying in bed all day anymore.
One of the issues addressed while I was there was something that I've been battling for years and that is my depression. It's a sensitive subject for me because I guess my family doesn't get depressed or anything. None of them ever show it or talk about such things. In my family, I'm the crazy one. I've never been able to make eye contact. I've never acted like other people. I was never what they call normal at all. When I was 22 I had to seek help for the depression, because I had held it in for so long that it manifested as anorexia.
I hear that depression is common with ms. I sometimes wonder if it perhaps was an early symptom. Having it looked at, and some medications adjusted has really helped me cope with the hand I was dealt in life.
It's my second day home, and I'm feeling poorly adjusted, but being hopeful. The clinic was a very safe, and controlled enviornment. I didn't have to worry about messing up, or not having support, or being emotionally abused, which is common for me here. I am cared about here, and loved, but, the negativity is difficult to ignore. I just have to remember that the life is always beautiful, no matter how I feel, and all that I have to do is find the beauty, even if it is just the small things. I also have to remember that I am in control of how I feel, and other people can't "make" miserable. I often just choose to be misrable because of the negativity around me. I am trying to change that.
I woke up around 7 a.m. because that was the time the clinic woke me up for vitals and meds. Had my breakfast and coffee at 8 just like in the clinic. The only difference was, this coffee had caffine. Wonder if a little caffine means i'm already slipping up? Hmmm.
I also had a little bit of a flare while I was there. They think it had started a bit before entering the clinic. Now using a walker and starting physical therapy as soon as I can get transportation sorted out. Also going to outpatient therapy for the meds..just waiting to get in and once again, sorting out transport.
Wednesday, March 2, 2011
The fog has lifted. No more lyrica for me.
I ran out of all of my prescription medications the other day at once. Suddenly, I was no longer tired, I could think clearly again, and I no longer wanted to die.
I hate to admit it but I didn't want to live any more, but I couldn't talk about it. It may have foiled my plans, and besides, I didn't want to talk about any of it. All that i could so was lie there in bed, wishing to have my old life tback, tortured with constant exhuastion worse than any of the fatigue I have ever felt. I can't believe that I really would have rather died than lived in the condition I was in. Now, medication free for two days, and on the outside looking in, it appears as though the medications helped my symptoms but stole bits of my soul with it.
right now i'm not taking anything. I'm in horrific pain as I'm never taking the lyrica again. I don't know where to go or who to turn to whenever the pain is so bad that nothing can fix it without turning me into a total zombie. I am calling a pain clinic tomorrow. Looking for one today.
for now with medications, i lie in limbo. Insane, tired but not horribly exhausted like before, medication free, with countless ms symptoms coming back and worsening. I am leaping from one hell to the next and need direction on where to turn.
I mostly blame the lyrica. It put me in a cell, a private hell of exhaustion and confusion with the walls caving in and no way out. That's one hell of a side effect according to my friend, Mike. I hear lyrica is wonderful for others... different meds affect us all differently I suppose.
between hells, hopeless yet healing I shall keep you updated . Thank you for takng the time to read.
Hopefully I can find the answer. Have a great day everyone.
I hate to admit it but I didn't want to live any more, but I couldn't talk about it. It may have foiled my plans, and besides, I didn't want to talk about any of it. All that i could so was lie there in bed, wishing to have my old life tback, tortured with constant exhuastion worse than any of the fatigue I have ever felt. I can't believe that I really would have rather died than lived in the condition I was in. Now, medication free for two days, and on the outside looking in, it appears as though the medications helped my symptoms but stole bits of my soul with it.
right now i'm not taking anything. I'm in horrific pain as I'm never taking the lyrica again. I don't know where to go or who to turn to whenever the pain is so bad that nothing can fix it without turning me into a total zombie. I am calling a pain clinic tomorrow. Looking for one today.
for now with medications, i lie in limbo. Insane, tired but not horribly exhausted like before, medication free, with countless ms symptoms coming back and worsening. I am leaping from one hell to the next and need direction on where to turn.
I mostly blame the lyrica. It put me in a cell, a private hell of exhaustion and confusion with the walls caving in and no way out. That's one hell of a side effect according to my friend, Mike. I hear lyrica is wonderful for others... different meds affect us all differently I suppose.
between hells, hopeless yet healing I shall keep you updated . Thank you for takng the time to read.
Hopefully I can find the answer. Have a great day everyone.
Sunday, January 23, 2011
What My Cog Fog and Fatigue are like
Many of my friends with MS also have these symptoms, and I personally, after all that I have been through, hate the cog fog and fatigue the most.
The fatigue feels like a prison, and keeps me in bed and from doing things. It brings down my spirits and makes me feel hopeless and trapped. I don't wish it on anyone, and have been doing everything that I can in my power to fight it, including eating barely anything but miso soup for nearly two weeks. My most recent attempt is my vitamin b-12 patches from my previous post. So far, those seem to be helping greatly.
For me the cog fog, or cognitive problems associated with ms come and go, and usually are accompanied by fatigue. When I have "cog fog", things that people tell me don't sink into my brain, and I feel like a living zombie. I make several mistakes, and can barely think to accomplish anything properly. I have trouble reading most of all, and understanding things that people say to me online when I get this way. It seems to be clearing up now, but has been pretty bad for nearly a month.
My heart goes out to all others with these symptoms, as I know first hand how annoying they can be. I will hopefully be able to do well on the b-12. feeling hopeful.
Vitamin B 12 Patches from online
I haven't been online very much lately, because I have a horrible case of fatigue. When it hits, all systems shut down so to speak. For the past several days, I've been sleeping all but three hours.
So, I ordered these Vitamin B 12 patches offline. They are about the size of a dime, and can be worn behind the ear. I think I'm feeling better already, but too soon to tell. I'll keep my blog updated on the results. I really have my fingers crossed, because today, I've been awake far more, and seem way more alert.
Click here to visit the link to where I ordered the patches from.
Wednesday, January 5, 2011
Had a weird morning, followed by a weird nap, and woke up feeling even more weird.
Today, something odd happened, hence the title. I began this morning by zoning out more than usual. I couldn't manage to stay focused on anything, and I felt very dizzy. I was stumbling everywhere, so I decided to lay down and take a nap. Usually a nap always helps me feel better.
Well, taking a nap wasn't easy, because in the beginning, my youngest ferret, Boogie was attacking my head, and when he was finished, and I finally could relax, it felt as if the bed was spinning, and I was sinking into the mattress. I feel as though I passed out finally, into a dead sleep.
I woke up an hour later, fully refreshed, but when I began to walk, I noticed something odd. My legs wouldn't move properly. They work the same as they did before, but it's as if my brain has forgotten how to command my legs to walk. I am now taking small, shaky steps. I hope this passes soon. It has me feeling a bit worried.
This is just a random picture that I took this past year.
Well, taking a nap wasn't easy, because in the beginning, my youngest ferret, Boogie was attacking my head, and when he was finished, and I finally could relax, it felt as if the bed was spinning, and I was sinking into the mattress. I feel as though I passed out finally, into a dead sleep.
I woke up an hour later, fully refreshed, but when I began to walk, I noticed something odd. My legs wouldn't move properly. They work the same as they did before, but it's as if my brain has forgotten how to command my legs to walk. I am now taking small, shaky steps. I hope this passes soon. It has me feeling a bit worried.
This is just a random picture that I took this past year.
Friday, December 31, 2010
Handicapped Ramp Fails
Today, as a project to promote handicapped awareness, I thought I would share my collection of bad handicapped accessable ramps from around the world. I can't believe people are actually supposed to use these. It just makes me wonder what the people who designed these were thinking.
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