Lately, I have been getting more and more twitches or tremors or nervous jerking spasms. I am a little concerned. I have been off my medication since December and here we are in February and I am getting these twitches that have made themselves more present then ever before.
I thought by now, I would be pregnant, but it's more difficult then I had presumed. All I keep thinking about is how the symptoms pretty much disappear during pregnancy. It's some sort of a natural shield that protects a women.
I look forward to it.
My fatigue sometimes gets the best of me and I find it hard to leave the bed in the morning. It seems to get worse when I have my menstrual cycle.
I really can't complain. I am doing very well. But it sure feels good to write about it and release it. This blog has been very therapeutic for me. My own space to write about myself and how I am feeling that day or to just talk about anything!
I do notice however that the twitches come when I am very tired, so maybe some more sleep is the remedy? I don't know. I guess it's just a part of having this disease.
MS affects everyone differently. Maybe that's just my body's way of saying, "Hello. Take it easy."
So if more rest will help, then I'm all for it. I just hope the twitches agree.
Tuesday, February 3, 2009
Tuesday, January 27, 2009
Hit The Road Cold!
Brrrr. It's cold outside and my MS is not happy. Right now, the weather is in the 20's and I am feeling all of the aches in my hands and knees that come with the cold. We have had countless snow storms the last couple of weeks and I hear that tomorrow we should be getting another 3-5' inches.
That Ray Charles song, Hit the Road Jack, comes to mind, but I keep substituting the words with, Hit the road cold and don't you come back no more, no more....
With spring 2 months away, it seems that I will have to just deal with the cold, snow, icy roads, and aches from my MS. At least I don't have to shovel. That's my husband's job. ;)
Well, I think I have done enough ranting for today. Now back to work I go. But please Mother Nature, if you are reading, cut us some slack and give us a break from the cold at least for just one day.
My hands and knees could use a break.
That Ray Charles song, Hit the Road Jack, comes to mind, but I keep substituting the words with, Hit the road cold and don't you come back no more, no more....
With spring 2 months away, it seems that I will have to just deal with the cold, snow, icy roads, and aches from my MS. At least I don't have to shovel. That's my husband's job. ;)
Well, I think I have done enough ranting for today. Now back to work I go. But please Mother Nature, if you are reading, cut us some slack and give us a break from the cold at least for just one day.
My hands and knees could use a break.
Friday, January 23, 2009
Get Your Walk On!
Well, I officially registered for my first walk to help find the cure for MS. I am very excited! The walk will be on Sunday, April 19th at a park not far from my job. My husband was very proud of me and said he would be honored to walk with me. I hope to raise a lot of funds.
One of my coworkers has really inspired me. She has type 1 diabetes and organizes the JDRF Walk to Cure Diabetes every year. She has raised a lot of money towards research to find a cure and I am looking to do the same for MS!
I've got my sneakers ready and through rain or shine I will walk. A cure is coming soon. I can feel it!
Thursday, January 8, 2009
The New Year
Well, it has been a long time since I have blogged about my MS. Life can come at you fast and suddenly you find that you have no time for the little things.
Today, I want to write about my MS anniversary, which was on January 4. I marked this day in my calendar hoping that I would remember. Well January 4th came and it wasn't until I went to bed that I had remembered that it was my MS anniversary. I lied there in bed thinking about the last 2 years that I had spent with this disease. It was quiet and I was able to reflect on my thoughts.
MS was something I never really thought about until I had a symptom that made sure I was reminded that I had this chronic disease. There was the monthly Tysabri injections that also made it quite clear, but I guess I tried to live my life as if there was nothing wrong with me, which I never really noticed until that night.
Physically, I feel fine, not many problems, thank God, but I realized that pushing this disease away was not going to make it go away. So for the firs time in 2 years, I really felt like I want to be more proactive with my MS life. It's apart of me and I shouldn't shun it away until it's in my face causing me pain, fatigue, and nervous twitches.
In 2009, I want to try and help find a cure for this disease. So, I am going to attend my first MS walk this coming April. I am actually looking forward to it. I will finally be around others who understand what it's like to live with this disease and maybe meet some new friends.
In this new year, I will be trying to have a baby as well. I have stopped taking my Tysabri medication since November and look forward to starting a family.
This year is going to be the start of many new changes in my life. And I welcome the new with open arms.
Today, I want to write about my MS anniversary, which was on January 4. I marked this day in my calendar hoping that I would remember. Well January 4th came and it wasn't until I went to bed that I had remembered that it was my MS anniversary. I lied there in bed thinking about the last 2 years that I had spent with this disease. It was quiet and I was able to reflect on my thoughts.
MS was something I never really thought about until I had a symptom that made sure I was reminded that I had this chronic disease. There was the monthly Tysabri injections that also made it quite clear, but I guess I tried to live my life as if there was nothing wrong with me, which I never really noticed until that night.
Physically, I feel fine, not many problems, thank God, but I realized that pushing this disease away was not going to make it go away. So for the firs time in 2 years, I really felt like I want to be more proactive with my MS life. It's apart of me and I shouldn't shun it away until it's in my face causing me pain, fatigue, and nervous twitches.
In 2009, I want to try and help find a cure for this disease. So, I am going to attend my first MS walk this coming April. I am actually looking forward to it. I will finally be around others who understand what it's like to live with this disease and maybe meet some new friends.
In this new year, I will be trying to have a baby as well. I have stopped taking my Tysabri medication since November and look forward to starting a family.
This year is going to be the start of many new changes in my life. And I welcome the new with open arms.
Friday, August 1, 2008
The Day MS Found Me
It was August. The day was sunny, hot, and humid - nothing too unusual. I woke that morning with a strange feeling in my feet. The best way I can describe it is when your foot feels like its asleep. I had felt this feeling before, but blamed it on poor circulation. This time, however, it was different. When I stood up, I felt dizzy. It was hard to keep my balance...I felt a fatigue that I have never felt before. Was it the flu, I thought.
The symptoms were just too much for me to go to work. I called out and told them I was feeling ill. Well, the only thing I could do was go back to bed. My mom told me, later that day, that she had heard that there was a virus going around. Naturally, I thought thats what I had. For the next few days, I rested, ate soup, and drank ginger ale. Nothing helped. I then began to vomit. No matter what I tried, food would not stay down. I had to go to the doctors.
Well, the outcome of that visit was treated as just a virus. The doc advised me to keep doing what I had been doing all along. I was sent home without any meds. The fatigue was so strong that I could barely stand up for a minute before being too tired that I had to sit down.
It was enough to drive a person insane.
About 3 weeks later I saw a neurologists and she said she thought it might be Multiple Sclerosis. No...it couldn't be, I thought. I went for an MRI of the brain and spine and sure enought the labs showed white spots on my brain and lower spine.
I was in denial. I needed a second opinion and didn't get one until January - 4 months later. I had enough of the imbalance, problems walking and feet tingling.
My new neurologists was more compassionate and understanding. He told me about Tysabri and said he believed I was a good candidate for the medication. After I thought about it for a month, I decided to go on it.
I currently have had my 20th dosage. I thank God every day that I am healthy and that this medication has not harmed me. I pray for a cure soon and have faith that it will happen in my lifetime.
The symptoms were just too much for me to go to work. I called out and told them I was feeling ill. Well, the only thing I could do was go back to bed. My mom told me, later that day, that she had heard that there was a virus going around. Naturally, I thought thats what I had. For the next few days, I rested, ate soup, and drank ginger ale. Nothing helped. I then began to vomit. No matter what I tried, food would not stay down. I had to go to the doctors.
Well, the outcome of that visit was treated as just a virus. The doc advised me to keep doing what I had been doing all along. I was sent home without any meds. The fatigue was so strong that I could barely stand up for a minute before being too tired that I had to sit down.
It was enough to drive a person insane.
About 3 weeks later I saw a neurologists and she said she thought it might be Multiple Sclerosis. No...it couldn't be, I thought. I went for an MRI of the brain and spine and sure enought the labs showed white spots on my brain and lower spine.
I was in denial. I needed a second opinion and didn't get one until January - 4 months later. I had enough of the imbalance, problems walking and feet tingling.
My new neurologists was more compassionate and understanding. He told me about Tysabri and said he believed I was a good candidate for the medication. After I thought about it for a month, I decided to go on it.
I currently have had my 20th dosage. I thank God every day that I am healthy and that this medication has not harmed me. I pray for a cure soon and have faith that it will happen in my lifetime.
Monday, July 21, 2008
Today's the Day
Hello everyone. I am new at this, so please bare with me. I never thought I would actually be blogging about my MS life. I have hid my disease for so long. Not many people know I have this disease. I can count the people who know using my hands. There is my mom, dad, brother, husband, best friend, and 3 co-workers. Eight people. I have a big family so eight isn't a lot. My grand parents, aunts, uncles, cousins etc...don't know. I have been contemplating how I should tell them, but it's very hard.
A part of me, doesn't want to tell them because I don't want them to see me differently. Just going to the internet and typing in MS can be very over whelming. And I know that's what they'll do because that's what I did when I found out I had this disease. I was horrified instantly thinking that my life was over. I thought I was going to be bed ridden for the rest of my life. But soon I found out, through my doctor, care nurse, and others living with this disease that life with MS is manageable.
At this time, I' m feeling good. I have not had an attack in two years. I occasionally feel fatigue and some pain in my hands and knees, but overall I am doing well. I have been taking Tysabri for the last 18 months. I can honestly say that this medication has agreed with me. I have never had any weird reactions or side effects from taking it. This medication is fairly new and is still being watched closely by the FDA . During it's clinical trial two people died from PML (progressive multifocal leukoencephalopathy). A severe progressive neurologic disease that can lead to death. I know what your thinking, why take that chance.
Trust me it wasn't an easy decision, but at the time I was barely able to stand for more then a minute and walking was almost impossible for me. My neurologist told me about this medication and explained very clearly about the pros and cons of being treated by it. I thought about it for a long time asking my dad and husband about there thoughts and searching about this medicine any where I could. I finally decided that I didn't want to feel the way I was feeling and that I could atleast try it and see if it could help. Needless to say, it has. I am grateful for it.
It has brought me back to being me again (I won't say normal life because what is that any way?). These days, I am feeling good and thank God everyday for just being able to do the little things that many take for granted. I don't want to be rich, famous, or a celebrity. I just want to be able to live my life how I choose. And nothing, not even MS, will stop me! I have MS, but MS doesn't have me!
A part of me, doesn't want to tell them because I don't want them to see me differently. Just going to the internet and typing in MS can be very over whelming. And I know that's what they'll do because that's what I did when I found out I had this disease. I was horrified instantly thinking that my life was over. I thought I was going to be bed ridden for the rest of my life. But soon I found out, through my doctor, care nurse, and others living with this disease that life with MS is manageable.
At this time, I' m feeling good. I have not had an attack in two years. I occasionally feel fatigue and some pain in my hands and knees, but overall I am doing well. I have been taking Tysabri for the last 18 months. I can honestly say that this medication has agreed with me. I have never had any weird reactions or side effects from taking it. This medication is fairly new and is still being watched closely by the FDA . During it's clinical trial two people died from PML (progressive multifocal leukoencephalopathy). A severe progressive neurologic disease that can lead to death. I know what your thinking, why take that chance.
Trust me it wasn't an easy decision, but at the time I was barely able to stand for more then a minute and walking was almost impossible for me. My neurologist told me about this medication and explained very clearly about the pros and cons of being treated by it. I thought about it for a long time asking my dad and husband about there thoughts and searching about this medicine any where I could. I finally decided that I didn't want to feel the way I was feeling and that I could atleast try it and see if it could help. Needless to say, it has. I am grateful for it.
It has brought me back to being me again (I won't say normal life because what is that any way?). These days, I am feeling good and thank God everyday for just being able to do the little things that many take for granted. I don't want to be rich, famous, or a celebrity. I just want to be able to live my life how I choose. And nothing, not even MS, will stop me! I have MS, but MS doesn't have me!
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