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.
Tuesday, January 27, 2009
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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