Multiple Sclerosis (MS) Support Group
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tarabunnyears
I feel very betrayed.
I see ads for MS medications and the person is skiing or rock climbing and boasting of how they are fighting MS and winning.
Sometimes it is a drug company trying to get you to use their medication and other times an article meant to inspire. But it never inspires me, instead it makes me feel weak and lesser than, because no matter how hard I try, I will never be able to do those things.
I was extremely excited about yesterday, I was taking the girls snowtubing at a local ski place. This, I can handle. No skiing, no walking up hill to tube down as they had a conveyer belt to take you to the top of the hill oh yes, this was going to be a perfect day.
Well, would have been a perfect day if my body had not betrayed me.
I had not even made it down the hill yet, I was just standing in line when I felt it start to happen. The legs they started turning to jell-o. No, this cant happen, I promised my girls a wonderful time. As our turn came to go up the conveyor belt I stepped on and then it got worse. They started buckling, I started to panic. No, they cant fail me. Please God, dont let this happen.
Luckily Allison was behind me so she could not see the tear stream down my face. Why does my body have to betray me like this?
I made it to the top of the hill. The rest I was not worried about. Laying on a tube I can do. And yes it was fun.
After that, me and Hannah found a quiet spot and I sat down in the snow. Let her sit in a tube and pushed her back and forth as I sat there.
I was trying hard not to give into emotions. I just wanted a fun day. A day to relax and destress. A day to give something to my girls. I feel like they miss out on so much because of me.
The rest of the day was a hazy, blur. It took everything I had to just get from point A to point B.
We left, and luckily I was not driving. We stopped to eat and I literally could not eat. I simply did not have the energy.
I came home, crawled up the stairs and climbed into bed. A few hours later, decided to shower, a decision I regretted 10 seconds into the shower, as I started stumbling and falling.
See, I was prepared for muscle spasms trying to ruin the day and pain. It is not easy, but I can fight through pain, but when your legs dont work what can you do?
And the scary part is, you never know how bad it will get. And I just went off my Copaxone, thanks to a &@%$# doctor who refuses to treat me.
I just feel so betrayed by my own body. I try, I do. It just wont let me.
BTW, after the shower, I stumbled into bed. Head pounding, muscles hurting, legs weak, hands tingling, feeling like a failure. I handed Allison the ice pack and asked her to fill it up for me for my headache. She went downstairs, filled it, and gave it to Hannah to bring up to me.
As I layed in bed, crying, I hear her little feet running up the stairs, she hits the top of the stairs and starts calling out, Momma, momma, here you go momma. And she runs into my room, hands me my ice pack, gives me a kiss and says, I love you. She turns and leaves and as she closes my door says, Bye bye momma.
Yes, my body may hate me, but the love of my girls makes me the luckiest person alive
I see ads for MS medications and the person is skiing or rock climbing and boasting of how they are fighting MS and winning.
Sometimes it is a drug company trying to get you to use their medication and other times an article meant to inspire. But it never inspires me, instead it makes me feel weak and lesser than, because no matter how hard I try, I will never be able to do those things.
I was extremely excited about yesterday, I was taking the girls snowtubing at a local ski place. This, I can handle. No skiing, no walking up hill to tube down as they had a conveyer belt to take you to the top of the hill oh yes, this was going to be a perfect day.
Well, would have been a perfect day if my body had not betrayed me.
I had not even made it down the hill yet, I was just standing in line when I felt it start to happen. The legs they started turning to jell-o. No, this cant happen, I promised my girls a wonderful time. As our turn came to go up the conveyor belt I stepped on and then it got worse. They started buckling, I started to panic. No, they cant fail me. Please God, dont let this happen.
Luckily Allison was behind me so she could not see the tear stream down my face. Why does my body have to betray me like this?
I made it to the top of the hill. The rest I was not worried about. Laying on a tube I can do. And yes it was fun.
After that, me and Hannah found a quiet spot and I sat down in the snow. Let her sit in a tube and pushed her back and forth as I sat there.
I was trying hard not to give into emotions. I just wanted a fun day. A day to relax and destress. A day to give something to my girls. I feel like they miss out on so much because of me.
The rest of the day was a hazy, blur. It took everything I had to just get from point A to point B.
We left, and luckily I was not driving. We stopped to eat and I literally could not eat. I simply did not have the energy.
I came home, crawled up the stairs and climbed into bed. A few hours later, decided to shower, a decision I regretted 10 seconds into the shower, as I started stumbling and falling.
See, I was prepared for muscle spasms trying to ruin the day and pain. It is not easy, but I can fight through pain, but when your legs dont work what can you do?
And the scary part is, you never know how bad it will get. And I just went off my Copaxone, thanks to a &@%$# doctor who refuses to treat me.
I just feel so betrayed by my own body. I try, I do. It just wont let me.
BTW, after the shower, I stumbled into bed. Head pounding, muscles hurting, legs weak, hands tingling, feeling like a failure. I handed Allison the ice pack and asked her to fill it up for me for my headache. She went downstairs, filled it, and gave it to Hannah to bring up to me.
As I layed in bed, crying, I hear her little feet running up the stairs, she hits the top of the stairs and starts calling out, Momma, momma, here you go momma. And she runs into my room, hands me my ice pack, gives me a kiss and says, I love you. She turns and leaves and as she closes my door says, Bye bye momma.
Yes, my body may hate me, but the love of my girls makes me the luckiest person alive
Write to the drug companies and tell them how their ads make you feel. If enough people do that, they may change their ads.
Lorrie
Other than that you see a person at their workplace looking all fine & going..."I have pain, this, that & the other" & they don't even show anything about this person being sick, just walking around their workplace. NOT that I want to see an ad where they are in the hospital, but all they are doing is skipping around work listing symptoms & saying, "So Lyrica makes me better now!" CRAP!
I also HATE at the end of medication commercials where they do the "Micro Machines" speed talking thing under their breath really fast, about how this med. for pain is gonna cause all kinds of things like PAIN & every other symptom we have...
UMMMMM HUH?! No thanks! I don't want to pay for a med. to get MORE of the SAME EXACT symptoms I'm getting already!
BUT, I do like "Smiling Bob", he's funny! He reminds me of the "Black Hole Sun" video by "Soundgarden" where they couldn't stop smiling cause of the effects of an eclipse. HA!
Take care,
Stay sane!
P.S...I read this post to my Fiance after a hard day & it made him cry & NO, that ONLY means your post hit home & was REALLY poinent...NOT that he is a wuss...I cried as well. Thank you!
Your kids are the greatest! They seem like they are going to be VERY understanding adults thanks to you. SO in some weird way, you being ill has taught them the real meaning of compassion!
I think the answer is...DING DING DING DING DING...
Give me a prize or let the coins fall where they may, the slot machine coins, that is. Weeeee! I hit the jackpot! HA!
I'm silly today cause I'd rather smile than feel as sick & exhausted as I really do today.
Hehehe...That's hot!...She's a dork! HA!
I want these bed sheets though...
http://www.funnyhub.com/content_images/5883_2942_twister-bed-sheets.jpg