Sunday, November 6, 2011

MS Sucks

Can someone please explain to me how I get denied for Social Security 3 times, but yet going to the grocery store for 30 minutes yesterday has now made my whole left side weak and "buzzing".
I'm 24 years old, and I should be in my prime right now, but instead it's like i'm battling things that I never expected I would be. I feel like my life has been cheated... it's been stripped from me, well what I had planned for my life that is. But MS hasn't just stolen from me... it's stolen from my family.

I couldn't even go on my son's field trip w/ him on Friday, because it was at a park searching for things... and lord knows I would not have been able to do that. But remember, i'm not considered disabled, according to the Social Security Administration. If it weren't for the open book tests in school, i'd be failing all my classes because my memory has gone to shit. I tried to do some simple work outs the other day and collapsed. My house is a disaster.... and I can't clean it. I used to be a clean freak... my house was spotless.. not I just can't do it.

It's pretty bad when I have to get my five year old his own alarm clock, because I can't wake up in the mornings that James is at work, to get him off to the school bus. He is responsible for getting himself up and me..... A FIVE YEAR OLD SHOULDN'T HAVE TO DO THAT.

If it wasn't for my iPad, I wouldn't be able to communicate on the computer like I do... I have "Dragon Dictation" on my iPad, so I can talk and it types for me... I'm glad it has a "blogger" app as well. Basically, "I'm sick and tired of being sick and tired." I can't tell you the last time I went to a family function... not only because it drains me.. but because I hate the "looks" and the speaking to me like I'm a child... "How are you feeling Ashley" ... like c'mon, I might have MS, but I'm not glass... I'm not going to shatter to pieces.

MS isn't the "flu" ... it's not going to go away... I don't think that people realize that the damage that has been done to me from my MS, isn't reparable... it's not going to "get better" it's like a set of stairs going down. If you look at the stairs... I'm at the top being no damage... I have a flair, thats the slope down, then the "step" (flat line) is my remission. You can't go up the down, pretty much. Things might get better, but they will never go back to "normal", whatever normal might be.

I haven't had a flare in over a year, but my symptoms are getting progressively worse. I tend to "feel" and think that I'm not RRMS that I'm SPMS... but it's too soon to tell, I suppose. I guess it appears to others that MS doesn't effect me much, when really it does, I just don't show it. I don't talk about it, till now. I cant grip a pen a lot of the time, I can't remember... ANYTHING... I'm pretty much screwed. Everyone keeps telling me, "I'm too young for this" ... well DUH, big DUH!

The only thing positive that has come from my MS, is the people I have met through MSWorld. I can't explain the feelings I have for my "wide-spread family. I might seem like a 24 year old to a lot of people... but I don't feel 24 in anyway. The sucky thing is, I have all these wonderful people who understand what I'm going through, but yet I've never met them face to face. Because we are all so separated w/ the distance.

That's my vent for now, I'm just tired of people thinking... there is something to help me feel better naturally... or there is a cure out there... or anything. It's my life, it's my health, I'll do what I want with it... don't pressure me to make choices about my life and my health, when you have no idea of what I'm feeling due to my MS.


  1. You're not alone, hang in there and keep smiling! I love reading your blog and can relate to much of it!

  2. How much supporting evidence is your Neurologist providing for you in your appeals?

  3. I hear you loud and clear. This is your disease to do with it what you will. I am 5.5 years in..diagnosed when I was 34. I have lived with the disease since I was mom has it too. She decided early on that there was no hope...she gave was a terrifying thing to watch as a child, now I have my own children looking at me and watching what I do. I decided that I was going to fight as hard as I could. I fight everyday..excercise, diet, gratitude. That is all I have, I believe in the medical world and all of its advances, but I believe just as much in the holistic. The truth for me, is somewhere in the middle.

  4. Ashley!! I love love love reading your blogs! You have a big life in front of you... find some humor. I don't have any idea what works nor what doesn't for anyone but me; yet humor, helps the heart.
    I was dx in June 09, and the first of it was the DOWNER, but now, I took back whatever control I could, whenever I could. Keep positive (even when you think you can't) you have friends.... we are here (heck, all in the same boat!)