New to this and THANKS!!!!

By khoward

2 min read

Hello everyone! I have to say this is all very new to me. I never thought about writing a blog and definitely never thought about MS. Well, I guess life is truly full of surprises because here I am writing and I have been recently diagnosed with MS (May 9, 2013). I am so worried, frustrated and confused. I am really not sure if what I am experiencing is MS or is every day life (age).

So!!!! What is next? .........

I am afraid and worried for my husband and children (7 and 13). Will they have to take care of me? Will I be wheel chair bound? will I be able to continue to participate in family events.

I am afraid that I will lose my job. How can you teach when you can't remember words- or find the words you need? How can you teach with your mobility failing and changing daily.

I am afraid that when my vision acts up it want come back, that the tingling and burning sensations in the legs wont stop, that I will have to explain to another person that I have MS even when I don't look sick. (ie why I have handicap stickers to those of you rolling your eyes when I park in the spot)

I guess you can say I am just afraid. I know I should not worry about tomorrow and live for today. But how? How do you not stress? How do you enjoy in pain? How do you love when a hug hurts? How do you____? ( filling in your own blank)

I really do love this site because you continually let me see that what I am experiencing is normal. You have helped me through reading your personal stories. I have truly been helped. Thanks to all of you.
I know I will not be healed but I have been HELPED and that is the greatest blessing I can ask for.

Things I have learned:

1. Walk slower but smile more,
2. Distance hugs are just as good as close up hugs,
3. Heat, Copaxone, ice, benadryl and bio freeze are the best,
4. Don't be super women just be you,
5. Swim to relax even when you don't know how to swim,
6. Forget about what others think, do, or say about you,
7. And, enjoy every spoon you have (read the article spoon theory if you have not).

So please keep your blogs coming because I need all the help I can get!!!!!!

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ladylexus Member
Your story really hits home. I understand completely what your saying, especially the part about the handicap sticker. People see you get out & you look healthly & walk fine.(at the moment) I remember one day we were shopping with my mother-in -law & my husband parked in a handicapped spot & she said you can't park here you don't have a handicapped sticker. He gracefully responded Terri has one. She didn't know this because I don't tell people, just because of the reponse or looks I would get.(even from her). People just don't understand unless it smacks them in the face. I really enjoyed reading your story
Laura Kolaczkowski Moderator & Contributor
Thanks for adding your story to the mix - you are right that these blogs help in so many ways. I'm glad you wrote yours. Be sure to check out some of the many stories you will find here at <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> - there are so many themes that will resonate with you. As for not knowing your future - keep in mind you are doing the right things to get there, including being on therapy and facing this monster straight on. The odds are in your favor you will live a long, productive life. ~Laura
lizshad Member
Thank you thank you thank you for this. I feel the same way and haven't been able to put it into words the lovely way you have. I will share this with my family to help them understand how I feel.
lhalvor Member
I don't know if my replies are welcome but I was diagnosed in 1976. The only drugs then were steroids. ACTH was the one I used first by 8 hour IV's. Then came prednisone. I was 23 the first hospitalization and a recent college graduate. It was not an easy path, but I continued to work for 5 years, went back to college for a Master's and worked full-time another 10, got married, worked Part time another 10. Please take hope in the fact that there are disease modifying drugs, and continued research into remyelination. Stay informed as you will be your own best advocate!
tamster Member
I know how you feel I was diagnosed july of 2001 to this day I work 40 hours a week I deer hunt I garden I walk my dogs so im obviously doing well so its not a definite end of the road the day I fo und out I thought I wqs done! You never know how this disease will treat you
nfelton Member
I don't know how I missed this in October when it was written but I did. I am so glad that I clicked on it today in the best quotes story because it touched me and made my day better. I have many of the same feelings and concerns. The fear that my vision will go away and not come back is already half way realized as one of my eyes is useless and no treatment has helped. I hate the fear and uncertainty in MS. I recently had a round of IV steroids and after the side effects calmed down I actually had a few relatively good days and I have to remember to enjoy the good instead of focus on the bad. Thanks for sharing and making my day better!!!!
1. khoward Member
 I am so glad that this helped. Questions- what is going on with the eyes? I am having issues and am wondering what it is? My issue is a pulling feeling and like a blurry unclear vision out of my left.
dxat55 Member
It took me so long to get D's by the Dr's that I had read all the books and self Dx. It was a relief to finally get a sure nuff Dx I just blew past that part of the test as we use to say in school. My biggest hangup has been learning I cannot do the things I use to do. Hence I am moving and walking long past the projected downfall date. They said in 2007 I would be in a nursing home in a couple of years. In December 2012 I was sent to the clinic at UNC @ Chapel Hill, NC and told I was ALL ATTITUDE but whatever I was doing to keep doing it. That my ME I's said it wasn't possible. So attitude has a lot to do with how well you survive this disease. When my Mother-in-law had cancer she taught me a lot about attitude. We live in the South and she would go let's say into the drugstore. Somebody would say Hi, how are you doing today. She would come back with, WONDERFUL Honey, how are you doing? My pharmacist would come back at me ... And you are lying like a rug. Then we would all laugh and go on with life.