What have we learned?

[Frecklebrat]

Hi Everyone,

havenīt been on here much, but much goes on.

the last year and a half, I guess my MS has gone progressive.
itīs been the worst year of my life as I know it.

remembering each moment of it all is not possible.
trouble organizing it all.

instead of thinking of the pains and the illness itself,
yeah right!
i wanted to just say some of the things I have learned from this.

here it is

1) Friends show up in unexpected faces!

2) Copaxone and the like are not for me.

3) Cortison is something I will never do again.
makes me Roidrage for a year. and I mean scary

4) the best icebreaker for telling friends is.....

me- " I have MS"

friend- (stupid look)

me- " itīs something that happens to beautiful people"

friend- (stupid look) or you can add a stupid comment here.

me- " oh well donīt worry, youīre not in danger"

(of course there is alot of ad lib but thatīs the general idea)

5) I trust Neurologists as much as those experts dealing with an atomic meltdown.
there are way too many similarities with the medical field and MS
.....what I mean by that is it just seems they just wanna throw something over it and say thatīs the way to go.
same situation with the way BP dealt with the oil spill.

I know they are trying but if they had their way I wouldīve been last year with all that cortison,
they tried to CONVINCE me I need Tysabri, plasmapharese, Mitox, and and the list goes on.
oh yeah and a test trial!

6)
my mind is clear without the drugs
and I can deal with this condition better with my mind as active as possible without ups and downs from Cortison
or as sick as I felt with Copaxone
as isolated I was in and out of the hospital

Iīve come out of all of this with..
a cane
a clear mind
new friends to replace the ones that werenīt
old friends that have really touched my life in a very unexpected way
and

7) that my husband is the best. Really!

and the last but not least

8) You all here have helped me and my family through this time. I read alot of info here and got alot of helpful advice.
Thankyou all for your insights and sharing your experiences and just for saying kind things to each other.
thatīs it
Thankyou

Wish you all the best and feel free to share!

Peace
ww

[gypsy]

I love this^!

It's almost been a year since my diagnosis. And I guess I was one of the "lucky" ones, as I was diagnosed shortly after symptoms started.

I've learned that....

1. Stairs are NOT my friend

2. My friends and family absolutely love me

3. My stbx husband was not cut out to do for better or for worse. And I'm ok with that

4. Everybody and their mother "knows" someone with MS

[jfledder]

Hi, Frecklebrat. Your post was very encouraging and inspiring! I share many of your thoughts. Here are some things I have learned.

I, too, have the best husband in the world; he's one of the nicest people I have ever known.

I feel better getting off Copaxone and no, thank you, Dr., I will not try any other DMDs or join your clinical trial. I appreciate others who do, but for me, I am choosing to be done.

I will take care of my body by eating healthy foods in moderation, exercising when I am able, and not fretting over the small stuff. I will take each day as it comes and with God's help, live it in victory rather than according to how I feel.

I will love God, love my family, love my close friends, and appreciate these blessings in my life each and every day.

The saying, "I may have MS, but MS doesn't have me," is not just a saying to me. I will live and enjoy and embrace the life I've been given.

Thanks again, Frecklebrat, for starting this thread.

[Lucia]

What have I learned from MS:

1. Docs are not Gods. They make mistakes - lots of them.

2. I'm not God. I make mistakes - lots of them.

3. Don't inject when you're very tired, distracted or just plain pissed off. Wait a while or definitely focus on what you're doing.

4. Take a clue from cats and take lots of naps, especially when you're trying to decide on something, cleaning your house, upset, etc.

5. Only tell people you trust about your MS. Everyone else can take a flying leap you know where.

6. Swallow your pride and use a trike for cycling (if need be). Get a cane or scooter, if you're stumbling. It's a lot less embarrassing than falling.

6. Question, question question. Keep up with the latest developments in MS research/treatments but don't live for that "magic MS bullet". Use what has been proven, suitable for you and available now.

End of rant.