MS and the Effects on my Psyche: Constant Worrying

By Gina Gunkel, Health Guide Tuesday, September 09, 2008

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I woke up on the first “Back to School” day with pep in my step. Yes! Finally, some time alone. After the kids were off, I hopped on my sofa, snuggled up to my dog and grabbed the TV remote control. HMMM, Choices… I scanned the menu and decided on some reality ...

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rwboughton

9/ 9/08 2:24pm

The MS pill is coming (maybe a year away). Hang in there.

Gina Gunkel, Health Guide

9/ 9/08 3:56pm

I really can't wait. I will be first on line. Thanks for the comment.

Lisa Emrich, Health Guide

9/10/08 10:25am

Hi Gina,

So very cool - You have the POWER of the remote!!!

Isn't it odd when you later see someone who you had coached or taught years ago all grow up and successful? I've experienced that with former students and it always makes me feel SO OLD.

We can't have a crystal ball through which to peak into the future, which is probably a very good thing since it might not be pleasant to see. There are just so many uncertainties with MS that we can never really know.

Thank you for giving me something to ponder today.

Lisa

Merely Me, Health Guide

9/10/08 9:42pm

When our life changes drastically, we always think about the life we left behind. I think we all do that to some extent especially as we grow older. I have a friend who uses this phrase with me that we used to be "women of promise." Prior to kids and autism and now MS for me...I was on a career track to keep going to school and get my doctorate degree. But things change due to both choice and circumstance. I believe that everyone is eventually hit with something which will knock them to their knees. MS just happens to be our thing.

It is hard to deal with being reminded of what could have been and for you...so blatently displayed on your tv.

So yeah...it is hard.

Here is hoping for better drugs....ones that we can afford...or better yet a cure!

Gina Gunkel, Health Guide

9/11/08 6:10am

I just woke up, turned on my computer and was greeted by your reply. Thank you so much! You put it all in prospective in one paragraph. I appreciate it. Now I'm off to make some coffee...

awordlover

9/11/08 10:36am

Hi Gina:

Once again, you have hit a nail on the head. The fear of potential symptoms is what alot of MSers weigh in when they are considering a drug therapy. I absolutely believe doctors "use" that fear to sway patients to start on some drug - but the choices they suggest absolutely boggle my mind. What makes one drug more preferable to another by a doctor? Our lifestyles certainly are a primary factor in choices, but I can't stand when doctors push one drug over another. Makes me think that drug reps are pushing certain drugs to docs to get widespread circulation.

I am one of the few MSers who, when first diagnosed, tried alot of "proffered therapies" that (at the time) docs thought would be most beneficial (they are listed in my blog). And then I threw in the towel.

I treat flares with IVSM and prednisone. I have never even given the CRAB drugs a try and don't intend to. Tysabri is being "pushed" at me by my present neuro and I have no interest in starting any MS drugs. After 33 years with MS, I have learned my body's needs and how it reacts to the dis-ease and have adapted accordingly. Of course it is not for everyone, but it is what has worked best for me.

Everytime I have relented and "tried" something a neuro offered, I have ended up worse off than when I started. Nowadays, newly diagnosed MSers are started on a drug immediately.....there is no wait and see. In this day and age, patients want to see a medication offered to them to fix what is wrong...and they want instant results.

Unfortunately, they all come with baggage --- side effects. I already had enough "stuff" going on in my body and after various therapies (plasmaphoresis, long term decadron, various chemotherapies to shrink lesions, IV ACTH for adrenal stimulation, five doses of interferon which almost killed me), I made the decision I would be better off with no "therapies". I researched and researched until I knew every piece of written literature, published and non published, and developed my plan for myself. It gets tweaked from time to time, but it still works for me.

So the what if's do not come my way. I have no regrets in my choices.

Thank you for your post. It certainly stirred me up!! LOL

1/30/10 9:51am

I too, have ms and we changed a lot of things as a family in order to eliminate some stress and manage the fatigue- On the days, I feel bad thinking- "I could have" I have to remind myself to change my viewpoint. Some stuff is just stuff. The things we do are not so important as the people we are and the people we love. We could have been hit by a bus, had a aneurism, or any number of things. So many people who have suffered more than we do, or lost their lives, or didn't get the chance to see their children grow up. We, with MS- get to be here. We might be slow, tired, and unable to attend every event, but we are here! YEA for us! And our children- do not have to go through life without us. So what? We take shots. We can't hike where we used to, or we need to have help doing some things. We are here!!!! Let's celebrate, and be grateful we can raise our children with a positive hopeful can do attitude, despite our "slow" days!

djax59

6/10/10 12:51pm

good attitude- i don't think back-ms wise anyway-i do remember the kids growing up-the good memories-as for today i just take one day at a time ans see what life brings me-sometimes i miss driving a truck and being all over the country but i'm happy in my own little world. i can do what i have to do and just look to the future when there is a cure and i can say good bye to the little friend that has been with me for 37yrs.

MS and the Effects on my Psyche: Constant Worrying

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