Is having a disability different from being disabled?

The dictionary defines 'disabled' as incapacitated  by illness, injury or wounds; whereas 'disability' is defined as to make unable to perform by or as if  illness, injury, or malfunction.

Actually, I had never considered the difference between the two words nor had I ever considered myself 'disabled.'  I do have a disability that makes me unable to perform certain tasks; although after looking up the definitions of the two words, I don't think I would ever consider myself as being disabled.

That being said, most of my MS symptoms are the kind that you can't really see, except that my right leg drags a little.  Those of you with MS that have to live in a wheelchair or scooter, or those who can't leave the bed or the house due to your symptoms would most likely consider yourself to be disabled (I know I would!).

If you have Relapsing/Remitting MS, as I do, you know that MS is considered an 'Invisible Disease' (the "But You Look So Good" syndrome).  A lot of us suffer symptoms such as nerve pain, cognitive issues, fatigue, mood swings, depressions, vision problems, etc that people can't SEE and it can be awfully hard to explain to someone who doesn't have MS how hard it is to live every day of your life with this.  Never knowing from one day to another what that day is going to be like... will it be a good day, a bad day, or a so-so day?

So... do those of you with MS consider yourself as having a disability or being disabled?

May God bless you!!    Valerie

Things I owe to my MS

The following was posted on the MSWorld newsletter:

Owing MS for the person that I have become, left only to wonder whom I may have never been

Owing MS for the lesions that I've learned about never giving up, left only to wonder what might have not been

Owing MS for the people that I have shared my life with, left only to wonder how alone I could have been

Owing MS for all the ways I have been tested, left only to wonder what my limits should have been

Owing MS for all the miles I have traveled, left only to wonder where or when that first step might be

The many things I owe my MS, just to know that I am who I'm supposed to be.


April 2012 Thomas M. Burgess


I like this guys' positive attitude about MS!

I've always wondered 'where' or 'what' I would be today if it wasn't for my MS, have you?

Valerie

Making a Choice

There are many Disease Modification Medication options out there for MSer's to choose from.  Everyone of them has been through years of trials and FDA approved to slow the progression of MS.  Evertime someone comes to me with an alternative medication that 'promises' to stop or reverse the disability of MS, this is what I think:

(from Life at Cripple Creek)
But to make a choice about that you need to understand probability theory.

People who are desperate for wellness flock to the newest treatment that promises relief. The MS Diet, T. Wahl MD's diet and exercise program, CCSVI, statins, and many other offerings are out there. Do they work? Do they arrest or even reverse damage from MS?

I tell myself that the day something comes along that really, truly works to significantly stop or reverse MS it will not be a secret you have to dredge up on the internet or fight with your neurologist to obtain. If it is truly significant people will not be arguing "yay" or "nay" about it. People will not have to convince their colleagues to try it on patients. No one will try to suppress it. If a really helpful therapy is found, one that improves MS symptoms and/or progression in, for example, more than 40% of the people who use it, there will be banner headlines.

And until then we will have to continue to educate ourselves so that we can be aware of helpful options and avoid useless options while experimenting on ourselves in search of the best way for each of us to live with MS.

I couldn't have said it better myself.  I've always thought that if something "outside of the box" was working, everyone would be on it. 

This is just my opinion, what's yours?

Are you sick...

of MS, doctors, taking medications, being tired and too much more to mention?

Today, I am sick to death of doctors who think they know more about me than I do!!

I go to (most likely went to) a pain doctor who has become so suspicous of his patients being or becoming addicted to drugs that he has this huge chip on his shoulder.  Last month, due to a mistake by the pharmacy, my pain meds were reported as being prescribed by a different doctor (which was the doctor that referred me to him in the first place!).  Even though it was a mistake, all of the sudden I must be a drug addict or the fact that I didn't get a refill in October, I must be hoarding drugs! Really?

I didn't realize that all narcotic scripts filled are reported to a database run by the DEA, did you?  Guess what?  That database can never be changed or fixed.  So I went to the pharmacy and received a letter from them that they made a mistake and put in the wrong drs name.  When I went back this month, I kind of expected an apology for making me feel like a low-life.  Geez... how niave I can be!

Instead (if I would stop interrupting him), I received a lecture on how he was just doing his job; three figure malpractice fees; deposition hearings; lawsuits; pressure from the DEA to follow their rigid rules, and that no matter how "nice" of a person he thinks I am, I'm still a potential drug addict. OK then...

I know and I respect the fact that he is just doing his job...  I really do.  Does this mean that because I need to take a narcotic for pain that I will always be lumped in with a group of people that will forever be mis-trusted, suspected, and judged?

Any comments??

Till next time, Valerie