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?

Advertisements
Posted in Uncategorized | Leave a comment

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

Posted in Doctors, Fatigue, Medications, MS, Multiple Sclerosis, Pills | Leave a comment

"Don’t judge me by my past. I don’t live there anymore."

I found the title for this post on Facebook this morning and had an “ah ha” moment right away.

I am always being reminded of my past in one way or another.  Whether it’s a thought, something someone says, guilt, things I wish I hadn’t done, things I wish I had done, and the list goes on. 

There comes a time in your life when you realize that people judge your present by what you have done in the past or was it watching too much of Dr. Phil who would always say that?  But is this really true?  Can you never get past your past?  Do others judge your past only by the ‘bad’ things you did?

People change.  They change their hairstyle, their lifestyle, their friends and relationships, they change jobs, buy a new car, move to a different house, etc.  Change is always happening and hopefully as we get older, wisdom enters the picture.

I don’t want to be judged by my past.  Actually I don’t want to be judged at all.  I want to live my life in the present and if people want to judge me, then let it be the ‘present’ me.

I want to learn from the past but I don’t want to live there anymore!

Want are your thoughts on this???

Posted in Uncategorized | 2 Comments

Multiple Sclerosis Blog: Life with MS

Trevis Gleason
Life with MS
January 20, 2012

Coping With MS: Is ‘It Could Be Worse’ Good Enough?

Note: There is no judgment intended in this post. If “it could be worse” works for you for now, good on you! I do, however, believe that it’s time to address this method of coping. TLG

Whenever I pose a multiple sclerosis question — be it about symptoms, dealing with a bad day, or any number of probes I’ve sent out over the years — I can always count on at least one reply of, “It could be worse.” I have to wonder if that appropriately honors ourselves and others.

“It could be worse” seems like a pretty logical place to begin coping with a less than optimal situation (how’s that for making MS sound like it could be worse?). In fact, when I was in a clinical research study on pain and the mind’s reaction, it was the first thought we were given to stop a negative slide.
When the PhD leading the study told our group (which consisted of a wheelchair-bound man who had broken his neck when he fell from a roof, a below-the-knee amputee/cancer survivor, a Vietnam War vet who lost his entire leg to a landmine, and myself) to use that very thought — “it could be worse” — it was very effective at stopping the negativity from gaining the upper hand.

Always known for my “dark-ish” sense of humor, I said to the doc, “Yeah, a couple of one-legged men, a guy who broke his neck, and someone with MS. . . we’ve kinda got that one figured out. We know it could be worse. Could you give us the next step?”

“It could be worse” is usually followed by (either in thought or word), “I could have _______.” I have to say, as a person who has overheard “It could be worse. I could have multiple sclerosis or something,” that the people living with the diseases we put in that blank space would likely not want to hear you saying you’re glad you have MS rather than their condition.

If we’re to be honest with ourselves, the full thought could be, “It could be worse. It has been worse… and it’s been better. It will likely be worse, and I hope it will be better.”

Maybe it’s just me — and I’m still working though it all — but, for me at least, “it could be worse” seems like a grammar school answer to a graduate school question.

It could be used as a quick conversational diversion to move away from the subject if we are uncomfortable talking about MS. I get that. I’m all about pat answers to get me out of speaking to a topic I’d rather avoid. But is avoiding the topic really getting us anywhere?
I guess I’m also struck by the number of people who think “it could be worse” is a way of thinking positively. If your kid gets a less than satisfactory grade, do we say, “It could be worse, you could have failed.”? NO. We encourage them to do better. To see the positive in a bad grade is to point out the opportunity for progress.

I don’t see the positive in pointing out that we’re only halfway down the well . . .

There’s an old story which I love to use to highlight several points (and several toasts for that matter):

A man falls down a deep hole and cannot get out. His doctor walks by and the man yells up, “HEY, DOC! It’s me. I’m down here in this hole.” The doctor writes out a prescription, tosses it down and walks away.
Then, a priest walks by and our man yells up, “HEY, FATHER! It’s me. I’m down here in this hole.” The priest writes a prayer, drops it in the hole and walks away.
An old teacher of the man’s walks by, so the man yells up, “HEY, PROFESSOR! It’s me. I’m down here in this hole.” The professor jots down a reading assignment and sends it down.
Then, the man’s friend walks by. “HEY, PAL! It’s me. I’m down here in this hole.” The man’s friend jumps down in the hole with him. “WHAT are you doing? Now we’re both down here. . .”
“Yeah,” says the friend, “but I’ve been down here before. I know the way out.”

We have all been down this hole before; some of us are down there now. Let’s not toss a note that says, “It could be worse.” How can we help one another find a different way to cope?
Wishing you and your family the best of health.
Cheers
Trevis

Posted in Life with Ms, MS, MS blog, Multiple Sclerosis, Trevis Gleason | 1 Comment

Small Stuff??

There is a book called “Don’t Sweat the Small Stuff.” If you’ve read this book, you know that the author is telling us not to worry about the ‘small’ stuff that we probably can’t do anything about anyway.

I want to tell you about a ‘small’ thing that most of us (i.e. meaning me) don’t pay attention to. The miracles of nature and life that come alive in the spring.

About a week ago we noticed a robin’s nest outside our kitchen window. There is a light fixture outside the window, a little to the right. Turns out, if you’re a robin, this is the perfect place to build a nest! When you see a nest up close, you have to wonder how all that building material ends up perfectly settled, perfectly round and just deep enough.

Then we noticed one bright blue egg in the nest! When I say ‘noticed’, I mean we had to open the top of the kitchen window and lean out with a mirror to actually see inside the nest. Now we are looking out there every day. We try to be quiet when she is sitting on the nest but when she flies away, we check for more eggs. There was one new egg in the nest each day for the next 3 days. So we are expecting 4 new baby robins within the next few weeks.

Being able to see this happening up close, right outside the window, is absolutely fascinating to me! I know it happens every spring and I’ve seen birds’ nests before – from below, looking up. There is just something about watching this happen that fills me with joy… I can’t wait until the eggs start hatching!

I call this a “small” thing but we all know that it’s really a “big” thing. God planned everything, even down to how the small birds build their nest, lay the eggs, how long to nest, when they will hatch, how they babies will be fed, when they will start to fly. It all happens because God’s “big” plan pays attention to even the “small” details.

Makes me wonder… what other ‘small’ things am I missing?

Posted in Uncategorized | Leave a comment

Love is…

“The Way of Love” from The Message
 (1 Corinthians 13: 3-7)

…So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up, Love cares more for others than for self,

Love doesn’t want what it doesn’t have, Love doesn’t strut,

Doesn’t have a swelled head, Doesn’t force itself on others,

Isn’t always ‘me first’, Doesn’t fly off the handle,

Doesn’t keep score of the sins of others, Doesn’t revel when others grovel,

Takes pleasure in the flowering of truth, Puts up with anything,

Trusts God always, Always looks for the best,

Never looks back but keeps going to the end.
 
Love never dies.

Posted in Uncategorized | Leave a comment

Surviving

To ‘survive’ is to remain alive or existent – that’s it!  To ‘battle’ or contend means to strive against difficulties – that’s it!

Living isn’t about how long we can stay alive, but what we do with the life we’re given to live.  There are bad things that can happen like cancer, chronic illness, loss of a loved one, relationships gone bad… and the good things like raising children, staying married through the good and bad, a roof over your head and food to eat.  Don’t we ‘battle’ (or contend) for the good things too?  Don’t we ‘survive’ (and remain alive) through the good things too?

I want to know what’s going to happen to me tomorrow, next week, next year, in 5 years, in 10 years.  Don’t you??  Guess what?  It’s not going to happen!  It’s not how this life is meant to be lived.  Life changes, curves, goes up and then down, takes a left turn, goes in a circle.  How we ‘go with the flow’ determines who we are.  How we ‘strive against difficulties’ shows our character, our determination.

Life changes… do we wage war or learn to accept it and move on.  Remember the Serenity Prayer:  God, grant me the SERENITY  to accept the things I cannot change, COURAGE to change the things I can, and the WISDOM to know the difference. 

I crave PEACE with myself, my life, my family, my friends.  I’m determined to be STRONG enough to change what I can.  But most importantly, I pray for WISDOM, to know the difference.

I want my life to have a purpose.  I want my life to make a difference to even one person who knows me.  I want to set an example of how to live gracefully with a chronic illness.  I have never asked “Why me?”; the question, if you must ask, is “Why not me?”.  Why should I be different than anyone else in the world who suffers from MS?  Disease or illness is not a punishment!!!!  It’s just life!  It’s something that can happen to anyone… and nobody is READY for it.  But it’s possible to remain alive and existent. How you accomplish that is entirely up to you!

Valerie

Posted in Uncategorized | Leave a comment