Thursday, May 19, 2011

Carnival of MS Bloggers #88

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

laughter, motion, and self-advocacy

from Kaleidoscope Muff
 
I believe that once you’re diagnosed with MS, you land on every MS-connected mailing list. I constantly receive notices about lectures, advertisements about medicines, and magazines. Last week, the edition of MS Focus arrived, and it gave me a few smiles. That was the purpose, actually, since all the articles concerned laughter and its value in sickness. I’m usually a hard sell, but I bought into this theory, and I read nearly all of the articles. There were a few bloggers in there as well, and I really enjoyed reading an MS-related publication.

Then I asked myself, “Self do you really believe that ‘laughter is the best medicine?’” That’s when I realized how long it’s been since I just laughed out loud! Sure I’ll give a little giggle at something funny, or I’ll smile when I feel content (or even to just make others feel happy.) But when was the last time I really had a good laugh? Someone may tell a humorous joke – tee hee. I’ll read something written with a ‘tongue-in-cheek’ attitude – ha ha. There’s a sit com I’m watching – har har. But a really good, non-stop belly laugh? Too long ago…

I can remember, in my past, a lot of times wanting to laugh, and having to stifle it because of my location – usually church, but it’s happened elsewhere, too. I can still visualize that urge rising in me, and bending over to prevent the laugh from escaping. I know the feeling of the tears flooding my eyes because the laugh just wanted a release. Now, I wish I had even those feelings!

I’m not saying I’m not happy – basically I am. I get curmudgeonly over this crappy disease and all the losses I’ve incurred because of it. But my nature, my essence, my inner being is that of a happy soul. I’m just saying that I don’t laugh anymore. I don’t hear/see/feel something hysterically funny and respond by laughing. According to the magazine articles, such laughter can help us physically. So what do I do? Laughter is something you can’t truly fake. It’s either there, or it’s not.

One time, not too long ago, something happened that struck me, and I wanted to laugh. It had been so long since I used those muscles that I got a pain when the laughter began – a stitch in my side – and I stopped at once. Is that it? Do I not laugh because it hurts? I just don’t have the answer.

Am I an oddball? Will the laughter return someday? Is there something wrong with me? Are there others out there, who while feeling somewhat happy, cannot laugh? I need to give this some thought…

Peace,
Muff


The Magic of Motion
from Kate of Dancing with Monsters

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe,  heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.


from Matt's Multiple Sclerosis

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

playing doctor ms multiple sclerosis

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed... Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That's right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn't fair... Doctors spend years going to school so they can get that little piece of paper that says "Yup, your a doctor" but then it's like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it's up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren't killing us....

This brings me to my next point: It's just a piece of paper... All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand... How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says "This person probably should know what he/she is talking about" but like any other class about any other topic you are going to have your students who barely passed, shouldn't have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth... We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these "half-ass" doctors out there.

Now I better stop here to make something clear... I don't mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it's only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue... Mostly everyone I know in fact and it shouldn't be that way... Doctors have a Job and that's not to walk around protecting their ego and insuring people call them "Dr. So and So". No, it's to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It's really not that hard...

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I'm going to have to play doctor half the time then I am going to get what I want ALL the time... I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say "look this this and that didn't work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that" without that doctor shutting me down and ignoring everything I have to say simply because they don't want to hear me playing doctor.

If you don't want your patients playing doctor then don't put them in a position where they feel they have to...

I want to get better and I want to get better more than my doctors want me to get better so I will continue to play doctor until I get what I want and that's ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I'm talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don't Stop Learning!


This concludes the 88th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 2, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 31, 2011.

Thank you.

Comments for this post.

Thursday, May 5, 2011

Carnival of MS Bloggers #87

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

cycles in life and hope

By Mary K. Mennenga

Learning your capable of doing something doesn't mean you should
Time teaches us we aren't as smart as we thought
When we become willing to admit this, that's when growth begins
We no longer need to be told what someone else thinks
The answer to our question is
We begin to seek out the answers for ourselves
To the questions that the answers bring to mind
Creating even more answers that need questioning
As we begin to make decisions about what we believe the truth is
Who we are and what's important to us and why
We learn that each choice we make will change
What choices and options are available to us
It becomes a lifelong cycle of questions, answers
Learning and personal growth making decisions and choices
It's a kind of learning that you learn as you go
So don't judge yourself too harshly
This never-ending cycle helps you become
The person you know you want to be
It's a journey that no matter what you do
Still takes a lifetime to finish


Well coordinated
by Toots of Maybe MS Truth

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.
  • a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.
  • b) Unusually for me, these particular knickers are patterned with red cherries.
  • c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.
I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.


by Maryann of MS and ME


These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.


by Jodi Bean

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the other one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have work the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has MS.

Author Unknown

I changed the last line of this poem to "who has MS." It was written for another use but rings so true for people living with MS. As a social worker and as a person I try not to be judgmental or to make assumptions about people. I often say to myself and/or co-workers "until I've walked a day in her shoes I'm not going to judge/assume." I think it is a good motto to live by.

I don't know what it is like to live someone else's life. Life is different for everyone. Everyone's journey is different. I walk in my shoes on my journey which has been shaped by MS. I can honestly say that it has greatly impacted everything I do and every decision I now make. But my journey is not a sad journey or an angry journey or even a depressing journey. Yes there are bad days and my future health is unknown. But there are also a lot of good days, great days, happy days, time with family, vacations, time with friends, dinners out, sunny days, good books, funny reality tv shows, laughs, drinks, memories, support, love and HOPE.

My journey is filled with hope. Hope that one day I won't walk my journey in shoes with MS. I hope that one day there will be a cure. I hope that I will continue to be strong and happy and motivated. I hope I will never give up the fight against MS.



This concludes the 87th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 19, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 17, 2011.

Thank you.

Comments for this post.

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