Friday, October 23, 2009

Carnival of MS Bloggers #47

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

Poetry, Positivity, and Battles

Haiku - Caretaker Exchange
by Judy of Peace Be With You


I have MS but
My caretaker broke his hand.
I am caretaker.

Marriage vows promised
In sickness, in health, rich, poor
Partnership defined.

I am nurse and cook
Dizzy, foot dragging, stumbling
A delicate act.


Staying Positive is Hard! 
by Maryann of azoyizes and MS

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?


Haiku - We All Fight Battles 
by Judy of Peace Be With You


No one wants to hear
What is wrong with me today.
We all fight battles.

Mine might seem special.
They are only so to me.
Forgive my weakness.

It’s just that some times,
MS fear seems to trump joy.
My resolve falters.



How I Fight MS 
by Lisa of Brass and Ivory

Today's the big launch of a top secret project which a few other bloggers and myself have been working on for the past couple of months.


I like the concept of living victoriously with MS, because that is what we each strive to do I think. MS is not something we conquer but something with which we can live a positive life.

The other bloggers involved in this project include:
Jen of MS Strength
Julie of Maybe I'm Just Lazy
Kimberly of My Journey with MS
Bill of Plates and Palates

Please tell me what you think. Thanks.


This concludes the 47th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 5, 2009. 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, November 3, 2009.

Thank you.
Comments for this post.

Thursday, October 8, 2009

Carnival of MS Bloggers #46

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

Disability, Poetry, and Superpowers

Are We Disabled?
by Jackie of MSunderstood

So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy.

I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry.

Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy)

Disability is defined by the Americans with Disabilities Act of 1990 as "a physical or mental impairment that substantially limits one or more major life activities.

Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me.

At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems).

What is disability to you? How do you answer these questions?



Poetry: 340 and Music
by Mary at Travelogue for the Universe


Three Four Oh

340

The code

Some one

Thought

Should describe what

I have and others have

And try to describe

By words

And symptoms

As varied

As the colors on a rainbow.


340

The international number

That doctors use

And insurance companies

Cringe at when they see

The number

That means expensive

Meds, treatments and tests

And a person who may not work

Long enough to pay it all back.


340

I looked for wisdom in that number

And some sign

That the number meant something to me

Or those others with what I have

That quirky strange set of symptoms no one can see but me right now

Some day perhaps I could be identified

By wheels or a cane or a staggering gait.

For now I can keep others from knowing

What I have

Is

340
_____________________________________________________
notes: "340" is the International Coding Term for Multiple Sclerosis. It is used for Doctors, Hospitals, billing, etc. In numerolgy it is reduced to "7" which is a very unique number. Am I over googling??? Oh, who cares....mary _____________________________________________________




If you could have any superpower, which would you choose?
A local radio show poses this question in a game called Blatant Stereotyping. From what I recall, the favorite answers are usually along the line of being invisible or able to read minds. Superpowers which seem likely to introduce more problems if you ask me. I'd never really contemplated which I'd choose because, well, it's pretend and I couldn't think of one that didn't serve up its own dilemmas. That is until the other morning.

Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.

Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.

So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.

The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.

Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.


This concludes the 46th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 22, 2009. 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, October 20, 2009.

Thank you.
Comments for this post.

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