Thursday, March 27, 2008

Carnival of MS Bloggers #7 - Creativity Edition

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

Baraka discovers the gift of sight, even as she loses the ability to walk fast in A Storm of Blossoms.

Spring is flirting with San Francisco: a rare Mediterranean day warm enough for pale citizens to dive onto beach sand; followed by one choosing hourly between sun and fog, yet still somehow too warm for wool coats or warm scarves. The body sweats and chafes in layers, then shivers in the nibbling wind.

Trees are bursting into bloom everywhere, but if I was walking at my normal, fast pace I would miss all but the most showy blossoms. I realize that yet another reason that God has slowed me down to a shuffle with this stress fracture is to share that shy tree on the corner, bare limbs just beginning to bud tiny emerald leaves and pearl-sized blossoms.

Fully functioning, I would have swept past unseeing; today, I stood in awe, drawn in by each exquisite detail. Subhan’Allah. I don’t have the choice to walk fast right now, but I do have the opportunity to slow down and see. At a quarter of my usual pace, I’m amazed by how much I usually miss.

Shauna demonstrates a marriage of science and art in Chance Favours the Prepared Mind.

When I was very little, my mother would take me to parks to play. One day, I ate an ant. I just picked it up and popped it in my mouth. My mother was horrified! What if I got sick? So she ate one, too. If I got sick, then she would get sick as well and be able to tell a doctor what had happened.

Of course, neither of us got sick.

I continue to be fascinated by creepy crawlies, no doubt in part to my early education in the scientific method and the results obtained from those experiments [read full post for details]. I have handled all sorts of creatures in the wild, including bees, with no fear, and only a healthy respect for stingers and possible bites. I have never been stung or bitten. I suspect that's only due to luck, not that I'm a sort of entymological Dr. Dolittle.

I pick up worms in the parking lot and put them somewhere safer. I catch spiders and other critters in my apartment (not often) and release them to the outdoors. A month ago, I found a flour beetle larva, in my rice (so maybe it's a rice beetle larva), and put it in my bug container which has a couple of magnifying windows on it. I forgot all about it until yesterday. I took the top off the container and prodded the little thing. It began moving so I put a little flour in there with it and am hoping it becomes an adult beetle.

I have a bug kit I take with me when I'm on the bike. It has a number of baggies and a couple of glass jars in it for specimens and a little fish net to catch the elusive ones. "Chance favours the prepared mind". Of course, Louis Pasteur wasn't thinking about collecting bugs when he said that, but it applies.

I have been known to go to a local gas station late in the evening with a bigger net and baggies. There are some pretty big moths and other winged wonders that hang around the lights and if I'm lucky will sometimes find intact dead ones around the pumps.

"Then what?" you might ask. They go in the deep freeze. And after a couple of days I take 'em out, thaw them, and then mount them. No stale cardboard and pins for my bugs though. I put 'em in clocks, watches, or wooden shadow boxes. It's more artistic. Science and art together.

Read Shauna's full post here.

"Lost in Feelings" - a poem by Herrad

Lost in feelings.
Feelings too strong to understand except to feel more helpless. Hopeless sitting by the kitchen table, its a grey early morning once again confronted with all I can't do. Fucking hopeless feelings of despair floods of tears, Life is all on top of me. Feel submerged. Almost like being stranded except I am still here right in the middle of it all. Yet lost, lost in feeling lost in pain and fear. Still can laugh still can have fun but its all so hard.

Nearly my birthday.
This year I don't really want to know it's my birthday feel too raw. The ms so new surely it could go away for my birthday. Surely ms and birthdays don't go together. Surely my birthday present will be no ms.

Feel like a symptom.
Feel more and more like a symptom not like me. Too involved in bodily processes. How's my bladder today. Can I have a crap? These things once were taken for granted now they are major facts of life. Its no longer what shall I wear today but how often have I been.

Need some intimacy now I have lost closeness of sex. Can't feel sexy safely. Masturbation causes spasms of such intensity that they threaten to throw me out of my wheelchair. These are not pleasant spasms but out of control like the kick of a mule.

Shower time.
It's not fun anymore having a shower. Need help, can't do it alone anymore. First I wheel into the shower it's a narrow doorway and a small steep incline. Steer past the hot radiator. On go the brakes and I heave up out of the chair. My darling quickly whips my knickers down my legs as I fall back into the chair. Legs trembling, spastic as fuck. Over to the shower seat. Heave myself up again and sideways into the shower chair. Spastic shivers through my body as the water hits my body almost can't control it and fall off the chair. With my darlings help I wash and rinse off then get dried. Its all time consuming and painful for us both in different ways. Shower time is not like it was before.

Getting dressed is such fun.
Rage rage rage but that won't put my clothes on. Sitting cursing in my chair. Thrown my knickers on the floor, not me but the spasm in my foot. Lean over to do it again and nearly fall on my head. It's time for help as I realise I can't do it alone.

Using knitting to deal with MS annoyances, Megan shares how forgetfulness can be both scary and humorous in When life throws you lemons stab them with your knitting needles!!
I love knitting, I love it. I love reading about it, I love doing it, I love yarn, needles, stitch markers, row counters, charts, darning needles, blogs, Ravelry, patterns...etc....I forgot how much I loved it and how much I need it in my life. Thanks to Ravelry, I can track projects that I'm working on and set goals for myself of new projects I would like to try. So that's the plan for now. I've currently got a few projects that I'm working on and a few projects that I've got the yarn picked out for. My ultimate goal is this! I know its a little scary but there are a lot of things in life that are a little scary, or a lot scary and I have to constantly remind myself when the self doubt creeps in that all knitting is just made up of two stitches and I only have to work on one stitch at a time.

Another knitter makes a bold move and publicly announces her recent diagnosis in Sheila's *DreaMS Team.
Leading up to the diagnosis were the last six weeks of 2007 (incidentally the first six weeks of my marriage) during which time I tried holistic and non-traditional therapies thinking that the symptoms I was experiencing were probably just arthritis or issues relating to my spine with which I have had trouble in the past.

By the beginning of January, we knew it was something else. That's when we started down the road to a medical diagnosis. My symptoms were mostly sensory meaning that my feet were numb to the touch but worked okay (my right leg got a little weak but it was only like that when I was tired or hot), I had something called the MS hug which felt kind of like a tight band around my ribs, and occasionally, I had tingles in my legs and fingers that felt like they'd simply fallen asleep and were waking back up. For the most part this was more annoying than anything else.

Now we know what we're dealing with.... It's not the greatest thing to have a chronic disease like this but it's certainly not the worst thing either. MS won't kill me or shorten my life. It will mean that for the rest of my life, I'll be redefining "normal" and I can handle that.

I'm nothing if not a tough cookie so I know I will be able to adjust as needed. It is what it is, I will have good days and bad and hopefully will always remember to stay positive.
*Do note that the last two letters of the words dreams are M and S!

Even bolder still and bravely discussing problems of a most personal nature, John-Mark contemplates To Pee Or Not To Pee...
It's funny, when you have a relatively mild form of MS like I's easy to just lie to yourself that nothing really is wrong with you....but then something happens.

I've had problems for the last year or so with my waterworks.... and after months and months of me putting it off, I've got an appointment next week at the Continence Clinic to teach myself ISC. This means Intermittent Self-Catheterisation, maybe two or three times a week, and in layman's terms for those of you out there not familiar, involves sticking a tube up areas that have never seen the light of the sun.

As a male, apparently it's alot easier process to go through, but takes a lot longer tubing for obvious reasons.... Comments made in an understanding way like, "it might hurt the first time, and when you get to the Sphincter muscle before the bladder, pushing it through that might hurt alot and you might pass out" didn't exactly help my enthusiasm for this treatment, but needs must.

I guess most guys wouldn't have a problem flopping out their member in front of a female nurse, but I'm a little different that way, it will be a highly embarassing situation and thoughts of a sexual nature will be the last thing on my mind when I attempt to stick a tube up.... actually never mind the description, I feel nauseous just thinking about it!

Needless to say, I'm not looking forward to it, but I know it will be better for me in the long run, and hopefully be a relief in more ways than one.

- An Extremely Nervous Guy

Diane asks, "Do you remember that anti-drug advertisement with the fried egg? You know the one: "This is your brain. This is your brain on drugs."

This little quilt makes me think of my brain ~ my brain with MS!"

Let’s say those dizzying squares of psychedelic fabric are nerve cells in my brain or spinal cord. Some of them have been damaged by my body’s own immune system. The resulting scars or lesions impede the messages from my brain to other parts of my body. Sometimes these messages (indicated by black sashing strips) get garbled; sometimes they don’t get through at all. In other words, my brain might want to quilt, or walk, or eat soup with a spoon, but if the message can’t reach the appropriate muscles in my body, it ain’t gonna happen!

See those wonky quilt blocks? They represent symptoms I deal with every day: numbness and tingling, poor balance, weakness in the limbs, muscle spasms, fatigue, sensitivity to heat, loss of bladder or bowel control (too much information? Sorry.) Just as each of these quilt blocks varies a bit from the others, my symptoms may vary from day to day. Not only are they unpredictable, they might be totally different from those of someone else with MS.

Let’s see, how can I tie in that big uneven purple border? I know--those strips symbolize my support team: my family, friends, and medical staff. Their vigilant assistance with my personal care and daily needs as well as their unfailing love frame my life.

Boy, I never thought I’d be using one of my quilts as a medical metaphor. I’m just glad it wasn’t Human Reproduction Awareness Week!

Having previously blogged on the issue of Social Security Disability, Barbara encourages a little grassroots activism from those of us disabled and those of us not yet disabled in PURGATORY FOR THE DISABLED.
Seems the MSM [main stream media] is finally answering the clue phone.

Write your lawmakers to speed up the Social Security Disability process and correct fatal flaws in the approval system. Just because you aren't disabled, doesn't mean you might not be tomorrow. I am a prime example of how fast your life can change. Please.

To read Barbara's full article, go here. You will be glad you did.

And my personal favorite because it's beautiful and it comes from my hometown, Steven shows us the Oklahoma State Capital.

The Oklahoma State Capitol held a Red Cross Month event this week. My group held a blood drive in the rotunda area of the Capitol building. I decided to take advantage of the situation and shoot some photos. I think this was my favorite of the day. We didn't see many donors but I think everyone was tied up with the day's events. PR wise, it was a great day, though. And, I got to take some photos so a good day all in all.

The next Carnival of MS Bloggers will be hosted here on April 10, 2008. 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, April 8, 2008.

Thank you.
Comments for this post.


  1. Thank you so much for putting this together. I know it is a lot of work and it is clearly a labor of love. You have a heart for your fellow MSions (is that a word?) and I really appreciate it.
    I'm excited to see how this grows.

  2. Thank you Amy, I do get great enjoyment from putting the Carnival together and I hope others get enjoyment from it as well. This is one of those things which I simply feel compelled to do right now. How it might help others I do not fully know yet, but I hope that it does in any small way.

    BTW, I'm still thinking about your blogathon idea. Sorry I haven't responded yet. I was kinda putting this thing together.

  3. Lisa,
    Another great edition of the Carnival. Just discovering all the other Msers out there who are blogging, is inspiring me to continue blogging. It's like I don't want to get left behind or something.
    So yeah, it's doing good. thank you.

  4. Warm greetings of peace dear Lisa,

    Thank you so much for putting this wonderful carnival together. I am discovering so many fantastic new bloggers through it!


  5. Well done everyone.

    Lisa is it an idea to have a

    mention under the date of each

    edition that you are asking for

    contributions every two weeks for

    your compendium of thoughts and

    experiences of people with MS?

    Love to all,