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.

Intimacy.
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 do....it'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.

Thursday, March 13, 2008

Carnival of MS Bloggers #6 - A Country of Our Own

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


Diane of A Stellarlife bravely welcomes us to


One day in 1990 I suddenly moved to another country. Not knowing the spoken language, not familiar with the foods of choice, and knowing no one else who had ever been to this place; well, I was on my own. The country was called Multiple Sclerosis.

Knowing I was headed there or the island of a brain tumor, I was quite happy to have an MRI expose me to my new path. Winding through symptoms including numbness, foot drop, legal blindness, slurred speech, fingers to feet that stopped functioning, I settled, after 18 years into my current life with twists and turns more dramatic than any roller coaster, comfortably aboard a lift-chair with a 5 MPH power chair poised next to it. I was a long way from Indiana.

First I had to learn the language. MRI, ABC and sometimes RTN, NIH, CNS, RR, PT, OT, AFO, oh dear, hard to learn a new language as an adult, especially when the natives often speak in acronyms.

The cuisine took some getting used to as well: green tea, low fat, lots of fruits and vegetables, high fiber, water galore. Out were my trips to burger land, fried chicken and frozen TV dinners. Oh, and for dessert: stretching with yoga and a thick topping of meditation.

The political system is not that unusual. Doctors, Researchers, Therapists, Pharmacists, all adding their individual ideas for a better MS. We do not vote, but we visit them and choose which ones will represent our needs the best. Sometimes they exceed our expectations; sometimes they drift off point, leaving us adrift as well. Fundraising is ongoing and there never is enough money to deliver what we all want---a cure.

We need not feel alone though, for there are societies, associations, and many groups that offer power in numbers. Thank goodness the Internet thrives in this country and offers engines to take us to many helpful sites. And since any minuscule point on any tiny nerve from the top of our heads to the tips of our toes can be compromised at each moment in time, well, no two bodies ever experience exactly the same physical mishaps; nor, for the same length of time. No wonder the first pilgrims to this country were considered insane.

I guess the most difficult obstacle I had to learn to deal with was the uncertainly of life here. Oh, sure, in Indiana we had 10’ below and snow that stayed for months. Spring would bring tornadoes and the summer brought humidity with 90’ temps that were unbearable. “Just wait and the weather will change,” they used to say; actually that was said in my second home-Seattle, Washington as well. And the same attitude is true with MS. Unpredictable: the concept that defines MS and dismantles the goal-oriented planner like me.

Do not bother looking for a visitor’s bureau; none exists, probably due to having to update brochures so often. (The cause is this; no it’s not. Don’t eat dairy; dairy is fine. It is not inherited; yes it is. This drug is best; no this one is better.) Besides, who would want to visit here? Better to lose your money in Vegas than lose your mind here. Our brains are shrinking, atrophy of limbs sneaks up on us. No beaches for sunbathing or saunas for visitors, the heat will slow our nerve signals to a virtual stop.

Will I fall today or trip over my unresponsive foot? How much will be seen clearly today and will I have the strength to look around? Numbness, tingling, pain and spasticity are always nearby. Weakness, depression, constant worries about the “f” word lurk around every boarded up tourist attraction.

F for future, the fear one dare not say aloud. Jobs are so difficult to keep here. Money is always a concern and no insurance will cover our “pre-existing condition.”

So I decided to embrace my new country, “go with the flow,” “chill out,” “take it one day at a time.” After all, this is my home now. Each day is a new adventure, a new word to learn, a new fellow citizen to meet, a new mountain to climb. Yes, MS is my new home. I embrace the new person I have become and I wouldn’t live anywhere else. Headed this way? Be brave, it is a great adventure.

Next up, meet some of the fabulous residents of MS Country.

Jenn shares some good news, "in the 10 months since my last MRI, there are NO new lesions!!!"
We need to find out what causes this thing, and though we have figured out how to slow the progression, our medical best is still a failure. The disease will still progress. We've come a long way baby, and I am grateful, but we have some exciting challenges still ahead. MS does not discriminate. You can be a young healthy fine woman one day as I was, and the next day my vision was severely decreased thanks to Optic Neuritis, and my world was shaken. I am glad to say that I do not identify myself with MS, IT is not ME. I don't hate it or put any negative energy (that is draining!) toward it. I am just loving my body, and the gift of life, and the nature around me that God has blessed us and revealed Himself to us through. I would LOVE to think that I may be healed, yet I realize for most that does not happen.

The many gifts of life don't always come with just one blessing or one challenge at a time. Often it's a mixed bag. Vicki takes time to relay the major life events of her past year - through a new relationship, strange symptoms, THE diagnosis, relapses, love, an engagement, and a literal moving of house and home.

"A year that has been so hard yet also so wonderfully good!"

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/ chiropractor for my back but no referral to a neurologist.

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!
And do take the time to read the comments which have been left for Vicki. You will find that love often eclipses the uncertainties of life with multiple sclerosis in this new country of ours.

"Anyone who has never made a mistake has never tried anything new." - Albert Einstein

Right on. This is what I've been trying to get across to my son Adrian. He's 9 and learning to read, write, spell and process life with dyslexia. He wants so badly to be perfect, but he can't. So I've been talking to him about how it's ok to not get things right all the time. And it's ok to feel bad about it. The crappy feelings will go away. Keep practicing. As my friend Paul's wife Laura says "Practice makes pretty good!"

Read Trrish's inspiring post at These Pretzels are Making Me Thirsty.

Sharing some great MS moments, newly-diagnosed Kim of Sunshine and Moonlight is reminded that having M.S. can have its benefits. In It's a Good Thing I Have M.S.!, she writes of her comical weekend snow-bound in Northwestern Pennsylvania.

Having avoided the bathtub at all costs since her diagnosis, Kim tells of making nice with her tub in My Bathtub Didn't Eat Me! and introduces what might be the new national anthem for M.S. patients.

And in the true spirit of comedian Bill Engvall, the land of Sunshine and Moonlight explores Here's Your Sign moments for M.S. patients.

Spying the victim of the dreaded Multiple Sclerosis Back Scars on Days of our Lives, the Queen of Mediocretia* of Suburbia says She Looks Great!

Back in '94, five days after my elective insurance started (victorious smug snort of self-satisfaction) I woke up and my feet were asleep. Oh, and I felt like my guts were super-glued together.

"Like a tight band is around your torso?" asked the neurologist I saw seven days after the insurance started.

"Why, yes, it feels just like that!" (Torso band. Classic. Textbook. So unimaginative.)

This all happened in less than a week. I went on a cruise, returned to an MRI and I was back on the medical Fast Track. The secret to the fast track? Have something so obvious even the receptionist can diagnose it.

"Hmm," grunted the neurologist, "I think you might have a mild case of MS."

"Hunh." I grunted in return, as these thoughts went through my head, in this order.

Curious to know what The Queen thought? What exactly are multiple sclerosis back scars? Who has them? And should you ask your neurologist about them?

For these and others answers to the mysteries of our new land, turn to In Which We Mock Our Illness, brought to you by Ellen, The Queen herself.

And finally, a mystery of a different nature...
"Nervonic Acid...Where Did It Go?"
I love a mystery. Don't you?
It brings out my inner Nancy Drew. I feel way more skilled than her though with my statistical knowledge (I teach statistics). So I'm more like a well designed character in a classic Agatha Christie novel....a curious statistician if you like ;)
So, the mystery that unfolded to me in the last year was one that erupted when I discovered the possible death of nervonic acid from a) our food chain and b) our food information chain.
Rather than revealing clues to the mystery as presented by Orla of Great Mastications, I recommend you read her inquiries into the significance of nervonic acid, a monounsaturated omega-9 fatty acid with a molecular structure of C24H46O2 which contains a C=C double bond in the w-9 position.

This concludes the brief tour of our new land, "A Country Called Multiple Sclerosis." Tune in next time...
But WAIT...that's not ALL!!!
We've also got some of our very own grass-roots media forces.

Stuart Schlossman of "Stu’s Views and MS Related News" msviewsandrelatednews publishes an e-Newsletter which is estimated to reach approximately 4000 people per week.
"With time on my hands, I wanted to provide Multiple Sclerosis information to and for, anybody seeking to be empowered with MS information. Remember please that Knowledge is Power and I want all whose lives are touched by MS, to have this Empowerment."

And Charles A. Rovira who is the one and only podcaster - that's like internet radio on demand for those who are unfamiliar - to focus on multiple sclerosis, MSers and creating a positive community of togetherness.
"I have a few hundred shows under my belt. You can pick up the last 100 shows on iTunes and play it on an iPod or other MP3 player. They are also available at MSB Podshow or there is even a player on the page itself at MSBPodcast.com."

Please do go check these guys out.

The next Carnival of MS Bloggers will be hosted here on March 27, 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, March 25, 2008.

Thank you.
Comments for this post.

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