Carnival of MS Bloggers #113

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

The Diagnosis Game, Power of "Om," and Coping with Challenges

Note: My apologies for delayed publishing of the Carnival. Life has been crazy with plumbing issues, solo festivals, and a personal battle with depression and anxiety.

Limbolanders: Deal or No Deal?

by Laura of Inside MyStory

Howie Mandel has invited you to a special edition of “Deal or No Deal,” where the lovely but scantily clad physicians assistants and nurses present you with the opportunity to walk away the big winner. But first you have to pick the right briefcase containing your prize. Slowly you will pick off the cases one-by-one….

Beginning with the first pick, the crowd applauds when the case is opened to reveal Lyme disease. It’s off the board now – the blood tests confirm you’ve not been bitten by a tick. Whew, that was easy.

The next case you pick wipes a big disease off the board – SLE , no, not the latest Cadillac model, but Systemic Lupus Erythematosus. The audience moans a bit but you tell them that’s ok because there is still lots of big stuff left on the board.

Next pick and the crowd goes wild when you knock STROKE off the board. Such a simple common medical problem, anyone can settle for stroke, and you are sure you are destined for something more.

You press on with the game, being tempted with offers to settle from The Doctor, who is substituting for The Banker, in this special Deal or No Deal episode. Your support team urges you to say no deal and keep pressing on.

The stakes are growing because you are down to just a few cases left … which one holds the ultimate prize? Which one sends you home with the most to show for your efforts?

Oh no! The next case you picked contains Central nervous system (CNS) Angitis, and your neurological deficits can no longer be blamed on CNS Angitis.

To sweeten the deal, The Doctor offers you the opportunity to walk away in exchange for Psychological Counseling for life, and not just group therapy- this is individual one-on-one time with the shrink. You think long and hard, because it is tempting. You know you have depression and you know Howie has also done extensive psychotherapy for his OCD and look at what a success he is…. But you are no Howie Mandel and decide that this really isn’t in your head. After a lengthy commercial break while you ponder the choice, in the end you turn down the offer and keep playing.

The moment of truth has come – two cases left. You know you still have Multiple Sclerosis on the board. The second case contains the most dreaded prize of all – come back in six months. Which one does your case hold? The crowd is hushed and you are so excited with anticipation you can barely keep your legs under you.

Background music begins to play while Howie faces the camera and announces the time is up and you’ll have to return for the next episode to find out how you finish Deal or No Deal.

The Diagnosis Slow Lane 

by Olivia of Chronic

I am in the slow lane of the diagnosis process...
In some ways that seems good, surely that means things aren't too bad right?
I am thankful my cervical MRI showed no lesions!
I had a mental party after this news!
Next, my new neurologist has me set up for another
nerve conduction study and a lumbar puncture. (YIKES)
I am also seeing a urologist because I have had back to
back Urinary Tract Infections and a bladder that seriously has a mind of its own.
Next week the urologist will do some type of catheter test to show more of what is going on with my bladder. He seems to think it is a mis firing of my brain telling the bladder to empty and then it will not empty completely.
We will see.
I am sharing these details because when my symptoms first started I cruised the internet trying to find anyone who had a diagnosis story, I know we are all different but maybe my story will make this road a little easier for someone else.
In the meantime I just have to keep on keepin on.
That means, kids school drop off and pick up, laundry, cleaning house, dishes, dinner, and most importantly loving on my loved ones.
I am still dealing with overwhelming waves of fatigue, spasticity, mental delay, bladder frequency/urgency, numbness, tingling, burning nerve pain etc.
However, the show must go on...at a much slower pace mind you.
My house is not perfectly clean but it is decent and my family and friends are loved.
I continue to do yoga twice a day and meditate at least twice a day.
My whole family loves the meditation music....so there are some good things from all of this.

My prayer for today:
Focus on sending out loving energy,
even when my body is screaming it is too tired or it hurts too much.
Continue to learn how to love my new body.

Hugs and blessings to all!
xo
Olivia

Please Don’t Make Me Om

by msguidedjourney

The Yoga Paintings of Jan Hyde

I had always disliked yoga. I actually really loathed yoga. I just didn’t have the yoga personality. I had things to do, people to see, places to go and you mean to tell me I need to cover myself in a blanket and do Shavasana?  If you have never practiced yoga, Google it. It’s the corpse pose. I guess I didn’t have an appreciation for lying still in a corpse-like posture while listening to meditation music and seagulls.  And the mere thought of oming in a room full of people made me want to snicker because it just seemed so silly.

I first tried yoga in a class that was held above the garage of a woman my sister knew. It was a nice studio and Mary seemed like a nice person, but each week when my mom, sister and I went, I felt more and more stressed. I found that I just couldn’t stand the slow pace; the quieting of the mind. I did the 6 week session and declared that yoga just wasn’t my sport. I tried it one more time at the local Y and the instructor showed up wearing jeans to teach the class and she would actually fall asleep, complete with loud snoring, during Shavasana. The only time she seemed like a yoga “teacher” was the time that I sat silently while everyone else omed their three oms; one to the room, one to the earth and one to the universe. She would look at me and sternly say, “let’s try that one more time.”  Please don’t make me om!

That was about 8 years ago and I had the idea in my head that yoga actually made me angry.  When my MS specialist told me that yoga was a very good exercise for people with MS, I still avoided it for several months. On one of my last rides home from Pilates, I happened to drive by a studio that just caught my eye.  It was an old mill building with a brook running beneath it.  I went online, found the website and saw that the schedule was very flexible. There was no commitment to take a set amount of classes. My friend S had been trying to get me to revisit yoga and when I told her about this studio she tried a free class. She loved the place and assured me that there was no oming involved.  I decided to give it a go.  It was a large, but not too large, stylishly Zen studio, comfortably warm and dimly lit.  I immediately felt comfortable there.  The first class I tried was a Vinyasa Sundown Flow and it was very physical.  I felt challenged in that it required a lot of upper body strength and the instructor moved rather quickly from one pose to the next, thus the flow aspect.   It was nothing like any yoga class I had ever done and while maybe that class was too physical for a beginner, I bought a five class pass and started trying different classes twice a week.

One of my favorite classes is the beginner class on Monday mornings and I find it to be a fantastic way to begin the week.  On sunny days, the large windows that wrap around three sides of the studio, provide yoga mat sized sunny patches that make me feel like a cat in the sunshine.  The instructor is so warm and engaging, I would probably om while standing on my head if that is what she asked of me.  While that was probably an exaggeration,  I have been known to now om on occasion and it no longer feels wrong to me.  Shavasana has become my favorite part of class.  Last night I went to a gentle yoga with mediation class and the instructor went around the class during this quiet time, massaging each students head and using aromatherapy oil to give a blessing on our foreheads.  It felt amazing to have my MS rattled head pampered in such a way.  I have also participated in a work shop that was 3 hours of restorative poses, which essentially was an afternoon of creative Shavasana and was simply amazing.

I have caught yoga fever and I’m not looking for a cure.  Whether or not you have a specific health issue, yoga seems to be an all around whole body fitness routine that not only engages your physicality, but also your mind.  As anyone with MS has experienced, closing your eyes while standing straight with arms at your side results in an automatic swaying of the body, but yoga has improved this for me personally as it is excellent for challenging your balance.  I highly recommend it and suggest that you don’t give up before trying it at several studios to find your comfort zone. May the pure light of your spirit shine and guide you through each day… Namaste.

To spend three coins 

by Dan Digman

All I remember is standing on the basketball court one evening at the elementary school I attended across the street from my home. I was taking a break from shooting baskets, and I caught myself staring at our family’s one-story light green house.

It was the last place I wanted to go.

I don’t recall exactly how old I was, but I was old enough to know the realities of a life lost after earlier in the day I had seen my dad cry for the first time. My mom wept with him and, seeing them both so sad, my brother, sister and I cried too.

Dad had received the call that his brother Jerry – my Uncle Doc – passed away at his home in Dyersville, the town where my dad and his 13 siblings had grown up.

It was going to be a sad night, a sad day tomorrow, and another sad day at the funeral when I knew I was going to see all of my beloved aunts and uncles cry as well. I had never see any of them cry before either.

All I wanted was a free pass.

I just wanted to make this all go away and get our lives back to the place where everything was familiar, comfortable and manageable again. I longed for something to fast-forward me past the sadness of my Uncle Doc’s death to the time where all this dust was settled and life was back to normal.

I realized one day it would be better – time heals all wounds – but I was afraid, and I just didn’t know how I was going to be strong enough to get through this.

And so, in my creative elementary school-aged mind, I developed a revolutionary thought:

What if when we were born, God gave us three coins – free passes, if you will – that we could use at any time in our lives. Three opportunities to fast-forward through a difficult time and pick life back up once everything returned to “normal.” We’d have the memories of the experiences we skipped over, but we’d be able to bypass and avoid the pain, fear, sadness and anxiousness that accompanies such overwhelming situations.

Three coins. But when they’re gone, they’re gone. This meant that you really would have to think long and hard, using them only when you were facing what you felt were truly going to be the most overwhelming circumstances you’d ever face.

With this revolutionary thought, I picked up my basketball and went home to face the realities I was avoiding. I realized that even if I did have three coins, I wouldn’t need to use one at this time in my life. I would be strong. This too would pass.

Through a series of sad days, seeing my uncle laid to rest and seeing my dad and his siblings cry together, each new day thereafter was less painful than its yesterday. Soon the dust settled and life was back to normal. I made it through, even without one of my three coins.

I realize such an outlook was developed by my elementary school self, but I’ve carried the three coins thought with me every day since.

I look back on all the times in my life where I wished these three coins were real. Times when I was afraid, and I just didn’t know how I was going to be strong enough to get through them, such as coping with the deaths of my grandmothers, getting diagnosed with Multiple Sclerosis and living through a previously failed marriage.

Through each of these moments, I had convinced myself that if I had a free pass I would have cashed it in and fast-forwarded through the difficult time. If this indeed were the case, I would have found myself today at 39 years old and without any of my three coins.

The reality is, it would have been wasteful to have cashed in my coins on any of these moments. I stand here today living a life where everything is familiar, comfortable and manageable, even after living through the pain, fear, sadness and anxiousness of events like the death of loved ones, an MS diagnosis and a divorce. And I didn’t need any coins to do it.

At the end of each day, I find comfort in knowing that with or without the three coins, I will receive the strength through my God, family and friends to make it through the challenges and difficulties in life.

Perhaps these are the three coins I was given when I was born – God, family and friends – and these collectively will be available to me in unlimited supplies to help me move forward through the most overwhelming circumstances I’ll ever face.

I often find ways here to incorporate a Springsteen lyric that inspires me in times of need, but here with my three coins, I turn to a scripture reading – Matthew 7:7 – that my Grandma Otten had hanging on a plaque in her kitchen that showed a picture of Jesus knocking on a door:

“Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.”

Whatever your faith or beliefs, I wish you the best in discovering the three coins that will help you along your journeys through life.


This concludes the 113th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 10, 2012. 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 8, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #112

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

Acceptance: Anger, Uncertainty, and Murphy's Law

Get Mad, Get Really Mad 

by msrecess  

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her.

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed ”problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it.

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good.

Lesson learned: I think I will get mad at MS more often.

I Want to Scream 

by msrecess 

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt.  I feel so many things that my initial reaction to them is to ignore them.  I like to think I am pretty good at dealing with problems head on but this one won’t go away.  There is also no end in sight.  It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people.  My mom has MS and it sucks.  It absolutely sucks.  I can’t get a handle on it.  I can’t.  I am admitting it.  I don’t even know where to begin to get a handle on it because it is constantly changing.  There are new symptoms, new emotions, new issues to tackle, constantly new.  They also aren’t my symptoms.  They also aren’t symptoms I totally understand.  They are new terms and phrases.   MS also brings decisions that aren’t mine to make.  They are Mom’s to make.  I have no control over a situation that is infiltrating every ounce of my life.  My lack of knowing what to do is driving me crazy.  I literally sit as my head fills with thoughts and have no idea what to do.  I just want to curl back into my shell and do nothing.  I just want this to go away. I just want to scream.

I Feel the Earth...Move... 

by CJ of my MonSter Stories

Today was one of "those" days - when it seems as though someone might be sticking a probe in random areas of my brain and saying "Watch what happens when I do this!"  It was a very active day for what my neurologist calls "paresthesias", odd sensory disruptions that include tingling sensations and numbness, feelings of vibrations and/or electrical sensations in one or more body parts or my entire body, reduced sensation or heightened sensation.

At times, walking was difficult due to the intermittent numbness of the front part of my right foot combined with the sensation that I was stepping on golf balls.  Because of tingling and incoordination, I couldn't get my thumb and fingers working well enough to  pick up the dime and nickel to use for the parking meter.  Talking on the telephone was a problem because I was getting a shrill sound coming and going in my left ear and then my hearing would be diminished for several minutes at a time.

Sometimes the vibrations were so noticeable that I watched to see if other folks would say anything because I was sure we must be having an earthquake!  While sitting in a chair it felt as if the floor were vibrating beneath my feet and I could feel the sensation go through my body.  I was certain that everyone else had to be experiencing it too.

While preparing for bed, I was standing in the bathroom brushing my teeth.  Suddenly I felt the familiar rush of fatigue and weakness wash over me and it felt as if my entire body, to the core, had turned to Jell-O.  I've learned that it can happen at anytime, regardless of my level of activity, and there is nothing I can do to prevent it, fight it, or stop it.  I must lie down and do nothing...and so...I am.....

(Reposted by permission © Post by CJ Taylor.  Photo from NASA)

Grocery Shopping with MS Meets Murphy’s Law 

by Dave of Dave's ActiveMSers Blog 

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space.

Thanks, Murph, sometimes you aren’t so bad after all.


This concludes the 112th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 26, 2012. 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 24, 2012.

Thank you.

Comments for this post.