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 #14 - Independence Edition

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

independence - freedom from control or influence of another or others
freedom - the condition of being free; the power to act or speak or think without externally imposed restraints
personal independence - self-sufficiency, self-reliance, self-direction, autonomy

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
The Declaration of Independence July 4, 1776
Those who won our independence believed liberty to be the secret of happiness and courage to be the secret of liberty.
Abraham Lincoln
In the truest sense, freedom cannot be bestowed; it must be achieved.
Franklin D. Roosevelt
Achieving freedom. What an excellent and empowering view of life. Independence does not quietly happen; it must be cultivated, battled for, and nurtured. Enjoy the following stories of freedom and independence.

Emotional Independence and Freedom from Guilt

Very recently our friend Blindbeard began telling her story of Healing. She has a beautiful way of getting to the heart of the matter at hand while discussing "issues...when trying to come to terms with having MS. They are not pretty, yet I cannot believe that I am the only one who went through some of these ugly stages." She continues with, "consider yourself warned, and if nothing else I hope a few people can relate and hopefully get rid of any guilt they may be carrying around for the things they did at one of the hardest times in their life."

Love Me, Don't Judge Me

There is a good reason why I take it very personally when someone tries to tell me how I should feel or what I should be doing. I don't get angry easily and I don't care too much about what others think about me; but being human, I care very much about what I think about me. I'm sure you know this, but please bear with me as I reiterate some things that are pertinent to this story for anyone who may not have read my older posts.

My diagnoses came as a complete shock, out of the blue, a horrible attack out of no where with very little warning. My early signs I shrugged off as nothing important -- depression, anxiety, a leg being numb from time to time etcetera etcetera. And in that first major attack I lost so much of my life that I valued: doing foster care (my neurologists do not want me to have even one kid because of the stress); working and having my own money; my general health, which had always been excellent; spending my time in the outdoors, fishing, camping, gardening. I cried for a couple of months but after a time when others were not crying as much, or were trying to show a brave face for me, I stopped sharing my pain with them, especially my family as they were just as upset (if not more so) than me. Mainly my mother because she is a nurse in a nursing home and cares for several MS patients that have had the disease for umpteen years without the benefits of the DMDs we have now, so she didn't want me to come to her work and see any of them in case it worried me more.

After the first shock wore off I kept all my feelings to myself and put on a brave face for the world to see. This worked for quite awhile until my fourth round of steroids in less than 10 months. I had just celebrated (?) my first anniversary of being diagnosed and was finishing up my taper of steroids when it all came crashing in on me. I woke up that morning feeling strange. I don't have the correct words for it, I just know I felt so numb and dead inside that I wanted to take a knife and cut myself to see if I could feel it. I fought the feeling and ate breakfast and went grocery shopping, but all I could think of was writing a note to explain why I had to kill myself. I came home, wrote the note thinking it would get that out of my head and finding it didn't help and then I made a series of mistakes. I printed the note and put it on the counter in the kitchen, found an old rusty dry wall knife and a rusty dull razor blade and went to work on my wrists.

Somewhere in the haze I was in, I had a feeling that it wasn't right so I called my mom. She in turn called 911 and my whole family, several police, firemen, and EMTs swarmed my house. I cut my wrists up and down and back and forth, crisscrossed and every which way I could. If those nasty rusty things were not so dull it would have been even uglier than it was. There was blood all over my clothes, the kitchen, and me. My memory becomes very hazy after I started cutting myself. I know I put my hands over my face and wouldn't look at anyone because I felt so worthless and useless that I couldn't look anyone in the eye.

I ended up being tossed into the loony bin and had 5 days to cool my heels and think about what I had done. I had to go before the Mental Health Review Board to show that I was no longer a "mentally ill and dangerous person." They shackled me (as if I could run away!) and that damn note I wrote, that was meant only for family to see, was pulled out over and over and over again. I got so angry from always having to talk about it, I told one of the counselors to just publish it in the newspaper so the whole town could read it and talk about it. In the loony bin I decided that I was no longer going to pretend to be/feel anything that I am not.

Nature has a way of healing us whether we think it will or not, and I decided that I was just going to be me and let nature do her thing. I will never, under any circumstances pretend to feel anything other than what I am feeling. I know it was the steroids combined with my hiding my true feelings that pushed me over the edge that day. That is why I don't like people telling me what to do or how to feel. I will get there in my own sweet time, and trying to force it is not healthy. Instead I am embracing my emotions and enjoying the way nature works on a damaged soul. I am intrigued by the healing process; it is such a myriad thing and so unpredictable. But in a life that is so routine I want to scream and run away some times, I welcome the ups and downs and realize that we all grieve in our own way, and it is always best to let nature do her thing and not let others tell you how you should be feeling. I wish I had known that earlier -- my wrists would be a lot prettier.

Freedom of Laughter

Physical Independence on Wheels

Browsing through the blogrolls of MSers, I discovered a new-to-me MS blogger, Retired Waif, who writes with sarcastic humor and dry wit, often with colorful language. I think it was this statement which sent me reeling in laughter - "People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one."

Why YES, this IS in fact the hill I want to die on.
So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible. This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and I can now do things other than clutch my husband’s arm all day ...

Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at

Here’s a brief summation of a few of the incidents I mean:
The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.

Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”

“Oh, thank you so much, that isn’t necessary,” I tell her.
“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.

I couldn't really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.

After she’d finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.

No.
I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself.

Yelling. Screaming.
People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”

You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

A Dream of Financial Independence

In January on Brass and Ivory, I posted about the cost of MS injectable medication. Only a few months later, the numbers need to be adjusted. Substitute $8000 for $7000 and $2000 for $1750. Imagine - one ounce of medication costs $2000. Unbelievable.

The value of money or the value of health - What do you see?
What does money look like to someone with multiple sclerosis?

This is what $7000 looks like to me....120 pre-filled syringes...120 mL.
Four months worth of daily self-injectable medication.

One syringe = 1 mL

120 mL = 4 ounces

1 ounce = $1750

But it won't pay the bills nor would it pay for an Italian vacation. You might look at it like an investment in future health and mobility. Put the money in now and hopefully reap the benefits later if all goes well.
This is what $7000 looks like to most people....$7000.

It could be used to pay the mortgage, to purchase a new french horn, or to provide for that Italian vacation. But for someone with multiple sclerosis, it likely goes to pay for out-of-pocket healthcare expenses.
Although I have a private, individual health insurance policy with a major carrier in the Washington, D.C. area, I still have to pay this $21,000 annual expense for a single medication designed to slow-down the MS disease progression. It might work, it might not work. I can only hope it does.
My insurance premiums now cost approximately $3500 each year, but the company still will not cover my medication in full. It will payout $1500 each year for medication, but the rest is my responsibility...my cost.
But what if you don't earn enough money to be able to spend an extra $21,000 each and every year in the hopes of avoiding some level of disability in the future?

Well, the patient contact organization created by the pharmaceutical company (in this case Shared Solutions) refers your case to their benefits investigation team. This team will also run a quick search for government programs in your area for which you might qualify.

What if your state or locality does not have a pharmaceutical program which will cover this medication?

Then your case is referred to the National Organization of Rare Disorders, Inc. (NORD) who administers the prescription assistance program for Copaxone/Teva.

What kind of information does NORD require?

Recent paystubs, federal tax return, 3 months of bank and investment statements, and a signed application form verifying assets, income, and expenses. If you are not single, all of the above information is also needed regarding your spouse.

What does it take to qualify for help in paying $21,000?

Well, what I do know is that with an income of $27,000, a single 37-year old female with some money in retirement and savings might qualify for a 25% award equal to 3 months of medication provided by NORD.
When that same single female, at age 38, earns an income of $19,400 (less than 200% federal poverty level), she discovers the magic threshold at which NORD will provide 100% of the $21,000 medication.

Ironically, today as I have prescription costs on my mind, I received the reapplication form from NORD. Within the letter accompanying the application, NORD reminds us -

"As the Program is one of last resort, we must remind you that continued participation in the program is not guaranteed. Also, allotments awarded may vary from year to year as they are based on dosage, financial need, and the relative size of the Program itself."

Nothing is guaranteed...and each year this now 39-year old female must submit all her financial information for evaluation.
How truly needy is she and how deserving of a helping hand?
It's a numbers game really. As a self-employed person, even I don't know exactly what I've earned until I sit down at year end and calculate all deposits and all expenses. But I did calculate once that I would need to gross an additional $30,000 to be able to pay the $21,000 (plus increased taxes and SEP contribution) and maintain the same take-home pay.

Anyway you look at it, that $7000 worth of medication is an expensive forfeiture of $10,000 earning power and the future financial security that the $10K might provide. I feel as though I have to give up alot in order to gain some hope of slowing this MonSter down.
How do you view your medication?

I dream of never having to examine my medication in this manner. That would be freedom indeed. What about you?

This concludes the 14th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 17, 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, July 15, 2008.

Thank you.
Comments for this post.

Carnival of MS Bloggers #13

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

“If a person who indulges in gluttony is a glutton, and a person who commits a felony is a felon, then God is an iron.”- Spider Robinson

God is THE Master of Irony 

by Shauna

Many many years ago, a friend (George) at university introduced me to the writings of Spider Robinson. The man is very funny and insightful and punny. Makes for a very good combination. So I enjoyed everything he wrote. Then I read Mindkiller. The second chapter of Mindkiller had actually been included in an anthology of short stories. The story was called God is an Iron.

When I first saw this title I thought "iron:anvil". Then I thought "iron:something to remove wrinkles". But God is an anvil or God removes wrinkles didn't make a lot of sense to me. So I decided to read the story to find out what it meant. And boy, was Spider right. God is THE master of irony.

All this is to simply set up how I found out I had MS.
In January, 1998, my (ex)husband and I went on vacation to Quebec City. During the height of the big ice storm, no less. I wanted to go to St. Ann de Beaupre to send my grandmother a postcard from there. If you are Catholic you probably know about the place. It is a shrine to Saint Anne, the mother of Mary, grandmother of Jesus. People have been going there on pilgrimages for ages to seek relief from physical ailments and afflictions. My grandmother had been there in 1939 (she had polio as a child that left her lame). I knew she'd appreciate that we had made a stop there.

The church that is there is really a gorgeous piece of work. We went into the church and were the only ones. We walked around, admiring the structure, the tiles, and amazed at the number of crutches, canes, and orthotics that were tacked to the front pillars, left behind by people who had been "miraculously" cured.

The next day, as I was brushing my hair, my right arm felt kind of weak. And I was tripping over my right foot.; I was having trouble holding my toothbrush and even writing. We returned to Halifax and I went back to work, but went to see my family doc about the increasing weakness. She told me to come back if it got any worse and she would try to get me in to see someone. Two days later I was back in her office and she was on the phone to a colleague who saw me at the hospital that afternoon. At 5:45 that evening the neurologist was telling me I had MS. A couple of hours later, I was telling my parents that it was a little ironic that my symptoms began the day after I had visited St. Anne de Beaupre. And that's when it hit me.: God really IS an iron.

My grandmother received the postcard and just loved it. But the entire family was sworn to keep from her my diagnosis. She passed away a year and a half later and I like to think she passed into heaven dancing a Sottish jig and then, upon discovering I had MS, giving God a piece of her mind about that. My grandmother had a wonderful sense of humour, but I doubt she would have appreciated the irony.
"I went to St. Anne de Beaupre and got afflicted." - Shauna

Sometimes the MS journey is smooth, other times bumpy. Sometimes it is scary. Sometimes it is frustrating. Sometimes it is humbling. Many times observations of how an individual handles the bumps along the way, mentally and physically, can become inspirations for others. What follows comes from one such moment.

While having a moment...., Linda of BRAIN CHEESE penned the following poem. I thank her for giving me permission to shed a few tears of my own.

Barbie & The Milk Proverb
Let me cry
Over my spilled milk.
It is not the milk
I grieve,
But loss of
The simple act of
Pouring
Liquid into cup.
How I take for granted
What used to be
Mindless tasks
Of rote memory.
My flesh no longer
Feeling the smoothness
Of the cup
Beneath fingers
Weakened by disease.
These foreign appendages,
Stiffly positioned
Like arms
Hanging from a
Plastic doll,
Serving no purpose.
Barbie has no brain
To bring these
Hands
Back to life.

At BARBARA'S TCHATZKAHS, one can find important topics and articles highlighted by Barbara who often adds a personal touch. Here is one of those posts in which she asks the question - "Why Doesn't My Doctor Know This?" and finds a possible answer an article by Dr. Holtorf which she republishes on her blog. Go there to read the answers.

I found this out 12 years ago when trying to get a diagnosis other than "its all in your head" for the reason I was: paralyzed at the time on the left side, unable to eat, in excruciating pain that defied words, unable to walk more than 2 feet without falling over, and running a fever that would not go away.
When a doctor who knew what she was talking about looked at the already done CAT scan and blood work? My diagnosis jumped out at her. She was appalled that it was missed but not surprised.

Other doctors? Dismissed it as nothing simply because they didn't understand it or were uninformed.Because they were uninformed? stupid? unwilling to deal with a chronically ill patient? pressured by the insurance companies to get rid of chronically ill patients? or all of the prior?

Top Ten Things to Do Right After Being Diagnosed with Multiple Sclerosis 

by Diane J Standiford

The following suggestions are from a person (me - Diane) diagnosed with MS in 1990. They got me through the first days and continue to help me thrive while under the influence of this chronic, progressive disease with no cure. The rare cases of MS will be benign or rapidly progress downward; but the chances of YOU having either of those cases is as likely as winning the lottery. The following suggestions are for all the rest of us. Together we will make it through and just maybe find beauty where we never dreamed it might be.

• Do not PANIC. Life is full of bumps. This will just be another one and you will land safely on the other side.
• Rejoice. You do not have a brain tumor. MS will not kill you.
• Grab some MS brochures on your way out of the neurologist’s office.
• Call your friends, and loved ones and explain what you found out. They will follow your lead from here on out.
• Start learning about multiple sclerosis. Learn to spell it. If you have a computer, begin looking for MS information sites like the National MS Association and your local MS Society. Search MS Blogs for personal stories from people just like you.
• Reach out to people for help dealing with this new part of your life. There are social workers, occupational and physical therapists, naturopaths, all waiting for your call.
• Talk to you. What is your biggest concern? Make a list. Prioritize and begin to take action. There is no concern that others with MS haven’t had, and know that all can be handled without the world stopping from spinning.
• Write in large print on a large poster board: “I will be flexible.” (This will be necessary both physically and mentally) and “I can be certain that nothing is certain.” That is especially important for type-A personality types. You can still feel certain (of uncertainty) and you can stay in control. (Of your knowledge that you no longer have control of your body.)
• Prepare. Prepare yourself by accepting all your new physical, emotional, and mental changes---women, recall when you got your first period; men, recall when your facial hair first needed shaving---you got used to the new you. You accepted the changes because they were not going way anytime soon. Prepare your family, friends, and co-workers; educate them. I know this is controversial; but sooner or later you will need their help. This leads to…
• Become an opportunity for others to become more loving and giving.

Thank you Diane for such great advice. And while navigating the bumps, I hope that you are also out there living life. On a recent Saturday I enjoyed living despite my fulltime companion, Multiple Sclerosis.

To combat fatigue, I used my handicapped placard and took a long nap between events. My Sweetie and I arrived at the second event of the day more than an hour after it had begun, but that was fine. Sure I got so fatigued in the evening that I could hardly stand steadily, but that was not a problem (although I was winning that 2nd game of pool after having won the first one too - darn MS). We left the party early, but so did those who followed right behind us.

Flag Day, Graduation, Ethiopia 

- A Day in the Life of Lisa Emrich

The “Stars and Stripes”, the official National symbol of the United States of America was authorized by congress on that Saturday of June 14, 1777 in the fifth item of the days agenda. The entry in the journal of the Continental Congress 1774-1789 Vol. Vlll 1777 reads “Resolved that the flag of the thirteen United States be Thirteen stripes alternate red and white: that the union be thirteen stars, white in a blue field, representing a new constellation.”

[from The National Flag Day Foundation]

This morning I attended the graduation ceremonies for one of my high school horn students. She had received an award and each year the recipient of that award is invited to perform at graduation. So a brave hornplayer, Leslie, followed the valedictorian's speech and the commencement speaker by performing Eugene Bozza's Chant Lointain for Horn and Piano. I played the piano part. She rocked!!

One interesting thing that I noted occurred near the beginning of the proceedings as the choir sang the National Anthem. All heads were directed at the humongous flag hung on the gymnasium wall, but maybe only a third of the attendees had hand over heart. Not even all of the faculty members made this small gesture. Perhaps observing whether someone places his right hand across his chest has become less a symbol of patriotism and more one of cultural indoctrination. I think that it has less to do with respect than it does outward signs of conformity.

A second interesting tidbit came during the invocation. First an official school invocation was read; it was also printed in the program. Then three students read verses from three texts. One young man chose a verse from Joshua in the Old Testament of the Bible. The verse chosen by a second young man was recited in the original Sanskrit before he provided the translation. Then a young woman recited a Hebrew verse and it's translation. An inclusive collection of faiths and beliefs represented.


Then the kicker. As the Head Master, this is a private school, was sharing bits about the graduating class he mentioned all of the college applications, all of the acceptances, all of the honors and scholarships. But the one he saved for last was the announcement of a senior who had been presented her commission to attend the United States Military Academy at West Point.

That honorable graduate is none other than my horn student, Leslie. Way to go girl!!

In the afternoon, my Sweetie and I attended a graduation party for the son of one of his co-workers. What a party that was! Wonderful bounty of Ethiopian cuisine, including a traditional honey 'beer' made fresh by the host. Did I mention food? Lots and lots of food.

Later in the evening - I believe many guests were staying the night - we shot some pool and enjoyed music of which neither of us understood a word. The father of the graduate played some music videos in the background which showed copious examples of traditional Ethiopian-style dance. Well, can you see where this is leading?

A drink (coke) was taken out of my hand while I sat in a cozy armchair and I was recruited to join the dancing. OK. I don't dance. Never have really. But many, many, many eyes were on us in that grand basement. So I did my best at replicating the shoulder-shrug/shake and arms bowed just so of a native Ethiopian woman. Out came the video cameras I'm embarrassed to say and much laughter bounced around the room. I even grabbed my Sweetie to share in the embarrassment. I'm afraid their friends and family will be talking about the party during which the only non-Africans joined the dance.

Now tell me honestly. Does it matter that in one day I celebrated American patriotism, Christian scripture, original Hindi Sanskrit, Hebrew Torah, and the fellowship of a mix of Muslims and Christians? Such is life near the Nation's Capital.
T

oto. We are definitely not in Kansas, I mean Oklahoma, any more.

This concludes the 13th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 3, 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, July 1, 2008.

Thank you.
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Carnival of MS Bloggers #4 - Valentine's Special

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


Today is Valentine's Day -

A day of flowers and hearts,

chocolate and cupids,

gushy proclamations and

tender whispers of devotion.

In other words -

A Day of Love. Love for your sweetie and love of yourself.

So what's the first thing that comes to mind when you think of romance?

Really? Are you sure?

See, I thought you'd say sex. Hmmm. I'm usually a pretty good mindreader.

In honor of Valentine's Day, Shauna starts off the week discussing a couple of sensitive subjects - Penis, Vagina, and Breasts - in addition to SEX. But what does a discussion of sex and sensations have to do with MS?

"One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you?

For more, you simply must go read Shauna's post. It may not be pornographic, but it is certainly titillating. (Side note: Shauna claims that discussing sex is a sure-fire to increase blog traffic. I guess we'll see if she's on to something.)


Sex isn't the only subject appropriate for Valentine's - the love of friends and family is often irreplaceable.

Diagnosed the week before Thanksgiving in 2007, Daniel discovered just how "one man's struggle became a rallying point for dozens of others."

"I knew I had to tell people, but I didn't know how to do it. How do you tell people that you have known for your entire life that you have a life-long illness with such a stigma attached to it? How will they react?"

"My friends and family demonstrated shock, fear, sadness, love, perseverance, compassion, disbelief and just about any other feeling that one can experience upon hearing such news."

"One of the most difficult times in my life was met with so much love and an outpouring of emotion that it was incredibly overwhelming."

Daniel chose to tell others about his MS early on and received wonderful emotional support from friends and family. But how do you decide to share your diagnosis with others?

There comes a time when each person contemplates the big questions - "Who do you tell, when do you tell, why do you tell others you have MS?" - as discussed recently by Lisa.



A common symptom of MS which the books don't often discuss is GUILT. What do you do when faced with "MS and Broken Vows" as Mandy shares.

I vowed once again that it wouldn’t happen. Once again I broke those vows.

I vowed NOT to feel guilt at having MS, or for relapsing.

I vowed NOT to apologize to my husband for my MS.

I vowed NOT to speak of MS every day.

Five years into MS and I still cannot keep those vows.

A loving message for Valentine's Day from Mandy to her husband Jake.
More at MSMaze...


Multiple sclerosis becomes a lifelong companion - one which is always there for you even after you've both lost touch. But can we really ever forget about MS?

Searching for a solution to nighttime bladder problems, Kim may have found a practical solution - ear plugs. Curious? read more...


On this Valentine's Day when your partner snuggles up close and wants to know more about how you feel, or what exactly MS feels like, start with the question - can you imagine? Here's one of Joan's excellent examples.

"Have you ever had your leg fall asleep? Then you are familiar with that 'pins and needles' feeling. It usually passes once circulation is restored to the leg. Now imagine having that 'pins and needles' feeling in both legs constantly."

Continuing the sharing theme, Callie shares her list of annoying MS damages. Why an itemized list you ask? Just because she felt like it. Maybe you will see a part of yourself in her descriptions and know that you are not alone in this journey.


Choosing to view multiple sclerosis and his life experiences - no matter how devastating - as a gift, Chris discusses differences between a vocation and an occupation. Chris is the author of "Life Interrupted-It’s Not All About Me."

"By sharing my actual experiences with chronic illness and divorce I hope to provide others with the knowledge, awareness and understanding intended to help them avoid making the same relationship-destroying mistakes that I did by dealing more positively with the emotional and physical stresses put on a relationship when life is interrupted by chronic illness or disability."

Finally, in response to our recent discussions of love, depression, and loneliness, one reader shares valuable advice on choosing a Therapy Doc, or is that Dodo Bird? Thanks Doc.


The next Carnival of MS Bloggers will be hosted here on February 28, 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, February 26, 2008.

Thank you.
Comments for this Post

Carnival of MS Bloggers #1

Welcome to the new Carnival of MS Bloggers, Edition No.1

I'm excited about the many MS Bloggers who have responded to share their stories and invite you to visit their blogs.

So sit back, relax, curl up with your computer and a favorite beverage. Enjoy.

¤¤¤ Multiple Sclerosis ¤¤¤

Joan Wheeler presents her 13-year journey from initial neurological event to eventual diagnosis in My Multiple Sclerosis e-Book. This is her story (which I thoroughly enjoyed reading.)

Joan blogs at A Short in the Cord and reminds us that everyone with MS has very different experiences and thus has his own story to share.

¤¤¤ Opinion ¤¤¤

Writing at Self-injecting Chinese Hamsters since 2007, a newly-diagnosed MSer, simply known as -A, short for Anonymous, presents Why Baking Cookies is Not Going to Cut It.

Building on Susan Sontag's legacy in terms of analysis of illness, specifically "Illness as Metaphor," -A takes a brief, first look at MS and how it, like cancer for Sontag, has come to serve as a trope for various contemporary social "evils."

An Excerpt from Susan Sontag's Obituary

(via Los Angeles Times Dec 28, 2004)

In 1976, at 43, Sontag discovered she had advanced cancer in her breast, lymphatic system and leg. She was told she had a one-in-four chance to live five years. After undergoing a radical mastectomy and chemotherapy, she was pronounced free of the disease. "My first reaction was terror and grief. But it's not altogether a bad experience to know you're going to die. The first thing is not to feel sorry for yourself."

She learned as much as possible about the disease and later wrote "Illness as Metaphor," an influential essay condemning the abuse of tuberculosis and cancer as metaphors that transfer responsibility for sickness to the victims, who are made to believe they have brought suffering on themselves. Illness, she insisted, is fact, not fate. Years later, she would extend the argument in the book-length essay "AIDS and Its Metaphors."

¤¤¤ Life ¤¤¤

Victoria Plum, an ambulance technician from Berkshire, England (on this side of the big pond we might call her an EMT), presents Why can't I sleep??

Finding herself unable to sleep one night during her enforced time off the road due to a yet-to-be diagnosed medical problem, what does Victoria do?

Well, she does what many of us have done....she starts a blog.
Victoria shares her MS journey at the aptly named blog Victoria Plum - Technician!.

¤¤¤ Multiple Sclerosis ¤¤¤

Recently diagnosed with multiple sclerosis in November 2007, Kimberly Fabrizio is thankful to have had One Month Free of Hypochondria.

Kim blogs at Sunshine and Moonlight -- A Journey with Multiple Sclerosis and says, "Yes, I’m living in reality….Honest," and shares some ideas about Staying Positive without Mindless Optimism.

She also has discovered a new way to relate to her father, especially whenever she's, uh, like saying, "You know -- It's that....that....THING!"

¤¤¤ Life ¤¤¤

Although November 2007 was National Family Caregivers Month, we should take time to recognize the many things which our family members, friends, and caregivers do for us each and every month.

Mandy Crest blogging at MS Maze presents My Spouse, My Caregiver, a gentle testament to the many little things her husband does for her on a regular basis.

¤¤¤ Life ¤¤¤

Chris Tatevosian has gone beyond the blogworld and has written a book about his MS experience titled Life Interrupted, It's Not All about Me.

Chris shares his story regarding anger, frustration, rage, and marriage when a couple suffers the effects of multiple sclerosis.

No one should have to put up with that kind of behavior, especially your closest and most intimate friend, the person you love most in life. Yet this situation is prevalent among couples affected by MS. I have made my life an open book with the goal of helping others avoid making the same relationship destroying mistakes that I have me.

At his blog Defeating Illness, Chris primarily discusses issues surrounding his book.

¤¤¤ Multiple Sclerosis ¤¤¤

Richard Boughton reflects on the disease which is MS, as compared with other types of disease, in his post Blades of Grass found at non-idiotic people who happen to have MS.

Perhaps it is time to amble a bit more as we go through life, no matter what the weather. Goals are fine, achievements are dandy, but sometimes we can fail to appreciate the wonders of the process, the myriad sights and sounds, faces and places that are the fabric of our immersion in that which is our life. No matter what else it comes with, it comes only once—blades of grass one day, fuel for fire the next.
[Still] ... I'll choose MS.

Richard blogs at KEBENARAN - THE TRUTH.

¤¤¤ MS News ¤¤¤

Ann Sawyer and Judi Bachrach join blogging forces to discuss The MS Recovery Diet, a book which addresses the inflammatory effects of nutrition in diseases such as multiple sclerosis.

Ann provides answers to a reader's questions regarding the book on her blog, while Judi answers some questions regarding a vegetarian approach for her readers.

¤¤¤ Opinion ¤¤¤

As nutrition truly is important in maintaining a healthy body, Lisa Emrich at Brass and Ivory shares a recent experience she had after her rheumatologist suggested fighting systemic inflammation by fighting abdominal fat which produces cytokines (ie. TNF-s and Interleukin-1). The latest disease-modifying drugs used for rheumatoid arthritis suffers seeks to counteract the effects of these cytokines, but those of us with MS are prohibited from using these drugs due to neurological side-effects.

So in fighting abdominal fat, a natural approach would seem most logical. However, caution should be taken for those sufferers who seek the guidance of 'natural health' practitioners who may (or may not) have a larger agenda in play than your greatest health.

Lisa shares her experience with one local doctor In the Pursuit of Health & Wellness - Is Alternative Medicine Complementary?

¤¤¤ MS News ¤¤¤

Stuart Schlossman of Stu's Views and MS Related News invites readers to visit his blog and to subscribe to his weekly MS e-Newsletter which is presently received by over 4000 people globally.

Stu's blog is not the typical 'bloggers blog' but is an archived database of over 900 MS-related articles which give the viewer, the patient, and/or caregiver a place where they can learn more about Multiple Sclerosis.

¤¤¤ Multiple Sclerosis ¤¤¤

The next Carnival of MS Bloggers will be hosted here again on January 17, 2008. Submit a post from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 15, 2008.

As the carnival develops and participation increases, I hope to include more personal views and presentations on any number of topics and less quasi-commercial promotion.

Thanks for visiting and happy blogging in the new year.

Thank you.
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