Thursday, April 22, 2010

Carnival of MS Bloggers #60

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

SPMS, Spring, Extraordinary Lives

Secondary Progressive MS: What Your Doctor Won't Tell You
by Diane J Standiford of A Stellarlife

Ok, 1.) Approx. 90% of people with relapsing/remitting multiple sclerosis will become a person with secondary progressive MS. That means YOU, unless you are in the lucky 10%. Since most people start with relapsing/remitting MS, YOU, like ME will join the secondary progressive club one day. No matter what drug you have been sold on, 90% of you will progress and become disabled. Now, take a deep breath. Rejoice that you do not have primary progressive MS. Rejoice that you will have RR for about 20 years after diagnosis. Rejoice that you were able to walk and stand up to at least 15 years after diagnosis. Rejoice that you could still hold a job, start a family, and hold onto that hope that you were the 10%. If in those 20 years you ONLY had MS to deal with and no other diseases or conditions---rejoice. Many of your peers were not so lucky. No doctor knows how much any drug slows the natural progression of MS (not if they do 1 million MRIs), OR if it has slowed your natural progression AT ALL.

All the King's scientists and all the King's doctors can't put the MS puzzle together yet.

NOW! That is the bad news. The good news is very good.

2.) Once you have the secondary progressive diagnosis, you will probably stop having new exacerbations. If you never had bladder problems, you probably never will. Cool, huh? I think so. There is now less unpredictability in your life. If your left leg is bad, it will stay bad or slowly get worse---YOU KNOW WHAT TO FOCUS ON!! That is why I can't say it enough, what I wish someone had told me, start now if you are in RR, to work on your relapsing areas. Maybe your right hand will remit and be normal for the rest of your life, but why gamble? NINETY PERCENT

I was told that how I was doing after 5 years would predict my course. At 5 years I was doing GREAT! I was driving, shooting hoops, working 40+ hours a week, WOOT. But, the doctor and common MS knowledge was wrong. By 13 years I was pretty much secondary progressive. Normal MS progression. Today, with all the ways and all the push to diagnose sooner, get you on an MS drug sooner, stats will show that people will go longer years before they become secondary progressive---you do the math---smoke and mirrors. I would have been diagnosed with MS 8 years sooner. I would have gone on the new drugs sooner and been told "LOOK how well you are doing thanks to this drug!" By the age of 53, I would be right where I am. (Except with the added stress of having MS for 8 more years, doctor appts., high drug costs, and all the anxiety I read on the blogs of the newly diagnosed.

Here is some more doctors won't tell you because they don't know---you can improve your functioning. Just don't ever give up on your body or brain and don't let yourself be labeled with duct tape as "Secondary Progressive." Don't rest just because "why bother?" Bother. Bother because you are still alive and something of your brain and body works great. Seek that which makes you laugh. Breathe deeply every day. Make breathing an exercise. Get your diet together, toss the junk food, corn syrup, additives, sodas, cigarettes, all those evil doers.

Here is something else your doctor won't tell you: plan now to live with disability. If your MS is benign--woo hoo! If it follows the NINETY PERCENT , you are prepared. Now, I have heard that there are still crazy doctors out there who tell people just diagnosed to quit working and buy a wheel chair---AARRGGH That is worse than pretending you will never need a wheelchair, staying active as long as you can is the best drug. You have possibly twenty glorious years before you will need a wheelchair. And please don't feel guilt if you want one before 15 or 20 years, these years are not written in stone. Learn to listen to your body. It will speak loud and clear. (If you don't believe me, hit your thumb with a hammer.)

Why do so many neurologists not tell you about the true and time-proven state of MS? I can guess many reasons, but none are good excuses. Five days ago I played the piano. I played the piano with both hands. Thank goodness I had a friend with me to witness it or no one would have believed it---INCLUDING ME! When I imagine what it took for my brain to do that and my deformed fingers---AMAZING.

Reinvent YOU. There are so many activities I have been unable to do now, but many I never considered doing, and life goes on. Modern technology is a wonder boost for people with disabilities. Computers, the doors to the world, can use voice recognition to operate. Audio books can take you to more worlds. If you have saved enough money or have long term care insurance, you can buy "people" to help you; if you do not have either of those then the good old U.S. of A. is full of organizations that will find a way for you to get the help you need. There are also many people who will love to help you. Seek them now, familarize yourself now, BEFORE you are duct taped! Talk, talk, talk, to your family and friends about the fact, FACT, that MS is a chronic, progressive disease. My friends and family (including co-workers) were prepared for what happened to me and they were there to help me every inch of the way. (Well, when I say family, I mean my partner, she has been my only family as we think of family, for many years. I had to reinvent a new "family.")

What you won't be told is that you will most likely go into the secondary progressive state and you can survive it. It is even possible to do amazing things. Don't be afraid.

***I am no doctor. I am a woman living with secondary MS for 6 years. I was DX MS in 1990. I took Copaxone from 1997 to 2005. Seek professional advice and do your own research too. Because MS can cause different problems in each of us, no suggestion will fit everyone. But, after reading many MS blogs, I see many more similarities than differences. Most importantly: Be unafraid, you are not alone.***


Feeling Groovy 
by Maryann of Azoyizes and MS

Yesterday, Arnie went to a Civil War gathering outside of Appomattox, VA, so Monty and I had the day to ourselves. I cleaned out one more of my little gardens and got the soil ready to plant in May. In the afternoon, I took Monty for a walk. It's a little hard on my own, but we managed. Then, we came home and I opened all the windows because it was 70 degrees. Finally, I opened an ice-cold beer, and sat and read while Monty took a nap.

Friday, we had Zipper over for the day. Zipper is a Saint Francis career-change dog. She was being fostered by Monty's foster family and hurt her leg, requiring surgery. That meant that she could never be a service dog. So, Kim adopted her. Monty and Zipper lived together for over a year while he was going through training. They get along great, still. We took them for a walk, played ball, and they chased each other around the yard. Since it worked so well, we're going to make it a regular thing.

I got a call from Nikki, the advertising director at SF. She said that since Arnie and I do so much for the organization, they want us to go to Putting on the Dog as their guests. This is the largest fundraiser SF has, and I was thrilled to be invited.


Today, I made Monty cookies, and then we took him for a walk. Cut it short though, because today it's 80 degrees without a breeze. Way to hot for me with MS and Monty in black fur to be out walking, not to mention Arnie who is just three weeks out from chemotherapy!

We have our lawnmower in the shop for repairs. The yard was looking awful, so Arnie asked our neighbor if I could borrow his riding mower. Ten minutes later, Jerry was out mowing our yard! I must point out that Jerry is two months out from a heart attack and open heart surgery, and two weeks out from hernia surgery. Amazing guy.

We had a wonderful Passover in NJ. Our son and one grandson flew in for the occasion. The weather was beautiful, and we all had a wonderful time. My BIL and SIL went with me to see Clash of the Titans in 3D. I loved it! It's been years since I've been to the movies!

My Daffodils are spent, but my tulips (see picture) are still beautiful. Our little Chinese Fern tree is covered in leaves. I worried about it surviving the winter, it's so small. I think all the snow we had acted as a ground saturation, and helped all the plants. Bye for now.


The Extraordinary Life
by Dawn from AnonyMS

Did you ever feel as though your life were meant to be extraordinary?

That something special was going to happen in your future? A belief that nags at you, somewhere beneath the skin, someplace you can’t scratch?

As a child, you blew dandelions seeds across the lawn, watching one puff rise higher than the others, hoping it was the seed that would carry your wish to whomever made these things come true, never knowing it sprouted, days later, as another dandelion in the backyard.

Maybe you dreamed of becoming a doctor. Or a lawyer. Or maybe those were never your dreams at all, forced upon you by parents trapped in assembly line jobs.

A movie star, perhaps? Was that what you wanted? Singer? Musician? Winning awards? Topping the charts?

Did you want to be a CEO? Invent something the world could not live without?

Perhaps, over time, your wants became simpler, like a good cup of coffee every morning with your spouse, predictable, comfortable in your well-worn slippers. A house with a fireplace. Now that would be cozy. An outdoor pool. Plus someone to take care of it. A nice car, but not a minivan. Two or three children with scrubbed-clean faces and good grades.
Yes, you slathered Calamine lotion on your skin and spread Scott’s turf builder on the grass.

Maybe ordinary could be extraordinary to you.
Or maybe you’re like me. You thought you would do something extraordinary or be something extraordinary, but you never knew just what extraordinary was. It had no definition. It was floating out there, somewhere, waiting to be caught.

But now I know.
I have Multiple Sclerosis.

So this is how it’s going to be, huh, life? Now I have to be extraordinarily brave and strong to overcome a lifelong, incurable disease? Great. This wasn’t the extraordinary that I had been hoping for.

But if you’re gonna give me a lawn full of dandelions, life, then watch me clip ‘em and stick ‘em in water. They’ll keep growing back, I know, but hell, I’ve got a cupboard full of crystal vases that need filling.


This concludes the 60th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 6, 2010. 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 4, 2010.

Thank you.
Comments for this post.

Thursday, April 8, 2010

Carnival of MS Bloggers #59

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

Emergencies, Love at First Sight, Beyond Denial, Peapod

M.S. at 2 a.m. in Orlando E.R. 
by Jennifer Digmann

It’s been a little more than six months since Dan and my trip to Walt Disney World. My memories from that um, memorable trip are still pretty fresh. Let’s see, I remember theme park rides, amazing fireworks, images of Mickey Mouse everywhere and having a great time with my family and Dan. But really what I remember most is my late-night visit to Celebration Hospital in Orlando.

To treat my MS, I take a subcutaneous injection ever day, which is supposed to lessen the frequency and severity of my Multiple Sclerosis. After giving myself injections every day for the last 12 years, I guess it was bound to happen: I had to have an incident to remember.

And remember this one I will.

It was a little later than when I usually take my shot, but we were on vacation – getting away from it all. The day was pretty packed with activities. Eating dinner, taking my shot, and crawling into bed sounded like a perfect ending to a busy Disney day.

I took my pre-filled syringe from the refrigerator, pulled off the cap, inserted the needle into my stomach, and pushed on the plunger. But the plunger didn’t budge. This sometimes is typical because I’ve developed scar tissue from taking so many injections. And as usual, I asked Dan to push in the fluid. He pushed on the plunger, but it still didn’t move.

I gave it another try and in my brilliance, I thought, “Oh, just give it a little twist.” And the next thing I knew, I had a syringe in one hand, and a needle in my stomach. Understandably, I started to freak out. But I tried to stay calm, looking at Dan to fix it. I was pleading with my eyes, “Fix this,” and he was looking at me with confused, “I wish I could” eyes.

Just then, he took his fingers and tried to grab the pointed metal piece and well, you know how quicksand in movies looks? That’s how the needle disappeared into my belly.

Poof. It was gone.

“Oh no! Oh no! What am I going to do?” I frantically questioned.

Dan was as mystified as I was. What could we do? I tried to regain some calm and call the hotel front desk. They transferred me to safety, where I give the same story I just told you. Safety was as mystified. They told me to call paramedics, which I did. When the paramedics arrived I went through the whole story, again, and they said, “We’ve never heard of that. You should probably go to the hospital, and at least have an X-ray.”

So off to the hospital we went. X-rays were taken. At least three times, between doctors and nurses and X-ray techs, I heard, “Wow, never heard of that before.” Comforting, isn’t it? By about 2 a.m., after several X-rays turned up nothing, the doctor told me that he was going to let the needle work itself out, kind of like a sliver. After all, it would be more dangerous to perform surgery to remove something they couldn’t see.

And guess what I said?

“Really, hmm, I’ve never heard of that before.” But I trusted him, and besides I just wanted to go home; home to Michigan, that is.

Because the reality is, when you live with a chronic illness like MS, you never really can get away from it all.

P.S. It really turned out to be a great trip.

P.P.S. Yep, the needle is still there :-)



First Things First 
by Johnnymac

Where to start…..at the risk of sounding like a newbie at an XY Anonymous meeting…

Hi, my name is John, and my wife has MS. I’m compelled to share our story in many hopes….in hope that it can bring a tad more attention to the fight MS patients and their families go through every day, in hope that it can help others dealing with this dreaded disease, in hopes that it can help me think through the challenges we face and make the right decisions, in hopes that it can show other caregivers they aren’t alone in their fears and that the cross we bear is one of love not disease, and that it’s our love that pulls and pushes us forward. There are so many things I want to talk about, but first, here’s our story.

It was love at first sight. I was working in a kiosk at the Golden Triangle Mall in Denton, TX one afternoon 13 years ago when this incredible girl passed by. She was wearing a camouflage t-shit that let her shoulder tattoo barely show under the sleeve, ripped up jeans, short dark brown hair, and had the most beautiful smile I had ever seen. She was smiling at me. About a half hour later she stopped by my place of work and there was the ever so awkward moment of sales clerk trying to help a customer who didn’t really need help.

I kicked myself for days not getting her number.

She wouldn’t get out of my head, all I could think about was this woman I saw at the mall, and my friends were definitely tired of hearing me talk about her. Little did I know she was at that same time telling her best friend she saw the guy she was going to marry. Luckily Denton, TX is a fairly small college town and it didn’t take long for us to run into each other again, this time she was with someone that knew me who drug her to my kiosk and made an actual introduction. Courtney…. I now had a name to dream about along with the face.

Still no number, and I was yet kicking myself again.

You see, although I sometimes pretend otherwise, I’m really quite shy, and it wasn’t until about a month or so later with the assistance of copious quantities of alcohol that I was brave enough to approach her at a bar I frequented (where she happened to be on a blind date..ha!) and got her number. I believe the line was “If I let you get away again without getting your number, I’ll have to kick my own ass”……although I bet it sounded more like “Ish I vet you geet away again wishout hetting your number I’llll have to kish own ash”….I’m surprised she answered when I called. She did, and we’ve been together ever since.

We’ve had many wonderful experiences over the last 13 years, with our 7 year wedding anniversary coming up on April 13th as a reminder of one of the best. Although life was kind enough to put us in each other’s paths, it isn’t always kind. 2006 saw Courtney starting to experience some balance issues, which we explained away as being tired or perhaps a bit out of shape. She’s a photographer you see, and if you’ve never shot a wedding before you don’t realize the toll a wedding photographer's body goes through. I assisted as a second shooter a couple of times and was crying like a baby the next day complaining how sore I was. It seemed legit, it’s a taxing profession, and her balance wouldn’t get bad until towards the end of the weddings.

Well, it continued to get worse, and we couldn’t explain it away anymore. She had tingling in her right hand and a bit of numbness, her right leg was showing signs of foot drop (we didn’t know what that was back then), she had been experiencing bladder evacuation problems for a long time already, and the wall-walking was beginning. After two sets of MRIs (3 days apart) and EVP testing she was diagnosed with Relapsing Remitting Multiple Sclerosis. We had her tested for heavy metal poisoning and Lyme as well, both of which came back negative. Lumbar Puncture was offered as a final confirmation of diagnosis, but she was very afraid of the procedure and we were told it wasn’t necessary to clinically diagnose her (not to mention she had a wedding to shoot the day after they wanted to do the LP).

Over the last three and a half years, Courtney has slowly progressed in disability, going from wall-walking to a cane and now to a walker (which still hasn’t stopped her from falling at times)…….this progression in spite of using MS drugs like Copaxone and Tysabri. She has the common MS bladder issues like urgency, not being able to fully evacuate, having to get up 5-6 times a night. Spasticity is pretty bad in her right leg, sometimes even popping up like a Pink Flamingo when she’s trying to take a step and locking into that position. Lately she’s been having dizzy spells many times a day along with slight slurred speech (try saying that that 5 times real fast!).

No matter the challenges we face them together. She bears the brunt of the disease, I try to make it bearable.... the best I can. I used to wonder what our life would be like without MS, now all I really care about is that we’re together, and doing the best we can with the situation we’ve been dealt. Don’t get me wrong, we’re fighting this thing tooth and nail, and in the days to come I’ll be sharing our current journey into CCSVI diagnosis and hopeful treatment.

Thanks for reading, and please come back……I have so much to talk about.


We Might Have Sold Our House!
by Joan of A Short in the Cord

A lovely young couple came to visit our house today.



She likes the view from the window.



Of course, they had to discuss it with their agent. Not sure if they'll want to move in.



Stay tuned!



KLP Web PhotoWhat does it mean to be disabled? I received the diagnosis of multiple sclerosis (MS) nearly twenty years ago and I'm still learning.

In the early years (and many of the latter ones too) I was too scared to admit to anyone I had an incurable illness. Denial worked well for me -- like the Law of Attraction in reverse -- out of sight, out of mind, and out of my conscious reality.

But MS must have remained in my subconscious reality because its strange and mysterious symptoms continued to arrive at sporadic and inconvenient times. Like when I woke up thinking I was hungover one morning and was completely blind in one eye by noon. Or the time I was pregnant and lost vision in both eyes for several weeks. Or the day my dog died and I saw the world in duplicate through crossed eyes for the next month.

Don't even ask about my ever present clumsiness, bruises from tripping and falling over nothing, slurring my words when perfectly sober or forgetting even the simplest words and names. It helps to have a sense of humor, and I often blamed these deficiencies on being blonde.

In fact, covering up my symptoms became a source of pride. I even went back to school to become a naturopathic doctor so I could advise others about how they too could cure their "incurable" illnesses with the "right" attitude and lifestyle choices.

But then I became a lawyer.

Everything I had preached about "balance" and "stress management" went right out the window, and the endless hours writing legal briefs for corporations I cared little about (for an employer who cared less about me) made me finally admit that MS is a serious dis-ease. Many times while sitting my office the intense itching/burning in the nerves of my hands and arms made me wish I were a wolf caught in a trap so that I would at least have the option of gnawing my wounded limbs off to be free.

But sadly the only "trap" I was caught in was the snare of working for BigLaw with its lure of financial reward through endless billable hours. So my body solved the problem for me by protesting ever more loudly, and my mind finally had to admit the label "disability" really means something.

It is a humbling experience.

I reluctantly asked for (and begrudgingly received) the accommodation of a reduced hours work schedule. Four months later I was laid off.

My hope for this blog is that by sharing my thoughts and personal experiences about losing a career, fighting for disability benefits, and facing an entirely new lifestyle will encourage others facing major transitions to share their stories too.



One of my biggest obstacles and annoyances is grocery shopping. I have to admit that when it’s a small order I don’t mind trekking to the A & P for some things, but when I have to do a big run I get very stressed. I don’t enjoy grocery shopping to begin with: all the decisions, navigating the crowded parking lot (I don’t yet have a handicapped parking placard, but it’s getting very tempting..), navigating the crowds in the store, trekking everywhere for items– oh my goodness! Just talking about all of it is making me tired! Worst is the lugging of heavy bags from the cart into the car and then into the house. I HATE it. I’ve tried to accomplish this during bad stretches with a cane in hand. UGH. I can only imagine using one of the store’s scooters with the ridiculously small basket attached to the front. Nobody moves for me now as I lurch through the aisles, often trying to keep my balance and not crash into someone like what would appear be a drunken sailor. LOL. I can only imagine the added annoyance of a scooter. So the discovery of grocery store home delivery systems has been a sanity-saver for larger orders.

I’ve been utilizing Peapod online shopping as of late. It delivers from Stop n’ Shop, which is one of my local stores. The delivery fees are reasonable: $9.95 for a $60+ order and $6.95 for a $100+ order. The website is easy to navigate and weekly specials are listed. I can also create a bare bones list of regular items that I can continually refer back to in order to save time. Other grocery delivery programs abound. Below is a small list of regional chains (the U.S.) and their programs. Some provide online shopping and home delivery while others allow you to pick up your online order from the store. For your own area of the world, consider calling or looking up local and regional stores online and learning about their online shopping / delivery programs. I find myself much more at ease because of this fantastic concept:
Peadpod
Shoprite
AUL Superstore
Schwan’s
Safeway
Homeland Delivery
Giant Food Stores
Acme Food Stores


This concludes the 59th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 22, 2010. 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 20, 2010.
Thank you.
Comments for this post.

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