Carnival of MS Bloggers #117

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

Disney World, Jack Osbourne, a Big of Luck, 
and Doctors Beyond Reproach?

Relenting and Renting
by Laura at Inside MyStory

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  – step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own ass  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park and she was not so excited with many of the rides we did manage to do.  But we made the best of it – we had our laughs, danced a bit to the music, and made our own fun and I appreciated the alone time with her. even though we were surrounded by thousands of other people.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.

Jack Osbourne Has MS

by the MS Blogosphere

Did you read the news or watch the TV interviews discussing the recent MS diagnosis of Jack Osbourne, son of Sharon and Ozzy Osbourne? More than 100 articles have been written and shared on websites since the public announcement was release the past Sunday evening.  The MS blogosphere has also discussed the news.  Here is a round-up of interesting posts:

• Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness by Lisa Emrich at MultipleSclerosisCentral.com 
• Celebrities with MS: We Need More of Them by Mitch at Enjoying the Ride 
• Welcome to the Club, Jack Osbourne by Laura at Inside MyStory
• you've got more than money and sense, my friend by Swisslet 
• M.S. is B.S. by cubanrick at mylifeonMarS
• MS in the News by Jodi at Jodi Bean's Blog
• Adjust Your Underwear by Thanks: Management
• Osbourne's MS Discovery by Simeon at Suddenly MS
• Just Wondering and Jack Osbourne by Life Can Be Simple

The Full Story

by Judy at Peace Be With You

A good attitude,

success may depend on it.

So is being real.

I am no fool, see.

I know crap can just happen,

good person or not.

One can only make

the best of what life offers

and hope luck shows up.

Now Doesn't This Dunk Your Hat In The Creek.....

by Thomas of BiPolar, MS, and still as handsome as ever

OK, before I begin, take a look at this piece of information here. That's fine, I'll wait. HmmmmHmmmhmmmm. Oh, good. Now in the spirit of sharing, I'd like you to know that that guy is my psychiatrist. Or was. Or still might be. I'm not sure.

First, I freely admit that everyone is presumed innocent before proven guilty. However, I always did wonder why there was a very large amount of turnover in the office. Last few years have been tough for jobs, I am aware, so I did wonder why so many young ladies were in and out of the place, unless incompetence reigned. But basically I paid my co-pay, sat in the chair, filled out the forms, and met with either the Doctor, or one of his associates. Before the associates all disappeared.

Aside from possibly having a serial killer employed, and that's the reason they had to move to their new place because there were no spots left for the bodies to be buried, it did cause one to ponder. I see a lot of physicians because of my dual diagnosis (everyone needs a hobby) and it's more than likely that at each visit the same face would greet me and discharge me. Sometimes the face was attached to the same head. There was consistency.

But not at this psychiatrist's office.

Anyway, moving on, you may have noticed in the article that this particular doctor was called on the professional carpet for having "prescribed excessive levels of medication, failed to properly monitor patients and failed to maintain accurate records." These were the alleged charges.

(Read more: http://www.timesunion.com/local/article/Psychiatrist-faces-sex-counts-3628274.php)

Now, this Doctor and I have had no personal problems, as far as I can tell, in that we worked well on trying various medications to calm the bipolar, and adjust to the new challenges of brain lesions from MS. Working also with his associates, we had a good rapport, and the improvement could be visibly seen. And for those who might have looked, this is where the 5 Keys to Mental Health came from (and No. 5 is on its way). If something needed to be changed, it was changed immediately, or if something needed to be added, it was. And I have benefited and am grateful to the practice.

But still....should I go back there? Should I recommend the practice to others?

Everyone lives with their own delusions, even well trained doctors. Within each person is a golden nugget, a true clean soul that shines. It just gets covered with personal crap, and the jewel can not get its light through the mud and gunk of life. The person needs to clean that jewel themselves. And it takes time. This doctor may have some time soon.

Last night I started looking in my health insurance guidebook for another psychiatrist, one that was, literally, closer to home. I've been fortunate that I've had the same doctors pretty much for years, and haven't had to experience the constant shuffling many patients do. In fact, my regular physician retired the same day I did. But as far as I know, none of these folks had any of the issues that are being doled out to my psychiatrist.

So how to handle this? Consider what would you do if you found out a professional individual who helps you balance your disorder/illness/life has not exactly been a shining light to others? Forgive and continue? Forgive and move on? or just move on? I am fortunate that I can.


This concludes the 117th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 5, 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, July 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #93

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

Humility and Grief, Neuro Ourselves

A River of Stones, July 13

by Laura of Shine the Divine

Small Stone:
Some mornings it seems the tub is filled with an equal measure of clear water and tears. They trickle down my cheeks becoming one with the bath as I imagine a former joy that is now impossible. I see myself stepping out, drying off, dressing (that I can currently do) and taking a walk through the quiet neighborhood before anyone else is awake; wheelchair and assistance free.

More pebbles in the river of my mind:
The loss of independence seems unbearable at times. Asking my daughters to push me up and down the hills of our neighborhood in my wheelchair feels like begging. It is hot. They don’t want to get up early while it is cool. They are teenagers. My belly aches, my jaw tightens, as embarrassment seeps into the hole where pride struggles to stay planted. I weep into the water, knowing that I must ask for help to go outside in the oppressive summer heat if I want fresh air (not that it is any different in the cooler months, I still can’t manage the chair by myself on the hills).

Then I contemplate all those in the world whose suffering is far greater than mine will ever be. A flicker of shame is sparked briefly, until compassion pours into the craggy spaces tangled with conflicting thoughts and emotions, nourishing the roots of dignity grafted to pride, transforming self-pity to acceptance, opening to lovingkindness for all beings.

You think you are done grieving, until a new wave washes over you. So it is, so it is. I meet the sadness with a gentle hug, arms wrapped around legs, hands resting on opposite shoulders, forehead on knees, grateful I can still bend into this posture of humility. This flexibility that still remains is a gift, I know. I am grateful.

The Accidental Expert

by Judy of Peace Be With You

Unexpected task
having to research and find
my own solutions.

Some will remind me
I did not attend med school
and am no expert.

Here is the problem.
Experts themselves lack answers.
Whom do I turn to?

The Neuro Visit That Almost Wasn't

by TickledPink at Gilenya and Me

With all of the other medical issues going on I decided to take advantage of the fact that my Medically Needy Share of Cost had been met and try to get an appointment with my new neuro, Dr. Silliman, at Shands Jacksonville Neurology Department. He had been the lead investigator in my TRANSFORMS clinical trial and was very familiar with me.

I didn't have a neuro outside the study (long story; last neuro had a stroke) and I had sort of been leaning on the trial to do all the neuro-esque stuff to me and catch anything that needed catching. In the trial I was poked and prodded and tested to the brink of insanity every three months.

It had now been 5 months since the study completed on Jan. 20, 2011.

So I called a couple weeks ago and got the person in charge of scheduling. She says "can you come at 3:20pm on June 23rd? It's the ONLY appointment he's got left for this month." And my answer is "of COURSE I'll be there! Put me down for it."

So I plan my trip accordingly. It's a 1.5 - 2 hr. drive to get there depending on how you go (I take the long scenic SLOW route as opposed to I-95 which scares me to death.) and I made sure to work in a planned stop to JoAnne's Fabric store so I could feed my new addiction - sewing clothes for my granddaughter. I also planned to stop for something to eat at Crispers which was on the way and has really tasty soups and sandwiches. (I had the Citrus Chicken Wrap <-- totally awesome!).

I spent the morning coloring my hair so I didn't have to wear my "Please don't feed the Skunk Woman" shirt, and I was out of the house right on time at 1:15.
================================================================
Geeze, I started this post quite a while ago (June 25th and it's now July 14th) and probably don't remember what all happened now to finish it. I need to stop starting stuff and not finishing it! I bet I'm ADD (but there I go on another tangent.... oo! a butterfly!.... what was I saying?)
================================================================
Anyhoo, to get to the point (was there one other than the main one about what I ate for lunch?) I get there and was signing in and they are looking at me all curious like from behind the counter. I notice the waiting room is empty. It's 3:15 in the afternoon. I ask which sheet is the one to sign in on for Dr. Silliman since there is a whole line of clipboards on the counter.

The ladies exchange glances that tell me they are bracing for the Angry Patient Response that they both know is coming. She asks for my name and tells me to come sit at the chair in front of her desk like letting me sit in the comfy chair will make what she's about to tell me all better.

I sit down and she starts clackity clacking on the keyboard doing stuff with that number pad over on the right that I never ever use. I hate when they do that because I can't figure out what they're up to. Then she stops suddenly and said, "You were bumped."

I say "Huh? Nobody told ME!"

She said "They didn't call you?"

"NO!"

"Is your contact phone blah blah blah?"

"YES! And I didn't get a call"

"Hmmmm" (long awkward pause).

Me: "Look, I just drove for 2 hours to get here and I'm not leaving until someone sees me. I was told this was his last slot for the month and my share of cost is met and it's the end of the month practically so I guess you need to find another neuro who can squeeze me in."

(she makes that "eeesh" face, upside down smile thing with open mouth that suggests that might not be too easy)

"See, he had his schedule cleared for this afternoon because graduation is today." (I keep forgetting it's  a teaching hospital).

"Yeah, well that's fine but it would have been nice to KNOW 2 hours ago before I wasted my day and thirty bucks in gas."

I sat down again (having stood up when I became irate) and said "I'll wait here until you get something figured out because I'm not leaving until I see a neuro."

She left and came back about 15 min later telling me Dr. Nameaslongasyourarm would see me and whisked me away down a maze of hallways that ended up looking awfully familiar. The spot I ended up in was one of the exam rooms over on the Research side where I always went during the trial. I was "home" and immediately felt comfortable.

I saw a guy in a white lab coat who seemed a little unsure of stuff I was telling him. I was guessing it was due to the fact that I'd been on Gilenya for nearly 4 years while it's only been approved since last September. I was thinking maybe the doctors who weren't involved in the study aren't as well versed in the stuff. Either that or they put a lab coat on the janitor and told him to wing it. Turns out the truth was somewhere in the middle. He was a resident. When he brought up my MRIs on the computer and had my initial one from the study side by side with the latest one from Jan 2011, I started asking questions he couldn't answer. Then he starts whapping me with that rubber mallet and when he hit my left knee I kicked him.

I didn't meant to kick him, but shouldn't a neuro who is examining an MS patient have sense enough to stand to the side when testing their reflexes?? He abruptly left the room. Wow. What a wuss. I only kicked him in the shin. It wasn't like I nailed him in the privates or something.

He returns with another guy in a lab coat who seems a whole heck of a lot more at ease with himself and confident. He shakes my hand and introduces himself as Dr. Somebodyelsewhosenameiforget. He takes the mallet from the first guy and gives me a whack. Immediately I could tell he knew what he was doing. He stood off to the side as my leg flew up as if to launch the winning field goal.

He turns to the janitor and says "You're right! Her reflexes ARE brisk!"

Then he taps me all over, watches me walk, and looks in my eyes. This is when he said "I see some optic pallor more prominent in the right eye than left."

Whoa! Back the truck up! I have never had an MS related issue with my eyes so the way he said it, like it should be no surprise, surprised me.

Of course I had to come home and google it. I'm not buying what he's selling though because none of the real eye exams by the neuro ophthalmologist ever revealed any issues whatsoever, so this guy with a pen light and no dilation drops isn't about to intimidate me. I don't care what he thinks he sees.

Speaking of what he saw, he also looked at my side by side MRI scans and got them to sync so that he could scroll through matching image slices like seeing my brain melt away from the top down and compare things. He stopped at one point to teach the janitor/resident about Black Holes. Apparently I have one. News to me.

A Black Hole is where MS has done so much damage that not only is all the myelin all gone but so are the axons it was meant to protect. Total nerve annihilation. He did say that it was so small I probably didn't even have any noticeable symptoms from it.

They did a blood draw after my prompting and a little researching on their smart phones once I mentioned that in the trial they did blood work every 3 months especially since there can be elevated liver enzymes. No mention of any eye exam, PFT or any other test that was so common place during the study.

I left there feeling a little less confident about my eyesight and my brain, but decided they may not know what they're talking about. I'll wait until I get to see the neuro I'd intended to see. I was told to make a 3 month follow up with him.

The day after my appointment I got a phone call. It was a courtesy call to let me know I was getting bumped... from my appointment the day before. Duh.

This concludes the 93rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 4, 2011. 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, August 2, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #84

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

Kindness of Strangers, Old Friends, and New Doctors

Mardi Gras and The Blessings of Strangers

by Rodney at CCSVI Locator

I love Mardi Gras.  I have gone to the parades for all of my life.  I have been blessed to ride in the parades.  The riders throw beads, cups, stuffed animals, doubloons and other trinkets to the crowd.  The entire event is a love affair of the city.

The parades go on for about 10 consecutive days.  Last year my wife went to see her mother in Alabama, and our daughter and I went to a neighborhood parade that got expanded to three consecutive parades because of rain on previous days.

I parked five blocks away.   Even though I had MS, five blocks was not that big of a challenge.  I had some stumbling moments in the past, but no major problems.

I was fooling myself.  I took the cane and failed to use it as we walked down the very poorly maintained streets of New Orleans.

We made it to the parade route and all was great. The people were nice.  They gave my daughter and me drinks and food because the hour-long event went to three hours.  I sat down on the curb and got along with everyone.  My daughter made fast friends and everyone had a great time.

We had caught a garbage bag of stuff at the parades.  Our daughter was so pleased with her catches she could fly.  I know this neighborhood.  I may not know the individuals, but I know where I am.

Realize that New Orleans was coasting on an incredible high.  The New Orleans Saints football team had just won the Super Bowl and the city was full of love.

We walked and I stumbled.  I got better set and walked on towards the car.  About another half block and I was down on the sidewalk.  I started to crawl towards a Dodge pickup truck.  I would crawl, regain energy and get to my car.

I could not have been prouder of our 10-year-old daughter.  She was a trooper and maintained calm in a horrific situation of her dad falling on the ground.

Then New Orleans came up big.  I was crawling towards the truck, and someone got someone else and suddenly this young lady, a nursing student, pulled up to take the two of us to our car.

Total strangers stepped up and brought us back to the car.

I am eternally thankful to those helped me in a moment of extreme need.

Shortly, I filed for disability and began looking for new solutions beyond Tysabri for MS.

I was on Tysabri at the time, and my condition had deteriorated to a new low.

Within weeks, I began to work towards getting CCSVI.

So through tragedy, good turns of life can be presented.

The first good turn was when a place I loved gave me more love than I will ever know.

I have through my life tried to be the giver of love to those in need, and just the memory makes me cry.

My little girl and I drove to a restaurant, had dinner and drove home.

The next challenge is to see another parade.  I will go again.  Mardi Gras is something I want to experience again.  This year I will probably not go to a parade.  But next year I want to attend parades with the kids.

My life has been filled with goals.  Marriage.  Children.  Home.

My next goal of going to a parade is somewhat selfish, but I want to just stand before a parade and feel the love.

And I will do it with the help of my family.

Taking MS To A Class Reunion...

by Tina of MS Keeps Life Interesting

Ah yes...class reunion time!

Preparation meant:

* Try on approximately 16 different outfits to see which one makes me look less spherical.
* Find which jeans elongate my 5'1" stature.
* Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
* Accessorize in a manner that says, "I still got it". Whatever "it" is. Or was.

I was a What Not To Wear episode. In summary, I felt like I shouldn't wear any of it. But the reality is...I've known these folks since about 1977. I'm not fooling anyone with a crafty pair of jeans or dazzling top. I'm not 100lbs. I'm not 5'7". Let the secret be out.

So there I was, entering the establishment and immediately checking in at the...ladies room. When I'm anxious, my bladder shrinks to the size of a pea. No pun intended. Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion. And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways. Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug. That can be very awkward for both parties. Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another! Yaaaaay! My friends! Oh how I'd missed them! They seemed to know me upon first glance and vice versa. Whew. That was easy...

Side note: I love that most of the guys are bald. My husband didn't feel so out of place. Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991? If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies. They wouldn't have changed a thing!

So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased. It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible. After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned.

Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle. I had to navigate a series of steps, as well. They were narrow, which added an extra little spice to the venture. All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious. It ain't a party 'til someone wants to call an ambulance for your mommy, right kids! RIGHT!

But I made it...all 7 times. Without falling, without so much as tripping. Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice. And then it happened out of nowhere. The lights went dim, the colored disco ball spun, and the music began. Oh no. I never, ever used to turn down an opportunity to dance!

I immediately took a step toward the dance floor, but stopped myself. I decided it was a "No" with a capital N. I simply couldn't dance. I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out. But wait. These are the people I've known since 1977. And these are my favorite songs. MS...may I have this dance? Just this once?

It Takes Two! Apache - Jump On It...complete with applicable "cowboy with lasso" dance! Lady Gaga for good measure! Perfect! As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate. But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance". It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest. My girlfriends were clapping with approval, so I must've been doing something right. Come to think of it, maybe that truly is the correct way to dance to a Gaga song? Hey thanks, ms!

What was I worried about, you know? I was able to be there and have a blast! I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)! And I was able to reconnect with some wonderful folks that I've missed dearly over the years. I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure. That's what panty liners are for! Did I just say that out loud? Wow. I really AM just like my grandmother...

But behind every wobbly woman is a strong man to shove her into the truck. Many thanks to my dear husband for being that strong man. In sickness and in health...in wobblies and in strength...in temporary blindness and in clarity...he loves me through all seasons. And I love him right back :-)))

MS Specialist

by Maryann of MS and ME

My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.

After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.

I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.

He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.

Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.

I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.

Typical MS Symptoms – My Early Signs

by Tanya Asbreuk

Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” On top of that, I had tremors in both arms and hands – worst in my left. This was happening as I was finishing up my manual drafting class at college, which is all about drawing very neat and specific lines with a pencil and ruler. I couldn’t even keep the ruler still with my left hand. I also had a strange sort of spasticity in my right leg – I’d be walking along, then suddenly my leg would kick out randomly, and I was never sure if it was going to end up where I expected it to be. This is called “Ataxia. ” I was using public transit and walking a lot at the time (and still do). I also started slurring my words slightly, and had trouble concentrating on tasks that were usually very simple for me – called “Cognitive Impairment” or "Cognitive Dysfunction."

It was like all these things that I had taken for granted about my body were tired of being ignored, and were all having temper tantrums at once. It was at that point that I started looking at my body as separate from me, and I spent a lot of time asking it what the **** it was doing. My Neurologist told me I was actually having three separate attacks that just happened to overlap. It didn’t make me feel any better about it. Then came the corticosteroids… and I lost some serious time that week. The funny thing about taking 1200mg of steroids in 3 days isn’t what happens during those days – it’s what happens afterwards, as your body is flushing them out. My class apparently went on a field trip the week after my steroid binge, and I went with them. I participated, I asked questions (maybe not as intelligently as normal) and… I have no memory of that field trip. I thought I had dreamed it, and I had to ask my Instructor if I had actually been on a roof that day. I’m just glad there were people around to keep an eye on me! My nurses have since told me that is not a typical response to the steroid, even at that dosage. I’m special, I guess. I sure as heck didn’t imagine it.

I always wondered if there had been warning signs in my past – something that I didn’t know I was supposed to take seriously. After my diagnosis I started researching everything I could think of – early onset symptoms of multiple sclerosis, MS diagnosis, MS causes, disease progression, MS symptoms in women… and came out with a lot more questions than answers. I found out that MS occurs about twice as often in women than men, tends to hit my age group more than others (25 to 45 years,) tends to occur more often in Caucasians then other groups, tends to happen more often to people who live in temperate climates, in developed first-world nations… in other words I fit the profile, but no one seemed to know anything for sure. There is no proven genetic link, but it tends to happen about 20% more often in families having a history of MS. Mine doesn’t.


This concludes the 84th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 7, 2011. 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 5, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #67

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

Professionals, Patients, and the Lottery

Leap of Faith 

by Judy of Peace Be With You

all over the world
committed professionals
looking for a cure

in a leap of faith,
though unsure of benefits,
patients take their shots

uncharted pathways
we explore together
hoping for the best

A Letter to Patients With Chronic Disease

by Dr. Rob at Musings of a Distractible Mind

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,
Dr. Rob

[Although not an MS blogger, I thought that Dr. Rob's post was extremely important and applicable for many of us in the MS community.  If you haven't discovered Dr. Rob's blog, I highly recommend it.]

The Here and Now

by Judy of Peace Be With You

Let us be honest.
None of us would have chosen
to contract MS.

To be practical,
what is the point in asking
why this thing happened?

The pressing question,
how to deal with what we have
in the here and now.

Why Me? Well, Why Not Me?

by The Wheelchair Kamikaze

Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.



This concludes the 67th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 29, 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, July 27, 2010.

Thank you.

Comments for this post.