Thursday, May 22, 2008

Carnival of MS Bloggers #11 - Strength Edition

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

Native American Proverb: “That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Brian, a newly diagnosed MSer who blogs at The Life of BMW, shares the story of the carpal tunnel syndrome that wasn't and the multiple sclerosis that is. Interestingly it was the Pain Specialist, all lined up to give Brian a steroid injection in his lower back to calm the effects of a bulging disk, who put two and two together and encouraged Brian to see a neurologist.

Me & a dumb stupid whore named MS~ (excerpt)

At the beginning of 2008 I scheduled the MRI. I decided to wait until after the holidays because I didn't want to ruin the season for me and my family. I went in for my MRI and it was frightening, but not all that bad. The very next day I called my doctor to get the results. His first words were, "It doesn't look good!" Shit something is wrong and all I can think is, “I'm going to die”. My doctor started reading the MRI report and I shouted, "Doctor, just tell me what is wrong with me!" He stated that it appears that I have MS and would need to see a neurologist. The next few moments are a blur, but I kind of lost it. I was hysterical and needed to get home. I was at work, so I had Chaz come and pick me up. I couldn't believe that this was happening. How did I get MS? My life will forever be different because now I have a disability. WHAT THE FUCK!!!

After the initial shock had worn off I decided to embrace my MS and fight it. I scheduled my appointment with one of the best MS neurologists and he officially diagnosed me with Multiple Sclerosis. Now the next step is starting the treatments. The treatments are a combination of home injections as well as steroid infusions at the MS Center. The great thing is that we found it so early and I have a good chance of controlling my episodes. The main thing about MS is that you must be positive. Multiple Sclerosis sucks, but it could be a lot worse. It's not life threatening and it's something I can manage with different treatments. When I first researched MS I noticed that I only had one of the symptoms. I was glad that I didn't have some of the other symptoms. Well, again I spoke to soon. This past Monday I woke up and I had a terrible strain in my right eye. I "assumed" that I had a nasty sinus infection. I contacted my doctor to get an antibiotic. The strain formed into blurry vision and slight blindness. This is definitely not a sinus issue!

What I have is a symptom of MS called Optic Neuritis. Optic Neuritis causes temporary blindness, blurry vision and possible pain in one eye. This will last, without treatment, anywhere between 4 to 12 weeks. It has been a week and luckily I am starting treatment on this upcoming Monday. The reason I wanted to share all of this personal information is because it helps me release some of the frustration that comes along with my MS. As I stated, when I first found out about MS I was horrified. Now, I feel so relived and lucky that it's not something worse. I consider this to be a wake up call for my health. After 13 years of smoking ciggs I quit cold turkey, 8 weeks ago. Anyone that knows me understands that this is huge for me because I love my ciggs. I feel everything happens for a reason. The bulging disc has nothing to do with my MS, but if it wasn't for the bulging disc I would not have known I had MS. I feel absolutely blessed, as corny as that sounds, because I can deal with this disease. I am fortunate enough to have an excellent family and friends that will always support me. MS is fucking scary, but it’s something I have to deal with and I am ready to knock this bitch out! HOLLA~
Shauna, a very cool 'geeky' radio jock who blogs at bugs, bikes, brains, shares a story of traumas, scars, disability, failure, and rejection. Even as a young child, Shauna could appreciate the enormous strength which comes from facing life's challenges. I hope you too can derive strength from adversity.

As a child I was horse crazy. I still kind of am, though not enough that I have horses on my walls, pillows, etc. Horses are huge, gentle, creatures, with unmatched beauty and grace. And speed. I'm not sure what always attracted me to horses, but like many young girls, I was horse crazy. I read every series of horse books out there including the Black Stallion and Fury series. I knew about colic in horses, and how it can kill them. I knew about fetlocks and feathers, gaits and geldings, withers and warmbloods. My CCM supercycle was turquoise and one speed and I named it Mustang.

I learned to ride when I was 13 on a gorgeous buckskin gelding named Nugget. I had no idea what I was doing but I learned quickly and within a couple of days was able to ride bareback. I stuck to that horse like a burr, though I hope not as annoying. He was the eldest horse at the stable and apparently the gentlest. The only fly in the ointment was his experience as a youngster with a barb-wire fence and his face. He still bore the scars of his entanglement and that endeared him to me even more. He did take off in fright on the first day. When on a trail ride we had to walk across a barb wire fence laid down in the field in preparation for installment. As soon as he saw it, he sped off with tiny little me on his back pulling on the reins as hard as I could. I was small for my age and it took everything I had to stop him. That's when they explained to me about his bad experience. Nugget had several black lines on his tan face. They were the scars from the fence and as far as I was concerned, they were streaks of beauty. They gave him a story.

One horse story I read as a kid was The Blind Colt by Glen Rounds. It's a wonderful story about the birth and first year of life of a blind colt and the boy who catches and trains it. (As an adult I went looking for the book and it took a while to track down and order.)

I also had an affinity for Beethoven as a kid. I took piano lessons for several years and my favourite composer by far was Ludwig. The fact that the man composed some of the greatest music the world has ever heard while he was deaf, impressed me to no end. I had a poster of Einstein on my wall when I was 10. What I liked about him was that he had failed a grade or two in school but still went on to become...well, you know what happened to him.

As a teenager, I was a real geeky kid. I enjoyed school and reading and in grades 8 and 9 was bullied for this. I was once mistaken for a boy at the age of 14 (I was a late bloomer) and I didn't fit in with most of the kids in school so I spent a lot of time by myself. I was different and felt it. Nugget, The Blind Colt, Beethoven and Einstein all became role models for me as I navigated the typical angst ridden teenage years. I knew that whatever hell I was going through at the time would eventually come to an end, though that was little solace then. I couldn't wait to be an adult where I'd be in the company of other adults who wouldn't treat me like an outcast. Naive, eh?

I'm not sure why I had an affinity as a kid for the underdog or those with a traumatic life experience. Being small, perhaps I saw strength in those facing "disabilities" or challenges and admired that. Perhaps the Gods were foreshadowing my own challenges.

S.



by Diane J. Standiford

One of the most difficult things about living with multiple sclerosis is that it can steal parts of your personality. Some traits are missed by no one; some defined your very soul, such was my theft.

I loved helping those in need. As a child I formed “The Good Guys” club, consisting of my two younger cousins and me. We met in my dirty, cobweb and bat infested basement to plan what good deeds we could do that day. During snow filled Indiana winters, I loved to clean off the cars on our street. . After my great aunt lost some of her vision, my beat up Ford station wagon, was always available to take her to get her hair styled or keep doctor appointments. Surrounded by three rivers, my hometown often flooded and sandbagging in the pitch dark at the rivers edge to try and save a senior’s house filled me with great pleasure. After I moved to Seattle and MS took hold of me, my days of helping others turned into nights of questioning who I was.

One of the reasons I moved to Seattle was to see the seagulls depicting the Seattle scenery in a brochures I had requested upon turning 18 and knowing home was not in Indiana. Something about seagulls called to me. Soon after arriving I headed toward the scent of Puget Sound waters and the sound of seagulls. My first sighting was in front of the Seattle Public Library. Hearing the unique cry of the gull I looked up and there one was, in all the grandeur I imagined, and I could have sworn it was watching me too.

When I would move, it moved with me as if it were following me, welcoming me to my dream, performing just for my…plop! Suddenly my glasses were covered with a white substance I would come to know as seagull poop. Then it unceremoniously glided away.

It seems when diagnosed with a life altering disease that we humans are left with three choices: Stand still, move sideways, move forward. If we stand still, frozen by shock and disbelief, eventually we become as rigid as a tombstone--nothing but a stone where once there was a life.

If we move sideways then we immerse ourselves in our physical condition. We obsess on our losses and our what-could-have-been, or what-may-be. We spend our time searching for a cure, a reason, a logical outcome. Everyone around us seems to be moving to and fro. We become spectators at a tennis match that never ends.

The only option that made sense to me was to move forward into the unknown. Accepting that I would become a new me, embracing whoever that would be was an exciting idea. I chose to focus my moments on what I still could do. Luckily, I had help from above.

Looking out of the office building where I worked as a customer service representative for Seattle City Light, my co-workers and I noticed a seagull preparing a nest on the ledge of the building across the street. This provided several of us with a daily distraction from our stressful time on the phones handling angry customer’s complaints.

We were disturbed to see that a baby gull had somehow dropped to the ledge a story away from the nest. The mother (We presumed mother, though often there were two seagulls that hung around, daddy was very “wings on,”) was not happy.
She seemed unable to reach the baby as it had fallen to a very precarious, thin ledge six stories up. Now we had real drama. After several days it seemed mother and father gave up on the little one. We watched it shiver in the cold early morning Seattle rain. Swirling winds almost flung it to the street below. Many of my co-workers laughed at me for worrying so. It was a bird after all, it will not fall, it will fly. That made sense, but after a week of watching it all alone and not being fed…one day I looked over and it laid down, apparently too weak to stand.

How could I watch and do nothing?
“Can I borrow your sweater for a few moments?” I asked my co-worker who sat next to me, as I reached for it.
“Uh, ok.”
“Silvia, let’s go get that bird down,” I said as I swiftly walked past her desk in front of mine.

Silvia was a short, stocky, almost sixty, Greek woman; who I greatly respected and felt her to be a woman of action. She quickly removed her headset and off we went.

Sometimes, no, often, I wonder what motivates me. A flat land Indiana small town girl who hated the ride up to the Space Needle, hated Ferris wheels, hated ladders, loved my feet planted firmly on floor one, plus I happened to have multiple sclerosis; and I’ve decided that my friend and I will scale a big city sky scraper to save a baby bird? But this is all in hindsight, at the time Silvia and I never hesitated.

By elevator we made it to the height where the bird was, and I asked Silvia to wait close to the exit. “Silvia, I’ll grab the bird in the sweater, hand it off to you and you take it up...” “OK,” she replied in her heavy Greek accent. That was the only discussion we had about it. What could be simpler?

Oh sure, I had bouts of Vertigo, yeah dizziness on occasion, loss of balance, just the usual MS symptoms. As people in nearby buildings watched the two kooks up by the baby seagull, I got as close to the ledge as I could. The baby was within my arms length. It was considerably larger up close, robin size with a very sharp beak. As it saw my head poke around the corner it immediately backed away. “Diane! Be careful,” Silvia cried out as I turned and put my finger to my lips signing “sshh.”

With as much sweetness as I could muster I began, “Hi, little gull. It’s okay, don’t be scared. Come here.” The bird was scared to death and trembling uncontrollably. With the sweater hidden behind my back, bending further over the ledge, the gull started scooting slowly towards me. Just then a woman’s soft voice asked in a whisper, “What can I do to help?”

Tina, a friend of Silvia’s, had heard of our rescue attempt and ran over to assist. The baby bird was startled, as was I, and again it retreated.

“Tina, find this building’s maintenance man and tell him to bring a ladder. I’ll get the bird, hand it off to Silvia then she can give it to the man to take it up to the nest.” “Got it,” she said as she quickly turned and ran off, telling Silvia the new plan. Turning my attention back to the bird it had retreated further away now than when we first arrived. It looked exhausted as it slumped onto its side.

Think, Diane, think, I was saying under my breath, but it was hard to think because there was a strange, distant high pitched whistling sound in my ears. It grew loud enough to drown out the sound of the traffic below. As I glanced at Silvia for just a moment the look on her face was one of terror. Turning my head as if in slow motion I looked down Third Avenue, a main street in Seattle, and flying swiftly our way right down the middle of the street was a seagull. It was headed for me and the closer it came the larger it grew. It stopped two inches from my face, hovering there, its long beak as sharp as any sword I cold imagine and it stared at me.

Maybe this is a good time to tell you what happened at a small duck pond in front of an apartment complex I once lived at. The ducks had become aggressive to residents who fed them bread crumbs. After my bag of bread crumbs was eaten I would hold up my hands to the ducks and they simple turned away.

So when the parent seagull stared me down I pointed to the baby, and then made the motion of lifting it up to the nest. The huge, beautiful bird watched my movements then flew over to the baby and screeched until the baby stood and started moving towards me. The adult bird flew away straight down the street again and out of sight. Trembling more each step it took, I repeated my soft words of encouragement, cupping my hand, not reaching over too far so it might feel it had far to go before I could…swiftly with one motion I threw the sweater over the little gull and scooped him up, gently I handed it to Silvia who ran it to Tina who handed it to the maintenance man who had his ladder in place against the roof tier and up he went. Moments later he returned, the bird was back in the nest and within seconds the parent bird appeared out of no where and landed at the nest. Silvia summed it all up with, “There.” We headed back to work.

Returning to some applause, I collapsed, exhausted, into my desk chair as my co-worker who sat next to me said nonchalantly,” Where is my sweater?”

Thus began a series of bird rescues. Walking past an empty apartment in my building the shrieks of the apt. manager could be heard. She was chasing a sparrow around the room like a crazy woman. I calmly walked in, took off my jacket, and I began speaking softly to the frightened bird. It landed at my feet and I quickly covered it with my jacket; then scooped it up and released it out the window. The apt. mgr. was thrilled. “How did you learn to do that?” she asked. I shrugged my shoulders.

At these times a memory does come back to me when a bat was loose in the house my mother and I lived in. We were both frantic. A visiting friend of my brother’s asked if we had a shoe box. The bat was clinging to a curtain. He took the shoe box and using the lid flipped the bat inside.

Not long after the gull and sparrow experiences, I was sitting on a bench near Lake Washington watching a duck having a fit. Passersby were trying to chase it away. It was quacking so loudly without out taking a breath, of course it came up to me. Showing it my empty hands, no food here, ducky, it just got louder. OK, I stood and it waddled away. I followed down a steep embankment, relying greatly on my cane, along the lake’s edge, “I can’t swim you know!” (Now I was shouting logic to a duck)

Suddenly the wise-quacker stopped and looked at me with a, “Well, get to it!” look on its face. “Peep, peep, peep…” I heard, but where was it coming from? The duck was getting an attitude with me now and began circling a spot ahead. Sure enough there in a hole in the ground was a baby duckling, muddy and pitiful looking, but not so far down I couldn’t simply bend over and pick him up. Off they waddled without so much as a thank you.

Over the years birds in trouble have somehow found their way into my life. Even now that I spend most of my time in a power chair, birds serenade me and fly into my balcony. Just last week I escorted a wayward sparrow back outside from my apartment buildings hallway. I am me again.

Native American Proverb:
“That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Retired in 2004 after 18 years of working for the City of Seattle, recently turning 51 and living with MS for over 20 years, I continues to seek new ways of embracing who I have become by focusing on all that I can do while moving forward past what I can not do.

And finally, Oui ?... SEPourkoi ? , the blog of a French MS patient, Missbizz, provides a forum, lively discussion, and helpful links to patient-oriented organizations. Pat shares this post with us - SCLÉROSE EN PLAQUES : LES BIENFAITS DE L'ORTHOPHONIE - and describes her blog in the following manner...
In early 2003, it took up residence in my central nervous system and has clearly found the place comfortable… Small considerations and other thoughts about this undesirable invader: multiple sclerosis (the blog of a French MS patient... in French language)
This concludes the 11th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 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, June 2, 2008.

Thank you.
Comments for this post.

Friday, May 9, 2008

Carnival of MS Bloggers #10

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

Presented this week is a 'Top 10' list of absolutely the most necessary tools and armor any MSer must have on this journey called Multiple Sclerosis. Please do click on each post title to read the full text.
#10 - Doctors who Care

The Waterworks Saga, cont'd
My Urology appointment yesterday was brief and to the point. The first question the Dr asked me was how old was I and he commented how much ink there was on the paper; pointing out the obvious, that I have been through quite a bit for my age. Yes I have. Unfortunately. He asked me many questions about my bladder symptoms. After I answered all of his questions he explained that there is definitely something neurological going on. He went even further, explaining that with all of my spine problems, MS and Autonomic Dysfunction, Lupus, why wouldn’t my bladder be affected?

#9 - Personal Advocacy

'Tis or 'Taint?
I told him about falling down the stairs last month and my leg buckling at least once/wk leaving me catching myself or on the floor. He says "may be seizures or black-outs". What should I do for follow-up/safety? "Less stress". Hmm, I'm right on that, Doc.

Bladder problems: "You have four children, of course you will have bladder problems". Well what about the 5 years after last child/before bladder problems began?? I was once the queen of the Kegels before I became the queen of the numbum last fall. He said "you need to see a urologist/gyne and they will test you and teach you exercises. But I don't know any good ones to refer you to, so ask your primary doctor.

#8 - Financial Independence

Kiss My What?
Due to recent events I have been looking into new housing for myself and Princess. I don't spend too much time worrying about whether people would want me or not, but whether I want to rent from them or not. I know I am a good tenant, I am clean, quiet and pay my bills on time. So it came as a big surprise when a recent possible landlord was very concerned about the fact that I am disabled and didn't have any recent references. I have been married for 6.5 years and with my husband for over 8 years -- I haven't exactly been renting anything in that time. She was too concerned by my not working, even though I am able to pay the deposit, first month's rent and even a few months in advance if need be. [...]
But did this matter to said bitchy-possible-landlady? Heck no. She went on and on about having to talk to her attorney about what they would have to do to rent to a disabled person and what modifications would have to be made.

#7 - Gratitude

Rebif in Britain
I found out that I have to pay a charge for it too - the basic price of a prescription, £7.10 [ed. = $13.85, that's less than $5.00 per month] for each delivery (every 3 months). A small price really when you consider that a the starter kit alone of 4 weeks supply comes in at £586.19.

Which brings me on to another topic. Browse through the history of this blog and you'll find a few rants here and there about the fact that not all of the UK has to pay the prescription charge. They are currently free in Wales and are on the road to becoming free in Scotland over the next few years. At face value, it seems we folks in England are getting a bit of a shafting as there are no such plans on the table here.

Turns out there is a hidden side to this. Disease Modifying therapy is nigh on impossible to get for those living in Wales. Had I still been living there, sure I'd have gotten my monthly pill prescriptions free, but I would have been almost certain to not get offered Rebif as a treatment. The reason? The funds just aren't available.
#6 - Patience

Bureaucracy!

I wish they would just make it easier for me--mostly I wish I didn't have to deal with all this, there are enough other things going on . . . but that's beside the point.

So I called Betaplus--to check on my application for patient assistance. They told me I qualified just today so tomorrow I can call their pharmacy and get a 90 day supply delivered. When she told me the price I said my insurance was actually $5 cheaper so I'd go with my insurance.

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper.
[ed. WOW, even with insurance coverage, Kelly could get her DMD more cheaply through the assistance program] It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness.
I didn't actually lose money or anything but just all the phone calls makes me insane--So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.
#5 - Persistance in a Broken System

What Health Care Problem? It's a Great System
And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

I waited two hours, giving them time to finish their task, and called the pharmacy. Voice mail. Wait… wait… wait. Finally, a human being. We went through the process, playing twenty questions, and then I inquired as to the charges. Uh oh. $280 over.
[ed. Mandy's monthly copay is already $500] The pharmacy claimed that they have not gotten a phone call from my insurance company since last month’s fiasco. Great.

So, back on the phone to the insurance company. Voice mail system. Wait… wait… wait. I asked for the customer service rep who called me earlier and ended up in yet another voice mail system. I called back and asked for the rep I spoke to last month and, naturally, got voice mail.

Now into Friday evening, I guess I will face the hassle on Monday. Deep breaths, and I shall try not to loose my grip.

Oh, what a pleasure it would be to inform the insurance company that they do not meet my standards and I will bring my business elsewhere! Oh, yeah. I can’t. This is the only insurance company in my state that will give me any coverage at all… and only because it is required to by state law.

Equally wonderful would be the opportunity to choose another pharmacy, one whose representatives treat me with dignity and must court my business. But, again, this is the one and only pharmacy I am allowed to deal with.

It’s a great system we’ve got here.
#4 - Flexibility and Acceptance

Sometimes 'Going with the Flow' is Not Easy
On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

Meanwhile, my body started feeling loose and free... much less spasticity... how very nice that was. Improvement continued during the 10-day steroid taper and beyond. I even regained most of my sense of balance.

About two weeks ago, only 1 month since the IVSM, I started to find climbing the stairs becoming difficult again. Then a rubber band settled around my right knee, followed by the hamstrings and calves which stayed tight and rigid, impervious to stretching or massage. Soon I found standing up to be strained again.

#3 - Good Friends to Feel your Pain

Prone to Accidents - Destined to Complain
Often times when friends tell me about their pains (both physical and psychological) I am apt to want to help them in some way...offer any medical/nursing advice I think might provide relief...but mainly LISTEN to their experience. I feel badly for them and I also feel NO NEED to try to "one up" them with some sort of a "well you think THAT is bad, I have **blank**". I genuinely feel badly they are in discomfort.

But when my "acquaintance" begins to lament about a new pain? Well...frankly, I want to scream at "them". I have visions of throwing "them" down a flight of stairs just so I can be certain any new pain "they" feel a need to tell me about will be real! I loathe listening to "them" tell about their latest pain. I feel angry. I feel entitled. I want to yell, "I have MS, dayumit! You have no excuse for your alleged pain!" I want to justify my pain by providing a description to "them" just how bad pain really is...and so on. I have a visceral response to my "acquaintance" and "their" constant pain complaints.

#2 - Laughter in the Face of Adversity

Already a Year in This Flat!
Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

#1 - Joy in the Adventure

Speed Racer on Broadway with Multiple Sclerosis
Go, Scooty, go! I gunned him and rammed the cone, hoping it was not covering a deep hole or unseen drop. The flying orange cone flipped backwards into the street and as we sped off the smooshing sound of Goodyear meets orange cone bad year echoed down the steep Seattle sidewalk.

Things were looking up, or, actually down, from there---clear sailing. As we passed the multitudes of cars idling, spewing noxious fumes and angry honking, the feeling of superiority was overwhelming. Now we were in a section of Seattle known as “Pill Hill,” named for the abundance of hospitals in the area. Zip, zip, zip, very smooth cut-outs aplenty. The other side of the street, looked rough, so we kept our eyes (yes, I said it) open for the best place to cross over. That best place never came. We arrived at the main drag toward home: Broadway.

And now, a bonus 10% more for our Top 10 List.

Visit Chris who has written a book about MS and relationships.
Hi everyone. Within the book "Life Interrupted, It's Not All about Me" I share with readers all the details, including the not so pretty details of my life with MS before, during and after my first marriage. I literally made my life an open book so that others with MS, disability virtually any chronic illness could learn from my mistakes, learn from them and become familiar with the many coping skills about which I speak.

This concludes the 10th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 22, 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, May 20, 2008.

Thank you.

Comments for this post.

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