Carnival of MS Bloggers #107

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

New Days with MS

Wake Me Up

by Sarah of Making Calm

The dampness is frightening. But not yet.  It will seep through and make a rain in my bones, i know. A deep murky mixture of water and rubble climbs slowly up the side of the bed.  We are awash on our beds, screaming at swimming  buses swinging round like  boats. But I am asleep. Through closed eyes i watch. They are collecting at a building. At the base of a hundred steps. A building, once magnanimous, now crumbling. They kneel as water fills its cracks and fissures under a dying sun. A stranger comes to lie beside me. Tired perhaps. But i am irritated. I turn over. I am asleep. Let me go, my precarious dream. Of a damp, wet and dying world…. Let me stay. A drunken awareness tugs at my lids. The expected, pain, finds its way in. Shoots through, pinning down my shoulders, and finds its nest in my hip.  I cannot scream anymore. I cannot cry. I am awake. My pupils dilate and contract searching for my will. I dont know how well i will be today. But it is a new day. And it has begun.

daily image: 1/12/12, #779

by Stephen of Captured Light

shot with my new canon s100.

Getting Over the Grief

By Catherine of A Life Coping with MS

There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone. In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone. And I'm starting to understand why.

Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.

So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.

The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times. For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.

On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.

But acceptance doesn't mean that I haven't had days of the other four stages.  In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.

Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?' Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.

It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'

But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?

Ah, and in creeps the denial - without me even realising it.
If only it were true.

The Irony Is ...

by Judy of Peace Be With You

Most people will share
really good or really bad
accounts of their lives.

The daily humdrum
muted play of emotions
does not get much play.

The irony is
we mostly dwell, laugh, and cry
in the commonplace.

The Quest to Reinvent Myself
by TamDe of Shalom Babayit

I was a physical person. Not a rock climbing, landscaping, house renovating, kayaking kind of physical. Rather I was a cookie baking, soup from scratch making, closet organizing,decorating, wallpaper hanging, leaf raking, dog walking kind of physical. I loved the feeling of accomplishment, not so much from "creating", but from "organizing". That was before Ms.

I worked as an optician for over 12 years. It was a career change for me coming from the field of retail. I thought I wanted to "help people". What I discovered was that my favorite part of the job was decorating the frame boards and keeping our desks tidy. I preferred straightening out our work area. Not so much the fabrication of the glasses though. It is a precise skill that uses metal and hard objects to form functional devices. I would rather work with soft fabric and scrunch it to make it fit. While opticians work in millimeters, I would rather measure an ooch or a scowtch. If you sew, you know what I mean! And then, sadly and admittedly, I discovered I was not so much into the "helping people" part of opticianry. The reality is it was more of a my glasses are crooked kind of complaining and whining. Yeah, there were more than a few people who truly appreciated my skills to realign their progressive lenses or reshape their bent frames. I loved the people who gushed appreciation when I simply changed their nosepads. Such a small thing to create huge comfort. But, unfortunately, one "oh shit" would wipe the whole slate clean. The patient who complained her glasses were too big or too small, too blue or too red were the majority of the customers.

I worked in a large office where I could have contact with the MDs and ODs if I wanted to. In general, they tried to project an atmosphere of openness, but for the most part, I felt my questions were irritating them. Oh, not all the docs! Some sincerely appreciated my attempts to help their patients! But again, one oh shit wipes the whole slate clean, and I would become acutely aware that I was cutting into the doctors chair time. Redoes cost money, and it would be a finger pointing battle of who messed up: was the prescription wrong, or were the glasses made wrong? Oh well, such is the responsibilities of every job. No matter where you work or what you do, that is what it means to be accountable.

As MS waged its relentless progression on my body, my left side became weaker. I could no longer adjust or fix glasses. After I fell once, I knew it was time to rethink things. After I fell the second time, my husband became concerned. The true wake up call came one day when the fire alarm sounded. An electrical problem on the 3rd floor of the building caused the alarm to go off. As we all headed outside to a cold winter afternoon, my friend went to get my coat. Others waited while I slowly navigated the stairs. They were worried about me. In reality, this was not good. I knew if it had been a true fullout disaster, they were risking their own safety to assure mine. It was that event that forced me to acknowledge that it was not right for me to continue to work.

It's coming up on one year that I've been home and acquired the dubious distinction of the label disabled. I've spent the year acknowledging the limitations MS has caused. I realize the importance of having a "can do" attitude rather than focusing on what I can't do now. I know I should use this life changing experience to rediscover myself. But I'm not an artist or a writer. I'm not a stargazer or a theologian. I don't have the answer yet to who I am or what I'll do. But I do have plenty of time now to think about it.

In Need Of A Better Disguise

by Karen of Meandering...One moment please

preparing for the day

unsteady hands apply the camouflage for the face

though not deftly placed

obvious ailments are masked

if only the makeup could extend the length of the body

concealing the disabilities

that scream...

she

is

a

sick

person

there is no hiding that

~Karen

This concludes the 107th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 16, 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, February 14, 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 #40

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

Perseverance, Compliance, and Supplements

Why I cry listening to the radio....
by Mike

I have been opening the waterworks to the strangest songs on the radio. This would not be a bad thing except I only listen to the radio while I am driving and it makes for a weird scene.

I am male, 6'3" tall, about 290 pounds and drive an F150 (pickup truck for you non truck types). A red one. As I have pointed out, in a comment posted on a great blog (Living Life With Sarcasm, Kids, and MS), I have been doing this and getting some strange stares at stop lights. I mention this because it is helpful to put an image in your head.

Ok, so I was listening to the radio when an Elton John song, Don't Let The Sun Go Down On Me, came on. Sure enough about 5 or 6 notes in the tears started rolling. As usual I felt more than a little embarrassed, because we all know real men don't cry (riiiiiight!), but then it hit me. BAM! Another car.... no, not really. I am being reminded of something I had forgotten.

My mom, may she rest in peace, was a huge influence on me and my musical choices. She taught me that all music had something to offer and was worth listening to. Even to the end we both agreed that rap was ok to not like but I have some on my iTunes account and my iTouch (Not to mention Spice Girls, Aqua, and Toni Basil but that's another post). I remember when I was in elementary school and getting ready in the mornings. Mom would fix us some oatmeal (or something that I remember being oatmeal but could have been boiled paper for all I know now) and have the stereo playing. It wasn't always Elton John but it is his music that stands out in my memory.

She seemed to smile more when she listened to him, hum a little and even sing softly to herself. It is this memory that really stands out in my mind and quite possibly why I have a particular affinity for anything done by Elton John. While so much of my childhood is lost in an ever expanding fog these memories stand out in sharp contrast. To be honest I could not swear to you they are real anymore than I can tell you a blackhole is real. To me it is real and that is all that really matters.

My mom died in 2006 after a very long struggle with cancer. The last 8 months of her life was spent confined to a bed set up in the living room so she could be at home living with us instead of relegated to a nursing home or stuck in a back room forgotten. The last 5 months or so she could not speak or move except for a forced smile, the faintest of nods, or the grip of a titan when I would hold her hand. My father and I, along with the angels from Hospice, took care of her. The one thing she loved, even then, was listening to the radio and I do know that when any Elton John tune came on she seemed to lose herself in the music. Perhaps she was remembering something like I did or maybe even a childhood memory of her own came to keep her company for those few minutes.

This is the first part of why I am crying so much lately. I miss her dearly and would give anything to see her one more time. The second part is my MS. I am only 7 months into my diagnosis (Though I believe I have been living with the disease for more than 6 years at this point) and I am having a little trouble coping with the future. The song in question is emotional to me because of the lyrics and they do mean a lot to me.

Lyrics copied from eltonography.com

I can't light no more of your darkness
All my pictures seem to fade to black and white
I'm growing tired and time stands still before me
Frozen here on the ladder of my life

Too late to save myself from falling
I took a chance and changed your way of life
But you misread my meaning when I met you
Closed the door and left me blinded by the light

Don't let the sun go down on me
Although I search myself, it's always someone else I see
I'd just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

I can't find, oh the right romantic line
But see me once and see the way I feel
Don't discard me just because you think I mean you harm
But these cuts I have they need love to help them heal

I guess it is true that each person takes away their own meaning from a song. This song especially reminds me of mom and the struggle I have to face with my MS. She fought her cancer to the very end. She never once said she would lose to it. Even when the meds made her loopy she fought. Regardless of the fact that the cancer was doing things to her she could not control she never gave up. She was a strong woman with a heart the size of the universe even down to that last day. I remember feeding her breakfast (A little bit of scrambled eggs, toast and orange juice). She could not talk but her eyes spoke volumes. There was a fire that burned in those eyes that I am reminded of when I hear songs she loved or would have loved. She lived to the very end.

That is why I am crying right now. I will not give up without a fight. I will not let her down; not now, now ever. MS may be doing things to me that I can not control I will not let MS control my life. I will still live each day as hard as I can and I will do it for myself, for my friends and family but most of all for the memory of my mom. To truly be alive you have to live no matter what your circumstance and to do anything less is giving up.

She didn't.

Why should I be any different?

DMDs - Disease Modifying Drugs

by Webster

All these new drugs we now have for MS - Avonex, Betaseron, Copaxone, Rebif, Novantrone, Tysabri - the list goes on. Not one of them promises to make us feel better. As a matter of fact, many of them tell us to expect to feel worse (with flu-like symptoms)! But still we endure the injections, IM or SubQ, weekly, several times a week, or daily, or the monthly infusions which offer even graver possible side effects, some of which can kill you.

Still, most of us take one, either out of hope that it will slow our pregression as promised, or out of fear that if we do nothing we are surely screwed.

I held off for several years because I was doing well, and because I was on Medicare. I simply couldn't afford any of them. Also, I wasn't charmed by the meager benefit I felt they promised. Basically, they help one third of the people who take them slow their MS by about one third (of projected outcome). That sounds like a crap shoot to me. Still, I signed on.

I was prescribed Avonex first. I went on it for a year, then my insurance stopped covering it, so I went off for the next year, then it started covering it again, so I went back on it for another year. Guess what happened to me? Though I never had any side effects at all, my relapse rate went from about one every three years to three in one year! With residual loss of function. After sixteen years of being free of needing even a crutch, I became once again dependant on one. [For the sake of full disclosure, I now use one crutch in my house and a walker with a seat out in public; and a w/c for distances.]

So, now I refer to these DMDs as Drugs of Mass Destruction.

Still, out of both hope and fear I give myself an injection every day of Copaxone. Some shots leave a bruise, others a lump, and they all leave a sore spot which lasts for anywhere from 20 minutes to ten days! For me, the shots on the thighs are the worst. The ones on my belly or "muffin top" (heh) are the easiest.

I am back to having just one relapse every year or 18 months, and with IVSM, I recover from them completely. May my luck with that hold out, because my relapses affect my ability to walk the most. While I don't fear once again being wheelchair dependant as I was during my first 2 1/2 years with MS, I do fear the inaccessibility of my house. My bathroom door is only 19" wide! Hell, I can't even get my walker through it without folding it up a bit.

Because of that alone, I will continue taking my shots, and hope for the best. The worst is too painful to contemplate.

Announcement:

Vitamins, Minerals, Supplements, Diet - Oh My!!! 
by Anne

I wanted to announce that my new blog is set up and ready to go. It is my hope that you treat it as a resource when you are looking for information about vitamins, minerals, supplements, and diet.

Come back often for your curiosity. There will be anywhere from seven to twenty postings per month, as my time allows. They will be dated and numbered.

Although it is a blog for everyone, a lot of it is geared toward those of us with Multiple Sclerosis, Rheumatoid Arthritis, and/or Crohn's Disease - but only as far as vitamins, minerals, supplements, how to read blood test results, and diets.

All of the information on the Vitamin/Supplement blog can be utilized by anyone looking for anything from RDA (Recommended Daily Allowances) to Blood Test Ranges. So as you can see, it is quite a bit of information there.

Please don't let the overwhelming amount of information scare you away. I put a search bar on the blog that can only be used to search that blog. So, I suggest that you use the search bar when you are looking for a particular item or items.

So for example, if you are interested in Recommended Daily Allowance (RDA) of a certain supplement or vitamin, you would type in RDA. Or if you were interested in Lab Test Values or Lab Test Results, you would type that in. All of the postings with those keywords will come up on your screen.

I hope this will inspire you to go check out my new blog. Drop me a note there and let me know you stopped by. Also, if you have an interest in something that is NOT on that blog, please comment so I can research it and then blog about it.

Thank you for your continuing support.


This concludes the 40th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 30, 2009. 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 28, 2009.

Thank you.

Comments for this post.