Carnival of MS Bloggers #52

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

Family, Friends, Love and Support - both Near and Far

Hanging on by My Fingernails  
by Maryanne

That's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things. My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors once more. My arms are weak again like they were before my 1st treatment. However, I'm still walking without walking aids--except, of course, Montana. My balance isn't perfect, but I haven't fallen in quite some time now.

I had an EMG nerve conduction study done on my left arm, because the two last fingers on my left hand are totally numb and useless, my hand is very clumsy and doesn't work right. The neuro (who is leaving and moving to northern Virginia at the end of this month) has given me a referral to an orthopedic hand specialist. I have either a trapped nerve in my elbow region or a lesion. That will probably involve surgery, but that is definitely going on hold until we get Arnie taken care of.

We just got back from a nice walk. The streets are clear, but there are still very high piles of snow from the snow plows, and most of the snow that hit a week ago last Friday hasn't melted. Our street has become a major street, with delivery trucks and 18-wheelers going awfully fast up and down it. Luckily, I'm friends with a woman who lives up by the golf course, which is a five minute drive from our house. She has told me to park in their circular driveway any time we take a walk and to walk in her neighborhood, which has a very small amount of traffic--and almost everyone drives slower there. I can't begin to tell you the feelings I get to be able to join in the walk with Arnie and Montana!

My dear husband is halfway through his chemotherapy. His symptoms are diminishing daily, which is quite a relief for both of us. He still has the cough, but it's much better. We'll just have to see how he does Monday after a 4-day rest from the shots due to the Christmas holiday. He is 85% sure that he will finish this round. After we get the results January 18, we will have to make some major decisions. I love him. He is my best friend and lover, and we've been married for 21 years; however, if he decides on no more therapy I will be behind this decision. So, we shall see. Because of the cancer returning so quickly, our son Scott and his family have decided to move back to the States from South Africa. That is a very good thing, as they've lived in Africa for three years now and we miss them like crazy. The picture I've posted is Lenny, our dear daughter-in-law and Scott, our son, Albert and Alex, our 6-year-old and 10-year-old grandsons.

We had two scares with Montana in the past three weeks. The first was a pinched nerve in his back, which was treated with pain pills, muscle relaxers, massage, and warm heat to the area. Then, he began vomiting every day. I called his trainer who said it sounded like Empty Belly Syndrome, which is when the dog's stomach is empty and begins to fill with bile, which makes them throw up. After increasing his food some, adding protein to his snacks, and giving him a handful of kibble at night before bedtime, it cleared up.

So I am holding on by my fingernails, hoping and praying that things get better and that the chemo works.

My Support Group part I aka My Friends  
by S.S.O.

I couldn't do this without my "support" group. In tru Trini style, we make light of a difficult situation. If I don't laugh, i certainly will cry and that is NOT acceptable; as I was once told, "MAN UP!! MAN UP!!!...we have NO time for crying/tears right now!!!". In their defense, G and T, it was on Georgia Ave in the middle of DC carnival! :-), but i think their reaction made me cry some more. It was 2008 and the gravity of the situation HIT me like a full BUS (It was the first time that i'd actually cried since being diagnosed) ...oye! I will not be able to play mas ever again!

I had actually spent my last carnival at home sleeping on top of a speakerbox on top one of the trucks...if only i knew then what i know now!!!

dem...and a few others

Anyhoo, I digress. My friends; they keep me going...

• G; my rock - I'm not sure if i could have even gotten this far without her. She will bouff (who really knows how to spell that word) anyone into submission to ensure that they take care of me when she is not around. I've had to call her to talk me off the ledge now and again
• J (W?) heeheehee - in Miami this year, whichever fete we went to, the chair was slung on his shoulder like a shoulder bag. He drives a HUGE truck and it has no footladder to climb in and I ketch my ass alot trying to get in (but that's besides the point)
• K - She always ensures that she is available for me to hold on to; even when i say that i'm okay...because she fears G's roar. She also was arrested (okay, she likes to say detained; but it makes for such a better story when we use arrested) because she was arguing with one of Dekalb County's finest outside a party about a small situation that we were in because of the MS. I was standing next to them and the next thing i knew, he was hauling her handcuffed ass to the backseat of his car!!! WDF!?!? :-)
• D is no longer in Atlanta, but he is missed...even tho he did watch me fall twice(!) in one party. In his defense, he was ah lil tite
• A is somewhat new to the crew, but sometimes i feel like she is my BIGGEST supporter. In FL earlier this year, I had a lil fight with the ocean and she was there to ORDER me out - lest the ocean became victorious!

I could go on, but suffice it to say that i really have the best "support group" that someone in my situation could ask for.

I have to mention this...I was raising funds for the MS Walk of Atlanta and I was soliciting funds from someone...The conversation went like this...

Me: Don't u want to donate? it's for a good cause...it's the MS Walk

C: What?? *$%@** MS Walk? Why I must give dem my money?? Who we know with that...I not donating to that...

Me: Well....actually I was diagnosed last year

He's ah red man and he turned even red-DER. I had a good laugh, he - not so much! I reassured him that I/it was okay...we had a long talk about it/my diagnosis etc but poor fella...to this day, I'm not sure if he has totally gotten over that!

Laughter is one of the best medicines! (No prescription req'd)

My Support Group Part II aka My family  
by S.S.O.

"the 'rents" are not here; they are still at home in Trinidad. I know that my mother wishes that she were here to be with me while i was being tested and the diagnosis, but I had the next best thing; Gib was here. Many times i also wished she were here too, i dunno bout allyuh, but when I get sick, she is the first person I call...but it is what it is and she lives at home. I've also called her to be "talked off the ledge" a time or 2 and as I mentioned before she has told me that i cannot return the disease, i have to live with it.

I have to credit them both for my positive outlook on this situation. Anyone who knows OB knows that he is the life of the party without even trying too hard and Learls, even tho she is more reserved, eh too backward herself. I know that i have their support - even across the ocean and they are just as "in this thing" as Gib is. As I've mentioned before in tru Trini stylin, there is never a dull moment when we're together. Laughs/jokes/picong (trash talk) cyah done...that is the best way we know how to deal with difficult albeit serious situations. "S" calls it "my caribbean/Trini way of thinking". We really try to make the best of a bad situation and i don't waste time on things I cannot change or control.


This concludes the 52nd edition of the Carnival and the final one for 2009!!

The next Carnival of MS Bloggers will be hosted here on January 14, 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, January 12, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #51

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

The Elusive Diagnosis

My head spins. So many differing opinions, so many docs, so many shifting symptoms, so many labels, so many possible overlapping reasons, so many experimental protocols, just one me. Always just a smidge outside the box. I'm envious of those with neat tidy labels. Yet realize the label doesn't always come with a solution. My head spins.

My desk is full of journal articles and website print-outs. Some carefully read, highlighted, and pondered. Others awaiting good intentions to manifest into action. My bookmarks bar is full of folders with links -- antiviral protocols, antibiotic therapy, brain exercises, ccsvi. The new doc is better than most -- we've had a couple visits. She acknowledges that we need a specialist in a certain area that's not so common. She's stumped for now but promises to look around. Maybe both do our homework and reconvene again in three months? My head spins.

I've decided that after two years of denting my couch I'm diagnosing myself. Ok, so the two years were complicated with some surgery distractions, but still, I want a diagnosis. Yes, I definitely appear to have chronic neuroimmune wonk. Yes, wonk. That should suffice. Guess I should get a cpt code to go along with that.

12 Days Of Christmas 
by the talented Ms. Blindbeard

On the first day of Christmas my MS gave to me,
1 life time of misereeeee.

On the second day of Christmas my MS gave to me,
2 frozen feet,
and a life time of misereeee.

On the third day of Christmas my MS gave to me,
3 hours of sleep,
2 frozen feet, and a life time of misereeee.

On the fourth day of Christmas my MS gave to me,
4 stiff limbs,
3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the fifth day of Christmas my MS gave to me,
5 itchy spots,
4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the sixth day of Christmas my MS gave to me,
6 morning meds,
5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the seventh day of Christmas my MS gave to me,
7 night meds,
6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eighth day of Christmas my MS gave to me,
8 new aches and pains,
7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the ninth day of Christmas my MS gave to me,
9 assistive devices,
8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the tenth day of Christmas my MS gave to me,
10 year old I can't keep up with,
9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eleventh day of Christmas my MS gave to me,
11 jerks and twitches,
10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a lifetime of misereee.

On the twelfth day of Christmas my MS gave to me,
12 things I can't remember,
11 jerks and twitches, 10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

Loud Sounds and Chaos Equal Pain and Disability in this Multiple Sclerosis Patient
by Lisa at Brass and Ivory

I love my nephews and I love my brother and sister-in-law. In fact, I am thrilled that I was able to spend some quality time with them this week after the previously-mentioned funeral. I don't get to see my brother's family but in a blue moon of blue moons (it seems).

I have had fun...but I am beyond exhausted. Honestly, I wonder how exactly folks with MS deal with having active and energetic families.

One of the things which really disturbed me the most during the first years after diagnosis was my concern and fear as to how I could ever have my own family. I remember when I couldn't use my hands (due to yet-to-be diagnosed RA) and thought that there was absolutely NO WAY I could ever care for a baby since I couldn't even care for myself. I have also had times where I couldn't use my left arm for anything which required weightbearing or fine coordination.

In my personal relationship, we have discussed over the years having children and both of us have had a desire to do so....eventually. Well this past spring, I discussed this possibility with my rheumatologist who gave me directions as to how I must be off of methotrexate for at least 3 months before even trying. Just to see how this would affect me, I stopped methotrexate for a measly two weeks before the RA pain started to come racing back.

The pain I had as the RA truly flared up at its greatest (still undiagnosed at the time) was so excruciating that Rob almost took me to the ER in the middle of the night once because the pain was so tremendous and frightened us both. Neither of us want to get back to that point again....EVER.

But one thing which I had not experienced so greatly during my previous visits here was just how sound has affected my MS body. It's been 2 years since I last visited and during these 2 years, my MS has progressed and relapsed to the point that my doctors and I are using Rituxan to treat both the RA and MS.

I know that I am sound-sensitive just as I am heat-sensitive. At home, I keep the TV volume low (if it is on at all) and avoid loud situations. I enjoy my quiet time, but most importantly, I NEED my quiet time.

Quiet has been a serious deficit this week with four boys in this house - aged 2, 6, 8, and 37. This is a family which loves its TV, DVDs, video games, and chaos. I like some of this stuff too, but in moderation, not in a constant over-load.

Today, my poor MS body had had enough. The input level was extreme as the sound reverberated around in my head. Sounds tend to echo and persist as the auditory nerves are sluggish for me. Also, sounds tend to send waves of pain throughout my body. The most simple way to explain this (to the boys) might be to describe the sensation which happens when you hit your "funny bone." I get that all over.

Also, as my nerves reach overload, I lose function. Not just mental abilities but physical abilities too. Today, my body had had ENOUGH!!

As I was trying to type a message to a friend, I saw my right hand in dramatic tremors. I've had very small, almost not-noticeable tremors in my right hand and right foot before. Basically, only me or an examining doctor would witness them previously. This time, my hand tremor resembled ones which you might notice in Parkinson's patients.

I had already been having a horrible time with spasticity and coordination walking on-and-off during these recent days. It's not a relapse going on, but my body simply reacting to the various situations. I can tell the difference because rest helps to better the deficiencies, as does extra baclofen and small doses of xanax.

Earlier today, my Mom (who is also here visiting) spent some time rubbing the spastic knots in my calves. It was extremely painful but did help to alleviate some of the coordination issues arising from muscles too tied up to work properly. Before that the pain from the noise and spasticity, the frustration of coordination issues including tremors, and the inability to think and speak straight caused me to breakdown crying.

It hurt so much in so many ways. My brother and sister-in-law don't know how to handle my crying, apparently. During previous visits, I've cried a bit because I miss out on so much of my nephews' lives and that saddens me. I've cried because my brother has been rude and stern before towards me. I've cried because I have depression and deal with that frequently.

Today I cried because I was in excruciating pain and frustrated by what having this disease has done to me. I hate it!! I hate MS!! I feel like I miss out on so much life because of it...and I'm highly functioning at that.

Although, the local Walmart store had the better of me the other day. I was having trouble walking straight after making too many circles around different areas. I was going slow and drifting to the left as my legs were like heavy concrete slabs. Drop me in a lake and I would have sunk to the bottom.

As I was looking for the benches in front of the pharmacy (where my sister-in-law works), a man in a shopping cart scooter made a comment about stopping so that I wouldn't wander into his cart as I was "drifting and daydreaming about." Thankfully, I was too tired to even truly respond because I'm sure that - "so sorry to be in your way, but I have MS and really should have grabbed one of those carts for myself on the way in the store. I'm not daydreaming; I'm trying not to fall down with a leg which is dragging nor walk into any of the displays. So please pardon me while I painstakingly and slowly make my way to those benches over there." - probably wouldn't have gone over too well.

Back to the crying this afternoon. Instead of asking me what was wrong, my sister-in-law called for the boys to go upstairs and she kept them there. That's often what happens if I cry, I'm left in isolation by my brother or his family. They don't know how to deal with it. Whether than allowing for a learning moment for both the young ones and the adults, it's "let's withdraw ourselves and punish Lisa for showing emotion, no matter what the reason for it is. Let's not ask what is wrong (which might create an opportunity to fix it), let's just all withdraw and disappear. If she cries, let's abandon her."

Today is not the first time, I've been suddenly 'abandoned' after showing emotion in their house before. Other times I would have said to the boys (if asked), "I just love you so much and feel sad that I am not here to see you often." Today I would have said, "I have this disease which makes me hurt when there is alot of sound and noise, or which makes my body not work right all of the time when I walk or use my hands."

What a better opportunity to teach my nephews (and their parents) some of the things which are different for me than for other people. My sister-in-law is a pharmacist so she should be exposed to the pharmacological aspects of the disease. My brother is a licensed therapist so he should be aware of the emotional and physical aspects of the disease.

But as you know first hand, even our doctors don't truly understand everything there is to know about living with this disease. The nurses and physical therapists who specialize in MS probably understand the greatest. But we know that others with MS who have been at similar disability levels to ourselves probably understand the greatest.

So here's my question to readers - do you also experience extreme pain and loss of function from something as simple as an overload (or chaos) of auditory and visual input? Should we start thinking of this as an official cause for a pseudoexacerbation? What do you think? I'd like to hear from you. (Comments here)



This concludes the 51st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 31, 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, December 29, 2009.
Thank you.

Comments for this post.

P.S. I remember someone (not included above) sent me a link for a blogpost to be included, but alas I couldn't find that email...and I don't remember who it was. My apologies to the person who I left out.

Carnival of MS Bloggers #50

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

Newly-diagnosed Copaxone user Sarah says I Hit a Vein Today and....

It HURT!!!

Really bad.

It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.

BLOOD!

LOTS OF IT!

At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the tub for a moment and took a look at my new word art, For My Life! "Yes, it is" I thought.
I cleaned up the 'scene', applied an ice pack, and went into the living room and sat next to the hubs. He asked, "What's wrong?" and I just shook my head, "Nothing". Clearly lying.
I knew the veins hurt like hell. Lesson learned. Mark the 'shot spot' before applying heat so I can actually see what I'm doing.

~~~~~~~~~~~~~~~~~~~~

Haiku - I Am Mostly Brave 

by Judy of Peace Be With You

If I get weepy,
It’s usually because
I miss who I was.

I know I’m still me,
But my new garment sometimes
Does not fit too well.

I am mostly brave.
I smile through a lot that pains.
Aren’t I just like you?

Haiku - Remembering 

by Judy of Peace Be With You

I sometimes forget
how impaired MS makes me.
I think I'm normal.

Looking at others
buying groceries with ease
reminds me I'm not.

I must remember
what it’s like to feel healthy
so my brain does too.

Haiku - Starting Over 

by Judy of Peace Be With You

Graceful is someone
who accepts life’s ups and downs
with cheerful aplomb.

I am sometimes good.
I scale the rocks and ridges
without falling down.

But frequently
I stumble into the ditch.
I must start over.

~~~~~~~~~~~~~~~~~~~~

Laura discusses Creating Community, Loving our Brokenness, Inner Travels & Transformation

Broken Tailed Traveler

How can I respond to the kind things you have all said to me in comments here on this blog and privately through email, except to say that I am grateful that this wasn't about me? I say this with anavah (humility) in my fullest understanding of the word. I was taught through the study of middot (soul traits) that this word (at least in Hebrew) does not mean humble as in lowly, but instead it means knowing when to step forward and take ownership and recognizing when to step back and allow others to shine. Perhaps in this instance we have all stepped forward in unity, illuminating the world with our shared awareness of the blessings we have received, despite or even because of our brokenness, with full acceptance of joy, much like this broken-tailed butterfly appreciating the fragrant orange flowers upon which it is feasting. I may have had a seed of an idea that became the first stitch in this quilt but it grew from the wisdom of many individuals collaborating. For this word quilt is truly an ode to all of us who participated in creating community here in the blogosphere as well as the travelers who have stopped by to witness our gratitude and in turn have become part of this comforting blanket; a community of humanity far and wide. This whole experience has been an unfolding, blossoming, opening, song of souls, blessing life; each of our unique voices joining in to create a harmony that is complicated, textured, rich and sweet. Indeed a choir of love that I hope will continue to reverberate in our hearts for a very long time.

As you can probably tell by my improved vocabulary, the steroids are beginning to heal the swelling in my brain. Over the past two weeks I have traveled to many lands much like this blog entry, at least if you had heard the changing accents through which my brain has conveyed the English language through my voice, it would appear that I was quite the world traveler. It has been a fascinating journey for my family. Every morning I start the day sounding completely different from the day before. Even inside my mind I hear whatever voice will follow before I open my mouth to talk…certainly a clue of some kind to an aspect of the process of speech formation. When this all started two weeks ago, my pitch was higher, my English was halting and kind of “broken”. I could easily have been mistaken for a recent Chinese immigrant, just learning my own mother tongue, American English. Then my syntax would be confused and I sounded somewhat like Yoda from Star Wars. At other moments my r’s were completely gone as were unessential words like “a” and “the”; s’s were not present to indicate plurality. Then I would go back and forth from this more toddler like formation in speech to a slightly southern sounding voice, a lilt to my voice as though I were from Georgia or South Carolina. Yesterday my pronunciation shifted so that I sounded like I was from somewhere in Northern Europe; an undisclosed country, but certainly not the Philadelphia accent I grew up with. Today the morning began with toddler speak and difficulty retrieving words but then for most of the day it has been a combination Irish brogue with a slightly Canadian flavor. Late this afternoon, around 3:30 or so, my normal voice, with proper syntax and most of my vocabulary returned. I did go back to Irish for a wee bit this evening and then found my natural voice again. Why this fluctuation and world travel is happening in my brain is a marvel; a mystery of misfiring neurons altering my speech patterns, I suppose. It has been a “long strange trip” (to quote the Grateful Dead) to be sure. It is as though I am an actor or perhaps channeling the voice of another being, and yet beneath all of this lies my “witness consciousness”; my own thoughts below the surface sometimes accessible through language and at other times just “watching”, unable to fully communicate all that I wish to convey. And so admittedly there is frustration, especially when I can’t remember the precise word I want or when I sound more like Elmer Fudd than a 44 year old woman…but my curiosity about this bizarre phenomenon has allowed me to once again discover the blessing through the humor of this situation. Yes this time around it is the gift of laughter at the surprising nature of MS that is sustaining my family and me. My eldest daughter is sorely missing my brogue this evening. This was her hands-down favorite. I must say we all enjoyed a moment the other night when I exclaimed while viewing a movie: “This is weally, weally, cweepy!”

Who knew I’d feel a loss as my completely uncontrollable speech patterns began to disappear?! But tonight as I’m writing this, even I’m a little bummed out that I just sound like ordinary me again. And to think, when this all started I cried! I don’t know how I’ll sound tomorrow morning, of course…the hour is late, before I know it day will break and a new adventure will be revealed.


This concludes the 50th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 17, 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, December 15, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #49

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

Sherry (aka momdukes) blogs at HealthCentral. She is one to always share a kind word or two and often makes me smile. I hope you enjoy her Walk Through Photographs.

MS through photographs, tell me your thoughts.......

Butterfly Kisses

Each morning regardless of MS, a kiss is what wakes me up!

Come Sit With Me

Sometimes when I am feeling down, I find a nice place to sit and to be alone with my thoughts.

The Lone Bench

Sometimes when I need a place to go and gather my thoughts, I look for a "Lone Bench."

Summer's Last Blooms

Summer has come to an end, so I go and sit among the last blooms, MS & all.

Among the final blooms, MS does not exist.

I hope you have enjoyed this little journey with me. It is like Calgon, just for a moment it takes me away! MS gives us all a hard time sometimes, but we all manage to find that happy place

sherry/smomdukes

********************

Nadja of Living! with MS and Poems from the Blue Plane shares a powerful reflection on relationships and house-cleaning. Perhaps its best not to confuse love with vacuuming.

"Love" in a Vaccum
I feel a rant coming on--

You told me you loved me
So when I got "sick"
You showed me you "cared" by vacuuming.
You were a damn good vacuumer
Very thorough--
I felt guilty because I was too ill to help.

I grew stronger as time passed.
I wanted to return your love so I vacuumed.
I was tired the next day.
You were angry--
It was my fault I was sick,
I dared to vacuum and I brought this on myself.
You forbade me to vacuum.

More time passed--
I vacuumed again.
I emptied the vacuum
But I "Did it wrong"
And left you a mess.
Out of "love"
You cleaned it up.
Again, you forbade me to vacuum.

I vacuumed again.
I was sick the next day.
Later, I wanted to vacuum again but the vacuum was full--
I asked how to empty it and you told me,
"You are not allowed to vacuum.
I will not teach you to empty the vacuum,
Then you won't be able to.
I'll do it for you, don't worry baby.
Save your energy to do nice things for yourself."

I saved energy by not vacuuming.
I went to yoga.
I wrote part of a book.
I painted a picture.
I had lunch with my sister.
I celebrated me just like you told me to.
I felt good about me.
I was happy.

You got angry.
"If you have so much energy,
Maybe you could help out more."

"Ok, how do I empty the vacuum?"

"Oh, it's not the vacuuming--
I didn't take it over so you could go to yoga.
I clean so you will have more energy."

"Great, then you don't mind if I go to yoga?"

"Well, it's ok if you plan one or two of your own activities but only if you save some energy to do things with me."

"Ok, so you resent my free time?
I can do more around here.
You should have fun too."

"No, I don't mind doing this.
I want to help you.
I want to show you that I care.
Let me help you."

"Ok, are you sure you don't need my help?"

"No, I'm good."

"What do you want to do today?"

"Oh, I kinda planned my own day while you were sleeping."

"You did? I thought you wanted to hang out."

"You slept too long."

"I thought you wanted me to take care of myself."

"I do but you slept until 10:00."

"I'm sorry. I'm ready to hang out now. Just tell me when you are ready. I'll just hang around."

"Oh, you should just go to yoga or take a walk with your sister."

"Yeah, but I want to hang out with you."

"I think I'll just do my own thing--"

I can still sense the depth of your love. It is like an ocean that I almost drowned in.

********************

Richard regularly cracks me up. If you haven't yet, please go visit his blog at Everyone Here is Jim Dandy.

My Newly Discovered Active Lifestyle

The first thing I decided to do after being diagnosed with multiple sclerosis was to climb a mountain. Why? I don't know. I guess because it was there, and it just seemed like the natural response to being essentially crippled.

Curiously, as I flipped through the pages of various MS magazines, I found that almost everyone else having MS had already decided to do the same thing, and moreover had for the most part already done it. (I know this because there were pictures).

I determined therefore to not only climb a mountain, but to do so in the dead of winter, preferably in the midst of a blizzard. A blizzard of unprecedented proportions. And a hurricane on top of that, if at all possible.

Just now I'm still waiting for the proper weather conditions, and in the meantime collecting the needful supplies in anticipation of the day. Ropes, for instance, grappling hooks, a decent pair of boots, a stocking cap and ear muffs, mittens (naturally), a loaf of bread for a crumb trail, and of course my various medications, as well as candy bars and cigarettes. I figure the Copaxone will stay cold enough in the expected climate (which is good, because I certainly do not intend on lugging a refrigerator up the side of a mountain--not in my condition).

In preparation for the big day--by way of toning up, I mean--I have begun to look into the idea of marathon running, as I see (also from the magazines) that this form of endurance exercise, though seemingly quite out of the question, is actually quite common among MS sufferers--preferred, though only slightly so, above hang gliding and minor league baseball.

Who knew that a disease would turn me into a sporting fanatic? God works in strange ways indeed.


This concludes the 49th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 3, 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, December 1, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #48

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

Sherry (aka Have Myelin?), who blogs at Words Salads: The Demyelination of Me and Postcards of My Life, recently did a little Four Wheelin' and has brought back some great photos. I hope you enjoy this sampling as much as I have.

Life is like this: a journey of unknowns with many bumpy mistakes

Sometimes it's a long climb back



Where the wild things are



MLK: “Carve a tunnel of hope through the dark mountain of disappointment"



India Arie: "Beautiful Flowers", a song for every girl who has been thru something



Haze and rain eventually go away



The road less traveled can be a bit crowded sometimes



Thank you, Sherry, for sharing such beauty!! All images copyright Sherry Turner.


This concludes the 48th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 19, 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, November 17, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #47

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

Poetry, Positivity, and Battles

Haiku - Caretaker Exchange
by Judy of Peace Be With You

I have MS but
My caretaker broke his hand.
I am caretaker.

Marriage vows promised
In sickness, in health, rich, poor
Partnership defined.

I am nurse and cook
Dizzy, foot dragging, stumbling
A delicate act.

Staying Positive is Hard! 
by Maryann of azoyizes and MS

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?

Haiku - We All Fight Battles 
by Judy of Peace Be With You

No one wants to hear
What is wrong with me today.
We all fight battles.

Mine might seem special.
They are only so to me.
Forgive my weakness.

It’s just that some times,
MS fear seems to trump joy.
My resolve falters.

How I Fight MS 
by Lisa of Brass and Ivory

Today's the big launch of a top secret project which a few other bloggers and myself have been working on for the past couple of months.

How I Fight MS
Five people. One goal:
to live victoriously with MS

I like the concept of living victoriously with MS, because that is what we each strive to do I think. MS is not something we conquer but something with which we can live a positive life.

The other bloggers involved in this project include:
Jen of MS Strength
Julie of Maybe I'm Just Lazy
Kimberly of My Journey with MS
Bill of Plates and Palates

Please tell me what you think. Thanks.


This concludes the 47th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 5, 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, November 3, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #46

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

Disability, Poetry, and Superpowers

Are We Disabled?
by Jackie of MSunderstood

So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy.

I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry.

Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy)

Disability is defined by the Americans with Disabilities Act of 1990 as "a physical or mental impairment that substantially limits one or more major life activities.

Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me.

At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems).

What is disability to you? How do you answer these questions?

Poetry: 340 and Music
by Mary at Travelogue for the Universe

Three Four Oh

340

The code

Some one

Thought

Should describe what

I have and others have

And try to describe

By words

And symptoms

As varied

As the colors on a rainbow.


340

The international number

That doctors use

And insurance companies

Cringe at when they see

The number

That means expensive

Meds, treatments and tests

And a person who may not work

Long enough to pay it all back.


340

I looked for wisdom in that number

And some sign

That the number meant something to me

Or those others with what I have

That quirky strange set of symptoms no one can see but me right now

Some day perhaps I could be identified

By wheels or a cane or a staggering gait.

For now I can keep others from knowing

What I have

Is

340

_____________________________________________________
notes: "340" is the International Coding Term for Multiple Sclerosis. It is used for Doctors, Hospitals, billing, etc. In numerolgy it is reduced to "7" which is a very unique number. Am I over googling??? Oh, who cares....mary _____________________________________________________

Which Superpower Would You Choose? 
by Bibliotekaren

If you could have any superpower, which would you choose? A local radio show poses this question in a game called Blatant Stereotyping. From what I recall, the favorite answers are usually along the line of being invisible or able to read minds. Superpowers which seem likely to introduce more problems if you ask me. I'd never really contemplated which I'd choose because, well, it's pretend and I couldn't think of one that didn't serve up its own dilemmas. That is until the other morning.

Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.

Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.

So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.

The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.

Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.


This concludes the 46th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 22, 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, October 20, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #45

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

Inspiration, Humor, Good News, and Immortality

MS: What Will the Neighbors Think? 
by Jen of MS Strength

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and Bill and I had both lost our jobs— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!


Ah, the humor of our MS Bloggers. It pleases the soul and lifts the spirit. Sometimes it even causes bursts of laughter.

Joan caused such a reaction recently with her very simple post...

One photo.

One title.

One cute chick.

Joan of A Short in the Cord says,

"I Guess They Saw Me Coming!"

High School Reunion and Tysabri 
by Maryann and Montana

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.

Embracing Mortality, Living Immortal.... 
by Linda of Brain Cheese

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.

*******

At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...


This concludes the 45th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 8, 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, October 6, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #44

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

Please complete this survey before September 14, 2009. Thanks.


HOPE

A special story shared today by Judy who blogs at Peace Be With You.

Hope got up that morning and breathed in the sunshine air. That’s what she called it—sunshine air, that quality of air which shines brightly and thrills with promise, of shadows remaining distant, of strength staying resolute. So she breathed in the sunshine air and thought, Oh, my, this is the day that the Lord has made. Let me rejoice.

She was heading to the kitchen to prepare her morning toast when she tripped over a—what did she trip over? She looked down, but the tile floor was as smooth as ever, no stray objects around her that she could see. Must have been daydreaming already, she thought. I’d better get my act together so I can go out and enjoy this sunshine air.

The first thing she did when she walked into her blue-and-white kitchen—hey, weren’t those hand-painted, blue willow plates on the walls just great?—was to pull open the French doors to the patio. She stood at the threshold, her hands propped high above her on either side of the door jamb, and breathed in deeply. Jasmine, even a hint of morning dew, filled her lungs. Promise, that’s what this day reminds me of, she thought. Of how a day is always the beginning of the rest of your life.

She walked back into her kitchen, pulled out two slices of oatmeal bran bread and the jar of mango preserves bought the day before at Morning Glory Farms. After putting the bread in the toaster, she turned the lid of the jar to open it. Except it wouldn’t open.

“Drats. I should have bought that jar opener I saw at the store yesterday.”

It had seemed like such an unnecessary thing to do at the time. $13.99 might not seem like a lot to others, but she had decided to save every penny she could toward a vacation hiking up the Costa Rican mountains with other members of the Audubon Society, and $13.99 was 1,399 pennies.

She tried again to open the jar. The lid wouldn’t move. Her hand kept giving out at the wrist, as if it lacked strength. Hearing the sound of rustling leaves coming through the patio door, she remembered—this is a day of sunshine air. Then she reached into her pantry for the strawberry jam she usually used except on days like today when promise seemed especially worth celebrating.

That’s okay, she thought. Strawberry jam is good enough to celebrate sunshine air. Anyway, it also came from Morning Glory Farms, and everything they produced was a miracle.

She went to place the jar on the counter, but missed the edge. The jar dropped to the floor, red jam spilling onto her white tile and splattering her cabinet doors, shards of glass everywhere. After gazing at the broken jar on the floor for long moments, she leaned over to pick it up, but lost her balance and landed on her hip on the hard floor. In the stunned moment after landing, she thought, what just happened? Then she quickly examined her arms and legs for cuts. Somehow, miraculously, she had fallen where there was no glass. Only a bit of jam stuck to the hem of her short, frilly nightgown.

“See, I told you,” she said, using her elbow to get off the ground. “This is a day of promise.”

After wiping clean the mess on the floor and cabinet doors, she picked up the edge of her nightgown, and rinsed the jam off. Her toaster had long since rung to tell her the toast was ready so she threw out the hardened slices, dropped two more in, and went looking for something to spread on her toast.

Butter, isn’t that what most people put on toast? But did she even have butter? She never used ordinary butter, not even for cooking. One thing she had always been proud of was how she ate right, exercised, and kept a good attitude.

She opened the refrigerator door.

No butter.

The toaster rang.

She gazed at the toaster, heard the leaves rustling behind her, and sighed. Then she squared her shoulders and reached for her toast. She slid the slices onto a plate and strode to her outdoor patio table. There she sat, breathing in the sunshine air and smiling before she bit into her dry toast. That’s when she noticed the pamphlet on the adjoining chair. She thought she had thrown it out the night before, but apparently not.

The designer who laid out the pamphlet’s artwork must have been a cheerful sort—or not knowledgeable or smug or superior or something—because he chose uplifting colors. Hope stared at the pamphlet until she remembered her toast was now growing cold. She bit into the dry toast. The crisp edges seemed to scrape across the delicate upper skin of her mouth. Her skin in general seemed awfully sensitive these days, and she reflected on how skin was supposedly the largest organ of the body, which meant she was just one big sensitive organ.

She lay the toast back on her plate. I probably should use paper plates from now on, she thought. Less risk if I drop them. From the patio, she scanned the blue-willow plates she herself had hung in her kitchen. It didn’t seem likely she could add another, not just because of the money but because she’d better donate her ladder to someone who could actually climb it.

She picked up the pamphlet from the adjoining chair, gazed at its aqua and apricot tones and thought, the designer should have made sure the pamphlet’s contents were equally uplifting. Or were the pastel tones intended to take the edge off the life sentence contained within? Is that what Hope had to do now—paint her life in pastels?

She had always hated pastels. It was the primary color spectrum of a tropical jungle or the honesty of Delft blue china she always preferred. She laid the pamphlet down and picked up her toast.

Stay with the program, Hope. Stay with the program. Remember, this is a day of promise.

A ray of light filtered through the Japanese maple usually shading her patio. It lit up Hope’s face and she lifted it to let the sunshine warm her. A breeze picked up the pamphlet in pastel colors, and it fell to the flagstone terrace.

Alerted by the sound, Hope watched as the pages fluttered. Then the pamphlet closed on itself. Living with MS, the teal-colored title said.

Saving 1399 pennies was not going to make a hiking vacation in the Costa Rican mountains possible, was it?

Hope swept up her plate, most of the toast still uneaten, and headed for the kitchen door. There, head bowed, she stopped momentarily before turning to look at the patio again. The sun is still strong, she thought as she lifted her face to warm it. The plate in her hand dropped to the flagstone and shattered.


This concludes the 44th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 24, 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, September 22, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #43

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

Yoga, Tysabri, and Insurance

For My Students: Yoga Invocation 
by Nadja

When I teach yoga I like to give freely of myself, to nurture my students and to help bring them closer to their true selves.

Nevertheless, I get as much out of my teaching as they do. Teaching yoga gives me a home, a place of sanity to stand when all I want to do is howl at the moon. It reminds me to breath. It reminds me of my favorite prayer by Saint Francis of Assisi:

"Lord make me an instrument of thy peace
Where there is hatred, let there be love
Where there there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light.
Oh divine master--
Grant that I might not so much seek to be consoled, as to console
To be understood, as to understand
To be loved, as to love
For it is in giving that we receive,
And it is in death to self
That we are born to eternal life."
Amen.

My heart is filled with gratitude for the things I receive from teaching yoga. I bow to my students. I bow to the teacher in all things. I prostrate myself to the divine with the faith that I will find a way no matter what.

Let yoga be your candle in the dark.
Let it lift you and fill you.
Let it in inspire you
Take what you discover on your mat into the world
And create peace, love and harmony.

Tysabri and Little Pieces of My Life
by Azoyizes

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Getting Squeezed
by Lisa of Brass and Ivory

This week I received the annual note from Carefirst BCBS, my insurance company, informing me what my new health insurance premium rate will be for the upcoming 12 months. Of course, I expected that it would go up, no matter how I wished it wouldn't.

What I didn't expect was HOW MUCH it was going up!! 31% increase

OK, so it's not the first time the rate has gone up substantially -
In 2003, it was 22.2%. In 2004, 18.2%. In 2007, 19.9%. In 2008, 18.8%.
(see graph below)

But COME ON. Enough is enough. another 31%?

For insurance which doesn't pay for my MS medications, I will be paying $5172?

That's just for me, no one else, and is not subsidized by any employer since I am self-employed. And unlike most folks who have employer-sponsored health insurance, I will be paying Social Security, FICA, etc taxes on that $5172.

Why doesn't Carefirst cover my main MS medication, Copaxone?

• Because the drug benefit for individual policies is capped at $1500 annually.

How do I get Copaxone if insurance doesn't cover it?

• I have to qualify for assistance from NORD which administers the PAP.

How do I do that?

• I must earn less than 200% Federal Poverty Level (FPL) and can't have significant amounts of money in savings.

How much is 200% FPL?

• This year (2009), it is an Adjusted Gross Income (AGI) of $21,660.

For more on this story, see The Value of Money or Value of Health: What Do You See?

Now, to be fair, the $5172 in insurance premiums will not be 24% of my 'total income.'

Since I'm self-employed, I get to deduct the amount spent on health insurance premiums before income taxes are calculated. So it's a minimum of 19.3%, after Social Security/FICA tax is accounted for and before the AGI is calculated.

But, please tell me. Who can afford to spend 19-24% of the highest level of income they can afford (or are allowed) to earn for health insurance premiums?

And let's just say that for 2008 I did earn considerably less than 200%. In fact, $5172 really would be closer to, if not more than, 25% of total income.

According to proposed health care reform legislation, affordable premium rates for someone with my income level would be closer to 5% of income AND I would very likely have coverage for my medical needs, including pharmaceuticals.

A few weeks ago, I sat down and calculated what medical expenses were included during one year in obtaining the routine care I require. That detail can be read at Living with Multiple Sclerosis: The Cost of Chronic Illness.

Update: Now it looks like the Public Option just might get dropped during negotiations in Congress. sigh.


This concludes the 43rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 10, 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, September 8, 2009.

Thank you.

Comments for this post.