I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, April 23, 2009

Carnival of MS Bloggers #34 - Expressions

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

"No words to express....."

dis-in-tə-grāt = To become reduced to components, fragments, or particles.
I have undoubtedly avoided writing about my Multiple Sclerosis for the past year. It makes me sad. I feel like writing about it makes it real and THAT makes me sad. Truthfully though, just living with it makes me sad. Not every day but often enough to be a thing I want to avoid. There are other things more putrid that I would rather do lately than discuss, talk or write about than what MS is doing to my body.

I need to start by stating that I felt compelled for the first time this year to fundraise for the MS Walk. Compelled because I began to feel a new sense of urgency I never felt before and it was brought on by a very upsetting new change in the landscape of my young body caused by…MS. First it was my left foot that started to look strange. Later it was confirmed by the Physical Therapist that I had atrophy of my left leg, ankle, foot and toes. Followed by a month ago, when I noticed after I got out of the shower that I had a massive dent in my upper thigh/hip area. I was informed that this is also an area of atrophy caused by MS.  

Informed. No one even attempted to soften the blow to my youthful and appropriate vanity. No, “I’m sorry, this is what MS does.” Just: “Yup, it’s the same as your foot.” So, god only knows if I will wake up tomorrow with another gap in my muscle on that leg. I hate MS.
There are no words to express how I feel about what MS is doing to my body. I have been struggling with another MS related change. My left foot no longer stays flat when I walk due to spasticity. I just tried out my custom fit AFO for the first time and although it needs some adjustments, it does help to keep my foot flat. The problem I have with it is that it makes wearing shoes impossible. Will I ever wear the thing? Probably not. It’s bulky, and due to my Dysautonomia I can’t walk that far anyway.

It is difficult to explain to people what it’s like to be almost 34 years old and not be able to walk with a normal gait, if at all. Or to be steadily losing your vision. Or to watch your young body be slowly disfigured by a disease you can’t understand and you can barely even pronounce.
I try to stay positive and most of the time, I am told by people that I am positive but somedays the effects of this disease on my life and body are hard to ignore. I truly hope in my lifetime they find a cure or something close to it.

I have been torn lately about how to confront my MS and I have some important choices to make this week. I have been off Tysabri since July 2008, taking my time to choose which disease modifying drug to go on. I realize I have taken too long because I have had a few small flare ups. I am thankful they have been nothing serious. Next week I see my Neurologist and I may choose Avonex. I am apprehensive about it because I had a bad reaction to Betaseron and they are so similar. I wish there was a better answer to treatment.
Time to choose…

MS'er Faith says
Here's to you...
This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.

I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.

My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.

I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?

The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?

I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.

I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?

I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.

I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.

A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thank God.

I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bolt of spiritual lightning.

This concludes the 34th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 7, 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, May 5, 2009.

Thank you.
Comments for this post.

Thursday, April 9, 2009

Carnival of MS Bloggers #33

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

"Who I am is stronger than any disease."

by R.W.Boughton
Had my first Complimentary Customer Care Conversation with the Copaxone Consultants yesterday (too bad yesterday doesn't start with a C). You know, the ones where a representative calls in order to share how easy, and actually fun it is to inject yourself with toxic substances. Got my free products coming, of course--a durable plastic storage container for 30 glass syringes, another plastic container for travel, and a gel pack for injection sites. I was hoping for some Cuban cigars as well, but it looks like these are no longer being offered (if they ever were).

I also had the opportunity to rate various aspects of treatment and personal satisfaction on a number scale--1 equalling No, not really, and 4 meaning Yes, I love it!

When asked about my level of commitment to the treatment, I answered 2.

This apparently caused some red flags to shoot up with the interviewer.

Why 2? Are the injections unpleasant? Is there something we can help with? Do you believe you really have MS, or are you unsure? Do you need more literature about Copaxone?

No, it's just this irritating, unreasonable gut feeling that I cannot seem to escape--the feeling that somehow when ones body objects so strongly to the introduction of this or that foreign substance, it could somehow mean it's not a good idea.

Your body objects? How do you mean? Is there something about the injections that you don't like?

Well, I uh . . . .

Would you like to have one of our nurses visit your house?

No, I'm just saying . . . .

Are you having pain? Are you depressed? Do you have questions? Are you dizzy, breathless, confused, disoriented, having chest pains, gangrene, paralysis, loss of vision or function in any body part?

You know what? I wanna change that 2 to a 3. It's really not a 2 at all. I don't know why I said 2. It's more like a 3, honestly, or even a 3-1/2. In hindsight, I'm changing it to a 3-1/2.

Now that's more like it, Mr. Boughton. Keep yer chin up, will ya?

Happy trails to you, until we meet again . . . .

The following was just too hilarious to pass up. Enjoy, Lisa E.

says Rae from In It For the Parking
I know I haven't been posting. I also know that I start almost every one of these entries out this way. Well, this time, I'm not going to promise to write more frequently - so there.

Right now, I'm up with insomnia. I'm aching in the WEIRDEST places (my forearms and shins), but other than that, I couldn't be better.

Over the last several days, I've been getting back to myself - almost entirely. No seizures, no numbness, no nothin. It's really pretty great.

But that doesn't explain why I haven't been posting.

I know that journaling my experience may be beneficial for me and for others - but it's one thing to talk about it in your diary and another for you to think of it as your responsibility to be a strong voice in the cause.

When it comes down to it, regardless of whether or not I thought it would help other people, I created this site for me. I needed to prove that I was giving back to the community/world or whatever while I was unable to get out of bed or off the couch.

Now that I'm getting better (and by better, I mean totally used to my seizure meds), I'm able to resume doing things that I enjoy and things I don't enjoy but must do. (Can we say studying for the bar exam?) I'm not saying that it leads to less time to post here, but rather that I'm less focused on my body, and hence less focused on the subjects that pertain to that body.

Not posting on In It For The Parking as though it were my job is helping me to stop letting MS become the defining characteristic of my personality on and off screen.

I doubt that I'm alone in this - having to make the choice between focusing on my self and focusing on my body or the disease.

It's way too easy to get caught up in how you're feeling - before long, you sound like one of those horrible cartoon caricatures of old people who can't find anything to talk about besides their bodies, medicines, doctors, etc. I don't know about you, but that *certainly* isn't the person that I want to be.

At first, I cried when I thought about it -- how I'd never be able to be as physically well as I was prior to having this disease, how bizarre it would be to try and make positive changes when OBVIOUSLY everything seemed too hard, how hopeless the rest of life seemed.

But suddenly, a light peeked through my stormcloud of doom, and I remembered something very important.

Who I am is stronger than any disease.

So, I'm getting back to me.

by Nadja at Living! with MS
One of the things that really struck me during my recent conversation with my dad was the notion that I should be doing creative things. I agree. That is part of why I am drawn to blogging. This of course leads to another excellent point... My father said that he noticed that I often use this blog to do battle with myself. He is absolutely right. I work out my thoughts here but I also spend a great deal of time beating myself up and feeling anxious, guilty and sad. This takes the blog from the realm of pure creativity, into personal therapy but not always the good kind. Too often, my posts perpetuate patterns I would like to change in myself and a good dose of self-loathing as well. I think in the spirit of creativity and stress-management, I need to change the direction of my writing a little. My blog does not need to be a stage for fighting with myself, but it can be a good place for finding myself. With this in mind, I find myself returning (at least in thought) to my long neglected memoir.

My father suggested that I was 14 or 15 when the foundation for the MS was laid in place. He said that at this time I lost touch with who I really was and began the long battle with myself. Whatever the case may be, I do remember losing a lot of my spontaneity, creativity and joy around this time. I became a perfectionist, a performer and a critic. I started to see myself through the eyes of an imagined, outside observer who constantly tracked both my accomplishments and failures. This was around the time I first experienced anxiety and depression. Slowly I left behind many of the activities I loved as a kid. I eventually quit both dance and gymnastics (things I had always loved). When I was little, I was an uninhibited choreographer but by the time I was about 16, I was stifled when I tried to just listen to music and dance. Sometimes I have vivid flashes in my mind of the girl I was. Now, whatever comes of this, I want to remember that girl and draw myself closer to her, not for my dad, not because of MS but because this may be the key to a brighter future for me.

I remember a story that I was once told that inspired me to great leaps of creative thought.

Once upon a time there was a little girl who journeyed with her brother into a tomato plant. They became tiny and traveled right into the veins of the plant. They did this by concentrating on the plant with their eyes until they were absorbed into the stem. Once they were inside the plant, they seemed to float along in the liquid center of the plant. They journeyed from stem to limb and then eventually into a giant, ripe tomato. There, they had fun playing until someone plucked the tomato from the vine and then they had to find a way out quickly when a giant mouth threatened to consume them.
I may have gotten the story wrong but that was the kind of tale that inspired me as a child. Like Tinkerbell from my favorite childhood play, "Peter Pan" said, "You just have to believe." I used to think that if I believed enough and looked hard enough, I would see the magical things from story books.

I would sit in the garden and stare at a plant for a long time, just waiting to be drawn inside. Sometimes, I would hide among the flowers and imagine that soon I would encounter a fairy. I would even dress up and pretend I had become one.

Once, when I was about 3, I saw a unicorn. The strange thing is that to this day, the image of the unicorn across the pond is still cemented in my mind. She glows white in the moonlight at a distance and despite what my rational mind says she is there.

Today I am grateful for this chance to remember...

This concludes the 33rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 23, 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, April 21, 2009.

Thank you.
Comments for this post.