Carnival of MS Bloggers #116

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

Optimism, Breathing in Sync, and Steroids

Rewire Your Brain For Optimism

from Lisa Emrich of Brass and Ivory

Did you hear of the Everyday Matters program co-sponsored by the National MS Society and Sanofi-Genzyme (developers of Teriflunomide and Alemtuzumab)?  If not, please read this post in its entirety at HealthCentral.

Five individuals living with MS will be chosen to work with the Everyday Matters team to map out strategies for achieving a desired goal or addressing a specific challenge in their everyday life through positive psychology.  The lucky five with work with Shawn Achor, renowned psychology expert and former Harvard University lecturer, Kristen Adams, a mom and Emmy‐award winning producer living with MS, and Michelle Clos, a life coach certified by the International Coach Federation who is also living with MS.

I had the pleasure of speaking with Kristen Adams earlier this week about the program, about positive thinking, and about living with MS.  As a professional producer, Kristen’s expertise is in video and telling stories.  She will be conducting the initial interviews of the five participants living with MS to introduce them to the MS community online.  She will keep in touch with them over the course of the program and visit them near the end to document how each has achieved a desired goal or worked through a particular challenge. 

After attending a weekend workshop with Shawn, Kristen, and Michelle in Denver, Colorado from July 13-15, 2012, the five participants will receive six months of personal coaching from Michelle. The participants will also be keeping a video diary throughout the program to share their experience.  In November, the entire group will be brought together again.

Kristen shares that the most important part of the project is for people in the MS community to VOTE on the topics.  What issues are most important to you?  What challenges would you like to see tackled through the program?  The five participants will be chosen, in part, by how their own challenge or goal represent the interests of the MS community. 

During our interview, Kristen was very excited as she described how several of the ideas Shawn teaches are reminiscent of homespun wisdom - “If you don’t like your situation, change your attitude.”  You have the power to shape your circumstances.  “My circumstances necessarily aren’t changing but my attitude about my circumstances can,” says Kristen.  “I have the power to change my attitude about my situation.”  Changing your outlook can help you feel differently about unchanging circumstances.  

Shawn and the “Tetris Effect.”

Although Kristen admits to not playing Tetris as a youngster, she shared one of Shawn’s analogies with me.  I really liked it so I’m sharing it with you.

The game Tetris teaches you to scan for patterns.  The better you get at seeing the patterns, the better you get at playing the game.  Kristen shares that it has been discovered that “people who played a lot of Tetris, even when they walked away from the game, would start to see those patterns in life all around them.  So [Shawn] says, you can teach your brain how to scan for the positive in life.” 

Here’s a really simple exercise to try.  At the same time each day, think about three positive things that happened that day.  Kristen does this with her sons at the dinner table.  This “trains your brain to scan your environment for positive things,” Kristen says.  This is one way to rewire your brain for optimism.

If you are interested in participating in the Everyday Matters program, sponsored by Genzyme and the National MS Society, go to everydayMSmatters.org to learn more.  HURRY!  The deadline is next Wednesday, June 13, 2012.

remember not to stop breathing 

by stephen of one life: livin' the dream

i took a tai chi class many years ago, in which the teacher admonished us to remember to keep breathing, or, to be more exact, to remember not to stop breathing. when i was in high school, during my very brief stint in track, i figured out that the best way to pace myself was to coordinate my in-and-out breaths to my foot falls. i found i was able to run further if i could maintain this rhythm. years later, when i used to walk a few miles during my lunch break every day, i used the same technique, matching my breathing to my foot steps. it was a meditative process, even overlaying a mantra over my breathing.

i have in recent years had to give up both running and walking, but i have long been an on again, off again meditator, and the same mantra rhythm has stayed with me. i spent some time with a physical therapist who reminded me not to hold my breath when working with hand weights or doing other strenuous exercises. seems like pretty common sense advice, but i was, as probably many of us do, holding my breath as i strained. so much easier when the proper breathing is maintained.

oddly enough, i just recently discovered that, as i dragged myself down the hall with my walker, i was, again, holding my breath, and, how much easier it was when i timed my “steps” with my breathing. also made me feel less likely to fall. amazing how the simplest things can make such a huge difference.

Prednisone and Potty Mouth 

by Annette of How Did That Happen?

So after spending almost 3 weeks on solumedrol to fix my optic neuritis, I started a 3 month round because my leg went on strike - for 3 months.

Different people have different things to say about their steroid experience and I would love it if I could report a 3 month stint of boundless energy - happily scrubbing the kitchen floor while whipping up some creme brulee at 3 in the morning.  Sadly, I have never fallen into that bucket.  A list may be a more efficient vessel for my steroidal experience.

• Metal Mouth - as soon as the IV steroids make their way into my impossibly small veins, my mouth fills with the taste of metal.  It feels like I’m sucking on used tractor parts.  The only cure - peppermint altoids and Coke - together.  Well there is another cure - eating anything with a taste stronger than that of a tractor.  I went with the peppermint altoids and Coke during the infusions, but when I left, I stopped at every drive-thru between the doctor’s office and my house.  I bought and ate everything that wasn’t tied down or secured really well.  There were times I could have happily chewed off my own arm if there was no fried chicken or Lays potato chips within my reach.  (I’m a vegetarian, btw.)
• Weight gain - obviously due to the fried chicken, chips and pounds of key lime cheesecake I ate daily during those months, I gained 60 pounds.  This was the toughest part for me.  I had always been around 100 lbs and the 10 baby pounds I had gained were driving me crazy.  After the 3 months were up I tipped the scales at 170.  The fact that Rochester didn’t have an Olympic heavy-weight wrestling team was inconsequential.  I was headed for the big time.  Don’t get me wrong - 170 is perfect for some people - I get that.  My ridiculous standards are meant only for me.  The doctor’s advice?.. Steroid weight can be a bear to come off.  Super - thanks for that. So I spent the next 6 months eating gummy bears, crying to the Cosmos.. HDTH???  (Could it be that the answers to my HDTH questions are smacking me square in the face, but my delusional God complex, ‘perfect every day in every way’, and ‘off the charts D-personality’ are all plotting to conceal the answers that probably would have accelerated this drawn out process significantly?  Another redundant question.  Of course not.)
• Potty Mouth - This was really something.  I’m proud to be a Canadian with unflinching standards in the Emily Post manners department.  I understand that can be as annoying as dropping f-bombs to some people, but again - only my standards matter in this world - am I right?  (That was a redundant question.  Please do not answer it.  Thank you.)  The vile eruptions that poured out of my mouth while on steroids would shock a back-woods hooker on crack.  And no one was spared.  Michael got the brunt of it, but anyone that mistakenly wandered across my path got blasted.  My mother-in-law finally lost it one day and said, “Watch your God-damned mouth - you sound like a trucker”.  I’m surprised she survived my ensuing wrath.  I remember a drive-thru experience one day when I checked my order while still at the window.  There were only 3 10-packs of chicken nuggets.  I had ordered 4.  I began swearing at the skinny, acne faced boy behind the window, but he ran away.  The GAUL!  I actually parked the car and walked into Wendy’s so I could berate more people more effectively.  This was, of course, after I ate the 30 chicken nuggets.  The manager ended up giving me 3 free 10-packs as long as I left the building immediately.  Score.

This concludes the 116th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 21, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 19, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #91

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

Dancing, Empowerment, Walking, Spasticity, Acceptance

Exercise and Empowerment
by Taylor of Dancing With Multiple Sclerosis

Lately I have been trying to find ways to empower myself. I know, that sounds like a big pot of swiss, gouda and cheddar- SUPER CHEESY. But I honestly do feel that with an unpredictable disease like M.S, we should take every opportunity we can to feel like we have some sort of control over our lives.

I have found that the best way for me to feel like I have some sort of say in my disease is by developing a plan, and sticking to it every day. For me, that involves a healthy diet along with an exercise plan. Also, setting aside time for stress-busting meditation, and taking the medicines and supplements that I know will help me. Of these things, exercising daily is most certainly the hardest.

A little background on me: I grew up dancing and dance has always been my passion. I danced all though college and even through bouts of optic neuritis and neuropathy. I was also an avid runner, with four marathons under my belt and I worked as a personal trainer for years. Last year, the most debilitating fatigue I have ever experienced hit me. Getting though a 3 hour rehearsal or a 90 min dance class would lay me flat on my back for a good day following. I would also start visibly shaking and get very weak and dizzy after a dance class (literally crawling to the wall one time in a modern dance class. Humiliating) I realized that I had to adapt every workout for how I felt that day, week, month. This has been one of the hardest things for me to cope with. When I hear runners run by my kitchen window, the desire to get out there and feel the brisk morning air chasing me is almost too much. But I cant. At least not every day.

I've learned that if I set aside 30 min a day to exercise- I feel 20x better than when I make excuses not to. Some days I only have it in me to stretch and do very gentle yoga. Other times I have been able to run, cycle and even dance. All it takes is the MENTAL strength to say 'now I am exercising' and start. Of course, there are times when I have overdone it and spent the next day on the couch. But exercising actually helps me to understand my limits and know how to operate in a way that I move and stay as active as possible without making myself sick. And *yeay!* for endorphins! Nothing beats the great flood of 'happy' that comes after a nice workout.

Exercising is one of the ways I have found to empower myself. It reminds me that I have strength even if it's just the mental strength to TRY exercising. It reminds me that my body is this physical, powerful thing and that I am connected to it in a positive way.

Anyhow, I suppose I am on this subject because I feel so great right now- and the only thing that has changed is that I have gotten back on track with my diet and exercising. I am still dealing with the same symptoms I've had for a month (burning legs, numb face, bouts of trigeminal neuralgia) but I am feeling so empowered right now. I feel like I am FIGHTING M.S again, and not just sitting back and suffering. It's a great feeling.

.

What I Miss the Most
by S.S.O. from Multiple Sclerosis & Me

the ability to dance!

I'm talkin bout "bussin ah wine (the Trini dance for soca - gyrating ur hips to the music with or without a partner(s))", ballroom dancing, any kind of dance.  I've mentioned before that i cyah wine no more - wining with a cane and a stiff left leg  (my left side is the problem side - it's weaker, the left leg is generally the stiff one (it always wants to be straight)) is not pretty and does not feel right, so wining is out of the question.  All i can do these days is listen to the music, sway side to side (a slight mini wine if u will) and use my cane as a prop to stomp to the beat and in fact Saturday nite, i used it as my flag/rag and was wavin it in the air :-) - UGH!!!

I used to dance when i was growing up - modern dance - and always loved it.  As i got older i wanted to learn how to tango, so bout 5 years ago, i signed up with a ballroom dancing school.  I was quite good, if i do say so myself, but had to drop out when i realized that i would need to rob a bank to continue.  I was able to afford the lessons at first, but as i advanced and got to the level where i could perform at exhibitions and such, the cost became too much and even though i might have gotten away without robbing the bank the 1st year - beyond that there was no telling.  So instead of risking jail for a hobby, i decided to let it go.  For the short time that i did it, i enjoyed myself thoroughly and as i mentioned, i was quite good.

Nowadays when i'm at a fete or see people dancing anywhere in general, i feel a tug at the heartstrings - it saddens me just a little.  When we're partying, most of my friends will come and take a wine on my chair or me (wish i had a picture to share) - just depending on the type of chair :-) and i love them for that - but it's just not quite the same.

Spasticity Poem I

by Mary of Travelogue for the Universe

Quit pulling my leg,
You rowdy MonSter,
Couldn’t sleep past 4
Again.

Never knew what spasms were
When patients told me,

Hard to see,

Calf goes flat,



The Pain,

A Whimper,


A Grimace,
A bite of the tongue,

A face washed of smiles.

First goes flat, then gnarly, the muscles contract

In a schizophrenic symphony,

Discordant,

All wrong.

Rub my knee, flex my foot,

Jump out of bed, stomp like a weird dance,

Go away you spasms and pain,


Die you MonSter,
Die.

When to Ask For a Steroid Infusion

by Matt of Multiple Sclerosis Daily News

This morning I called the hospital to ask for a steroid infusion. My walking is very clunky and my hands feel very funky and I don't want to wait until it gets real bad to do something. For the past few weeks I've had a hunch I was going through an exacerbation. I didn't get in for an infusion this evening, so maybe tomorrow.

But now I'm not sure if I really need it. My walking is bad, but I can still walk. In some ways it feel better than last week. Tonight I walked a half a block and felt okay, so no infusion, right? I feel better than I did this morning, but it took me forever to get out of bed, which is why I called the hospital in the first place.

I'm confused, when should I get a steroid infusion? Is it only for dire emergencies or is it also for impending potential emergencies? I don't want to be "that patient" but right now I am, I'm potenitally wasting people's time. And I've done this before. I asked for a steroid infusion and backed out at the last minute six months ago.

I swear I'm not normally like this but with MS I'm paranoid. I waited until I couldn't walk at all to get my diagnosis, I don't want to do that again. So now I'm trapped in this bipolar situation where the sky is falling and then everything's okay again.

The thing about MS disability is you get used to it. One day you don't walk very well, the next day you figure out how to walk despite whatever went wrong using different muscles. Then you don't feel so bad. This is why I'm going on Tysabri, because I am the king of this. I work around new disabilities and then they don't seem so bad, but if you look at my best a year ago to my best today it doesn't look so good. I'm getting worse over time but I'm learning to deal with it, which is good for me, but it indicates that a new treatment is needed.

That still leaves the question, when should I get a steroid infusion. I have no idea. I really don't, and I hate wasting people's time.

Errands and Walking

from Judy of Peace Be With You

From force of habit
I grabbed my cane forgetting
distances are hard.

Walk, walk, walk some more
my walker left in the car
what was I thinking?

Errand to errand
I slogged on deeply fatigued
until I couldn’t. 

Stages

from Angela of Gracie's Mum: a Story of a Mum with MS

We’ve all heard about the Five Stages of Grief. You know, Denial, Anger, Bargaining, Depression and Acceptance. This model is applied to many different situations in life that involve some form of loss. Death, Divorce or Illness fall among the most popular, but there are of course many more situations in which one is forced to rally through the 5 stages. I am seeing my good friend go through this with her recent separation from her husband. Right now, she is fighting it out somewhere between Anger and Acceptance. I watched my mother in law go through all of these stages when my father in law finally succumbed to cancer. I, myself, have gone through these stages. I spent the most time on both Anger and Acceptance.

Which is where I find myself now. On the final stage, only, I wonder, why there aren’t varying degrees of Acceptance, like what happens afterward?

So, let’s recap my 5 stages: Denial, wasn’t one I spent too much time on, I was more in shock than anything else. I did have some moments of ‘this can’t be happening to me’ but they were fleeting because Anger is one dominant bitch that insists on riding ‘shotgun’ to no one. I was angry for being in the hospital, I was angry over the flip-floping diagnosis that encouraged the repeating of the first 2 steps an inhumane amount of times, I was angry because I was in the hospital missing out on Grace, Steve and my career, my students. I was angry that this was the hand I was dealt. I never Bargained, not for my life when I thought it was cancer, and not for my life when I knew it was MS. Who does an agnostic bargain with anyway? Depression, well, that’s a tough one. Of course I was down. I was stuck in the world’s, or at least this country’s, most disgusting hospital, who wouldn’t be depressed? I really feel though that the most time at any stage was spent on Acceptance. Because, there just isn’t any other way to live.

Adapt or Die right?

But, to say, ‘ok, alright, I have MS’ is totally different to saying ‘ok, alright, I have MS’ and actually living with MS. Excuse me, I mean, saying ‘ok, alright, I have MS’ and living in spite of MS. Yes, spite should be a stage of Grief for all of us that go on living to show life who really is in charge here. To show that although life may have handed us a crappy hand that we still go on to win the pot, still go on and all the while we’re flipping life the bird.

Because we have not only accepted our fate, but we’re going to rock it out while we do it.

I have only recently entered this ‘off the beaten path’ to Acceptance. Up until now, I accepted my life as a life that included MS. But I was very conscious of how exactly others would accept me with MS.

While in the Rehabilitation hospital I refused visitors other than Steve, Grace and my parents. I didn’t want anyone, under any circumstances, seeing me in a wheelchair, or trying, struggling to try, to walk. I also didn’t want anyone seeing me in that place because I’m sure that there would have been a few of my friends and family that would have not known better than to blow up on some unassuming nurse about why that place is not condemned. And that would have just been embarrassing. For everyone.

The first time I saw anyone during that period of time was at Chris and Emma’s wedding. I was still wearing the hospital bracelet and was out on a weekend pass. Wearing an AFO leg brace and using a cane with a wheelchair on backup, I allowed the world to see the MS me. I was terrified. At a pre-wedding get together I heard Emma tell Chris how at first she didn’t even know I was there until she heard me talk, and how I sounded so normal. I cried to myself hard that night in bed. And although I know that Emma was reacting as anyone would react to being shut out of a person’s life while they recover from paralysis brought on by a mystifying MS attack that left me almost senseless and in need of a brain biopsy. Without any contact with me there was no way she wouldn’t have thought otherwise. I get it. But it made me realize that people had an expectation. An expectation for the unexpected. There is no manual on how to prepare for that.

So I avoided it. Or tried hard to ignore it because sometimes it was unavoidable. Like when I still didn’t have my license back and relied on neighbours Lenna and Jenna to take me to physiotherapy appointments or for blood work. BBQ’s were tough because almost every deck has stairs to get to the dining area, so you have to go through the house and people you don’t know or haven’t seen in a very long time ask you what happened to you leg? Did you break it? Sprain it? MS? Wow, really? And then I’m MS chick for an hour and it’s hard to hide it while you explain the entire Journey Through Hell. And then you hear all the stories about the so and so’s they know who have or had MS and how they are either so normal you can’t tell or they died. I’m serious. And then of course there is the discussions focused on whether or not I’m going to Bulgaria for the ‘cure’. And then the ensuing explanation about CCSVI and my stance on the topic etc etc etc.

My saving grace was when I graduated from AFO and cane, to just cane, to nothing. And then it was super easy to hide it. And thus another stage of Acceptance: Pretending everything is normal.

Pretending everything is normal and denial are very different. I had accepted the diagnosis, the pain, the fatigue, the needles, the pills, the B.S. But I hid it because I didn’t want the focus of my life to be this disease. I wanted desperately to be able to seem normal just like them so that no one had to know about the MS thing. So I avoided the MS community completely for months because when you are part of a community you can’t get away with pretending you are not what you are that made you part of that community. I avoided eye contact with anyone in a wheelchair or with a cane. I was not like them. I had been like them, but I wasn’t anymore.

Then, I had a relapse.

I was scared, petrified actually, that the jig was up and my cover was blown and that the entire world saw me as a fraud. And then, through all the stages I went through that particular time while recovering from that flare up, I realized that I was kidding myself.

I threw myself out there. And, I screamed to the world that I HAVE MS. I have it, and this is what I’m doing in spite of it all: I’m living!

To live with MS, to be a wife with MS, to be a mum with MS means pretty much the same to me as to anyone else, you live within the confines of your limitations until they are no longer limitations or you move the hell on. Oh, as life goes on and the disease progresses, I’ll still worry about being the mum with the cane and what Grace’s friends may or may not think of me or her. Oh, I’ll still worry about being able to dance at her wedding. I’ll still worry that Steve does way too much around here and I’ll let guilt take over from time to time about not being the household-keeper-upper that I want to be. But I won’t exclude an entire group of people from my world because they too were handed a crappy hand in life and to see them is just too painful for me.

No, because I have too much to offer their world and vice versa.

Oh, it’s on.

Acceptance is a great stage, but allowing yourself to see the possibilities that acceptance brings you are even better.

And the possibilities are endless.

Rock on. MS or not. Happy Hump Day!


This concludes the 91st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 14, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 12, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #74

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

Memory, Language, and Humor

Proteins and Memory

by Mary of Travelogue for the Universe

Proteins and Memory,
are they one & the same?
If so true, it makes proteins
so important in our game.
The shots of proteins like the bee sting
can slow the MonSter that I know.
Is my brain full of complex
Protein strands imprinted with
Memories of long ago?
And will the funding last forever,
Will the protein soup be ever?
Will they some day, find a new way
to deliver protein feed.
To chew or swallow, cook or wallow in exactly
what I need?
For now I take the proteins,
shots really not that bad.
The only way I can, The only way is how
to keep the MonSter
far out on the curb.

Lost in translation

by Jenn of Losing It

The day we finally went to the ER was the day I couldn’t put on my underwear and then face-planted in my kitchen, my body contorted on the floor like some sort of crime-scene chalk outline. I thought about how I might be paralyzed and wondered which of my darling pets would start gnawing me first. Et tu, Ella? (Just to clarify: I wasn’t naked in my kitchen. Separate incidents. Not that there’s anything wrong with that.)

So we head to Baptist NLR, the closest hospital to our house, and begin the obligatory ER wait. I see the nurse, another nurse, a doctor, and then a neurologist. He is a young guy, but he put me immediately at ease. He was competent, thoughtful, thorough, and Indian. I only point this out because, as it will become clear soon, there was a slight language barrier.

He did all of the standard neurological tests (I know this because I had epilepsy when I was younger). And then he had me walk up and down the hallway of the ER. I say walk, but it was more of a shuffle-lurch I was rocking at that point. I think he knew within the first five minutes what was wrong with me, but, like I said, he’s thorough.

And then we went back to the small ER room. He told us I would be staying at the hospital, which came as quite a shock because I expected to be in and out and on my merry little way. (Why I thought this, I still don’t know. Optimism? Denial?) I just nodded, trying to be the perfect patient, even though my throat was closing up as the anxiety crept in. His words were competing with my inner dialogue, and losing.

I needed to stay for days of observation and treatment, he told us. And I would get on steel rods for those five days, he said. He left the room to get my admittance paperwork started.

“Steel rods?” I blurted incredulously to Nick, my carefully constructed composure now crumbling. “Why on earth would I get temporary steel rods put in me? What good will that do? I don’t want surgery. Let’s leave. I’ll just keep the gown on.”

I was in hysterics.

Try as he may, Nick couldn’t stifle his laughter, which nearly provoked me to start throwing hospital equipment at him (Latex gloves, by the way, aren’t exactly as threatening as they may at first seem).

“Steroids, Jenn. He’s going to put you on a five-day treatment of steroids.”

“Oh.”

I began giggling uncontrollably. Nick joined in, our chuckling filling that small room with the bad fluorescent lights and echoing down the hallway.

And in that moment we knew: Whatever came our way, we’d be OK.

Potty Humor in New Jersey

by Lisa of Brass and Ivory

Folks with MS are not the only ones who find value in appropriately-placed facilities.

 

"Reserved Seating"

"I Have To Pee"

After admiring the handiwork of these signs (and laughing), I just had to document the spottings.  Have you spotted clever signs on your journeys?  If so, please share them in the comments section.

This concludes the 74th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 4, 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, November 2, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #35 - Rollercoasters and Walks

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

"Rollercoasters, Steroids, and Walks"

Mowing, Planting, and Nice Neighbors
by Maryann

MS has taken some things away from me, or the ability to do some things. A little over two years ago, we sold our two-story home and bought a ranch that is on 1.25 acres. A few months after that, we bought a riding lawnmower. I mow the yard.

That lawnmower has given me so much pleasure! I have a responsibility to do that I absolutely love doing. When I'm on the mower, I have a sense of pride and I have a whole lot of fun. Once I mow the front and sides, then the fenced-in part in back (Montana's yard), I get to do the "back 40". This is a huge part with slopes. Have you ever mowed going down a slope? Sometimes I pretend I'm on a rollercoaster, let it rip, and yell all the way down! It's given me back a little bit of myself that had I lost.

Read the rest of Maryann's post here. Then see how she is Cooking Up A Storm.

I fixed these two recipes yesterday and today. My energy level is low, so I can't do too much at once but Montana needed more cookies for dessert, and I needed to make him more grains. I found buckwheat at the food co-op, plus bought two pounds of millett because that's the only place I can find it. Buckwheat (or kasha to us Jews) is cooked like millett except for one added ingredient--egg white.

How to Cook Buckwheat

Add 1 cup of buckwheat groats to a heated skillet, and add to it a beaten egg white. The egg separates the kernels as they cook, which prevents the groats from sticking together. Stir the buckwheat/kasha and egg mixture until each grain is separate and dry. Then, add 2 cups of boiling liquid, either stock or water (I added water), and a dash of salt. Simmer the mixture for 30 minutes or until the liquid is absorbed. I let this cool, then divided it into separate portions in zip-lock bags.

Crunchy Oatmeal Dog Treats

• 3 cups oatmeal, uncooked
• 1 1/2 cups whole wheat flour
• 1 cup cold water
• 3 Tbsp fresh parsley, chopped (natural breath freshener)
• 2 egg yolks
• 1 tsp baking soda

Mix all ingredients together. This mixture is a little sticky, so I floured my hands to work with it. You can make these big or small. Roll into balls and place on a greased cookie sheet. Bake 14-15 minutes in a 350 degree oven. Cool on paper towels. Can be stored in fridge for up to 2 months.

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

Ivy documented her experience with Solumedrol and a Prednisone Taper. Her series is a must-read and here is the beginning....

IV Steroids - Getting Ready

Tomorrow is Day One on Solu-Medrol. On Friday the company called to set everything up. They asked if they could drop off the supplies later that day, so I said sure. A gentleman arrived carrying an IV Pole, a white bag full of stuff, and a large silver envelope containing the medication. I put the Solu-Medrol in the fridge and put the rest of the stuff where the girls couldn’t get to it.
Later that evening, I took a peak to see what was inside. Me and my curiosity! There was a crazy amount of stuff in there. It was all of the stuff I try not to see while in a hospital. I was not ready for that. In case you have to do IV steroids or are helping someone else who is, I took a picture of all of the stuff and thought I’d share it so that you’d know the kind of stuff that was coming:
In case you are wondering what on Earth all of this is, here’s the packing list:

3- 1000 MG Solu-Medrol/Minibags 116.00ML
4- 50MG Diphenhyd/0MG Epinephri 1ML (Just in case I’m allergic)
3- ADM. Set-Gravity w/dial-a-flo 1 EACH
20- Alcohol prep pads
1- AOB (Assignment of Benefits form)
1- bag, Infectous Waste
3- Catheter 24 GA Insyte Autogard
1- Estimated Insurance Form
3- Extension set 12″ Smartsite
4- Heparin Flush 100 Units/ML 5ML Prefilled
2- Infusion end caps
1- IV Pole
3- IV Start Kits
1- Manual (More paperwork)
3- PICC Shower Barrier
1- Sharps Container, 1.3 QT
8- Sodium Chloride Flush 5 ML, prefill
1- Start OC/Restart/Change Pt Info Pkt
2- Syringe 1CC TB 25g 5/8″ Safety Glide
2- Syringe 3CC 23GX 1″ Safety Glide
The nurse is coming tomorrow afternoon and I’m trying to stay calm, but it’s not easy. I’ve always hate IVs, not that anyone likes them, but I truly hate them more than the average person. Here’s one example. The best thing about Little Sister’s delivery going so quickly was that they didn’t have time to get in the IV. I clearly remember being told it was too late for the epidural, but the next words out of the nurse’s mouth was that it was too late for the IV, which was the best thing she could have said. When I first started writing I’m sure I mentioned that I hated needles. Well, needles are a thousand times better than IVs. IVs gross me out because they actually stay in my body. At least needles come right back out.
When the nurse called this evening to set up the visit time, I asked if she’d keep the IV in or do a new one each day. She said she prefers to leave it in. I’ve never had an IV in that long. The longest has been about 24 hours and that was the most I could tolerate. Not only does the needle gross me out, but my skin is so sensitive that I have a lot of trouble keeping on adhesive tape for that long. This is going to be interesting. I said I’d like to talk with her about it tomorrow, after I see how good she is at getting in the IV (I didn’t tell her that last part.) That’s the other thing, it’s rather hard to get an IV into me. During a previous surgery they had to try 3 different spots before they could put me under and I woke up with it in a 4th spot. I was so black and blue that I looked abused for weeks. I have faith that this woman will be better than whoever it was that did that to me. I’m also going to drink a ton of fluid tomorrow morning to make sure my veins are as cooperative as can be!
I’ve scanned a few things others have written about their experiences and tips. I think they may have just freaked me out more. I really don’t have any idea of what to expect. I think I’m about as educated as I’m going to be and I should probably stop searching for more info, just do my nightly shot, and call it a day.

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

Ivy also participated in her very first MS Walk, only two weeks after beginning the Solumedrol treatment. That's impressive!! I would have still been asleep on the couch.

MS Walk 2009

Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ. Six months ago I didn’t even know I had MS. A lot has changed in the past half year.

The first time I heard of MS is when someone asked me to donate to the MS Walk. I have cousins who do the walk every year and I’ve always donated to their efforts. Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS. My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.” I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months. I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.

From there it was a rapid slide from Stage 2 to Stage 4 breast cancer. She passed away just before Christmas 2007. I wasn’t sure how to tell my girls that Mommy has something people do walks for. I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs. Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk. I didn’t want them making any connections between the 3-Day and the MS Walk. Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.

My last MRI is what motivated me to sign up for the MS Walk. I felt helpless knowing that there are a ton of lesions on my spine. That was quite a shock after thinking things were pretty good with only 3 spots on my brain. Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it. Then it occurred to me that there certainly is something I can do about it. I can walk. I can ask friends to walk with me. I can ask friends and family to support me. Together we can all do something about it. We can raise money and awareness to fight this for me and the thousands of others like me. It was empowering to take on this challenge.

Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me. I was so elated! It all came together very quickly and in less than a month our team raised $1,000! As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies. We’re very fortunate to have access to an old beach house, so we made an overnight of it. We had great food and great conversation. A get-away was just what I needed after Day Ten on Prednisone. Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them. We even reminisced a bit about our friend who passed away. She would have appreciated that we had a few laughs when thinking about her.

While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both. From Mother’s Day through October, I’ll focus on the 3-Day. Now from October through May, I’ll focus on the MS Walk. Next year I hope to be able to do VIP Check-In. We all deserve a world free of breast cancer and free of MS. I hope I can do my part.

This concludes the 35th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 21, 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 19, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #10

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

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

#10 - Doctors who Care

The Waterworks Saga, cont'd

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

#9 - Personal Advocacy

'Tis or 'Taint?

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

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

#8 - Financial Independence

Kiss My What?

Due to recent events I have been looking into new housing for myself and Princess. I don't spend too much time worrying about whether people would want me or not, but whether I want to rent from them or not. I know I am a good tenant, I am clean, quiet and pay my bills on time. So it came as a big surprise when a recent possible landlord was very concerned about the fact that I am disabled and didn't have any recent references. I have been married for 6.5 years and with my husband for over 8 years -- I haven't exactly been renting anything in that time. She was too concerned by my not working, even though I am able to pay the deposit, first month's rent and even a few months in advance if need be. [...]

But did this matter to said bitchy-possible-landlady? Heck no. She went on and on about having to talk to her attorney about what they would have to do to rent to a disabled person and what modifications would have to be made.

#7 - Gratitude

Rebif in Britain

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

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

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

#6 - Patience

Bureaucracy!

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

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

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper. [ed. WOW, even with insurance coverage, Kelly could get her DMD more cheaply through the assistance program] It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness.

I didn't actually lose money or anything but just all the phone calls makes me insane--So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.

#5 - Persistance in a Broken System

What Health Care Problem? It's a Great System

And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

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

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

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

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

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

It’s a great system we’ve got here.

#4 - Flexibility and Acceptance

Sometimes 'Going with the Flow' is Not Easy

On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

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

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

#3 - Good Friends to Feel your Pain

Prone to Accidents - Destined to Complain

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

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

#2 - Laughter in the Face of Adversity

Already a Year in This Flat!

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

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

#1 - Joy in the Adventure

Speed Racer on Broadway with Multiple Sclerosis

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

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

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

Visit Chris who has written a book about MS and relationships.

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

This concludes the 10th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 22, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 20, 2008.

Thank you.

Comments for this post.