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.