Thursday, December 31, 2009

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


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.




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)



"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.

Happy 'Blue Moon' New Year's to All!!









Wednesday, December 30, 2009

2009 MS Year in Review


It's been a doozy of a year around here...and at HealthCentral, it's been a hopping year for sure. If you have multiple sclerosis, or are interested in MS, come check out our 2009 MS Central Year in Review. Even I found a few gems which I had missed the first time around. Happy reading!!

Sad


I really didn't believe that he'd let it happen. How did I?

Monday, December 28, 2009

From the FDA

Reporting Adverse Events to FDA's MedWatch Program:


Health Fraud Awareness (Consumer Update):

Sunday, December 27, 2009

Saturday, December 26, 2009

Mnozil Brass

Hungarian Schnapsodie:


The Alphorn:


Bohemian Rhapsody:


Mnozil Brass is a group from Austria.

Thursday, December 24, 2009

Being Social

The last few weeks have been very social for me. Typically I get my human interaction from students, their families, and my family (including Rob here). I don't go out searching for excitement or gatherings. I find them exhausting.

While in Oklahoma/Texas for my Grandfather's funeral, I was able to do something really nice. I met up with an old college friend in Dallas. I actually met her 20 years ago when I accompanied her for a concerto competition at a summer music festival. (I got a free ride to the festival for helping with orchestral music library duties and accompanying students in the competition).

Jean was still in high school at the time. I ended up attending the same college for graduate school while she was still in undergrad. We became good friends and have stayed good friends. The type of relationship where no matter how long it has been since we've talked directly or seen each other, we really have a nice time. There have been fleeting thoughts that if I were to need a Matron of Honor, Jean just might be the person I ask. She is definitely my oldest friend who has kept in touch over the years. After earning two degrees in music and spending years working in the newspaper industry, Jean is now a certified financial planner running a successful business. Go Jean!!

*****
Then after I wrote about the snow here in Northern Virginia, a high school classmate realized that I live less than 3 miles from her. (We are both on Facebook.) With the craziness of canceled plane flights, she got stuck here for Christmas. We met for lunch on Tuesday, a lunch which lasted longer than 3 hours. Wow, it was good to see someone from "back home" who has lived away from Oklahoma as long as I have. She was in band as was I, but I was so terribly shy at the time that I only really knew a small circle of friends.

Since reconnecting with high school classmates on Facebook, I have received such wonderful support and frequent kind words. For those of you who might read this (because I know several do keep up with the blog occasionally), thank you very much! You knew me before health issues were ever an issue. You knew me back when....

*****
Then Tuesday night a new friend on Facebook, who also has MS and lives in the area, messaged me. When I got the message, I immediately called her and we spoke for over an hour, then planned to meet for lunch yesterday. We had a great time! Also since we attend the same neurology clinic, we had some sharing to do about folks there.

I told her that I recently learned our previous MS nurse (I love nurse Carol) did not end up moving to California as we first thought. Someone who works at HealthCentral whose wife has MS told me that she still attends their same church in Vienna, VA. Kipperly and I joked about stalking nurse Carol for continued MS support (she was THAT good!!) Of course, just kidding about the stalking......I think. ;)

Although Kipperly has been diagnosed with MS much longer than I, it is only in the past year that MS has really taken a turn for her with at least three significant and distinct relapses requiring steroids and disability from work. It was good for me to see face-to-face the frustration and fear which I so often read in blogs and questions online. Fears which I have felt many times myself.

I am realizing that there may just be things I have learned to live with (and become less anxious about) which others do not experience randomly from week to week, or day to day. Maybe I've forgotten how frustrating and humiliating it was the first time I completely lost control over my bladder in public. Actually the VERY FIRST time this happened was in college. I had walked across campus to my dorm. Somewhere along the way, I realized that a bathroom would be a good thing and I tried to make it. When I knew that I wasn't going to make it, I sat on a brick wall outside of my dorm building and let loose. I was humiliated having to walk inside in soaked jeans to get on the elevator to my floor. I immediately took a shower to try to wash off the stench, but the embarrassment was harder to wash away.

*****
Somewhere also during this past weekend, I communicated with someone from an MS forum. She was denied assistance from NORD for her Copaxone. I told her part of my NORD story. We ended up speaking on the phone Monday regarding ideas for improving her financial application, trying to make it more clear how her need is indeed justified.

This person is very newly diagnosed. After telling me a few of her symptoms and asking a few questions, she asked me what my symptoms have been. I was honest and summarized the highlights, big and little, while just talking matter of fact. No fearmongering, just straightforward talk. Of course I emphasized that not everybody has the same symptoms and certainly not to the same degree.

Maybe I'm a bit too straightforward at this point. I may have scared her unintentionally. (I'm so sorry H. if I did.) I don't want to frighten people, especially with the knowledge I've gained from others who share their own stories. But I also don't want to hide the realities. I hope that others can see that even though I have permanent numbness in different parts of my body, residual visual disturbances which do bother me, an eye which tends to bounce now when I'm tired (or not), trouble with balance sometimes and an awkward gait especially when I'm overheated and fatigued, weakness in some muscles, mild spasticity, a right hand which tremors ever so slightly very infrequently, nerve pain, etc., etc...... I hope that they see that it is OKAY. Life goes on!!

*****
Tonight I'm headed over to Rob's mother's house for their traditional Christmas Eve dinner. My Mom is coming and we'll celebrate Christmas together. On Sunday, Rob and I will meet up with some of his friends (who he's known since high school) coming through town. Tis the season to be busy and social.

If I'm not around much, you'll know that I'm probably meeting with somebody whether on the phone or in real life. Having social support is such an important thing, especially during the holiday season which can be stressful for many.

Merry Christmas to all!

Wednesday, December 23, 2009

Do You Hear What I Hear?

Introducing the BowenBeerBottleBand...



Talented, but not drunk, musicians share a bit of Christmas Cheer! Thanks guys for putting a smile on this musician's face. Love it!!

MS Research: MS Registries and Tissue Donation

In today’s post, I will introduce you to a few non-profit organizations which are very focused in their purpose and research activities. From patient registeries, to knowledge databases, to tissue samples and brain donations, these smaller organizations and projects are doing some wonderful work in MS research.

NARCOMS (Consortium of MS Centers)

The North American Research Committee On Multiple Sclerosis (NARCOMS) initiated in 1993 by the Consortium of Multiple Sclerosis Centers (CMSC) Project, is led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. With support from United Spinal Association, Paralyzed Veterans Association, National MS Society, and unrestricted grants from pharmaceutical companies, NARCOMS has developed an MS Patient Registry that is the largest of its kind in the world.

Accelerated Cure Project for Multiple Sclerosis

The Accelerated Cure Project (ACP) for Multiple Sclerosis is a national nonprofit organization (originally named Boston Cure Project) dedicated to curing multiple sclerosis by determining the cause of MS.

Our main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. We make these samples available to researchers investigating the causes of MS. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined.

We are also developing a Cure Map to establish and document what is known and what is not known about the causes of MS. From the Cure Map, Accelerated Cure Project will facilitate the research most likely to reveal the causes of MS in the shortest time through use of our MS Repository.

Rocky Mountain MS Center Tissue Bank

Scientists throughout the world depend on the Rocky Mountain MS Center Tissue Bank to supply high quality human brain tissue and cerebral spinal fluid to support their research. Funded in part by the National MS Society, the Tissue Bank is one of only four MS-related tissue banks in the nation. The Tissue Bank has distributed specimens to more than 160 investigators worldwide and over 1,600 people have consented to be donors after death.

Human Brain and Spinal Fluid Resource Center

The Human Brain and Spinal Fluid Resource Center, located in Los Angeles, was established in 1961 to provide a vital service to neuroscientists. The Center collects, stores, and distributes donated tissue to research scientists around the world. Collection occurs through our “Gift of Hope” anatomical donor program which accepts tissue donation from people with neurological or psychiatric disorders. By arranging to donate tissue after death, you are giving a priceless gift to humanity.

Multiple Sclerosis Tissue Repository

The Multiple Sclerosis Tissue Repository was established with a grant from the National Multiple Sclerosis Society in 2008 in order to further MS research through increasing accessibility of MS brain tissue. At the University of Illinois at Chicago (UIC) MS Tissue Repository our goal is to function as a connection between MS communities and research laboratories around the country. In order to perform new MS related research scientists must have access to brain and spinal cord tissue from MS patients. There is particularly a critical need for tissue samples from patients who have acute MS and succumb prematurely.


Read this post in its entirety:

MS Research and Registries: NARCOMS, Accelerated Cure Project, and Tissue Donationa

Monday, December 21, 2009

Welcome MS Bloggers to the Community

Multiple Sclerosis & Me by S.S-O
A Trini living in Atlanta who thinks the cold weather is for the dogs!
True story: I was in Form 3 (13/14 years old) and my mother FINALLY said "ok, u can take maxi - (public transport; there are no school buses in Trinidad; we either took public transportation OR ur parents took u back and forth - so she finally let me take public transport) home after school." I was so excited; i get to walk down Frederick St, lime in Colsort Mall etc (close ur eyes Mummy) and take taxi! WOOHOO!! lime now start!! Well halfway down the street, i fell!!! Yup - my bookbag went 1 way, my binder a next, I was MORTIFIED!!!! how? How d hell did that happen??? To this day,OB(my father) gives me a hard time about it - in fact the other day he told me that he was somewhere and somebody fell up ahead. He said he looked to see if it was me!

♪ Oh Have You Seen the Light? ♪ by LinnĂ©a
So I can't stop listening to "Sam's Town (Abbey Road Version)" by The Killers. I love it. It makes me smile and cry all at once. That's my predicament at the moment and the reason for my blog. Please enjoy reading my heart ♥

So as for my diagnosis... It sucks.
It hasn't been my foremost thought though. Honestly. If I get something that could possibly be a symptom my mind doesn't go "AH! MS IS ATTACKING ME!!! :O death." I just make myself think, "hey, I'm not dead. I've felt this before... no big."

His Eye is On the Sparrow by Robinlynn
I am love with the greatest man I have ever known who also happens to be my husband. Mother of 3 grown children. Grandmother of 2 little boys with another one on the way. I feed the hungry kitties. I love animals of any kind. I strive to be more Christ like. I count myself super blessed. I am a 3 years breast cancer survior and live daily with Multiple Sclerosis. Some days are better than others but all in all I am okay.

Thoughts on the MS Cognitive Meltdown by Tim and Janet
Our thoughts on living with the cognitive issues of multiple sclerosis and how these issues affect our relationships with each other, our family and our friends. We will also include interesting and relavant links to articles, video, and other information.
Tim Meydam was diagnosed with MS in 2000. He and his wife Janet deal with the cognitive meltdown every day.

Sunday, December 20, 2009

Snow Days in Northern Virginia

December 19, 2009 - Snow hits Northern Virginia. Lots of snow.


Rob ventures out from his home in Reston and takes some great photos.






I go out, as far as halfway down the front sidewalk, to see what I can see.






Then I do something kinda silly. With snow already up to my knees, I throw myself backwards and make a snow angel. It was fun and I laughed and giggled my head off at the ridiculousness of falling down ON PURPOSE!! Even with the challenge of getting back up, it was so totally worth it.

I came outside later to photograph the evidence.


Now this is my idea of a CHRISTMAS TREE. O Tannenbaum, O Tannenbaum...


Today, a couple of guys who do work in the neighborhood come by to dig us out...at least the front sidewalks and the cars (the important stuff). Since there are no music lessons taking place until next year, the driveway can wait. You can see why in the 2nd video below.


This morning, the "Little Guys" encounter the snow for the first time. Oscar may have been out during the coldest portion of last winter, but we really don't know for sure. All we do know is that, right now, he is more than content to be our indoor kitty. Nobody takes the plunge, although it looks like Musette thought about it seriously.

video

Then I decide to check out what can be seen from the music studio. Enjoy the mini tour. And enjoy the winter solstice. Days will be getting longer so very soon. Yay!!

video

Saturday, December 19, 2009

MS Research and Funding in the US

In the United States, we have several non-profit MS-related organizations involved with conducting research, supporting research, or raising funds for research. Of course, we are not the only ones worldwide conducting research into the treatment and possible cure of MS, but since HealthCentral is based in the U.S., I thought we’d start here at home.

National Multiple Sclerosis Society

Without a doubt, the National MS Society (NMSS) has the largest budget when it comes to funding MS research among non-government not-for-profit organizations, devoting nearly $50 million each year to a spectrum of key initiatives and projects. In 2007, the National MS Society established Fast Forward, a wholly owned subsidiary of the Society with an innovative business approach, to speed the development of treatments and seek a cure for people living with MS by:

* Accelerating commercial development of innovative MS research
* Funding MS drug discovery in biotechnology and pharmaceutical companies
* Ensuring a global perspective in identifying funding opportunities

Myelin Repair Foundation

The Myelin Repair Foundation (MRF) was created in 2004 to address the systemic problems in medical research and commercial drug development that work against the rapid delivery of patient treatments. The MRF’s Accelerated Research Collaboration™ (ARC™) model is a radical new process that recognizes the incentives and limitations of academic scientists, commercial biopharma, government regulators, and patients and their families, and fosters behavioral changes by adding tangible value to everyone.

Today, the MRF is the world’s largest research organization with a singular focus on understanding how myelin is formed, damaged in MS, and repaired. MRF supports a collaboration of pre-selected scientists who have agreed to jointly develop and conduct experiments that will lead to targeted myelin repair discoveries. MRF shares its revolutionary research model with other disease research organizations, enabling rapid discovery of treatments and cures for other diseases.

Nancy Davis Foundation for Multiple Sclerosis

Founded in 1993, the Nancy Davis Foundation for Multiple Sclerosis (NDFMS) is dedicated to the treatment and ultimate cure of MS. Funding research is the core focus of the Foundation and all funds raised support the Center Without Walls program, a selected network of the nation’s top seven MS research centers. This nationwide collaboration of physicians, scientists and clinicians are on the cutting-edge of innovative research programs and therapeutic approaches to eradicate MS.

The Centers work as a team constantly communicating, never duplicating. It was the goal of Nancy Davis to build a winning team and the Foundation sought out the best and the brightest MS research facilities throughout the world. It is the hope of her Foundation that in addition to combating MS through research in a clinical environment, that an increased awareness will be created by educating the public about this devastating disease.

Read this post in its entirety:

Funding MS Research: National MS Society, Myelin Repair Foundation, Nancy Davis Foundation, Montel

P.S. Yes, Justine, I think that another post on organizational spending would be appropriate after each group has completed their 2008 990 tax forms.


Thursday, December 17, 2009

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.



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.

Wednesday, December 16, 2009

Rituxan Infusion - Take Two

In my first post on the topic of Rituxan, I discussed the infusion-related reaction in detail. What I didn’t discuss was any benefit I might have experienced afterwards. So here’s the scoop. Only days after the first infusion, I noticed less swelling in my joints.

One specific joint which gave me a sense of “aha! I knew it!” included my right knee. I had mentioned trouble with that knee for over a year to my rheumatologist who examined it and didn’t detect any swelling. OK, I’ll fess up. I have big knees - always have. It would be very difficult to determine what is going on in that joint without using ultrasound or x-ray (which we have never done). After the infusion, my knee felt as though it were becoming “sloppy” and fluid; it is definitely looser. I began having much less pain and disability in that knee and thus in that leg. You can bet the my rheumatologist is going to be hearing about that.

My hands feel better. I can close them into fists without pain or struggle. Admittedly, they have felt a little strange, though, almost as if muscles and tendons are in slightly different places. At first my right wrist flared up a little bit, but it has been fine for the past 2 weeks.

Last week, I sat at the piano (before flying to Dallas) to present a new Sonatina to a piano student. It felt really good!! My hands and fingers almost felt like they used to years ago. I didn’t seem to have to think about how to direct them nearly as much as I have in recent years. I blamed this somewhat on the multiple sclerosis, but only occasionally on the RA. Whatever the cause of the fluidity and control, I was thrilled to have a moment of flight over the piano keys.

I’m excited to see where all of this will take me. Is it really possible to get “MY HANDS” back? That might not be completely possible with RA and MS, but I am now hopeful for the first time in years.

Read this post in its entirety:

Rituxan Infusion: The 2nd Time is Easier than the First


Monday, December 14, 2009

I love my 3 little kitties. They make me smile.

"I've been here for over six months now. This is my house and I'll guard the front door for as long as necessary," says Oscar the Gray Ghost.


"Honestly, you need to put that clicking thing down and pick up my laser pointer. You must bend to my will and play with me. Make me run and pounce. I demand it...now!" so says Musette the Mistress.


video
"The key to a successful pounce is to make your prey think that you've forgotten where you dropped them. The pause was a strategic move. As you can see, I was rather successful in the end. The mouse didn't have a chance," says Pippin the Black Warrior.

Saturday, December 12, 2009

Loud Sounds and Chaos Equal Pain and Disability in this Multiple Sclerosis Patient

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.

Friday, December 11, 2009

MS Organizations Around the World

Let’s start the review at home with the first ever established MS organization. The National Multiple Sclerosis Society (NMSS) has an inspiring history - arising from a classified advertisement placed in The New York Times in 1945 by one individual looking for information for her brother who had just been diagnosed with MS. That extraordinary individual was Sylvia Lawry (1915-2001).

When her brother Bernard was diagnosed with multiple sclerosis 1945, Sylvia Lawry searched for a successful therapy which led to the infamous classified ad in The New York Times asking that ‘anyone recovered from it [MS] please communicate with patient.’ She received around 50 replies to this advertisement - not from patients with remedies, but from those seeking a remedy or cure themselves.

Immediately Sylvia went to work, rallying more than 20 famous scientists to her cause and founding the world’s first ever MS organization in 1946 - the Association for Advancement of Research in Multiple Sclerosis. Sylvia recognized that people living with MS also needed sound information and support services in addition to increased research, so the Association evolved the following year into the US National Multiple Sclerosis Society (NMSS) which has become a model for national societies worldwide.



Read this post in its entirety:
Sylvia Lawry: The National MS Society and the Multiple Sclerosis International Federation

Tuesday, December 8, 2009

Topsy-Turvy

Just a quick-ish note. Things have gotten turned upside-down in the past 36 hours. Actually, let me back up.

Sunday I got to meet up with one of our very own MS bloggers while she was in the DC area for a short business trip. It was really neat meeting with Ivy because we have something very much in common. We both experienced optic neuritis and ended up seeing the same neuro-opthalmologist in Rockville, MD. We were each given a diagnosis of only optic neuritis and nothing more. Now we both have MS which has tended to leave more lesions in our spines. Neither of us had MRIs done of our spines at the time of the optic neuritis. Interesting to think what they might have shown then. Anyways, Ivy and I had a yummy dinner at Cafe Asia. Thanks Ivy and it was great to meet you in person.

Before that, I was feeling a bit like a blue, teary, wet, soppy noodle and was having trouble sleeping. BTW, Jen, yes I found my neglected prescription. :)

Staying up WAY too late Sunday night, I was shocked awake too early on Monday by a phone call. Turns out that my grandfather didn't wake up Monday and passed away. Then everything went topsy-turvy. Things needed to be learned, folks needed to be contacted, and plans had to be made. Students needed to be taught, clothes needed to be washed, posts needed to be written, producers needed to be contacted, even a video needed to be made and uploaded.

This morning I hopped on a plane in DC to come to Dallas. The day has been non-stop until about an hour ago when my body finally said - ENOUGH ALREADY!!

Having just recently completed one complete round of Rituxan (two infusions, read Rituximab Infusions: My First Experience), I am conscious of the need to take care of myself and avoid sickness. I've been feeling pretty good, especially my hands and right knee have been happy. But this evening after taking a very bumpy flight, a quick bite to eat at my grandparents' house, a trip to the funeral home to check on my grandfather's appearance (complete with tears and heart-felt words being said by my (step)grandmother, my mother and myself), a return to the house to complete the obituary which needed to be sent back up to the funeral home before the public viewing began at 5PM, my body decided that it was time to STOP!!

I was obviously running a fever, had become flushed with a headache, and started walking really funny. So I decided to stay at the house and rest. Thankfully a neighbor has an unsecured wifi and I'm online to catch up with 2 days of posts, comments, and emails. I still have more posts to write, but you might not see many comments from me during the next week as I don't know how much connectivity I will have available at the various places I might be.

The funeral is tomorrow in Wewoka, Oklahoma, which is at least a 4 hour drive from here. We've got to get up there for the private family viewing where I will see many aunts and uncles, and perhaps cousins, whom I haven't seen in at least three years. After that I get to stay with my brother and his family.

Yippee!! Time with the nephews. Sadly, I realize that I've not been to visit them in 2 years. (bad aunt!!) And so far everybody's healthy, except the baby has a cold. Must try to avoid getting sick as there are things to do and a body's immune system which has taken a serious hit recently.

So, right now, I think that I will actually take a nap while the house is quiet and before some of the relatives return from the viewing. My grandfather was a Navy pilot in WWII, residential dairy sales and deliveryman, avid waterskier, and poet and musician. He had five children and two stepsons, eleven grandchildren, and seventeen great-grandchildren. And he was a really good man. Love you Granddad.

Sunday, December 6, 2009

Straight No Chaser - back together again!!

Two years ago I shared with you this video which went completely VIRAL!! The performers were the men's acapella group, Straight No Chaser, formed at Indiana University in 1996. View the original 1998 version of The Twelve Days of Christmas.




Straight No Chaser has since reunited and performed the following version of The Twelve Days of Christmas at Indiana University in 2008. Please enjoy!!



Happy Hannukah, Merry Christmas, and Happy New Year!!

Spin!! - Art Auction to Benefit Myelin Repair Foundation

We've talked about The Ride Project and Courtney's commitment to donate $1,000,000 to the Myelin Repair Foundation through sales of limited edition photography prints focusing on things which move.

We've talked about the Myelin Repair Foundation.



This Tuesday through Friday, December 8-11, 2009, the Myelin Repair Foundation is holding an online auction featuring the cycling photograph which started it all!!

"Spin"

Courtney says...

I launched “The Ride Project” to support the Myelin Repair Foundation because I believe in the MRF’s research model that is solely focused on finding and rapidly delivering treatments for MS patients. The Ride Project (http://therideproject.com) is my commitment to donate $1,000,000 to the Myelin Repair Foundation through the sales of limited edition fine art photography focused on things that move.

On top of this commitment ,I am donating this print: (http://www.therideproject.com/nggallery/page-5/image/69) for the online auction starting next Tuesday. The photograph that I’ve chosen to donate is titled “Spin.” This image is all about motion, energy and passion. “Spin” inspired The Ride Project, which combines my passion for cycling and photography and continues to motivate me to move forward with my fight for a cure for multiple sclerosis.




More Details from the MRF:

The winner of the auction will receive this limited edition 12 X 18 photograph matted, signed, numbered and framed to 18 X 24 (white mat, black frame). This is the perfect present for a loved one that is passionate about cycling or loves photography.

The Auction begins Tuesday, December 8 at 8AM Pacific Time. It will end Friday, December 11 at 5:00 PM Pacific Time.

This will allow enough time for the framed and signed print to be delivered for a Christmas or holiday gift.

The starting bid is $250 and each bid needs to be higher by minimum increments of $10. So if someone bids $276, the next bid needs to be $286, $296, or $306 and so on.

The estimated retail value of the framed print is $500. For the winning bidder, the amount paid in excess of fair market value may be deductible as a donation in support of the Myelin Repair Foundation. There will be no additional shipping costs (courtesy of Courtney Carver.)

To bid, comment on this blog post (http://blog.myelinrepair.org) with your bid amount and enter in your full name and email address where we can contact you, otherwise your bid will be void. We will periodically update the blog, our Twitter account, and Facebook Fan Page with the top bid amount.

Reminder: Bidding does not start until Tuesday morning, December 8th. There will be a special text field where you can enter your bid.

Please spread the word:
forward it! email it! blog it! tweet it! facebook it! sing it! write it! say it! dance it!

BIDDING DOES NOT START UNTIL TUESDAY, DECEMBER 8th!!

Saturday, December 5, 2009

Myelin Repair Foundation Supporters

After looking into where the money flows within prominent MS organizations last April, I met Justine Lam who is responsible for the Myelin Repair Foundation's online presence. We've become friends. When Justine asked if I could contribute to a holiday fund-drive video, I said sure. See what some of these folks had to say.



Be sure to stay tuned, because there is more news and events related to Myelin Repair Foundation coming in the next few days.

Friday, December 4, 2009

Please welcome Muffie to the MS Blogging Community


In the beginning...
Greetings!

This is my first blog, so please bear with me as I learn the ropes!

A little about me…
I’m a “woman of a certain age” – old enough to know better, but with the heart and soul of youth! I am married to a wonderful guy, have 3 children [boy, girl, boy,] and will become a grandmother in February.

I was a Junior High English teacher and then became an elementary school principal. During that particular journey, I was diagnosed with MS, and am now on disability, trying desperately to adjust to this new situation.

I follow many MS blogs which help me in this adjustment period. In another posting, I’ll describe how all of this occurred. For now, I just need to begin this journal.
In the past, I was also a cross stitch fanatic; thus, all the blogs in my collection which follow other stitchers. I was also an artist – drawing, painting, pen and ink, calligraphy – and at one time had my own small business, selling my works. All of those pursuits have been dropped by the wayside as this disease progressed. However, I hate thinking of myself as a quitter, so I’m trying to discovery ways I can get back to some of these pursuits. Not an easy process, as I have little use of my right hand.
I named this blog Kaleidoscope because that’s how I envision my life. With each little turn, I find a new picture before me. Sometimes the view is confusing, but I try to find beauty in it.

I hope that in time, I’ll hear from some of you out there. I know it will take time before I’m accepted as part of the blogging community, but I’ll be patient. If you’re a fellow MSer, let me know how your days are going. If you’re a stitcher, share your work with me!

Wishing all of you a pleasant day!!
--Muffie

Thursday, December 3, 2009

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.
~~~~~~~~~~~~~~~~~~~~

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?


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.


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.

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


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.