MS Off the Beaten Path

ANIMALS DISCRIMINATE AGAINST THE HANDICAPPED...

2012-02-10T20:18:00.001-05:00

They really do. I swear. If you are not handicapped, you have no idea. I can only speak about raccoons, cats, and dogs but I'm sure they all do it. Suffice it to say that if you try to correct an animal in any way and are handicapped, they will blow you off like you wouldn't believe. It is definitely a "talk to the paw...loser...what are YOU going to do" type of situation.

JC VIRUS...

2012-02-01T16:29:00.003-05:00

I forgot to report that according to my latest blood work I am JC virus negative. This is a big deal. It effectively means that my chances for contracting PML while on Tysabri are significantly diminished.

Please see the following article to understand more about this issue.

http://ms.about.com/od/treatments/a/Testing-For-Jc-Virus-Antibodies-For-Tysabri-Related-Pml-Risk.htm

I'M BACK...

2012-01-24T15:53:00.004-05:00

Well, I went to Atlanta on my first trip back in a couple of years. First, let me say, I had a great time. I really did. But second let me say that it really highlighted for me just how difficult it is to function out in the world.

It was incredibly difficult to get to a bathroom I could use. While I had a roll in shower, grab bar, etc. in my room, outside of the room, was a whole different story. I did, by the way, fall in love with the roll in shower. But...I found myself "running the gauntlet" to all of the non-handicapped accessible bathrooms throughout the hotel...from walking up 21 steps with my sister-in-law carrying my walker to rolling myself a REALLY long way across the hotel to get to an accessible bathroom. It was exhausting and my arms are pretty sore..

When I was alone in the hotel, I also fell and it took me at least an hour and a half to get up. I ended up with bad rug burns on my knees or maybe they are more like rug scrapes. Despite it all, I had a great time though it does give me pause about planning my next trip. Although, I probably will because that is just how hard headed I am.

GOOD LINK...

2011-10-30T16:17:00.002-04:00

http://www.invisibledisabilities.org/educate/invisibleawareness/multiplewhat/

MIGHT TAKE A BREAK...

2011-09-17T18:54:00.000-04:00

from blogging but I will return shortly with posts on steroid induced mania and the ways animals discriminate against the disabled.

MORE TO COME...

A CHEESY BUT GOOD VIDEO...

2011-09-13T17:24:00.000-04:00

I do not experience all of these symptoms currently but for what it is worth...

http://www.youtube.com/watch?v=ORMXreorg9w&feature=channel_video_title

NO MORE WOOF...

2011-09-04T20:28:00.000-04:00

I have done a 360 on the service dog idea. Initially, I thought that I do not want to leave my parents with a dog to care of if I become more disabled. Then, I suddenly realized...wait...I don't want to take care of a dog. As a friend said, its like having a two year old to deal with. He is right. I had Remus for 12 wonderful years but that was enough. So, no dog...

CHOKING?

2011-09-03T16:07:00.000-04:00

Do any of you other MSer's have trouble swallowing, i.e. choking? This seems to be my new symptom. Let me know...

PSYC HOSPITAL

2011-08-30T13:46:00.000-04:00

Another memory I have, happened during October of one year. Since Halloween was coming up we were learning about the skeletal system. Suddenly, one of my students looked up at me and said, "Did you know that you can eat a human pancreas?" Honestly all I could think was, "I bet you could Hannibal Lecter..." It was a very interesting place to work...

THE ART OF LIVING IN THE PRESENT....

2011-08-25T16:02:00.003-04:00

I have a really hard time keeping my mind in the present. You know, ignoring concerns about the past and the future. My mind is always going 100 mph. It is really hard to stop it. The following article suggests a simple way to make that stop(see below). The mantra to use is "this is it". In other words, experience the now because that is your life. I still struggle to stay present but the mantra does seem to help. Enjoy...

http://www.oprah.com/spirit/The-Art-of-Living-in-the-Present-Josh-Baran

BU YAO!

2011-08-21T20:33:00.002-04:00

Three years ago I had the unprecedented opportunity to travel to China with my Dad and the Former Secretary of Health and Human Services. It was incredible. We had the secret service in tow...the whole nine yards. It was the trip of a lifetime.

While we were in Shanghai, we had a personal shopper showing us around and she kept saying "bu yao" to everyone who approached her trying to sell their wares. So, I asked her what she was saying and she replied "no want".

Well that is all it took to set me off. Now, I could speak Chinese and felt very empowered. So the next time someone approached us, I gave a very stern "bu yao!" To which the guy replied, in English, "Oh you want me to give you a $1000? How about I give you a thousand dollars?" I wasn't prepared to be responded to in English after my first attempt at speaking Chinese. So, something didn't quite compute and I just kept yelling "bu yao" at the guy. It was impressive to say the least...

THIS IS HOW IT STARTS...

2011-08-13T14:59:00.003-04:00

Old age creeps up slowly on you but slowly and surely it is always there...stalking you. I realized this last night. I was talking to my mom and it suddenly it occurred to me that people born recently have no idea that my childhood TV had only three channels. I mentioned this to my mom who said "Television? That's not even relevant. How about that they don't even know about slow internet"? (Dial up...remember that?) Wow...there are even 10 or 15 year olds who don't know about that. Ouch...

ACCESSIBILITY...

2011-08-07T06:59:00.013-04:00

Obviously being in a wheelchair raises the issue of accessibility to places; sometimes in expected ways and places and sometimes not. My parents live in an old house with high ceilings and extra wide doors. So, I was surprised to learn that my wheelchair will not fit through standard size interior doors. I keep thinking that the people who sold me the chair should have mentioned, "oh, by the way you won't be able to fit through most doorways". It would've been nice to know. Sometimes this issue is only with bathroom doors, which is problematic to say the least. I recently realized I won't be able to attend a shower for a dear friend due to an odd combination of stairs on one side and a too skinny bathroom door on the other side of the house where it is being given. Couple that with a crowd and August heat in Georgia and I'm sure you can see my predicament.

Then there is the day last week when I went out to lunch with an old friend. I was braced for the place to have an inaccessible bathroom and prepared to give the "you know you are not in compliance with the Federal Americans with Disabilities Act" speech. Lucky for me and for them their bathroom was accessible. Unfortunately, they had placed three iron and vinyl chairs in front of the toilet in a line...like they were expecting a small crowd in the bathroom to watch someone use the bathroom. Needless to say, my friend had to move the chairs out of the bathroom so that I could get to the toilet. Each time she moved them and I used the bathroom, someone from the restaurant would rush over and put them back in. It was a very small restaurant and I was in a wheelchair. So, it must have been obvious what was going on.

The most surprising access problem I have experienced occurred several months ago when my Mom was in the hospital for a week or so. Not only could I not fit through the bathroom door in her hospital room but I tried two other bathrooms on her hall and couldn't fit in those either. Meaning, I would have to go from the sixth floor down to the first floor of the hospital to use the bathroom. Ridiculous and unacceptable for a hospital, don't you think? I should have complained but I guess I was just too shocked...

I'M NOT BLOWING YOU OFF...

2011-08-06T13:20:00.002-04:00

I want to make sure that all of my friends understand that I am not blowing them off when I decline an invitation or a visit. While I know it must sound like BS to you, I simply can not function in this heat...even indoors is tough. I might want to take a shower and wash and dry my hair before you visit and not wet my pants while you are here. All extremely difficult tasks in this heat. I would LOVE to see
you all when it cools off just a little bit. Only someone else with MS could understand but it is the truth. If you know me, you know I don't lie. So, please take me at my word.

XO

WEIRDEST ASSOCIATION EVER...

2011-08-05T18:07:00.005-04:00

Wow! Sam Bush and Diamond Lil'? Really?!?

Diamond Lil' is an old drag queen from Atlanta and Sam Bush is a standard in the Blue Grass circuit on the west coast. He has a song about her. Fascinating...check out the lyrics...

Spider John is my name, friends

I'm in between freights, and I sure would be obliged

If I could share your company.

I'm on my way to nowhere; I been runnin' from my past,

Runnin' from the things I used to be.

Now I know my words sound strange to you

But if you'll wait till my song is sung and my story's told

You might come to understand

Why I'm old and bent and devil spent, and a-runnin' out of time

When not long ago I held a royal flush in my hand.

Chorus:

Oh, I was a supermarket fool; I was a motorbank stool pigeon,

Robbin' my own time.

I thought I'd lost my blues, yes, I thought I'd paid my dues

And I thought I'd found a life to suit my style.

And I was Spider John, the robberman

Long, tall, and handsome,

Yes, I was Spider John with a loaded hand

Takin' ransom.

And then one day I met Diamond Lil

And she was as sweet a thing, I declare, as the summer wind

Had ever blown my way.

Lil she had no idea of my illustrious occupation,

She thought I was a saint and not a sinner gone astray

Spider he loved his Lily so much

He could not confess his sins, for he knew if he did

The lady would surely take her leave.

But you know that the word got around, and Lily left town

And he never saw her again,

Tossin' and turnin' and causin' his heart to grieve.

Chorus

And that is all my story.

It's been these thirty years since I took the road

To find my precious jewel one.

Now if you see my Lily, won't you give her my regards,

Tell her old Spider got tangled in the black web that he spun

You can tell her that Spider got tangled in the black web that he spun.

Awesomeness!

TRUTH...

2011-08-05T17:03:00.000-04:00

Reputation is what other people think of you. Character is who you are when no one else is around.

AHA!

2011-07-30T18:43:00.000-04:00

I did find some things from the PSYC hospital that I can share. Sentences written by a student:

1 this is mine
2 What did you say
3 I like I ce ream too
4 but your feet are fat
5 She is pretty
6 When I came back I did n'y see my blanket under my pillow
7 you are black
8 I went home
9 I went on a ride to Savannah
10 It's Barney
11 give me that back
12 I like you too
13 are you an angel
14 but your ugly
15 ms hudson is off the chain

I love it! More to come...

STORIES FROM THE PSYCHIATRIC HOSPITAL...

2011-07-22T11:47:00.001-04:00

Unfortunately, I can't reconcile telling those stories with my conscience. It just doesn't feel ethical to share even if I don't use names.

Maybe if MS takes over my brain one day I'll feel ok about sharing.

Until then...

NEW TOY...

2011-07-18T13:12:00.000-04:00

Last week I received my new toy, a power chair. It is incredibly lightweight and zippy but is taking a little practice to get used to driving it. If anyone is interested, I got the AT'M Take Along Chair, which came highly recommended from my friend CK. I saved about $1500 by ordering it online making it almost half price. I ordered it from SpinLife.com if you are interested...

Thanks CK!

ANTICIPATION...

2011-07-11T19:15:00.009-04:00

ANTICI..PAY..AY..TION...IS MAKING ME WAIT...

CONSTIPATION

Definition of anticipation= being enthusiastic, an emotion

involving pleasure, excitement and sometimes anxiety in

considering some expected or longed-for good event.

How true...

From WEBMD: Constipation

Constipation is characterized by infrequent bowel movements (usually fewer than two bowel movements per week), or by frequent straining to void fecal matter.
Constipation is very common among people with MS. In general, poor diet(including consuming less than 20 grams of fiber per day), lack of physical activity, and depression all affect the digestive system. Medications and supplements may also contribute to constipation.
With MS, constipation may be caused by an interruption of impulses to the brain that signal the need for a bowel movement. MS may also prevent pelvic floor muscles from relaxing. These muscles are used to help void fecal matter. Also, MS may block the natural increase in activity of the colon following meals. I guess that says it all...

WOOF!

2011-07-07T12:14:00.001-04:00

Please do your self a favor and watch: http://www.pbs.org/dogs-eyes/film
It is a fantastic PBS film about service dogs. It is incredible and can be expanded to fit the full screen of your computer for your viewing pleasure. Even if you hate dogs, I would be shocked if you didn't like it. Hell, even if you hate dogs AND disabled people, you are bound to like it. So, when you have 50 minutes check it out. I am planning to apply for a service dog. Applying is a tough process and the waiting list is long but I'm going to go for it...WOOF!

HOLY LORD...

2011-07-06T10:32:00.002-04:00

From my spiritual advisor:

First, be quiet…give away your ideas…your self certainty…your judgments and your opinions…let go of defenses and offenses….face your critics...they will always outnumber you…lose all wars….all wars are lost to begin with.

Abandon your authority and entitlements. Release your self image, status, power, whatever you think gives you clout. It doesn’t, not really. That was a lie you never believed. Give up your seat, see what you are; unguarded, unprepared, unequipped, surrounded on all sides. Alone…a prisoner of no one and nothing. And now that you are free, see where you are. Observe what is needed. Do good, quietly… if it’s not done quietly, it’s not good.  Start over…always start over…

by...karen maezen miller

---There are two unrelated topics I want to discuss in this post, neither of which is about MS...but both worthy of a Holy Lord! The first is the Casey Anthony trial. The second is my perspective on spirituality and religion. It's important to discuss this because some of the things I post on my Facebook page could easily be seen as obnoxious digs against Christianity. That's not really my purpose but the anti-Gay "Christian" thing does tend to raise up my neck hairs. So, please let me explain...

The more I think about it the less I want to say about the Anthony trial. It is done...over. I did experience the same shock and dismay as I did in the OJ Simpson trial...but again, it is over. So, why go on and on about it. I won't.

The next issue I want to discuss is my belief system. I don't consider myself a Christian, a Buddhist, a Pagan, a Warlock, or any "thing" in particular. To be honest I'm really not sure if I "believe" any of it. That does not mean, however, that I don't have a strong philosophy of living my life that is based on parts of the bible and buddhism. Actually, I do...I consider myself to be one of the most moral people I know to be perfectly honest. My lack of belief in a religion does not change this and I would never want to denigrate anyone's belief system...ever...just because I don't "believe".

FREEDOM!

2011-07-04T08:31:00.006-04:00

Freedom probably seems like a strange topic for someone like me to write about but on the Fourth of July it is something that is on a lot of people's minds. Even though I'm wheelchair bound, on disability, unable to drive, and live with my parents, I feel strangely free lately. After so many years of struggling with work both physically and to make a decent living, it is a relief to be on disability and just be able to stop, reflect on my life, relax, and take a breath. Even though I loved my last job teaching at Augusta State University, it paid a paltry salary...no where near close enough to make a living. So, I had to work two jobs and still didn't make enough money. For someone with progressing multiple sclerosis, this was beyond exhausting and frustrating. So, yes disability is a relief and it pays better than ASU. Also, after many months of bad falls and sprained ankles, it finally became all too clear that I needed a wheelchair, which was very liberating once I accepted it. Additionally, as tough as it is to live with my parents at 41, I honestly don't know what I would do without them.

So when you put all of these things together, it oddly means freedom for me. "Survival mode" is over (at least for now). I think I'll celebrate my Freedom today. Here's hoping you celebrate yours.
Happy Fourth of July!

SUSAN...

2011-07-01T22:36:00.006-04:00

I didn't know Susan or even know of Susan when I received a mass email saying she needed help in 2006. I learned that she was my age and had suffered a catastrophic brainstem stroke a few years before, shortly after she got married. Her stroke left her a quadriplegic, legally blind, and with trouble with her breath support making speaking difficult for her. All I could think at that time was that my job would be okay with me helping her out once a week and that I was lucky not to be in her position yet but would likely be in a wheelchair myself at some point. So, I was happy to help and little did I know my chair was only a few years away, in 2010.

Well this probably sounds like a depressing undertaking but nothing could be further from the truth. To say that Susan is a trooper is a gross understatement. She has an amazing never give up attitude. I took her to PT and OT each week and watched her really struggle and work to improve. I was blown away by her attitude and fortitude. I also took her to her weekly appointments with her Chinese Medicine doctor, Mr. Wong. Susan is willing to try anything and everything that might help and she did it all with this amazing positive outlook. We had a great time together which was made better by the fact that we like the same music and have basically the same sense of humor. We laughed all the time...like constantly. As my MS started to progress, I had to stop working for her. It just started to feel dangerous when we were doing transfers. I consider her one of my very best friends. When I emailed her to tell her I was in a wheelchair too, she responded, "well welcome to crotch level." I love her and feel like there is SO much more I want to say. Ultimately, spending time with Susan taught me it could be a lot worse so I better just start bucking up now because if she could do it at least I could try my best to do the same, no matter what. I have more to say but for now, we'll just call this Susan Part 1. Love you Su!

PRIDE...

2011-06-29T15:42:00.006-04:00

I had initially planned on going to at least the Pride Parade last weekend in my home town. After celebrating in Atlanta in the past, it is kind of a quaint and sweet parade by comparison. I even purchased two $75 dollar VIP tickets so that I could enjoy the festival from a 3 foot stage w/ fans and free beer and wine...then I remembered I'm in a wheelchair and would be unable to get on the stage or use the port-o-lets. Oh well...I guess the ticket price was my contribution to the cause.

I also remembered the last couple of times I attended in Atlanta and busted my @ss because of the heat. The last time that happened I was in Piedmont Park with my friend Sara and I face planted in the grass. Lots of guys ran over to us to see if I was ok. I told them yes the only thing that was hurt was my pride and to please do something, like cartwheels, to distract the rest of the crowd from staring. All of the guys and my friend obliged by doing cartwheels. Kind folks and lesson learned about the heat!

So, I didn't make it to this years event but I did go last year with my Dad to the inaugural parade and we had a great time. So, I guess ultimately...mission accomplished.

COUNTRIES...

2011-06-22T13:54:00.027-04:00

I've had hits on my blog from the following countries:

US
UK
AUSTRALIA
CANADA
HONG KONG
TRINIDAD AND TABAGO
CHINA
GERMANY
S. AFRICA
IRELAND
GREECE
MEXICO
NEW ZEALAND
SINGAPORE
EGYPT
SPAIN
FRANCE
JORDAN
NIGERIA
MALTA
UKRAINE
INDIA
ESTONIA
BULGARIA
TURKEY
ITALY
THAILAND
RUSSIA
POLAND
BAHAMAS
SOUTH KOREA
TAIWAN
MALAYSIA
KENYA
SAUDI ARABIA
PANAMA
ROMANIA
INDONESIA
LATVIA
BRAZIL

How cool is that?! My world take over has begun...

DIAGNOSIS...

2011-06-22T11:07:00.005-04:00

In November of 2000, my symptoms finally progressed to the point where I could no longer ignore them. My hands and arms were numb as were parts of my face and half of my tongue. I was numb from my bra line to the bottoms of my feet which were totally numb. I had fecal incontinence, brain fog, could barely walk, and my fine and gross motor skills were adversely affected.

So, on November 30, 2000, I finally saw a neurologist in Augusta and was immediately diagnosed. He referred me to a doctor in Atlanta who he said was at the top of his field and I went in for a consultation a week later.

Here is part of the first office note:

"Heather began to suspect MS several years ago when the symptoms were becoming more specific and she did check on the internet, but for reasons that are her own, she did not seek any medical attention at the time.

One moth ago, she had her most dramatic event when she developed a transverse sensory myelitis that was incomplete, that included leg weakness, ataxia, and numbness to a T-9 level. She obtained MRI's that showed a severe T-2 lesion load both in the brain, posterior fossa and the cervical cord. Her lesion load on a scale of 10 is in the range of 5-6, which is what we usually see in patients who have 10 to 15 years of significant disease."

Translation: I was screwed. I thought there were no treatments so I did not seek them out. So, unfortunately, I accumulated a lot of unnecessary scarring on my brain. I'm incredibly lucky that I had 10 years of relatively good health after this point and that I have responded fairly well to treatment. Stupid but a lucky, lucky girl...

ATLANTA...

2011-06-21T22:22:00.043-04:00

So, Remus and I moved to Atlanta in 1999…and there I was sick and in denial…or as I like to call it in “survival mode.” I was in this mode for so long that I didn’t even realize I was in it anymore at some point. It is just what I had to do to survive. I was constantly looking for new jobs, relationships, and educational opportunities. I spent the first five years working at the psychiatric hospital and the next five working at the MS center of Atlanta, where I was constantly seeking other employment. Other jobs I didn’t find but educational opportunities and relationships came my way.

My relationships are not really worth mentioning but I did get my heart broken again, much worse than before. Now, I can't blame my MS for the demise of my relationships...but I feel certain it played a part. In my experience, people just don't take you seriously when they know you are as sick as I am. I'm ok with that though...I am now, at least. I took classes at Georgia Tech and did begin a new Masters degree at Emory University but it is most important that I share the immensely positive experiences I had at this time.

First of all, I had the pleasure of volunteering at Youth Pride, beginning in 2005. I lead a support group for 2 and a half hours per night, once or twice a week for 2 and a half years. YP is an amazing place. It is a community center that exists solely for the purpose of providing emotional support to LGBT kids aged 13 to 24. I began my time there working with the adult kids exactly one year after I came out of the closet, which I did at the relatively old age of 34. So, it goes without saying that my time at YP was incredibly therapeutic and uplifting for me.

My next life changing experience was the time I spent working for and with Susan...but she is important enough to deserve her own chapter...

BOULDER...

2011-06-19T17:19:00.013-04:00

I have a lot to say but I will try my best to keep my essay accurate, brief, and concise. I was diagnosed twelve years ago with Multiple Sclerosis, after spending two years ignoring my symptoms, while I was in graduate school.

I was fully aware that something was wrong but I wasn’t sure what, at first. I experienced numbness, tingling, vertigo, double vision, and balance problems. It was 1998, Google didn’t exist, and I was using a dial up computer to try and understand my symptoms. Finally, I came across something about MS that explained that symptoms would worsen with exposure to heat, such as in a warm bath. That is how I ultimately diagnosed myself. I climbed into my deep and awesome claw foot tub and the numbness in my legs got worse immediately. So, I just thought well there you go...that's it...MS.

In ignoring my illness, there was a method to my madness. I had over the past couple of years discovered my purpose in life, had gone back to school to finish my undergrad degree, and had applied to and was accepted into a graduate program at The University of Colorado at Boulder. I was determined not to let anything stop me from completing my degree and I knew my parents would have insisted that I move home if they knew I was ill. I had just escaped from Augusta, GA and was not going back!

It was quite a struggle to complete my degree but I did it with a 3.7 average. Considering how very ill I was at the time, I am very proud of my accomplishment. On top of vertigo, balance issues, and falling, the double vision I experienced prevented me from driving. I had to take the bus to campus while holding a hand over one eye just to function. My 9-year old dog, Remus, developed arthritis as I was starting to develop MS symptoms. We were a sad, pitiful pair but very dedicated to and reliant on one another. I didn’t tell anyone about my symptoms for the next 3 years…nobody knew…only Remus, my dog.

During the time my symptoms were escalating, I did ask my father, who is a doctor if he thought I might have MS. He always reassured me that the chances of me having something like that were infinitesimal, which worked great with my denial. I asked if there was anything they could do for me if I did have it and he said no. To be fair he is an orthopedist not a neurologist and I wasn’t giving him all the information about my symptoms.

Fast forward to 1999…Remus and I packed our bags and moved to Atlanta. My symptoms continued and I got a job teaching at a residential, psychiatric treatment facility. In spite of the fact that I frequently lost control of my bowels while I was at or on my way to work, I loved the 5 years I spent working there. The children I taught were amazing but very high maintenance. They had severe emotional and behavioral problems. Diagnoses ran the gamut from paranoid schizophrenia, to pervasive developmental disorders, to severe bipolar disorder and they all had horrific histories of abuse. So, after being diagnosed in 2000, losing my 12-year old dog in 2001, ending a relationship in 2002, and working at the psychiatric hospital for 5 years, I burned out and moved on to a new job in 2004.

I'm back...

2011-06-15T14:12:00.018-04:00

I wanted to share and discuss a recent post I made to my Facebook page. Here is the post:

"Posted by a fellow patient with MS on the NMSS site...I

could not have said it better myself.

"for me, the most hopeless part of MS is the lack of

explainability... I just don't "look sick enough" to

explain why I can't do things.... and everything I do

manage to accomplish puts a false expectation that I

could do more "if you just tried"....I am just tired of

having to explain and make excuses for myself"."

People responded with very kind comments to my post

but many missed the point. I am not sad about this

situation. I've had 12 years to process and come to

terms with the fact that I have MS.

People not "getting it" is less of an issue

now that I'm in a wheelchair than it used to be. I had a

friend who used to basically sprint down

steps in front of me while I struggled down with my

balance and spasticity issues. This is not to say she

was a jerk. I think she was trying to demonstrate that

I could go a lot faster if I would "just try" but this is

unfortunately not the way MS works. What my fellow

patient wrote simply spoke to me on a deep level.

When I say I can't or don't want to do things it is not for

a lack of wanting to. Trust me, cabin fever has taken

hold. It could be because the place isn't accessible, or

maybe the bathroom isn't, or maybe the heat is too

much for me, or may be I am having bowel and/or

bladder issues. This makes it nearly impossible to plan

ahead. None of this is new for me. I just ask that

people consider these things before judging.

TurnFirst

2011-06-09T07:28:00.004-04:00

TurnFirst.org is a fantastic resource for information. It represents the best of the best.

A video explaining what it is all about:

http://www.youtube.com/watch?v=5ZQwMAtL8QY

OFF TO "COLORATOE"...

2011-06-05T22:51:00.018-04:00

It is important that I tell you about my time in Colorado because that is where it all started...my symptoms and "survival mode". For now, I want to share with you a letter I received in December of 1997. I had just completed my BS in Early Childhood Education and thus my student teaching. I had an incredible experience. Here is a goodbye letter I received from a student who knew I was moving to Colorado that month to begin graduate school.

Theresa December 8, 1997 (third grade)

Dear Miss Hudson,

we are going to miss you when you move because you was my favite teacher and if you move I will go with you and I can help you clean up your house because at home I wish dish I switch the floor up and I make up my bed and I map the floor up to and we going to miss you to and I hope you have fun in Coloratoe to and remember when you red to us and make us do art and we hope you have a great time down thir.

I remember getting this letter and thinking, "How sad that this child just gave me a resume to be my maid. I don't know if that is tragic, funny, or sweet." I guess it was a little of all of those things.

I already know how hot it is. You do not have to tell me...

2011-06-04T03:52:00.007-04:00

HEAT

Heat sensitivity is a very common problem for people with MS. If you live in the South, it can be absolutely debilitating in the summer. Basically what happens is that when your body temperature goes up, even by as little as 1 degree, any symptoms you have become much more pronounced. The situation resolves once you cool off but just imagine what it is like when it is 100+ degrees everyday.

The interesting thing about the effect heat has on a person with MS is that this used to be the way they diagnosed people. Before MRI's, which were invented in the very recent past, they would submerge people in a tub of warm water to see if their symptoms worsened. If worsening occurred, a diagnosis of MS was given. This is actually how I diagnosed myself but we'll cover that later.

One thing that bugs me, even though it shouldn't, is when people make very obvious statements about the temperature. It can be really annoying when you are struggling to deal with heat exposure to hear a healthy person exclaim, "Boy! It's hot! I'm about to pass out!" or "God it's hot! You know its going to be 185 degrees on Thursday...". Makes me want to say, "Thanks for the information but I already know how hot it is. You do not have to tell me...".

The great Italian plumber a.k.a. Dr. Firestick!

2011-06-01T12:22:00.006-04:00

BLADDER ISSUES

When I told my neurologist that I was having serious urinary incontinence issues, he said, "Well you need to see Dr. Firestick". To which I replied, "what? who?". "You know, the Great Italian Plumber...Dr. Sasnett", he said.

Now I know Dr. Sasnett. He's a close family friend. But I did NOT want to go see him so I could be poked, prodded, and scanned only to be told that I would have to have a catheter. I would rather wear a diaper. So, I continued to wet my pants several times a day until my mother called him and explained the situation. He sent me a bag of samples to try and the following letter.

"CANDY GRAM FROM MONGO:
(You remember 'Blazing Saddles')

1. Sterile cup for urine collection
2. Assorted POOH POOH PLATTER
(from your Chinese Urologist)
Try each type for 10-14 days and let us know which works best
Enablex- one daily
Vesicare- one or two daily
GLENIQUE- (topical) apply one packet to "something I couldn't read" and "something else I couldn't read" (lots of ladies like this one)
3. Let me know if your Dad needs cialis or viagra to take to the FAR EAST (Rx for Jet Lag)

LOVE: UNCLE BIG"

Now this was a sweet, funny, and crazy letter and I kept trying to decipher what the instructions for Glenique said. Were they real or some kind of a joke. I wasn't sure but I could have sworn he told me to rub it on my gloudus and anus. My Mom thought it said the same thing. So, we both started googling gloudus to no avail. So, I finally said, "Well it doesn't matter anyway because I'm not rubbing anything on my gloudus or anus any way! That's just weird..."

But I just kept thinking that gloudus couldn't be right because nothing popped up on google. So, I kept scratching my head and staring at the paper until a light bulb finally went off. "OH! Shoulders and arms! Not gloudus and anus!"

Funny story the moral of which is if you have MS and develop urinary incontinence go to the doctor. They are unlikely to make you do anything bizarre but they do have messy handwriting.

Let's get down to the nitty gritty...or I should say the nitty sh*tty.

2011-06-01T12:19:00.033-04:00

My Time Working at the Psychiatric Hospital
BOWEL ISSUES

This one has been a difficult one for me to write...but it happened on my third day of work. I had arrived that morning to attend a two week long orientation at the residential, psychiatric hospital where I would be working. I was to be teaching the kids in the children's program and was very motivated and psyched up.

Then it happened...my worst nightmare. I stood up out of my car, started to approach the building, and thought "oh my God, I've got to go to the bathroom...now!". Then, "I'm going to the bathroom in my pants!! Number two!" It was very disturbing to say the least. I entered the building, took care of business as best I could, and went to orientation.

I tell you this for a couple of reasons. First, many of us with MS experience this problem occasionally. At the time, I knew I had MS but had not been diagnosed and was not putting 2 and 2 together...if you will. It did not occur to me that what happened was caused by MS, which made it all the more horrifying. The other reason I tell you this is because this problem continued to happen with some frequency for quite some time. During this time, a friend, who worked with me at the hospital and who had referred me for the job, approached me about commuting to work together from Atlanta. Now, I knew I could trust this woman. However, rather than tell her what was happening, I just completely blew her off. I will always feel bad about that. So, I guess my message here is that sh*t happens and that honesty is always the best policy.

More on my time at the hospital later...

Wheelchair etiquette...

2011-06-01T05:41:00.003-04:00

Rather than beginning with my story, let's begin with a lesson on wheelchair etiquette.

The cardinal rule is to ask the passenger before interfering with the chair in any way. Do not assume someone wants you to start or stop pushing them without warning. It is unsettling and extremely annoying.

Also, please don't lean on or otherwise fondle the chair in any way without an invitation. That is just creepy...

Don't talk to someone while standing directly behind them. It forces the passenger to crane her neck which gets uncomfortable when it happens often. Trust me on this. My parents do it all the time.

If a seat is available nearby, please take it while you chat. Otherwise, the wheelchair user will feel like a midget. It has been difficult getting used to going from 5'5" to however tall I am in a wheelchair.

It is always nice to ask people if they would like some help and to please let you know if they need help at anytime.

A short and funny video about MS...

2011-06-01T04:41:00.003-04:00

This was shot in Atlanta, where I lived for 10 years until MS forced me to move home and live with my parents. This situation is both a blessing and a curse but more on that later.

http://www.youtube.com/watch?v=6oraM8IF2Gc

MS Off the Beaten Path...

2011-06-01T04:18:00.005-04:00

This blog will not be about:
1. diet and nutrition to cure your MS
2. bee sting therapy
3. cobra venom (yes this was a fad treatment for a time)
4. mongoose spit, rose hips, or any remedies that are highly questionable and or suspect in my opinion.

It will provide the reader with my insights on the last 12 years I have spent living with MS and any other random thoughts that pop into my head. I am a 41 year old woman who has within the past couple of years had to start using a wheelchair and occasionally a walker for short distances. I am currently on disability but have had what I think were some incredibly interesting career opportunities over the years. We'll get to that later. For now, read and enjoy and please feel free to ask questions.