New study...

Periodically I am asked to post news about MS studies and I love to do it.

A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis

Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.

The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava^®. Arava^® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.

The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit www.tower3.msstudies.com or call 1-866-565-0245 today to learn more about the study and see if you may qualify.

MediciGlobal

Ashley Toal

I don't know about you folks but I am sooooo excited about any oral medicines that are being tested.

Patrick's entry

One of the main reasons I like to blog is that I learn so many interesting bits and pieces...like Michelle Obama was raised by a father with MS.

Oh goody...not for her but for US, the ones who have MS and may benefit from a first lady who might take this low down thief of an illness serious! If only I have the energy to watch her do it.

A survey for MS research

Because I have been blogging about MS since 2004 I get these kinds of requests periodically. This one wants me to ask all my fellow readers with MS to also take the survey.

I just took it myself and it was quick, anonymous and free. Just my type of entertainment.


FROM:

Kathryn M. Martin

Public Affairs/Patient Advocacy Manager, MediciGlobal

Email: kmartin@mediciglobal.com

We're doing some research to understand the journey people might take from their first symptom(s) of MS, to the time they visit a doctor, and eventually if/when they begin treatment options. If you have about 5 minutes to spare, we would really appreciate it if you could take this survey to tell us about your journey. It's anonymous so no identifying information will be collected.

Thanks for your help! Here is the link to click on or copy and paste into your browser:

https://www.surveymonkey.com/s.aspx?sm=biO8uU2lJ8ksAhrFncjciQ_3d_3d

June

This month has been very full for us, for me and for my children. And it has zoomed by way too quickly...I love summer.

I also made a trip to the ER because my "cold" just would not go away and my fever remained over 100 for two weeks. I hurt so much that even my teeth ached, something I had not ever before and found too unbearable; however, it was not enough to cause me to call the doctor.

Funny how if one of my kids is sick I take them immediately to the doctor but yet, I wxpect to just heal.

Turns out I had Bronchitis, double ear infections and eye infections~after an IV and a mega prescription for antibiotics I felt better in two days. Thankfully Charley hauled me to the ER before it got any worse, although he just said he wanted his wife back.

xxoo

weird reasons to find a blog

Site meters allow one to find how people get to your blog. I get people looking for information on MS. I get people looking for the word "futurmy." Some people are looking for Christina Brown, which may or may not be Me. Others are looking for poetry, Royal Family Kids Camp, others looking for finger twitching, MS camps, tendinitis and a few are looking at foster care blogs.

But then I get the really odd searches because, well because I have been blogging for many years and about many things.

Like this one or this one.

flustered

One of my pet projects is trying to get my closest family members to understand that I do have a chronic illness and sometimes it takes it toll on me. That they do need to pitch in and help me because I get tried on a level that other people do not, the kind of tired sleep does not cure.

This little story about the spoons really explains it well.

MS is an invisible disease and being such, my family tends to think I can just go, go, go and do, do, do. Usually it is not until I break down into tears of frustration because they are all lounging around and I am still working my fanny off that they remember I am the one with a chronic illness.

The internet can be a horrible place when one is sick because the slightest little new thing leads to the Google bar...it does.

I have been feeling weird things in my mouth and so I have goggled them.

WHY!!!!

Now any sane person knows better than using the internet for health searches...but yet we do it. That is how people find my blog, daily.

I goggled 'coughing and ms.'

Decided I was dying and then goggled 'cheap wills.'

Had another cup of coffee. Then thought, "oh Christina Brown, get real, it is just phlegm in your throat."

Went and threw the ball to my kids instead.

Damn Google.

But still, my loved ones do not get what it is like to be me, they do not understand MS pain, fatigue, numbness, vertigo or fear.

Oh the well meaning advice of the internet.

interesting tidbit ~ DeQuervain's, MS and search engines

This post from eight month's ago is the reason most new reader's find me...I wonder how many people with MS have this problem? By the way, I still do and I still wear the brace. It has evolved into a whole wrist and thumb thing now.

so I have noticed

Lately there is this new little thing going on inside my mouth, a bit of a tickle. Like left of dental work gone wrong.

The joys of MS.

MS Walk looms on and still need dough!

So I hit the ladies at church up today for sponsorship for my walk, I figured "why not?" I asked them to at least pray for me as I do the walk because half way threw each year I am never certain that I will finish it. Having completely numb feet is not a blessing.

At all.

Walking on numb feet is like imagining walking on your feet after they have been shot full of nova cane. Sounds yucky huh?

And dangerous.

My Mom pledged me right before the cruise so I have lots of ground to cover if I am going to make any dent in my goal....funny how the people I know do not ever want to give towards a cure for this illness but they will give towards March of Dimes or other worthy causes, even though they don't know anyone who has used the services of March of Dimes.

I have used the MS Lifelines services more than once and thus feel like as long as I CAN walk, I will walk. Please consider pledging me here ~~~~> link.

I am Walking for MS again

This year I have decided not to head up my own team (Walk On) and joined the team of my friend Jamie (a fellow blogger and MSer)...because, well because she invited me too.

Because I have five kids now.

Because I head up enough stuff.

Because I just want to do the MS Walk this year, not be the Capitan, like I have been every year since I was told those infamous words, "You have MS."

We did not walk last year because my Mom was in town and it just did not work out...but this year we will walk and I will mention it regularly...xxoo

Everyone has to have a cause!! LMAO

Click the title to go to my new team's official website and my personal page...as soon as I can figure out how to get the widget code to put it on my blog I will. Meanwhile, here is my first shameless plug for those pledge requests from my loved ones, the year before we raised $750 dollars so I know we can do this together.

My personal page is here ~~~> click.


Remember the money goes right to the MS site if you do it on-line and never to the Walker...and it is tax deductible.

mailed

They hit the mail on Monday....

those who received one know....

those who read the private blog know too...

those who REALLY want to know who to find can e-mail me...

What a shame that I can not tell you here...

I am living a watercolored life in a brilliantly colored oil painting.

My life has the fingerprints of God all over it but I can only tell you that God has been here at my house today, for fear that the small minded blog police may tattle-tell.

The sad part is that it is like eating a banana split and telling someone who has never tasted ice cream what that is like.


But oh my GOSH I can not WAIT UNTIL FRIDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


I will cry, I will dance in the streets, I will party with my babies.

I will catch bubbles and run circles to feel the earth spin.

I will laugh too loud.

And one day I will tell you why FRIDAY is the very best day of Charley & I's life to date.

Long time reader's may even be able to guess and may be wise enough to piece together the story...the people I have addresses for got invites to the much waited for, much prayed for, much life altering event!

I am dancing on the stars and the cow is jumping the moon.

I tell you a mother of five (opps did I say that?) with MS really can dance. ~~~Yeah, I still have that old MS too. ~~~~ I even run people.

(The astute are counting on their fingers and going when did she get five again?)

Pretty fast too, the running that is.

Fast enough to chase after a loose German Shepard if I have to.

Anyways we are having a HUGE party Friday and Saturday.....but I can not tell you why.

My first amendment rights and all will be reclaimed since that day I was told I can not talk about that super secret thing I do, but one day, one day I will be able to. One day I will no longer be living under the RULE of the blog police and will be free to be a regular mother, a regular writer of my old blog and I can tell my story like I use to.

In color.

with breathing words.....and love.

and humor. and more clarity...less alluding...

and sometimes saddness...but always with what I had hoped was dignity.

xxoo

I got tagged!

White Lighenting tagged me for this Meme ...and he is probably wondering if I will even find the time to play...

INSTRUCTIONS: Remove the blog in the top spot from the following list and bump everyone up one place. Then add your blog to the bottom slot, like so:

1) I'm Not Carrie Bradshaw
2) Behind Blue Eyes
3) BrainCheese
4) White Lightning Axiom: Redux
5) My journey with MS by Some Nameless Chick

Select five people to tag:
1) Tinka
2) Lisa
3) Lori
4) Jenn (she is new to me)
5) Cynthia

Q:What were you doing 10 years ago?

Ah, this brings me back full circle to Gil. Ten years ago in June I had just started noticing this really weird thing about my feet and how they kept falling asleep. A.L.L. the time. The would not wake up. It felt like pins and needles all the damn time. Becasue I was living in total blissful sin with Gil, who at 34 was dying of termminal Pancretic Cancer at the time he kept pushing me to go to the doctor about it. So in June 1997 I did.

It was the very first time in my life I had ever had a doctor say that I either had a brain tumor OR Multiple Scerlosis. It took months to get an appointment with one of the best Neuoplgist in town and thus a week before Thanksgiving I was told I had one very large braint tumor. That is how I know I look ok bald. (Ironically enough Charley rolled into Phoenix the same day I had my surgery.) Gil died in February 1998 and I don't remember meeting Charley until April of that same year but he remembers meeting me and he remembers me as the brave bald girl.

It would not be until October 2003, during a routine MRI, that a new doctor would inform me that I also had MS. This was two weeks after my total hysterectomy that left us childless.

I cried for about an hour because I did not know what MS was and then got on the internet and started to research it. I called foul because gosh darn it, in 1997 the man said brain tumor OR MS, not both. Damn the luck.

God had a plan....it included things I am not allowed to talk about anymore here.

Q: What were you doing 1 year ago?

One year ago I was in Florida hoping that my Grandma was not going to die of lung cancer. And something else huge that has changed my life forever...the joy of life moved in on the 25th.

Q: Five snacks you enjoy:

1) Fresh Cherries
2) diet Pepsi
3) peace & quiet
4) cheesecake
5) Summer's Dream Ice Cream

Q: Five songs that you know all the lyrics to:

1) Jesus Loves Me
2) When I get where I am going by Geoff Moore
3) Twinkle Twinkle little star
4) Theme song to Royal Family Kids Camp
5) The Blessing by John Walter

Q: Five things you would do if you were a millionaire:

1) Start a homeless shelter for families
2) Invest so I could do more with the money...
3) fund RFKC in my area for several years
4) open a daycare
5) adopt more kids

Q: Five bad habits:

1) fear
2) procastination
3) envy of those darn Jones
4) forgetting lessons learned
5) stubborn as a mule

Q: Five things you like doing:

1) reading
2) wrinkling the sheets
3) writing
4) playing with children & making up silly, silly stuff: like telling them we are having spider soup for dinner.
5) going to church and being with my friends

Q: Five things you would never wear again:

1) bell bottoms, my hips are too large, my thighs are too large
2) itsy bitsy bikini...I have, um, back and bruises from those lovely interferon shots.
3) the guilt of sins past
4) blue eye shadow
5) a bandana on my thigh, it just would look right.

Q: Five favorite toys:

1) bubbles, amuses the daylights out of me
2) my eyes and my imagination
3) books, all books. The good ones and the bad ones.
4) my pretend Ipod
5) computer...duh

Clay Walker

Living with MS:







PS: I am not nearly this brave when it come to my shots, I mean the man didn't even flinch.

my new video

Borrowed shamelessly and without asking after seeing here: Michelle.

This video is sponsored by the National MS Society, which happens to be one of the places I get my information about MS. It is a trust worthy organization. There will be a cure but before that happens I WILL keep on living.

Behavior Inventory

The rugs in my house seem to have a problem staying clean, even though I own a steam cleaner, the darn things are forever covered in foot prints and grime. Some of the prints are human sized and some are Big Dog size, like little mud pies.

I bring this up not to discuss my dirty rugs on a day like today, a day after Virginia Tech, but to point out how hard it is to not get personal in my personal blog. Dirt covers everyone and gets into our lives, if we are living it well.

Behavior fascinates me endlessly. How do people get to where they are? What drives them to the point of insanity and yet, others, when faced with similar tragedies can simply rise up and reach for lusty heights of goodness? How does that happen?

Is it our past that shapes us? Not entirely.
Is it ourselves? Not entirely.
Is it our environment? Well, again not entirely.

Who we are, a sampling of the whole thing called life and the choices we make, the very epitome of Free Will. That grandiose and age old concept that each of us has choices to make in life defines each of us.

A Choice.

Do I take this anger and disappointment and dive off the deep end (to use a cliché I just could not escape) or do I take it and build a monument to the pain?

Or do I study it and let it go?
Really let it go.

Suppose it depends on which manual is being read and which books are lining one's bookcases.

Tragedy does not beget tragedy if the choices are made well.

That is, if the lessons are truly absorbed.

Behavior Inventory...

Before the great ban on my words, the dark editing of what I could and could not write about, I felt a freedom to express a part of my heart here. (To wax poetically if I so choose too.) This blog was my release. And I always thought that I protected that which I had been asked to protect. There was not ever a moment though that my words were not guarded like a jealous lover, that I did not try to pick carefully what wrote about.

Even when discussing MS I have always tried to be forthright and clear...but I tried to limit the amount of information on exactly what I have endured. Sometimes I have offered information about MS in general. Sometimes I have talked about the illness in general just to leave me out of it. Sometimes it was to mask the real issues in my life that I was dealing with that had nothing at all to do with MS.

What makes me who I am? The circumstances that have brought me to today, I suppose added to my own reactions to them. Life alone does not make me, I make a choice.

I choose.

My feelings are mine.

My path is mine.

Funny when tragedy occurs people start to seek the placement of blame and sometimes, well sometimes the blame is just too much to bare. Yes, I meant bare, as in the naked truth would be too much.

Will we as a nation ever know the sadness in that young man's heart? Probably not.

He chose oh so poorly and with total depravity.




I can remember being in a lovely Doctor's office while my weak ex-husband was trying to build the courage to tell me he wanted a divorce wondering what I had done wrong. Wondering what I could do differently and telling him that his feeling were valid and OK. After he finally told me what he wanted I told him I would respect his wishes that I wished it would work out differently but OK. His Doctor excused him from the room, did you catch that? HIS DOCTOR excused him and then told me that the issues were not my issues but that man's. The doctor asked if I had had counseling before and said it showed in my responses to my ex-husband.

The nice Doctor told me next time, choose more carefully. And I did.

Rambling some and not really.

Behavior.

Inventory.



Rampages are adult tantrums and some adults are deadly.



This is a sad and despicable thing.

Learning to reshape one's own tantrums must be done from the heart.

My rugs require constant cleaning and my tantrums are reshaped before they get out of hand. At least I can admit to having them, I can acknowledge my mistakes, analyze them fairly and robustly and then plow gleefully over them with the steam cleaner.

Best present ever from Charley, that steam cleaner. Best husband too, even if he sometimes gives presents that plug in.