Sunday, November 9, 2008

Joanne's Starbucks cup

I like this story.
I do not believe the chemo process can truly be described unless you experience it yourself. Since MS is going to be my b*tch and chemo was its first whipping, Joanne and I were prepared to make the journey as comfortable as possible. In our world, comfortable comes in the form of entertainment, laughter, and the occasional whoopie cushion. I can tell you that there is an inevitable elephant that sits in the middle of the very small "treatment" room, where privacy is no option. Sometimes the elephant is so heavy, you feel guilty for laughing or smiling at the person in the chair 12 inches away from you.

Joanne picked me up for my last day of chemo. Per usual, we needed Starbucks. We glanced at the clock and collectively decided that we DEFINITELY had time to go to the "good" Starbucks, instead of the one that made us BAD coffees the previous time we went to chemo. So.... we rocked out to music in the mom-mobile, chatted a bit about what we might see at chemo since it WAS halloween, and wondered again why everybody always wants to drive into us. Whatev. We make it to Starbucks (drive thru, of course) & grabbed our lattes. We glanced at the clock again and made an executive decision that we ALSO have enough time to go to Dunkin Donuts for a box of 50 Munchkins. Oh yes... I DID write 50. Suhweet!

We made it to our destination, found a flipping place to park (which is NOT easy), and made it to the lab at 10:58am for an 11am appointment. Heck yeah! We were chatting with the man known as "the butcher" as we waited for me to have my IV put in. Joanne started to read her Starbucks cup and we decided, hands down, that the cup needed to be kept:
The Way I See It, #295
Can we laugh at cancer? Is it funny to lose your breasts? Am I crazy to have humor when I lose my hair? Should I ignore the giggles while receiving chemo? What if I nudge someone and sneak a smile, even though I have no eyebrows? Is it inappropriate? Don't be offended, it beats waxing!
---Julie Wade, Starbucks customer and cancer survivor from Seattle, Washington

That said it all.



Holy SMOKES!

Joanne here! So I made "captain" this year for the MS walk, must've been the soup and pot pie (no, not marijuana!). This should be a good walk, I am not pregnant so no babies to attend to. Last year was pretty much a last second plead for donations on my part but I had a lot on my plate. So I am going to TRY to be more involved this year. Should be fun times!

Make sure you get registered so we have a head count. I believe our sponsor (my husband) is going to get new FLASH shirts with the possible quote of "Walking to make MS Becki's bitch". We should probably find a more child friendly phrase so any ideas are welcome, you can even comment on this post!

If you've ever heard of HIPA, you just throw that piece of paper out the window when it comes to the chemo room! Check back often to find out about Anthony, the old make-up ladies, whoopie coushins, the butcher, IRMA, and all about what happens in the chemo room on Halloween!! Oh and the pee pee chair!!

MS Walk, 2009!!!!!

Well Team..... the date is scheduled for the MS Walk at Forest Park! It will be our FOURTH annual appearance (can you believe it???).

The big day is Sunday, May 3rd at Forest Park. I know it is early, but it gives us all the more time to raise MUCH needed dinero!

Team FLASH is registered with the MS Society and we are ready to get this "thang" started once again.

To join us, go to.... www.msnewengland.org and click on "Walk" (it is in green this year). If you remember your username and password from last year, click on My Participant Center and enter that info. If not, click on "Sunday, May 3rd, Springfield"; click on "Register"; click on "Register to walk and join existing team"; locate Team FLASH and click on "Join Team" (located on the right); and take it from there.

PLEASE feel free to create your personal page (mine is done for the minute anyway).

There will be lots more info to come......

Yours Truly,
The Captain :-)

Is MS my B*tch yet??????

Update:
I had my last chemo treatment on Halloween. WOOOOOOOOT WOOOOOO!!!! Joanne & I journaled our experience through the endless HOURS we spent during the chemo "process". I plan to share some of it here at our blogspot, but I need to weed through it a bit first. Some of it just wouldn't make sense to anyone else.

Anyhoo... My last dose was increased again because my bloodcounts just refuse to go down- the doc says I'm "tough" (and to think he needed a specialty in oncology to figure that one out). So.... I was much sicker this time. And although I did not think I was going to live through the first night, I kept reminding myself that it was my last treatment (at least for now). I lived and I am getting a little stronger every day!!!!!! :-)

To all of you who joined the prayer circle.... THANK YOU.
To those of you who supported me, near and far.... THANK YOU.
To those of you who made me soup or brought me groceries.... THANK YOU.
To those of you who visited me and/or brought me movies.... THANK YOU.

To Joanne.... I am finally speachless.

Monday, November 3, 2008

Our first Buddy Walk...

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Our T-shirts
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Vinnie's sweatshirt (arms of it)
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Vinnie's sweatshirt (back of it)
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Ahh...just in time for the Walk part!!
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And the after party...tennis anyone?
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Uhm, Jimbo? It's only a game!
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A Thank You!

You may never know what it feels like to have a few words rock and shatter your world. It’s like a sucker punch to the gut. You could almost pass out, your knees want to give. Fear and sorrow all rush through your body. You can’t breathe but yet you have to reclaim yourself because in front of you is the most beautiful baby you’ve ever seen. This moment will be embedded in me for the rest of my life. “The test for Trisomy 21 came back positive”

I sent out a letter a while back, explaining the Buddy Walk and asking for participants and sponsors. Some of you it was just in conversation that you found out about it, some others from a jar sitting on a counter. But all of you touched our lives by walking with us, donating, or simply throwing a couple bucks into a can.

Our first Buddy Walk was amazing. As a team, I believe we made a donation that was almost $2000.00 in honor of Vinnie. Words can not express how grateful we are to have such wonderful people in our lives. The amount of support and love that this little man has brought into our lives is almost overwhelming.

“The test for Trisomy 21 came back positive”…at that moment, 8 months ago, I couldn’t even imagine the beautiful things that were and still are ahead of us. Thank you for being part of our miracle.

Monday, October 27, 2008

Good times

Bubble Wrap Maniac
If you love popping bubble wrap... this game is for you!



www.winterrowd.com

Wednesday, October 22, 2008

Saturday!

Saturday is the day! Pray for nice weather or at least no rain!!

Plans are:

Meet at Stanley Park between 10am and 10:45am to get your Team Flash t-shirt and collect any donations. (Look for the people in yellow shirts with Flash on the front and Charland Refrigeration on back.)

Register with DSRGWM after you get your shirt, drink coffee, eat donuts.

Walk a bit.

Hang out with all the fabulous people until 2pm, raffle, food, Wally the Green Monster, music, fire truck!

Our house for more food, fun and pumpkin carving!

We can't wait to see everyone there!

Sunday, October 12, 2008

October

apparently october is a busy month. it is also Accessible Parking Awareness Month in New Hampshire. why only NH is beyond me...

this accessible parking (a.k.a. handicap parking) thing makes me a little crazy 2 be honest. and i will tell you why. i, myself, have been permitted by the RMV of MA to utilize a handicap parking placard. this permits me to park close to buildings and stores and all that jazz. the RMV does not just hand these out. medical paperwork needs to be filled out by doctors and sent to boston, bla, bla, bla. granted, some people DO use placards that don't belong to them which makes me VERY mad. and i hope they are all caught and receive the "punishable fine". do you have any idea the limited # of "accessible" parking spots there are?????????
pardon me, i tend to get all wound up on these issues.

if you looked at me getting out of my truck in an "accessible" spot, you would think i stole the placard from my grandmother. you wouldn't think there was anything wrong with me, unless, of course, you were fortunate enough to see me strap on my leg braces while trying to balance against my truck and adjust everything appropriately (this can't be done inside a vehicle, so it IS pretty funny 2 watch).

here is where i educate you with a voice of sarcasm and frustration. the term "you look so good" should NEVER be used in converation with a person who has an invisible disease like MS. those words stab into the heart with a force that i cannot even begin to describe. the MS Society actually has a brochure on this very topic, which i sometimes want to mail to everyone in the universe. ok, so maybe i don't "look" diseased on the outside, but unfortunately MS is eating away at my central nervous system on its own timeline. unless you can crawl into my brain and spinal cord, you can't "see" this happening and there is nothing to "look" at. maybe someday, though, you will get to SEE the effects of that, which makes me really sad and mad and maybe even a bit scared.

reality check: you don't need to see everything to make it real.

the moral of this story is... please don't judge by the way people look. please don't stare at the young women (me) who pulled into the handicap parking spot and looks so good. AND certainly... please don't park in an Accessible Parking Spot, unless it is YOUR picture on the placard, OR the picture of someone IN your vehicle.

going to do some meditation now...
---becca :-)

Where's the $$$$$$

OK. here is where i start to get mean (ish). as you have read.... October is Down Syndrome Awareness Month. joanne has so nicely educated everyone a little bit about DS. the Buddy Walk is less than 2 weeks away & we are disappointed at the LACK of donations from the people who "love" us... come on, now- no donation is 2 big or 2 small. is ANYONE feeling guilty yet????? i don't really want 2 use that tactic, but i will.....
the Down Syndrome Resource Group of Western MA needs our help 2 continue supporting individuals & families in the DS world.

xoxoxoxo

Saturday, October 11, 2008

October is Down Syndrome Awareness Month!

Down syndrome Stats:

Down syndrome occurs in every 600-800 births.
It is caused by an extra copy of the 21st chromosome.

There are 3 types of Down syndrome:

Nondisjunction makes up 94% of all cases. This means that every cell has the extra 21st chromosome.
Translocation makes up 3-4% of all cases. This is an inherited form of Down syndrome.
Mosaic makes up 2% of all cases. This means that not every cell has the extra chromosome.
The diagnosis of Down syndrome is made by a chromosome analysis test called a Karyotype. There is a slight reccurence risk for future pregnancies.

Features of Down Syndrome:

Individuals with Down syndrome may have a few or all of the following characteristics:

Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Enlarged tongue
Fusion / syndactyly of 2nd and 3rd toes

Medical Complications Associated with Down syndrome:

Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlantooccipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
CataractsVision Problems
Hearing Loss
Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce
Increased Risk of Testicular Cancer in Males

Intellectual Disability & Developmental Delay for Individuals with Down
syndrome:

Variable Range of Mental Retardation from Mild to Moderate
Mean (Average) IQ of 42
Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management

Long-Term Prognosis for Individuals with Down syndrome:

Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Special Education Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Life Expectancy (age range of 50s-60s)

More Like Other Children Than Different

Friday, October 10, 2008

the history of this blog

so here's how this blogger-thing happened....
i am challenged when it comes to all the "cool" stuff people do on the computer, like My Space and Blogs and all that jazz. people keep peer pressuring me on the issue, which i naturally bark at. but my good pal joanne set this all up and my only responsibility is to participate. i like that.

Team FLASH made it's debut at the MS Walk at Forest Park in May, 2006, not long after i was "officially" diagnosed with MS (Multiple Sclerosis). We have grown bigger and badder each year. The newest member of Team FLASH (Vinnie) has given us another cause to support. We now have the pleasure of participating in the Buddy Walk to raise funds for the Down Syndrome Resource Group of Western MA. We will make out debut on October 25th. (P.S. this is also a reminder that we still NEED your donations!!!!!).

official business is over. time for the juice. one of the other things we want to do with this bloggity-blog is truthfully write about the laughter & the tears of DS (Down Syndrome) and MS (Multiple Sclerosis). perhaps it will educate some readers, which is always a bonus. perhaps it will provide insight into OUR worlds and how we manage to keep smiling, even through the occasional tears. we welcome your feedback.

i am currently "making MS my b*tch," as it is so bluntly stated in my profile. i am receiving chemo treatments in hopes of slowing down the progression of my MS. i had a treatment exactly one week ago and boy did it kick me down. the real pain in the ass is that i need to drink SO much water, which produces SO much urine. that is truly one of the only reasons i am forced to get off the couch or out of the bed. joanne and i have discussed numerous ways in which I could bypass all that, but i haven't tried any of them........ yet.
at any rate, there was already improvement in the strength of my legs and in my walk after the first treatment, so keep that prayer circle going!
---becca :-)

Thursday, October 2, 2008

Info from the Western Ma DS group

http://www.dsresource.org/buddywalk/signup.htm

Hi EveryBUDDY!

Please feel free to forward this link to all of your Buddies planning to walk on October 25th, at Stanley Park in Westfield. Once again this year you will be pampered with;

Coffee (From our good friends from Seattle that wish to remain anonymous) and Doughnuts (Thanks Diana's Bakery) at 10AM

A bit of exercise at 11AM

Sumptuous Burgers, Dogs & Chips (Sponsored by the West Springfield Firefighters) from 11:30AM - 1:00PM

Ice Cold Coca-Cola Products All Day (Thanks Coca-Cola Enterprises and Coca-Cola Northern New England)

The Rocking DJ Jay all Day (Thanks Menzel & Associates, CPA)

Cotton Candy All Day (Thanks Dr. Maureen Quinn, D.D.S.)

Popcorn All Day (Thanks Kelleher Brothers Landscaping)

Another Visit from Our Great Big Buddy Wally the Green Monster (Sponsored by the Great People from HESS)

Remember to "Back Up Your Buddy" on the Buddy Walk T-Shirt... Teams can pledge to raise $500 (Or, find a company to sponsor for $500 and you both get your logo on the Back of the T-Shirt

Raffle at 1:30PM

2PM Thanks for Coming - See You Next Year

As always there is no cost for the WMass Buddy Walk. Every walker receives a beautifully designed commemorative Buddy Walk T-Shirt, Breakfast, Lunch, Popcorn, Cotton Candy & Entertainment thanks to our sponsors. There is a small cost for the raffle. Walkers can solicit sponsors for the Buddy Walk (see attached form). Donations will be collected the day of the walk at the Buddy Walk registration welcome center.

Please support The WMass Buddy Walk Sponsors

2009 Down Syndrome Resource Group of Western MA Calendars will be available at the Walk for $10. Thanks Lady Diana McLean for your beautiful work.

Tuesday, September 30, 2008

October 25th 2008, Buddy Walk

The Buddy Walk for Down syndrome finally has a registration thingy please sign up at http://www.dsresource.org/events.html click on Register Here. But make sure you let us know what size Team Flash shirt you will need by e-mailing us at this address team.flash@live.com. We will have more details about what the team will be doing that day but our plan for now is meet at Stanley Park pass out Team Flash shirts, collect money and walk as a team. More details to come so check back often.

Welcome...

Maybe we can actually get somewhere with all of this! It's us, Joanne and Becca posting news about MS and Down Syndrome and the walks we want you to support with us!