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Messages By: deb125

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October 5, 2006, 12:33 pm CDT

adjusting

The hardest thing to me is trying to change my dreams.  Chronic pain and disability doesn't just change the dream you had for yourself.  That is hard enough... knowing I will never have the chance to run a marathon when I am forty or hike a mountain... Chronic pain changes the dream you had for your family.  My husband had to get a job for better medical which led to him driving three-four hours a day.  I was supposed to work part time and now he works two jobs.  I can't hold up my end of the responsibility.  My daughter deserves my time and attention.  I have to chose what I will spend my energy on.  Will I do laundry today or vacume?  Will I make a nice dinner or play a game with my child?  It is hard to see your family suffer because of your disability.  How do you handle that?
 
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October 5, 2006, 8:12 pm CDT

sugestions?

I am a 33 yr old mother of one, and wife.  As well as that I am dissabled.  I was wondering how other people deal with the stress and demands of trying to ballance the wants and needs of your family with the physical limits you face.    Some of my background?  I suffered a broken back in 2001.  Dr's didn't find it for a year.  I went from dr to dr getting told to take more pain medication and antidepressants.  One Dr even told me I was just a woman and was panicing because I had a little pain.  I could rant forever on the history but that doesn't change where I sit now.  After three major spine surgeries I am very limited.  It also doesn't help that to outsiders I look normal.  any suggestions?
 
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October 9, 2006, 6:41 pm CDT

new name?

Quote From: bettybooppink

 Cheri,

I too am disabled. I have MS and am in a wheelchair. I worked for many years with the elderly and with Hospice ( the terminally ill). I still feel like I could be a productive part of the work force but cannot get anyone to look past the wheelchair or work with me on the hours I put in as the fatique is awful. I am depressed most of the time but that is part of the disease so I don't need more obstacles to depress me more. But for the most part I try to make the best of my position in life and find ways to stay up beat all though it can be a challenge most days. I understand what you mean about people being unkind and uncaring and sometimes that includes your own family. But I try to stay close to my God and do the best I can do. Feel free to email me anytinme to chat. I would love to have a new friend. Sharon

Maybe we should be called the different-abled since it can varry so much from person to person, as well as day to day for some of us.
 
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October 12, 2006, 11:15 am CDT

Thankyou

Quote From: brendamm

When I first got sick I was a ICU nurse, a single mom and very much a Type A person.

I did not smoke, I was very thin and fit and worked 14 + hrs a day.  I had my life all planned

out.  After the first heart attack at the age of 32 I knew I had to make lifestyle changes.  6 months

later I had my first stroke and ended up in a wheelchair unable to walk, talk etc... I pretty much

crawled into myself and was ready to throw in the towel.  Then things went from bad to worse

I had breast cancer ended up with a mastectomy and right after that I had the big diagnosis

a genetic neurological disease - Mitochondrial Myopathy was the culptrit.  Few people live

to see their 30's - one of my grandmothers doed when she was 28. One of my dearest friends

is one of my drs - he told me I had maybe 3 months to live.  I realized I had some SERIOUS

decisions to make.  Then I had yet another stroke.  Subsequently I had a pacemaker implanted

which I knew would but me a lot of time.  Then I decided to fight back.  

I set new life goals for myself.  I talked to my drs and agreed to try experimental meds, vitamins

supplements you name it I would give it a try.  I had to try.  My son was now in college. And I

had remarried so I had all kinds of alone time on my hands.  I had my husband buy me a

Gazelle (not the animal - a low impact ski machine) and I worked my rear off.  Then I decided

to start giving to others, but what could I do...I was in a wheelchair and house bound.  So

I started baking for hospice patients - no money involved.  I volunteered my time & talents.

I have now been doing that for 5 yrs and its a big success.  Then I wanted to do a little more

so I started helping with some other community projects - just letter writing, baking for sales etc..  To make a very long story short, just because some doors closed in your life, open

new ones AND if that means knocking down a few walls to do it then God Bless you GO FOR IT.

Now I am on the Board of Directors  of an Ind. Living Center, I am and advocate for elderly & disabled and I recently started my own business helping low income people in my community

get the prescription drugs they so desperately need.  ANd I do motivational writing & speaking

You have to make a miracle happen in your life sometimes.   Of course your kids deserve your

time and attention - there are plenty of things you can do at home.  Write a childrens book with

your kids.  Don't let your disability determine who you are.  You are a warm loving woman deserving of love and respect,  you are a devoted wife & mother who loves her family.  You

don't have to do it all.  Do it a piee at a time a day at a time.  I have had days when laundry was

a major accomplishment. OK, so the next day I made Vac the event of the day. 

There is more than one way to be Super Mom - give of yourself (your spirit) to your kids and

teach them how important it is to love and accept everyone regardless of their physical limitations.  Life is all about helping yourself & helping a friend get through the rough spots.

I know you can do this...I did it and so are thousands of others.  You have so much to offer

yourself and the world....GO FOR IT    Teach your kids to see tragedies as a opportunity

to learn something about themselves.  See things as detours not road blocks.  This could

be the greatest gift you could ever teach your family - not to give up in the face of adversity

 

Brenda

I needed to hear that.  Not from a Dr. or a friend or family member but from someone who has walked the same road.  Your words have made a difference for me.  Thankyou so much for the encouragement and advise.  I am grateful
 
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October 12, 2006, 11:35 am CDT

to all of you

can I just say wow!  I guess you could call me a newbee.  I just discovered you about a week ago and you are all the most amazing people I have never actually met in my life.  I am a gimp too and needed the comrodary (how do you spell that I never could spell) anyway  I have been reading postings.   I have laughed and cried and feel like I am not alone anymore.

 

bless you all

Debra

 
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October 23, 2006, 11:43 pm CDT

Greetings

Quote From: profderien

hi debra --

 

from one gimp to another, hellooo!  now, the gimp test (i hope you do well!)

 

how many medical devices related to mobility do you have in your hall closet? walkers, canes, walking boots, wrist and ankle splints

 

do you own more than one wheelchair?

 

do you have an orthopedic surgeon on speed dial?

 

how far can you walk without assistance?  one step?  two steps? all the way to the bathroom?  or half-way to the bathroom and full of regret? 

 

has "help, help, i have fallen and i can't get up" stopped being funny to you?

 

do you use old portable toilets as giant planters in their... off season?

 

(we are working on "how many gimps does it take to change a lightbulb?")

 

i hope that i haven't bothered anyone -- finding fun helps me to cope -- but that may not be your cuppa tea...

 

giggle.

ar ar ar...

 

great to meet you, debra -- jump on in, the water is fine.  what brought you to this infernal place?

prof

 

 

Hi prof

I like your gimp test.  I am embarrassed to say how many medical devices I own, I have a scooter

 

in my garage and yes I have memorized my surgeons number!  I found you by chance looking for

 

someone to talk to.  And alas I have a toilet raiser in my attic but my husband is a really good

 

gardener and he would never let me plant it in the front yard.  Maybe we should set up a

 

beautify America campaign.  And use our various medical devices as garden art.

 

Hope you have a good day

deb

 
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October 23, 2006, 11:47 pm CDT

Hi back

Quote From: dianah

Good Evening Debra..

 

Wanted to send you a huge welcome and a hello..

 

I'm Diana and had an work injury in 2002 and just am going back to work this week, so I am way behind on the board and other things, but wanted to say hi and so glad you have hopped on board..

 

Take Care and sending you a hug and all my Love.. Dianah

How is it going back?  Hope you are doing well.    Thank you for the message.  I look forward to chatting when you can.

 

Deb

 
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October 24, 2006, 12:00 am CDT

Hi

Quote From: mustbecrazy

Pickles, I'm so glad to hear from you...have been worried about you...the kids keep asking "how's Pickles?"  My little sister and I loved the broken yoke eggs...my mom always said she broke the yokes just for us...now I know different... my oldest son will be cooking Chicken Divan for the family this week...We have those same dead flies in our carrot cake...or were they bits of what ever was in the cat box?  Jackpot!  Some husbands really should get a sense of humor...my husband knows by now that I will do or say things that may embarrass him in public...he doesn't get mad...he gets even. LOL

 

I've been off the board for a few days, and I was on page 10 (I think) and still haven't reached my last post (kind of like a bookmark...so I know where I left off with the reading).  Things have been so hectic...still haven't fixed the car yet...my husband said some swear words at it, and it still doesn't start.

 

Saturday, the whole family went to a marching band festival that our older 2 boys were in...their band took 3rd place in the small schools division...only 300 kids in our little high school, and 45 of them are in the band. Did I tell you that the band wears KILTS?  They are the Highland Scotties, and they make fun of any other band that wears PANTS for their uniforms. LOL 

 

The stress of a busy schedule has caught up with me...pain and depression.  My meds have been adjusted for the bipolar disorder...AND we finally got the memory foam mattress cover from Costco...have had it since Friday, and I can really tell a difference in the comfort level and ability to sleep...although the hip pain still wakes me up at night. 

 

Brenda, thanks for the fish story...I chuckled, trying to picture the whole thing...those funnies really do help with the depression...I can smile through the tears.  I certainly hope that you have a life jacket in case you fall in again...those mean old fish will bite your toes, you know. LOL  Seriously, I hope you feel better soon...glad to hear you weren't badly injured.  We have poplars that make a generous donation of leaves to our yard every fall...and the darn trees aren't even in OUR yard.

 

I am so glad to hear from PK2 that she got the help she needed...God really does answer prayers.

 

Prof, how goes the new pain study?  Double blind...does that mean that both of the doctor's eyes are closed when he picks a medicine out of his cabinet to give you?LOL  I hope that you are feeling better today.  Thanks for the compliments about my writing...I put a lot of thought into what I write...it cheers me up thinking of new ways to make people laugh...at least I hope you're laughing.

 

Dianah...my laundry can be described as "mountains"...piles just don't do it justice...have been so busy...finally getting some of it done...my oldest son had to dig through his clean clothes that he hasn't put away for a year (really), so he could find some pants to wear this morning...all of his jeans are in the wash...mom's not a mind reader, or a pants counter...if they are out of clothes, they had better get some in the wash (the dirty ones were under his bed...all 5 pairs!)

 

A couple more installments from "20 ways to maintain a healthy level of insanity":

#12.  Sing Along at the Opera

#7.  Finish all of your sentences with "In accordance with prophecy"

#3. If somebody asks you to do something for them, ask if they want FRIES with that.

#18.  When leaving the zoo, start running (or rolling really fast) toward the parking lot yelling "Run for your lives, They're loose!!"

#19. Tell your children over dinner "Due to the economy, we are going to have to let one of you go."

 

Well, I just know I left somebody out...don't mean to...just a bad memory, and I can't even blame old age (I'm 45).  I apologize...I'll pray for everybody on the board, as I do every day...even when I'm not posting.  I hope the insanity brightens your day.

 

Becky

 

PS I'll keep reading backwards in the posts until I find where I left off last week...what a busy board...wonderful support system!!

 

My name is Deb and I am a newbee. 

 

I love your 20 ways to maintain insanity.  Ha Ha  I also noticed you talking about band competitions.  Before I broke my back I used to teach flag team at a couple of local schools.  I even marched in drum and bugle corps.  What a great activity.  My daughter is only eight but I want to get her involved in band as soon as I can. 

 

Anyway, it is nice to meet you

Deb

 
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October 25, 2006, 2:13 pm CDT

DCI

Quote From: profderien

becky, hello again (roughly 30 seconds since the last message!) --

 

when i lived in berkeley, i lived with a guy who was the drum major at ucla as an undergrad -- and he introduced me to the very strange and wonderful world of drum and bugle corps!

 

his younger brother, still in high school, was a bugle blowing fanatic -- for the santa clara vanguard. he loved to stand at the end of his bed and blow that thing until he passed out.

 

*i*  did pass out one very hot day when they were practicing in sacramento (why there i don't know)!

 

i want to several competitions and can only say that if kids could put that much energy on the field, it is scary to think of how much they might achieve...

Hi this is Deb

 

Did you like drum and bugle corps?  In my former life I was in the Phantom Regiment based out of Chicago.  I was a flag/dance girl.  This was in 92, the summer after I graduated high school.  Boy if your friend was in the van guard he was in one of the nations elite.

 

Do something you enjoy today.

 

Deb

 
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November 1, 2006, 2:12 pm CST

Scared!

OK I need a little info poll.  How many of you have applied for social security disability? if it is any of my business.  I am asking because I just got notification of a court date in my case.  I have been waiting two years.  Now I am scared to death.  I have never had so much as a parking ticket and the idea of going to court terrifies me.  We go on the 22nd. of November.

 

I shouldn't be nervous right.?  I don't know I guess I am afraid the judge is going to take one look at me and say there is nothing wrong with me.  That has happened to me before when my Dr's couldn't find my broken back.  They only took x-rays from one angle.   Since 2001 I have had two spinal fussions(L5-S1 then L4-L5) and a laminectomy.  I am always in pain.  I go to massage therapy, physical therapy, and the chiropractor as much as I can afford. 

 

Do I have to worry about my age biasing the judges ruling?(I am 34)

 

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