just livin’

“hApPy FaLL”

I love photography, recently I got a new camera that I love, I don’t know how to use it that great yet I just kind of guess.  Here in Michigan the last few days have been in the 70’s here, just beautiful, the trees are changing colors, the nights are chilly, I just love fall.  All my boys play football, so it’s nice going to their game and not freezing my rear off.  I was so excited to use my new cushion I just purchased for $287.00, it’s called a ROHO, it’s all air inside, so it was supposed to take all pressure off of my rear end.  It didn’t, yesterday I tried it out at my son’s football game, I couldn’t tell a difference between my old foam one and this one, ugh… maybe I did it wrong, I go to therapy Tuesday for the first time in 3 weeks, so they will look at it and see if it’s the right fit and all that jazz.  In the beginning of this year I won a scholarship for physical therapy for 6 months 3 days a week, 2 hours a day, and that ended a few weeks ago and I have been waiting to get in somewhere, my legs are so tight.  My spasms are almost throwing me out of my chair, that wouldn’t be good, I am no lightweight so if I fall, I hope I have a bunch of strong men around because my weight plus it’s dead weight right, haha good luck.  I get my van this week, I hope.  First time driving in over 2 years, I am so fricken nervous, why??  I don’t think I will be able to drive with my kids for awhile, if so I need some tape for their mouths and hands, so they don’t fight, yell, or criticize my driving.  GOsh, I have been a backseat driver for 2 years now, all of my drivers are probably thanking God right now that I will be able to drive my damn self now.   Hahaha I am going to go pick their butts up and drive like they did with me and see how they like it.  My one friend pushes the gas then lets go, pushes the gas and then lets go and so on, no wonder why she always needs gas, she puts make up on, texts on her phone, drives with her leg, what the hell, get me out of this car, ahhhhhhhhhhhhhhhhhhhhh!!!  My other friend has road rage, so watch out, FOR REALLL.  My parents, well my mom is the best out of everyone, my dad, well sorry Dad, he gets lost or turned around easy, he never sleeps because he has so much on his mind, ever since this happened to me, he hasn’t slept, he lost 75 or so pounds (which was good), but I worry so much about my parents they do and do and never take care of themselves.  I have to try and sneak to get their doctors phone numbers and make appts for them.  lol  They are 61 and 63 and should be enjoying their retirement and not taking care of me and my kids.  I do alot, but I live in a colonial, so I can’t get upstairs or downstairs, I am stuck on my first floor, so if any of my children need me and I am alone with them then what??  My better half travels with his job, out of state sometimes all week, so they are here all the time.  It’s hard for all of us, but we pull together as a family and do what we can with what we got.  That’s what all families should do, but they don’t.  My parents I can count on no matter what, my brothers, not so much, my friends not so much, so thank god for them.  Enough blabbing, until next time :/

The art of being wise is the art of knowing what to overlook.
William James

Transverse Myelitis

I just passed my 2 year mark with Transverse Myelitis, an auto-immune disease that took over 75% of my body and left me paralyzed.  I am a mother of 3 boys, 13, 10, and 4.  I was very actively involved in their day to day lives, their sports, school, homework, play, and bedtime rituals.  We live in a colonial, so  my bedroom is in the living room, I cannot get up those stairs to sleep with my family, tuck them in, shower, etc.  I sit in my bed alot of the time and think of all the things I could do, should do, can’t do, can do, blah, blah, blah.  I try not to have myself pity parties, I do get a good cry in when noone is home now and then and suck it up and go on with my day.  After 2 years I am finally going to drive, my van is in the shop being modified as I type, it will be ready the middle of October, whoohooo, Freedom.  Not driving really changes a person, not walking does also but atleast my wheelchair gets me around.  I have been meaning to blog for months, I am not quite sure how to do all this so hopefully I can figure things out, I would love to  meet people with auto immune diseases that can relate.  I would love to meet upbeat people that can make me laugh, laughter is the key to happiness, well one key anyway.  So until next time 🙂

It’s not what happens to you,

It’s what you do about it.

                                                                    W. Mitchell

Drivers beware

This was picture I took driving my new modified mini van, woo hoooooooo.  I went for a drive into the State Park next to my sub and I captured this pic on my way out, the colors here in Michigan are absolutely beautiful, I believe they are at their peak.  I have tons of beautiful fall pictures, if ever interested in taking a look at my photos here is the link http://www.flickr.com/photos/queenofmycasa/ I am always adding new pics, I have thousands on my other computer and I am slowly going thru them.  Anyway, so after 2 whole years I am back on the road again, I got my minivan on Wednesday, and yes I am driving with my hands, it’s amazing what they can do for us handicappers these days, now only if Kohl’s new how to design their store so I can fit down each fricken isle.  I had to drive about 45 minutes from my house to get my van, we took mostly freeways all the way there, well on our way home, I took side roads, I just new if I was going North and East I would end up home or close to it and I did it.  Plus it was a beautiful sunny fall day, with all the trees and different colors it was  a beautiful drive home, scarey yes, but I soaked it all in and thanked God for the use of my hands still, so see we all need to be grateful for something, me I am grateful to be alive and to be able to hug my kids, throw shoes at them if needed LOL j/k, and now drive, so my advice for the day is Live for today because you never know what tomorrow may bring, actually live in the moment.  This disease hit me in 2 hours, a pain in my back and within 2 hours completely paralyzed from my chest down, and the docs don’t know why or how.  So appreciate what you got and don’t sweat the small stuff 🙂 until next time.

Victor Hugo:

“People do not lack strength, they lack will.”

Freedom

So after 2 years of not driving I finally pick up my new modified van tomorrow morning at 10am.  I am so nervous, excited, anxious, scared, and happy all at the same time.  I will be driving with my hands, the hand controls will be on my left and I steer with my right hand, the steering wheel will also have a Suicide Knob on it at about 4:00, I wish they called it something else than that.  Anyway, yae for me I get to drive myself places again, my poor parents wont have to lift my wheelchair in and out of the trunk anymore, ever, it broke their backs doing it and it broke my heart that they had to do this for me.  I am worried about the outside world and how it’s so not handicap accessible at so many places, ugh, my little front wheels get stuck on the smallest cracks, I am so afraid of falling out of my chair or getting stuck or parking in Handicap and someone blocking me in on the side that my ramp comes down and I need so many feet available or it wont come down I don’t think or if it does it will crash their car.  Hmmm  maybe their car needs to be crashed if they park so fricken close to something when they aren’t supposed to in the first place.  I could go on and on about handicap parking but I wont, this is about me and my freedom.  I am a 35 year old paraplegic that has been living the past 2 years depending on my parents and fiance’ to take me everywhere I needed and wanted to go.  So this is it, I will and can be independant again, I have 3 boys, I can drive them places again, go to all their sporting events, school events or whatever and wherever, I can go, and on my own.  I will have a power chair soon, hopefully, my insurance denied the first claim and now we have to appeal, so hopefully they will approve me for one my shoulders are both shot, they said rotater cuff tears in both, fun I know, but it’s my life, a power chair would help me so much on the outside world, I could fly in and out with  no problem.  So tomorrow is the day, the beginning of my new life as a independant paraplegic mother that can do anything I put my mind to doing, I can!!!  until next time :0)~

“Nothing is impossible. Some things are just less likely than others.”
Jonathan Winters

Mom2Mom

Has any of you mothers out there ever been to a mom2mom sale??  I am doing one on Saturday, my first one.  I have so many boy clothes it’s ridiculous, my mom says ” I have more clothes than Carter has pills” huh???  Ok Mom, she’s 61, so any of you in that age group probably have heard that saying, but me and my age group never say that.  Back to the mom2mom sale, sorry A.D.D. here.  I paid $20.00 for the table rental, I bring all my kid stuff, clothes, toys, etc. put them all out, stack them up, hang them up, bag them up, and hopefully sell everything and make some money.  The nice thing is that we get to set up the night before so we all get first dibs on other peoples items, there are 85+ tables, woo hoo.  Really I don’t need a damn thing, I just love the adventure.  My problem is pricing, I don’t want to go to high or to low, hmmmm what to do?  Before I was in this chair, I was addicted to garage saling and mom2mom sales, they are so fun.  So I am looking forward to Saturday more than anyone knows.  I don’t know about you but it’s only 50 degrees here and I am freeeeeeeeeeezing, it’s raining too, yuck.  I was looking forward to watching Grey’s Anatomy tonight instead the debate is on, ugh no thanks, look like I’ll catch up on my DVR.  I am so Palin’d out I don’t think I can handle hearing what she has to say, what that she can see Russia from her back yard, no she cant, you can see it from an island off Alaska that she has never even been too, the folks on that island didn’t even know who she was.  lol  Until next time 😀

Life is what happens to you while you’re busy making other plans.
John Lennon

Paraplegic + cold weather & rain = miserable

BURRRRRRR, I just got back from my son’s 8th grade football game that started late so instead of 7pm it started at 7:30.  We were able to pull up right next to the gate and see the field perfectly and really I didn’t need to get out of the car, but I said, hmmm look at all those other parents toughing it out, just because I am in a wheelchair doesn’t mean I can’t go sit in the rain and freeze my toosh off too, so I did it.   I got out, covered up with a blanket, put up my umbrella and prayed that the rain would stop and the game would go by really really fast.  WRONG!! within the first 2 minutes of the game they had some lighting problems and the field was dark, the boys were freezing, and then announced it might take upto 10 minutes to fix the problem.  Ok, I can handle this, by now it’s POORING, not drizzling, not sprinkling, POORING, and I swear the weather dropped 10 degrees, when I got there it was 50 degrees and when I left it was like 40 degrees.  But I got out of the car, went and sat with all the other football moms and dads and felt human again, I didn’t last very long, but I did it.  Having Transverse Myelitis is very uncomfortable, it’s a very painful disease, lots of nerve pain, I can’t explain what it feels like, kind of like firecrackers going off inside my legs when it’s cold out.  Not fun, but I was one of the chosen ones for this lovely disease and there isn’t a cure so I just need to live, try to do normal things so I feel normal.  It’s hard to feel normal when 99 out of 100 places I go I am the only one in a wheelchair and I swear everyone stares at me, maybe it’s because they are curious, maybe they feel pity, most little kids are scared of me, and some might think that I am faking, who knows??  THe fact is, I made it, I didn’t melt and I didn’t freeze, I was with all the other moms right where I wanted to be.  Until next time 🙂

“The fact is, that to do anything in the world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in and scramble through as well as we can.”
Robert Cushing