Hi everyone,

I primarily post on the Spinal Cord Disorders board, but would like to hold some discussion about the experiences of children who grew up with disabilities.

I spent a lot of time at various Shriner's Hospitals while growing up. My memories of those days are filled with every possible human emotion imaginable, some very intense. I just think it would be great to exchange experiences with someone who has gone through something similar.

Thanks!......franjo

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; various developmental abnormalities of the spine.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989

hi,

i was born wh cp&went through endless surgies&pt.

Hi Andrea!!

I was beginning to wonder if I was the only one in the world with a congenital disability! http://www.healthboards.com/ubb/biggrin.gif It's nice to feel special, but I don't think I'm THAT special!

Thanks for replying to my post. I'm sorry that you've had to have so many surgeries. I hope they were successful ones. I'm scheduled to have a tethered spinal cord release on June 5 (my second). All in all, I've had about 16 surgeries. Not all of them were related to my disability though.

If you are like me, a lot of your childhood was spent counting the little dots on the ceiling tiles, post-op. I can still see those d*%# tiles in my mind!!! I missed most of my 4th grade, but was able to keep up with home tutoring. Shriner's has school in hospital, which made all the difference.

There was a lot of teasing to overcome too. I don't know how old you are, but in the 60's children weren't as politcally correct as, I hope, they are now. Most of my energies were spent trying to be as normal as possible. I would sneak regular shoes to school, put the old clunky orthos and my Milwaukee brace in my locker, then continue through the day until time to go home. Then I would don all the paraphenilia once more and return home....no one the wiser. I was such a rebel!!

Also, back then, at least in my experience, doctors did not seem to think that the young patients needed to be apprised of what was in store for them. I often had to glean information from what I'd overhear, and even then, most of that I didn't really understand. For instance, at age 10 I had my first myleogram. They gave me a sedative injection, whisked me from Shriner's to Barnes hospital in St. Louis for the procedure. No one told me what was happening, and I thought my parents were not aware of what they were going to do to me. I thought I was going to have surgery and my parents didn't even know. So, I fought that shot with everything I had...I was determined to stay awake....I really felt as if I was being kidnapped. I get angry when I think of some of these experiences. No one even bothered to tell me what was going to happen to me! I hope it's different for children today, because when you're a child, and left to your own frightened imagination, the images conjured up are often more frightful than what is actually about to take place. But those images are very real to a scared child. What were they thinking?!??!! GEEEEZ!

I hope this finds you well today. And I do hope you'll post here again. Take Care....

~Teri

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 and 57 degrees); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; various developmental abnormalities of the spine.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989

hi!
a sense of humor, i like it! im sorry bout yr surgeries... good luck wh the upcoming one i had 10.. yuck&yes they were successful&yes i was teased upon being mainstreamed at 71/2(was born in 71&yes i know what u mean about ppl not bein aware. my motto is this: teach awareness at an early age so they can teach their parents!

Andrea,

WOW! I just noticed the number of posts you have under your belt. I can see myself someday having that many...I have grown to really value these boards.

I do like your motto. I have a 3 yr. old son who, I believe, will benefit from having a mother with disabilities. Already he is very protective of my cane when other children want to hold it. On the other hand, it's difficult to be everything I'd like to be for him, as a mother. I do have my moments of "Woe is me!" But we deal. And improvise. And modify, modify, modify. He's great PT too! http://www.healthboards.com/ubb/biggrin.gif There is definitely more joy there than woe.

I'm also sure to prepare him for doctor visits, etc. I start telling him two days before an appt. what he can expect to happen, and where I'll be. I don't ever want for him to feel that sense of confusion and abandonment that I went through. I guess that's one good thing that came out of my experience.

On the more positive side, I cherish the experiences I had with the other children while in hospital. It was like one big family, and it was truly heartbreaking to say good-bye and go home. I lived, side by side, with children from all over the world and with a wide range of disabilities, religions, races, and backgrounds. No school could ever match that kind of education. I think of them still, and wonder how and where they are.

I was witness to my best hospital buddy, Melva, take the very first steps of her life at age 13. I'll never forget her beautiful, beaming face...freckles all around.

Anyway, enough rambling. Were most of your surgeries done in NY? My next one will be in Chicago. Great city. But most importantly, I feel like I'll be in great hands. God's hands first, then the surgeon's. Thanks for the good wishes toward my surgery. The older I get, the scardier I get! http://www.healthboards.com/ubb/biggrin.gif Sometimes I wonder if knowledge really IS power.

Hope your day is blessed. Take Care...

~Teri

hi teri! http://www.healthboards.com/ubb/smile.gif

how are ya today? i must say i am truly moved by what youve said. i think its wonderful that you are taking steps toward educating your child. i truly believe that is soooo important b/c seriously, i watch adults behavior,& i swear its mind blowing! i know a 50 yr old married family man(dr) who is completely clueless about this stuff&his attitudes need changin! its a real experience talkin to him. its really funny thoough b/c@ the same time, he has a young dr working with him who supposeedly knew nothin til he started treatin me(i educated him through his natural curiosity) but i didnt have to say much, it turns out, his instincts are incredible! im like, dont knock yourself dude, ya got it goin on! http://www.healthboards.com/ubb/smile.gif

my surgeries were all done in ny, and at a very early age. i was done by age 8. thank god.

god bless you&your child http://www.healthboards.com/ubb/smile.gif

Andrea,

I wish I could respond adequately to your post right now, but my husband is chomping at the bit to go camping (thunderstorms forecast for all weekend! http://www.healthboards.com/ubb/rolleyes.gif ) I am an unwilling camper this trip. I'll post when I get back. Take care, and God bless....

~Teri

Hi again Teri!

Even though I didn't grow up with disabilities as you did, I just had to pop in and tell you a story about 'kids learning to accept disabilities'. My son is now 20, and I raised him alone. It was very important for me to teach him to be accepting of people 'no matter waht they looked like'. His grandma had to use a cane and he learned as soon as he could walk to help grandma and hold her purse when she got in/out of the car.

When Elliot (my son) was 2-1/2 he got a lazy eye and had to wear a patch....then glasses.....then the other eye got lazy and we had to switch the patch back and forth....then they put 'prisms' on his glasses....it seemed to go on forever. In the summer, the stick on eye patehes made him sweat too much underneath, so he wore the black 'pirate patch'. They finally did surgery and his eyes have been perfect since.

But, one day shortly after he had had his surgery we were driving on the highway and came to a red light. No iar conditioning in the car and it was a hot summer day so the car windows were down. The car that stopped next to us (on Elliot's side of the car) had a driver who looked like he used to be a motorcycle gang member....but had lost an arm, and he had the stump of his left arm resting on his open window ledge. A very scarey looking guy........

While sitting at the red light, Elliot looked over at him and then said, "MOM! Look at that guy!" I was mortified! Told Elliot not to stare.......hoped the light would change before he pissed this guy off and sent him into road rage. Elliot kept pointing to the guy and saying, "look mom!" (just the thing that I had tried to teach him NOT to do!) Just before the light changed, the guy noticed Elliot and looked over, he also had a black patch on one eye, and smiled and waved at Elliot. Elliot said, "look mom! He's just like ME!"

kids. Sometimes they 'get it' better than we do! hehe

love and prayers,

aj in Oregon



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~ 48 year old female; currently self-employed as an artist/designer/woodcrafter.
~ Previously worked in the restaurant biz for 27 years (not so good for someone with a bad back!)
~ Hereditary and congenital scoliosis, but it never caused any problems until I was 40+ years old.
~ 76 degree curvature had increased 2 degrees in two years 1999-2001; indicating surgery was necessary.
~ Surgery in March of 2001.
~ Fusion and insturmentation of C7 - T9.
~ Fourth rib removed; 5th and 6th rib cut back halfway; removed ribs were morselized and used for the grafting, plus additional bone harvested from hip.
~ After tthe hardware was attached, spine was straigntened 20+ degrees.
~ 2 weeks in the hospital.
~ Brace worn for five months. Bone growth stimulator device also worn several hours per day.
~ PT 5 mos. after surgery caused increased pain.
~ Follow-up surgery to remove hardware scheduled for Feb. 2002.
~ Round 2 of PT 2 mos. after hardware removal.
~ Medically released to return to full activity in July 2002.
~ Increased pain upon returning to regular work schedule.
~ Round 3 of PT in April/May 2003; continually increasing pain.

Hi Andrea and AJ,

My camping trip seems to have started a flare-up, although I can't think of what might've caused it. I barely did anything. I had to miss my uncle's funeral today, and I'll probably have to cancel an eye exam tomorrow. Maybe not. Our bodies are often like wrapped gifts, aren't they? We never really know what's inside them until we put our feet on the floor in the morning! http://www.healthboards.com/ubb/biggrin.gif

Yes, I do believe that kids get it better than some adults. Often, a child, out of normal curiosity, will come up to me in a store and ask me about my cane (kids are facinated with my cane). I'm only too happy to welcome the opportunity to give the child a positive experience with someone with a disability, and am glad to answer any questions. But then, here comes the parent, whisking the confused child away, as if I'd grown horns! The parent is obviously embarassed by the child's honesty, but what has the child learned? "Disability is something we don't approach and don't talk about". What a disservice to that child, and it never fails to break my heart.

Here's my favorite. While visiting my MIL's church down south, her preacher, after asking about my condition, stammered and seemed uncomfortable, then said something like, "I know a little girl down in Hollow's Corner.....and...uh...why she's...uh...she's crippled too!" I wasn't quite sure how to respond: "Oh, well, I must surely know her then?" Or, "Oh, yes, there's only two of us, you know. And she must be the other one?" It was all so odd. Yeah, I'll talk to a kid about it anyday! http://www.healthboards.com/ubb/smile.gif They don't get so freaked out. But, in all fairness, there are wonderful adults who DO get it. And, I'm guessing that they're the majority. At least I hope so.

AJ~ Great story about your son and the rough biker guy. It just exemplifies how their perspective is different. He was looking for commonalities, while we would've assumed he was looking at the differences. I'll bet he's a cool kid. Glad to know his problems have improved since.

Until later~

Teri

Originally posted by franjo:
Hi Andrea and AJ,

My camping trip seems to have started a flare-up, although I can't think of what might've caused it. I barely did anything. I had to miss my uncle's funeral today, and I'll probably have to cancel an eye exam tomorrow. Maybe not. Our bodies are often like wrapped gifts, aren't they? We never really know what's inside them until we put our feet on the floor in the morning! http://www.healthboards.com/ubb/biggrin.gif

Yes, I do believe that kids get it better than some adults. Often, a child, out of normal curiosity, will come up to me in a store and ask me about my cane (kids are facinated with my cane). I'm only too happy to welcome the opportunity to give the child a positive experience with someone with a disability, and am glad to answer any questions. But then, here comes the parent, whisking the confused child away, as if I'd grown horns! The parent is obviously embarassed by the child's honesty, but what has the child learned? "Disability is something we don't approach and don't talk about". What a disservice to that child, and it never fails to break my heart.

Here's my favorite. While visiting my MIL's church down south, her preacher, after asking about my condition, stammered and seemed uncomfortable, then said something like, "I know a little girl down in Hollow's Corner.....and...uh...why she's...uh...she's crippled too!" I wasn't quite sure how to respond: "Oh, well, I must surely know her then?" Or, "Oh, yes, there's only two of us, you know. And she must be the other one?" It was all so odd. Yeah, I'll talk to a kid about it anyday! http://www.healthboards.com/ubb/smile.gif They don't get so freaked out. But, in all fairness, there are wonderful adults who DO get it. And, I'm guessing that they're the majority. At least I hope so.

AJ~ Great story about your son and the rough biker guy. It just exemplifies how their perspective is different. He was looking for commonalities, while we would've assumed he was looking at the differences. I'll bet he's a cool kid. Glad to know his problems have improved since.

Until later~

Teri

hi fran! http://www.healthboards.com/ubb/smile.gif so sorry about the flare up http://www.healthboards.com/ubb/frown.gif i couldnt agree more! as if thats isnt ever bad enough, where do you think their parents learn their attitudes? from THEIR parents! thats why i think its so important to get the kids while they are still young. have a good day!

Hey Teri-

Sorry to hear about your current flare up. I've been thinking about you since I read you have another surgery scheduled for eary June, the same day as my follow-up for my last eye surgery I think. Reading your story above made me laugh because my sister and I have a three legged dog. It never fails that when we walk him some child comes running up and say "Look he only has three legs!" at which point, the parents go SHHHHHHHHHHH! grab the kid and drag him off. I've never really quite understood, I mean, the dog could care less, and I would rather talk to the kid and let them know that he is just like any other dog etc. So human or animal, adults just don't seem to be abe to deal with it.

I've beem wanting to post to you because I have a bit of advice for you for your upcoming surgery! I don't know if I told you, but my first eye surgery didn't go well last July with a lot of post-op pain and vommiting etc. I was a very ummmm, assertive (read here utter pain in the butt to the anesthesia department)patient this time and the surgery in March went well. However, in my zeal to be pain free, I scared the nurses who I heard talking about me in PACU saying "She got A LOT of drugs" so they decided because of all the morphine I got during and after surgery, I had to pee before they would discharge me. So I really didn't need to, but I was like hey, whatever, you want me to pee, I'll pee. So the nurse says the bathroom is over there, pointing across the recovery room, and I reach down throw back the covers and stand up only to discover that while I went in to surgery with not one but two gowns on, they apparently unsnapped everything while they were drapping me (why they had to for EYE surgery I don't know) and I was standing in the recovery room, the big open recovery room, nekkid as the day I was born, as all of the gowns pooled around my ankles! In case that wasn't bad enough, I thought it was funny and started laughing, thus drawing attention to myself. So now the nurse is trying to redress me and can't figure out what snap goes where, and here comes the anesthesiologist around the corner to check on me! I think there were maybe one or two people in the outpatient surgery department who missed "the show".

What can I say? It's not every day I get to cheer up so many sick people so quickly! So remember to check and make sure you aren't naked before your first solo trip to the bathroom after surgery OK? (Thats the advice since I know nothing about back surgery, and everything about "flashing" people apparently)

Hope you feel better soon.

[This message has been edited by Shaman (edited 05-13-2003).]

Shaman~

That's hilarious...and advice well-taken, no matter what type of surgery one has! And your three-legged dog story was enlightening....I had no idea these things crossed species lines!

I think that sometimes people think that by drawing attention to a disability, the person in question will be painfully reminded of their disability. I would venture to say that most people with disabilities are never RE-minded, but rather 'minded' to begin with. So an innocent question from a child is not going to send us deeper into the depths of depression. I keep forgetting that there are some people who really haven't had a personal experience with someone with a disability...it's foreign to them. I do believe that most of the reactions we've been talking about originate in fear. And I'm not sure how much of that, if any, will ever change significantly.

But what Andrea said is so true....it starts with the children, but here's the crux....who's to teach them? I believe the answer is us, those of us with disabilities. I approach my interactions with children very seriously, and hope to leave them with a sense that they HAVE had a positive, personal experience with someone with a disability, so the next time they meet someone who is different, they might feel more confident in interacting. I feel that those with disabilities have a responsibility in that.

There I go again! http://www.healthboards.com/ubb/smile.gif It's been great discussing this with Y'all. And Shaman, thanks for your thoughts toward my upcoming surgery. You've blessed me today. Take Care and God Keep...

~Teri

hey teri! http://www.healthboards.com/ubb/smile.gif

ofcourse us! http://www.healthboards.com/ubb/biggrin.gif isnt experience the best teacher?

Andrea~

How are you today? Are you sure we're not related? We seem to share a like-mindedness! http://www.healthboards.com/ubb/smile.gif I agree that experience and awareness is key. The ADA has helped somewhat toward that end...increased exposure of the general populus to those with disabilities. But that's not the whole solution either. Attitudes cannot be legislated, and are slow to change. Baby steps...baby steps.

Hey Andrea....you and me girl....Let's change the world! http://www.healthboards.com/ubb/biggrin.gif

~Teri

wassup fran? lol girl.... youre funny. http://www.healthboards.com/ubb/smile.gif you&me is right! http://www.healthboards.com/ubb/biggrin.gif

im off to pt.... ick!

have a good one http://www.healthboards.com/ubb/smile.gif

Andrea~

How was the IPT? (Icky PT) http://www.healthboards.com/ubb/smile.gif Do you go daily? I'm sure it gets wearisome at times. I hope I'll get lined up with PT after this surgery. My HMO won't approve it now, but maybe my NS will help me push for it. I'd probably have to start with aquatherapy. I've lost quite a bit of function in the one leg, can't even wiggle my toes anymore, so I don't know how much I'll be able to do. A little afraid to exercise on my own, because of the tethered cord. I have this mental image of it snapping like a rubber band, although my NS has assured me that the cord is tougher than that. (God help me, but I don't believe him! http://www.healthboards.com/ubb/biggrin.gif )

I hope you have a great Memorial Day weekend. Any plans? My husband is in Florida attending a funeral, so I think Noah and I will go to the drive-in this weekend and see a kiddy show. He's a great date, although I've noticed that he never pays....I'll have to have a talk with him about that! http://www.healthboards.com/ubb/smile.gif

Take Care,

Teri

hi teri! http://www.healthboards.com/ubb/smile.gif

LOL! sorry about your leg. sounds like youll need pt. as for me, i suffer panic disorder(not a good combo wh cp!)& sincei get anxious goin to pt, i ended up havin a panic attack as she attempted to work on me. i go bk today, so im hopin things will be better. i go 3x weekly. have a good day http://www.healthboards.com/ubb/smile.gif

Andrea~

God Bless you over and over again, then once more. http://www.healthboards.com/ubb/heart.gif I wish I had some sage advice for you. Do you take anything for the panic? I'm assuming you do. I've only had one panic attack in my life, and that was recent, while in an MRI. It totally blind-sided me, as I've had MRI's before...no problem. My heart goes out to anyone who has to endure this on a continual basis. I know I don't ever want to revisit it again. The most overwhelming, intense feeling imaginable. I thought I was going to disassemble the entire contraption from the inside out!

I hope PT goes better for you the next time. Try thinking of the therapist in his or her underwear. Well...okay...wait a minute...that could instigate a panic attack in itself I suppose! Never mind!

Thinking of you,

~Teri

[This message has been edited by franjo (edited 05-16-2003).]

theres that sense of humor! gotta love it! http://www.healthboards.com/ubb/smile.gif

right back atcha hon http://www.healthboards.com/ubb/heart.gif

i wish i could say it went better, but it didnt. i had a bad attack& am still not recovered. i cant breathe&im really dizzy&tired. hope yre havin a good day. ps: yes on the meds, but not at pt.

Andrea~

Do you mean that you can't take the meds during PT? If so, I wonder why? After reading what you go through, I think "ICK" is an understatement. I prayed real hard for you last night. I wish there was more I could do. But sometimes prayer is quite enough. I don't claim to have any special "direct lines" with the Big Guy, but I know He hears even me. And I know that He ALWAYS answers one way or another. Sometimes a feller just knows what he knows, what he knows. http://www.healthboards.com/ubb/smile.gif

Continuing in prayer http://www.healthboards.com/ubb/heart.gif

~Teri

awwwwwww that is so sweet thank you!(((((hugs http://www.healthboards.com/ubb/heart.gif )))))))

yeah, i dont tsake meds b/f pt cuz they kinda"knock me" if u get what i mean& i may not be able to do what they ask so.....

its hard. i think the hardest thing is knowing its often a different trigger each time. yesterday i think it was a combo of bein forced in a small space wh a (small) "audience" she had me in the exercise room when it happened. i was soooooo embarassed!

thamks for listening& prayin. it helps lots http://www.healthboards.com/ubb/smile.gif im glad i met you. im here 4 u too k? btw: the after effects of the attack are gone today.

Andrea~

I'm happy that the after effects of your attack are history now. I think I can relate somewhat to the audience thing. I recently participated in a "gait study" research in Chicago. There were only around 3 people there, all female, but strangers nonetheless. It was much more uncomfortable for me than I expected. I know that doesn't compare to a panic attack, but I can definitely see how it could bring one on, if one were prone to them.

Could you possibly take only a portion of your regular dose for your panic attacks? Just to take the edge off, yet not throw you for a loop? Or maybe there's another med out there that wouldn't compromise the PT as much? Just trying to brainstorm here.

Are there sessions where you don't have any panic? If so, I wonder what was it about those times that made the difference? Maybe that could generate more answers than trying to nail down those pesky "floating triggers".

I'm sure, considering your history, that you must have certain fears associated with your lifelong PT. Being a child with a disability can be a frightening time. I believe that we can reclaim some of that back again, and not be so afraid. I pray that the next time you feel panic rise, that God will gently place his thumb print on your heart and give you calm. He sees, He knows what you endure.

Hoping you'll have a great weekend. Raining here. Blah. But I'll find some trouble to get into http://www.healthboards.com/ubb/biggrin.gif!

Love,

~Teri

you are SUCH a sweetie! thanks for trying to help darlin http://www.healthboards.com/ubb/smile.gif

im hypersensitive rto meds.. everything makes me sleepy. as for the panic, ive only been a few times which is also part of the prob(and yes i believe yre on to somethin about natural fear to pt from childhood) i think part of it is i dnt normally take easily to new ppl/situations easily& im still tryin to get used to her.

thanls 4 theprayers doll http://www.healthboards.com/ubb/smile.gif heres sendin ya some sunshine from ny http://www.healthboards.com/ubb/smile.gif

Andrea~

That NY sunshine must've stopped at a bar along the way to Indiana http://www.healthboards.com/ubb/biggrin.gif! Still pretty dreary here, but the thought surely brightened my day.

Went shopping today for the things I'll be needing for the hospital. You know, boring things like toothpaste. Not too many things are as boring as buying toothpaste. I need to drag out my old crutches and get them 'road ready'. I'm sure the rubberized padding has dry rot by now! I suppose I could look on that as a good thing....haven't needed them in years.

A lot to think about and prepare for, but I seem to want to stay in this 'ignorance is bliss' stage of things. I don't want to feel the "looming" of it, if you know what I mean. And I'm guessing you do. How's that for being psychic? http://www.healthboards.com/ubb/biggrin.gif

When is your next PT? I'll be thinking of you. Remember: therapist in underwear.....With little pictures of Elvis all over them. http://www.healthboards.com/ubb/biggrin.gif

Bless You Big~

Teri

rofl!

bless your heart! you have soooo much to deal wh yrself& you still make time to think of me. im sorry you didnt get sunshine yet. http://www.healthboards.com/ubb/frown.gif (sendin more your way..) i go to pt today, so we will see. thanks again sweetie. ill be prayin for ya when your time comes as well http://www.healthboards.com/ubb/smile.gif

Andrea~

How'd it go yesterday? Thinking 'bout cha!

http://www.healthboards.com/ubb/heart.gif Teri

aaaaaaaah! hello my angel, how are ya? im distraught@the moment as i need new orthodics which are VERY costly,& my ins. isnt reimbursing me til i pay 400 deductable which i dont have& the braves cost 600-800 dollars& even at that, i dont get reimbursed 20%.

pt went well up to the point where the other therapist opened the door w/o warning& that caused an attack. http://www.healthboards.com/ubb/frown.gif i go bk again tomm. how bout you sweeetie?

Andrea~

I'm wondering, do they make any attempt to control the PT environment for you? It sounds like they need to provide an atmosphere that is less stressful for you. Or are they oblivious? I don't know a whole lot about CP, but a good friend of mine has a 25 yr. old son who has CP, and I know from being around him that he has a low tolerance for over-stimulation, the nature of the beast, I'd guess. It just seems to me that it would benefit the entire PT goal if they modified the environment for you a little.

Is it possible for someone who loves and knows you to be present at these sessions? Would that make a difference?

About the orthotics: Maybe there's an organization that would supplement in a situation like yours. Call or write some churches, or even a fraternal organization like the Elks? That's just a thought.

The way I see it, financing your treatment shouldn't be a roadblock to receiving treatment. In a perfect world. http://www.healthboards.com/ubb/rolleyes.gif Surely, there's someone out there who could help. You've got enough on your plate and shouldn't be stressed about the money end of things too. I assume you have Medicare?

I'm doing fine, thank you for asking. Trying not to catch my son's cold before this surgery....I keep forgetting and kiss him right on the mouth! What can I say? I can't help myself!

Then there's the housework to get done before the surgery, so I won't have to sit and stare at the cobwebs in the corners when I return. It's difficult for me to do the things I used to do around here, so I'm trying to take it in increments. My sister will be coming over tomorrow to help. She's the best. Don't know what I'd do without her. We tease her that whenever she walks into a room, one can hear the theme music to Superman in the background! TaDah! Super Sister! She's one of those who seem to know what you need before you even knew you needed it. They don't come much better than her. I'm truly blessed.

My leg has started to "drop out" from under me these past two weeks. So I seem to be spending a lot of time genuflecting, and I'm not Catholic! http://www.healthboards.com/ubb/smile.gif But I suppose it wouldn't hurt a bit to pray while I'm down there! Why waste a perfect opportunity? http://www.healthboards.com/ubb/biggrin.gif

Again, I hope for a good experience for you in PT tomorrow. Ask them to place a "Do Not Disturb" sign on the door. They really need to be aware of how it is for those with CP and try to keep the environment controlled. I wouldn't think that would be too hard for them to do. A little more attention to details, that's all. Have you tried relaxation techniques like breathing exercises, meditation, etc.? This was something suggested by my friend I mentioned earlier.

Take Care my friend....I'm putting a big ol' hex on all those boogey bears right now.

Love,

~Teri

youre so sweet!

howd ya get so smart about this?!( i guess from being around your friend&observing her son which counts for alot b/c although my chiro gets teased for bein called "the anxiety expert" he really does seem to know what makes me tick& i happen to know it all comes from his observing me & seeing what bothers me&what doesnt& just finding ways to make it better ya know?

the pt place is very small&privately owned by the 2 therapists& yes the environment is controlled to a certain extent. they put me in what i call a real room with a door which is in the back(im guessing bc of the way i am) whereas the rest of the patient area is cubby like spaces wh curtains(no privacy) im very interested in knowing her thoughts as to what the cause was last night cuz i dont think she knows but i wanna know her thoughts cuz apparently, last night we were talking about it in general& she commented she thinks she understands so i wanna see if she really does. i really dont have anyone i can take like that(my sis takes care of her twins@ night)

Tina (the pt) is really really sweeet about it. i have no complaints. shes still learning what makes me tick so to speak& i know that takes time. i will say this: shes such a calm person& always seems to remain so during an atttack. the only thing that seems to need work is the way she gives in to an attack way too easily( she knows not to touch me during an attack& stops immediately if contact was prev. occuring which is good, but usually when its over, she kinda tends to think ive had enough&is like ok, youre done for today..... when really i wasnt done cuz like last night, she was gettin ready to do a part. stretch on my legs when Lori barged in& then that was it so it looks like im gonna have to tell her not to give in to it like that."waitiing" is one thing but ending treatment is another. i seriously wanna know what she thinks about the whole situation.

sorry youve been fallin http://www.healthboards.com/ubb/frown.gif take it easy. i didnt mean 2 babble. http://www.healthboards.com/ubb/smile.gif

love ya!

Andrea~

Sounds like you have a thoughtful therapist. That's got to be in your favor. And since she's new to you, I'm sure it will just take time, like you said, to get used to each other's ways. (I've been married for 13 yrs. and my husband is STILL trying to get used to mine!) http://www.healthboards.com/ubb/biggrin.gif
And I agree with you wholeheartedly that sharing ideas and thoughts between you and the therapist will be crucial in working through some of the problems.

Twins!? You just gotta love that! Double joy all around. I'm certain that your sis has her hands full though....one is about all I can deal with. Sometimes I think he morphs into two though! http://www.healthboards.com/ubb/smile.gif He keeps me hopping.

I'll be checking back in here tomorrow and see how it went. Big Blessings,

~Teri

aww thank you hon. yea she really is kind. id be shocked if she knew her sis caused trhe attack but im sure somethin can be worked out where her trips are limited.

the twins are simply adorable!!!!!! (both sets!)

good morning angel!

how are ya today? im in pain, but im hangin in. have a great day!

Andrea~

So sorry you're in pain today. I take it that you're back from PT already? How'd it go otherwise?

I wanted to get in here and post earlier, but my sister was here helping with housework. It's very difficult for me to let people do things like that for me. I've never needed that kind of help before, so I couldn't just sit and watch her clean my house...I had to do something too....little things, but it makes me feel better to contribute to her efforts.

So, your sister has TWO set of twins?! All I can say is....WOW! http://www.healthboards.com/ubb/wow.gif She almost has enough to start her own basketball team!

Hope your pain lessens soon. Pain is an ugly old man with bad breath. I hope he takes the hint and gets out of your face. What a jerk!

Hang in there, girl. In my prayers, as always.

Love,

~Teri

LOL! you always know how to cheer me up. http://www.healthboards.com/ubb/smile.gif thanks hon. yes, im home from pt. today was my early day. it went alright for the most part. i did have 1 attack. she was really rippin into my muscles todsy. at one point i thought i was gonna have another attack bc it hurt so bad i was barely able to breathe. shes sweet, but shes still learnin about the attacks like not to touch me when im havin 1(she 4got today) so that didnt didnt make things any easier.

im glad yre sis can help... i know its hard when you cant do stuff. im findin that more&more every day. sigh..

yes, there are two sets of twins in my family, but 1 belongs to another sis. http://www.healthboards.com/ubb/smile.gif

hope yre havin a good day hon http://www.healthboards.com/ubb/smile.gif

((((((hugs)))))

good morning sweetheart!

how are you today? i am feeling very tired& am hurting.

Andrea~

I'm doing okay, thanks. Overdid it yesterday, but with a little babying, I'll be fine. Broke down and took some pain meds last night, hadn't had to do that for awhile.

Do you get a break from PT today? Rest will probably help reduce your pain. I'll pray for that.

And, hey!! The sunshine finally made it here! Thanks! I guess it took the scenic route! http://www.healthboards.com/ubb/smile.gif

Hoping for better days,

Love, Teri

awww im so sorry hon((((hugs))))) you get some rest too ok? yes i get a pt break today...(i go tomm) feel better hon. im doin a little better, thanks.

good mornin teri!

how ya feelin? im in agony http://www.healthboards.com/ubb/frown.gif i have pt&a dr appt topday. yuck!

Oh Andrea,

Are you in agony from pain? Or because of the heavy, no-fun schedule today? I hope everything went well. By now, it's over. Make sure you squeeze something fun into the day.

I'm still in some pain, but nothing that I want to medicate. I've been told that one should medicate for pain BEFORE the pain gets bad, it's most effective if done that way. But, the thing is, I never know when it's going to rear its ugly head. Sometimes I do know, when I've done something specific that I shouldn't have, but other times it just shows up, like an uninvited guest (you know, the one with the bad breath) I pray that this surgery takes care of that, at the very least.

Well, let me know how it all went today. And in the meantime, I'll tell you what someone else on the Spinal Board always says:

Touch your bellybutton and smile! http://www.healthboards.com/ubb/smile.gif

http://www.healthboards.com/ubb/heart.gif Teri

hehe http://www.healthboards.com/ubb/smile.gif

i knowwhat ya mean bout pain. im sorry yr hurtin. yes im in physical pain. and yesi had fun... i had the twins here all day so i had a great time! that is til my appts. wasnt at foot dr long enough to get anxious(tho i was anxious b/f it)& i had a really bad attack@pt bcif i cant relax, the artack is worse& i cant relax wh her touchin me(she was touchin me when the attack started& she didnt let up til i squirmed long& hard enough that she got the hint to remove her hand while i was like that.) i had to..... cuz when that happens, i cant talk, but i asked her to remember not to touch me from now on when im like that after i had the attack when i was able to speak. have a good night swetie!