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Hi just thought i would check in and say i had a very hard weekend i thought it was going to be good and me and family went out looking for stuff for our soon to be new grandbaby and first wow sat killed me of course so i got home and all i could do is cry and sleep it was not good then of course i was up most of the night last night oh boy sorry all i did was go on and on about all bad stuff sorry but feels good to get it out and this weekend one of my family members said if you just keep going you will be fine i wanted to kill him!!! but i just cried and went to sleep hope the rest had better weekends
big hugs

Hi everybody =D
I finally got thru n read all ur posts here. N I must say wow, that's incredible - all ur stories, that is. Thank u all 4 sharing ur pains w/ me. N now I'll attempt 2 share my side w/ u all. Ah... gather thoughts... dk where/how 2 begin. @Ailsa (hope u don't mind me call u by ur name)- I can relate on the aloneneess feeling.. tho I do not have a chronic illness, I have a permanent disability that affected my whole life - I'm classified in "med terms" as a C5-7 quadriplegic (I'm wheelchair-bound), which meant my spinal cord had been injured. Due 2 what I have no idea (details r pretty sketchy - I was only 2yrs old att). I'm 34 now btw jus turned few days ago. It hap in VN (Vietnam), my birthplace... I woke up w/ a cricked neck but was still able 2 walk n move. Att my parents were very poor n so was the country - no meds, or good docs around. My mom n relatives dk what's wrong with me n try 2 heal me w/ oils n herbal remedies n whatnot, lol. They did everything - include praying, asking buddha monk blessing, visit a witch doc (I was forced 2 drink some kinda weird potion, yuck >< o.o) - it didn't work n I got sicker... Started 2 run high fever, almost on the brink of death... But then fortunately VERY fortunately, my folks n I were able 2 migrate over 2 HK (Hong Kong) 2 stay til everything check out w/ immigration 2 go 2 the States. Meanwhile, I was checked promptly into the hospital there. A team of docs examined me - they told my pars I got #2 broken neck bone n needed operate asap. I think I had #2 operations done on my neck also. The 1st time they tried to fused the bones together w/ some kind of plastic? Idk that's what I told.. that didn't work - fevered up again. So then 2nd time around, they went n took some bones from my hip/tailbone area to replace the #2 broken 1s. After that ordeal - yea it finally worked - I lost my body movement n all feeling from my shoulder down, my hands/fingers jus crimp up like monkey's paws literally. I wore a metal-head brace (sorta looks like a halo only not so fun 2 wear this 1 cos it screw 2 my head) to keep my head/neck straight for 6months n every wk they'd go tightened those screws to realigned my neck - imagined THAT... honestly I can vaguely remember now, tho I can never fully forget either. N the whole time I saw less n less of my pars - ofc Idk that they were trying 2 make a living n pay bills n my baby bro was born then so... I thought they abandoned me T crying T(I cried lots more then). Plus my hospital was up in the mountain region far from the main city itself, but try explain that 2 me at age 2-3yrs. But they never told me I could no longer walk no more, lol - sorta fig that thru the yrs. We stayed in HK for 1.5yr - most those time I was in hospital recovering but separated from my family. We finally made 2 the States - where docs checked me again... they confirm the HK docs about the neck bones but said it cos polio while HKdocs said it was TB... ah*sigh*. Anyways, then I went thru more rehab n underwent anoth surgery 4 my bladder ctrl cos I am 2 b going 2 reg school soon. Afterward, I guess they declared me perm disabled n r out-of-medical option 4 me - they make my pars signed some paper n release me 2 their care. As yrs gone by, I've my ups n downs - I have a weak immune system - I get real sick during winter times - always some kind of chest congestion like pneumonia. 2 b cont..... its really long n draw out - r ya sure u all wanna hear more? cos I'm not quite done yet. But jus thought post this 4 now. k gtg, cya laters <3x<3x<3x

I know... wouldn't it be just soooo nice if your husband/or loved one, would just cuddle with you, or put their arms around you and say, thank you I know you do a lot, and I know you are hurting. "I love you." Cuz, boy oh boy, I sure don't-- that is DO NOT get that here at my household. My husband believes in telling it like it is. He NEVER, I mean NEVER!!! sugar-coats anything. If I say I'm hurting really bad, he'll think in one second, and have a come-back and say, well, then you shouldn't have done the vacuuming today. or Well, then you shouldn't have grocery shopped and done all those errands. You knew when you were hurting after so-in-so store. Why didn't you just come home, when you KNEW you were hurting, then? Grrrrrrrrrrrr, GAWD!!!!!!!!! I get so damn aggravated at him. Why bother even saying anything to him. That's usually when we wind up in a fight, or just don't speak at all for awhile. I would LOVE a husband who would be sweet to me just a little bit. He doesn't have to be an a** everytime. Like today. I had to run to the vet's to get Coda some flea/tick stuff you put between her shoulders, I had to go to the dollar store for cheap stuff, THEN, I had to go to Wal-Mart Neighborhood Store, for the big stuff, like dog food, cereal, milk, stuff like that. When I came home,..... I found him SLEEPING !!!!!!!!!!!!!! OMG!!!!!!! I could have killed him right then and there!!!!! Since I walk with a cane, it is not easy to walk from the truck, to the 4 steps into the house, carrying milk, soda, etc.... I told him that's it. I cannot do this anymore!! I won't either..... 'less I have someone with me to help me. I ride in those electric chairs they have, and then I have to transfer all that stuff into a basket, cuz you can't take that out of the store, then, push the cart to the truck, load the truck, walk back to the store with cane in hand and the basket in the other to return the cart, then try and get INTO the truck. We do not have a step runner, so it's like climbing Mount Everest everytime I get into it. So, Godsbabybear, you think YOU'RE COMPLAINING????????????????? I think not. lol

You said it Alicia! Right on the head! A MEN !!!

Thank you boldie I got your booty 199/50 i am so sorry i got yucky with you i know what you mean wow i read your post and just cried of course that is all i do my hubby does that sometimes then others he can be nice but how about if you had a job we would have all the stuff we need i tried to get disability but they said no it makes me so mad so i guess it is my fault that we don't have a lot of money and stuff that just makes me feel so freaking good i get so tired of it i just want him to wrap his arms around me and say it will all be okay and it is not your fault and that he loves me no matter what i am so down i don't think i can get any lower i am so sick of the pain and all the crap that goes with it i sure hope boldie it gets better for you
soft hugs

Kay.. gonna try to address everyone. Maybe.
OG LoLo, I'm agreeing with everyone else, please finish your story! I find it so hard to try and comprehend how much you've gone though, from such a young age. >_< I'm curious as to things went on.. It's amazing that you've shared such a story though, thank you. I hope that somethings in life have taken turns to lift you up though..

Lindsy, man you have a busy busy schedule, the fact that you actually accomplish all that is just, LOL wow.

Madralyn, I'm super glad you posted about some of the stuff you go through. I mean, I dunno... I'm just happy that you shared some of your pain. I think it's a fabulous idea to have a schedule planned out even though.. a lot of the time the unexpected is most likely to happen. It's just sort of like...a base or something, in my opinion. As for your psychologist, I've found that they always say to put yourself first and.. it's true. You need to take care of yourself and your needs and your body as best ast you can so that, when a person DOES end up have such a sweet and caring heart like you do, they are capable of then helping others and taking care of their family. Also, Happy (early >_< ) Birthday~!
Thoughts and prayers to everyone. heart

Part2: My Twilight Zone
- lol, cliff-hanger, eh? dom, dom, dom... that I really wish I could go in n re-script n/or edit this story tho XP. Anyways, cont. from quote:

Yes so excess chest congestion would land me in hospital quite often. Once at age 10 or so, in the summertime - it gets very hot here in TX n a/c broke att -.-, I was laying in my pars room 2 cool off (they have the mini a/c - the 1 where u place in window - on) there. Again... Idk what hap? but I woke up IN the hospital. All I know att was my tongue was all sore n hurt n I'm hooked-up 2 a bunch of wires. I was told I had a seizure n unconsciously bit my tongue. My mom fill me in on all the details leading 2 the event - my cuz that was living w/ us att found me unconscious. He called 911 - idk but I was flew in by helicopter instead of ambulance... no memory any of it. This jus hap out-of-blue jus THAT once time, thank "Buddha/God" (btw I'm Buddhist but not strictly religious, if u don't understand what I mean pm me - I'll explain further) 4 that - it really scared everybody >.<. Ok, so y'all prolly wondered - how I function n perform certain tasks n such.. @Boldie - no my bro was not affected, nor was my #2 sis that was born here after. These r NON-functions: Dressing - need assist, Eating - need 2 b fed, Brush teeth/hair - same, Bathing - same, Restroom - pm me if u want details. I'm pretty much like a very fragile plastic doll - I'm pretty thin - only weight 50+/- lb since I've grown. I'm not on any special diet or meds... I eat but have a very small appetite. Thru the yrs, my body grow but not fully grow as avg ppl does. I've develop a scoliosis - that's a curvature of the spine. N a dislocated hip - that was bcos I hafta turn 2 my left-side 2 do school work - now can't do that no more. I used 2 b abled 2 write on my own - I used my palm n face 2 hold the pen/pencil. N pressure sores, that's when my skin breakdown from sitting on wheelchair too long. That hap occasionally - in fact, hap 2 b right now I'm trying 2 heal a pressure sore - which isn't easy 2 get rid of >.<. It's been since May... n still hasn't healed up good yet. I practically been bed-ridden the majority of the time I'd develop this sore. Pain? only when I sit-up, it was worse in May - then when major I mean MAJOR sweat bands would stream down my face w/in secs of sitting up. Now I could sit-up a few hrs only on wkends. Physical pains - I know don't have much of (except illness n pressure sores n the monthly thing that all gals goes thru - yup me 2) cos I'm paralyzed/numb/no feelings from shoulder down. Mental/Emo pains - I don't need psyche doc 2 fig this out... I dare say I'm scarred 4 life. With that line, I'll end here n pickup tomo - LOL, tune-in next time on Part3: My Twilight Zone .