02-17-2010, 04:16 PM | #81 | |
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God forbid I have to do something OUT of my routine. ACK! Then there are the things that are simple for most. Cooking for example. I tend to start fires. Remembering to rinse the conditioner out of my hair BEFORE I get out of the shower. Not using Benadryl cream for toothpaste. Taking the plastic cover OFF my razor before shaving. I'm a laugh a minute. BUT I've learned to tell the guy I'm asking for the aisle oranges are on that I am disabled the first time around. Then we can laugh at me together the fifth time I ask. Ha! |
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02-17-2010, 09:48 PM | #82 |
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Adele,
You know what, I used Rosie's hairspray for deod. today. My underarm hairs had no idea of what was going on. And brushing my teeth with Benedryl is typical in my house. We just go with the flow here. As for my routines, I have to stay with them. If I go off my routines, I have more anxiety than Mt. Everest. Oh, yeah, I just go with the flow. I just wish society was more compassionate towards folks like us here in this thread. It seems that society is going backyards instead of forewards. And the lack of compassion is growing each day. Look at handicapped parking spots. That is just a nightmare. So many are willing to start a fight over parking spots. How much more petty can we get than that? |
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02-18-2010, 04:20 PM | #83 |
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I laugh at myself a lot for the same reason Mr.Day dose,cause if I dont they will, being profoundly deff on one hand is a blessing and on the other a royal pain in the ass.I have learned to deal with the hearing world far better than it has with me.Acctually not hearing other peoples bs is a good thing,with my aids on its way to much to process so lots of times I dont have them on.G-d help me when the vertago hits and im like a saterday night drunk.Since I quit rideing my balance is worse at times....then there is the stuttering that with as much therapy I have had over the years pops up now and then.All in all I just keep going on cause its the way my world is,the peeps that count are ok with it,the ones who arent..well its there prob not mine.
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02-19-2010, 10:20 PM | #84 | |
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relieved they don't have to deal with your issues.
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02-20-2010, 11:21 AM | #85 |
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Dyslexia....yep that little devil often plagues me far more than I can count.recently I have desided to go back to work on a full time basics,so I revamped my resume' with info for the last five years...well u gessd it,the person doing the redo called and ask me to either come in and read what I wrote cause it looked like pig latin to her.Letters/numbers backwards,scentences made no sence,some letters wrighten in caps in the middle of lines.I told her to chill out cause its the world of dyslexia moment.
Seriously all in all cosidering I was a very small preemie that weighed 1 pound and 14oz way back in 1947 when they didnt have all the modern medical advances of today haveing to deal with the deffness and its odd goings on as well as dyslexia with the goofy stuff it dose.Acctualy I feel blessed to have delt better with all this than ppl who dont have such issues cause it has taught me more about liveing than more able ppl do.I too hide it as best as possable cause some peeps just dont get it or care how the comments they say make me feel or anyone else who is diffrently abled. |
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03-13-2010, 12:53 PM | #86 |
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--hi guys i dont post much but i thought this issue important to me so i wanted to share. if u are like me disabled or not and depend on supplements for ur health please take action. ty
http://www.care2.com/causes/health-p...ealth-freedom/ |
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03-22-2010, 12:40 AM | #87 |
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*WARNING*RANT*WARNING*RANT*WARNING*RANT*WARNING*
a while ago i discovered, quite obliquely, that i'd been accused of "attention seeking". i was going through a challenging time and needed to talk about it...to ask questions about it...to be heard when i was afraid. i was probably more vocal than was comfortable for the audience in question. it was on my mind 24/7 and 365. the meds were always wrong or symptom control was unpredictable or things would be great for a week and then suck for a day...and then be great for a week and then suck for two weeks...it was crazy making. i asked questions of random people, asked for advice, for help, i talked about it non-stop because it damn well mattered to me that my life was changing so much, so fast, and in ways i couldnt control.
attention seeking? damn right. i would have screamed from the rooftop if it would have made something make sense or if i could have found one person who DIDNT say "it's going to be okay. dont worry. you have so much time and so much to look forward to." if one more person says "dont worry, it's going to be okay" i'm going to gut them....because guess what? it's NOT okay, and it's NOT going to get better, and thank you for caring so much but your caring does not mean that i feel differently all of a sudden. i dont wallow. i never have. but i'm scared out of my mind some days and it's not going to change unless i can sit with that fear and honor it and embrace it and let it have a damn voice and get it outside of me so that it doesnt consume who i really am. i am not the disease. i didnt stop being me when parkinson's came to live in my brain with the rest of me but i'll be damned if i'm going to pretend i'm not freaked out 8 days out of 7. attention seeking? damn fucking right i'm attention seeking. and i'm doing it honestly and in a straightforward manner and i'm trying to have a damn sense of humor about it too. i dont think i'm worse or better off than anyone else because i'm not busy comparing. i'm just trying to do things one breath at a time. if i dont do it in the same way someone else does, if i'm not nearly as gracious or half as courageous or even remotely as well adjusted as someone else then excuse the fuck out of me...because gues what? i'm not gracious and i'm not courageous and i'm not any more or less well adjusted than the next sort of human. not only am i attention seeking some days....i'm perfectly okay with life on others. depends upon the day. doesnt it with everyone? i dont think i'm special because i have parkinsons. i'm special because i'm a kick ass righteous little smart mouthed bitch and i know it (most days). attention seeking. yeah baby. i'm seeking. so pay attention. i'll return the favor any freaking day of the week because i dont expect you to want any less than what we all want...a witness to your life and someone to hear your voice. everybody wants that. EVERYBODY |
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03-22-2010, 03:43 AM | #88 |
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Mine... would be clinical depression (apparently with dependent, avoidant, and borderline personality factors but--thankfully--not full-blown disorders). I'm trying to deal, I really am. The meds help, and today, I really am fine as long as I'm not given reason to stress out. It's just that ordinary life includes so many utterly terrifying things.
Admittedly, sometimes I feel like I'm just lazy next to people who have "real problems," like relatives with cancer (one died in the past year; the other was diagnosed with a severe cancer and is now doing all right due to a very harsh chemo regimen), or some of the people on this thread. I do hope to eventually become well enough to take care of a home or manage a part-time job, even if I'm never completely independent. Hippiegirl: our disabilities are different, but I do know what it's like to play the pill-roulette game, experimenting with different medicines and cocktails and what-have-you to find out what one or what precise combination works. It is a bitch and a half and definitely a game I wouldn't miss if I never had to play it again. |
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03-22-2010, 08:19 AM | #89 | |
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RANT Jr.
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my message was meant to be a sort of, "just because you dont see it or understand what you do see doesnt mean someone's scamming you. and if you think someone's whining, or clamoring for attention, or feeling sorry for themselves...maybe they are. did you ever think to ask why? it's not like you havent done it yourself ya know. trust me, it's a human being thing. if you're disgusted by human weakness go find some perfect people to hang out with because, personally, i'm a mess at least one day during the year." (and that's the general you...not any specific individual in this forum) why not ask a couple of questions or do some intellectual legwork of your own before declaring someone "less than"? is it really that hard? or are you (again, the generalized YOU) just too lazy to pry your ass off of your self-indulgent superiority complex and be a compassionate human being? |
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05-05-2010, 01:25 PM | #90 |
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interjecting here....
I don't often like to announce such things in detail.... I am Differently Abled.... with several different illnesses, but the Lupus is my main struggle. I do not appear to be differently abled when a stranger sees me getting out of my car, or helping my Mother do her chores, or walking my dogs on a beautiful day... I've slimmed down after gaining a lot of weight due to damaged knees, am as active physically as I can be, can climb mountain paths when my body allows, can carry heavy items in on good days, and can be "one very hardy, tough cookie" when my body is not totally rebelling against me. After I have worked hard or "over done it", my body tries to shut down on me sometimes. I have bad knees, back and kidneys.... many symptoms from the Lupus that make my 38 year old body feel completely broken and drained of life-blood, oxygen and energy some days....I suffer from depression and PTSD due to hardships faced and survived from... (these are not the only things that make me differently abled, but the only things I wish to share at this point) I get really angry and frustrated when someone in the public sees a differently abled person and assumes that because they are walking upright, that they do not deserve to use a handicapped parking space or the little go-buggies in the store, or they insist that they are not entitled to special medical care such as the Special Pharmaceutical Benefit or Breast & Cervical Cancer Screening, Diagnosis and Treatment Program or a Medical Assistance Program designed for "Special Populations" because they are Differently Abled and/or use Health Sustaining Medication. I get very snappy at the young, disrespectful, very abled 20-somethings that get snappy and nasty with my very Differently Abled Mother because they have no manners or respect for those of us that can't get around as easily as they do. I watched a young woman today take the only handicapped spot, and she didn't have a handicapped placard... after we parked up the lot and were walking past her (with my Mother walking very slowly and obviously labored), the security guard asked her for her placard... she commented "F*** You!! Do you see any handicapped people around?" the guy asked her to move her car... her response "any moron that wants me to move can just wait until I'm done!" Too bad he didn't have the power to write her a ticket. Right in front of this girl, Mom handed the guard her placard... the guard said "sorry Mam, the only thing I can offer is to go get you a wheelchair or electric cart." The girl looked at Mom as if she were the Purple People Eater, gave a disgusting comment and continued inside with her hateful attitude. I wanted to knock her block off!! But Mom said let it go. Today, I was walking upright without aide (and not curled up in the fetal position on the couch)... was able to get around better than my mother.... but today is a day that just putting my feet on the ground causes great pain and feels like I'm walking on hot coals... once I get going, I can keep a momentum... but grit my teeth most of the way. Because of fighting off very chronic pain... I get exhausted very easy and am seriously wishing I could take a nap. The sunshine feels so good.... but being in direct sun for extended periods of time causes problems. After being so worn out and occupied with "fighting" my body today, I have no patience or tolerance for ill-mannered, bratty, disrespectful people who obviously are self-consumed and self-centered. Sorry for my rant... gritting my teeth all day has made my nerves raw. |
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05-05-2010, 01:34 PM | #91 |
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Sweet, thanks for sharing about yourself.
Welcome to the thread. Just remember, people like that rude young lady are going to grow old some day. Karma is a bitch. I can totally relate to everything you wrote and concur and agree with you on all your points, and also empathize with you on many. Savor your good moments and forgive yourself the hard ones. |
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05-12-2010, 05:47 PM | #92 |
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i use a powered wheelchair due to living with Cerebral Palsy, and i have weight issues.
I have both a Colostomy and a Urostomy which make me feel completely ugly but i am so much more independant since having them.. But they won't help with dating i don't think i've recently been told i am diabetic i have mental health issues that are acknowledged, and are similar to bipolar disorder but no one will diagnose me because i don't fit a neat little box. i have anxiety, panic and self harm issues. i also seem to have an addictive personality so avoid things a lot. i have control related food issues i do beleive that all these things have helped make me the person i am today, and i can be an incredibly nice, and even romantic person but i think i am going to be single a hell of a lot of my life |
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05-12-2010, 05:56 PM | #93 |
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i'm 30 and i know santa exists and i'm never going to say anything different even if i have to dress as Santa to make people beleive it!
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05-13-2010, 11:05 AM | #94 | |
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Also, YAY for you for gaining more independence with the procedure you had. Again, those things do not make you un-datable. They add to the whole package. |
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05-13-2010, 11:10 AM | #95 |
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I had to get a sticker for my car to go thru the tolls. It was so frustrating because I couldn't figure out what toll booth sold the stickers and what toll was for the EZ Pass thing. It took me 5 attempts to find the right toll. Talk about frustration. UGH! Then when I found the right tollbooth, the person was getting ready to leave for the day. I was her last customer. My nerves were just shot after that. Then I had to deal with the cash. UGH! Sometimes I ask people to explain things to me and they take it the wrong way. For some reason they think I am playing a game. I'm not. I am wired differently. I am not one for understanding concepts. I struggle with it. Then I get people who say things to me like they are happy to expose me to others. Expose me to others as what? Oh, as stupid, lazy, fat, what? I just get even more confused. It makes no sense to me. It is like telling me to go meet someone in another state at a certain time. I don't know about other people, but telling time was a royal bitch. Thank God above for digital watches and clocks. The other kind are just nothing short of hell for me. Did anyone else have this problem? |
05-13-2010, 11:18 AM | #96 |
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Andrew? When you ask for extra help do you preface that by saying "I'm disabled, I have a brain injury and I need a little extra assistance"? I have found that when I do this, people are usually more than willing to help. I have no problem coming out as differently-abled over and over again. It can be the difference between life and death sometime. Like when I get a new prescription? I need to be walked through the dosage instructions VERY carefully. Still, sometimes I make dangerous mistakes with my meds.
As for telling time? No worried, digital time is most everywhere... |
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05-13-2010, 11:21 AM | #97 |
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Hi and Welcome Wheeliestrong, I am glad you are here with us! I know how you feel about your situation. I can so understand it. People are strange. I think if you don't fit into a typical sterotype or box, then you get a label as a trouble maker or a misfit. I have that label since childhood. I never could keep up with other kids. Never. And nobody who was in a position to help me would help me. They just passed me along to let someone else deal with it. That is the public school system as I knew it to be. Anyway, thanks for sharing your story with us. Adele, I never thought of coming out and asking for help. I will start to do that. It never crossed my mind. Thank you! |
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05-16-2010, 01:51 PM | #98 |
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Hi Everyone, I hope everybody is doing well today. I want to share some information here that will be somewhat of a shock to some & a joy to others. On May 26th I am having surgery for possible breast cancer. It seems I have a tumor in the shape of a banana that is going from an 8 o'clock position and ending up at a 2 o'clock position. It is hard, and has given me some side effects of cancer. My mother and grandmother both had breast cancer. I have a sister who died of skin cancer. And I have another sister who is in remission from ovarian cancer (8 years). I am not too worried because I talked to Linus about this, and he gave me the best advice. He said one sentence to me, and it was the truth. He told me to rely on my faith. So I am. I trust my surgeon, who is Yale trained. I have no doubt about it - I am going to be just fine. I know I am. I just ask for your prayers and positive thoughts sent my way. Thanks. Much love and peace, Andrew, Dino, and Gang |
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05-16-2010, 02:25 PM | #99 | |
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Andrew, This breaks My heart to hear, because your one of My dearest bro's. I've seen what cancer can do to loved ones and others, and I hate to hear that anyone I care about has it. I am sure you will be fine but its still scary to hear that you have to deal with it, no matter how good the surgeon is. You've always been there for Me and this time is no different, I'm here for you if you need Me bro ........ take care My friend *hugs* |
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05-16-2010, 03:28 PM | #100 |
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