Copingwithdisability.com

How to squash worry and grab more happiness out of life in tough times - CNN.com

2009-11-08T10:19:34-05:00

How to squash worry and grab more happiness out of life in tough times - CNN.com

Penelope's House Fund - written by Penelope

2009-10-13T15:38:38-04:00

I am now accepting donations to help build a wheelchair-accessible home, (1)because of the encouragement and support from friends and family when I decided to do it and (2), because I really need this wheelchair-accessible house. My goal for the donations for the house is $14,000. This is the first time I've ever raised donations. Anytime I ever needed something I always just worked but I can't work right now and its a big adjustment for me. My Dad got me this laptop, and I have dial-up right now. This is my first blog, and I've really fallen' in love with blogging. I want to tell you why my goal is $14,000, because building my house is not going to cost as much as it usually would cost to build a wheelchair accessible-house because I have some donated lumber already and I plan to get as much donated materials as is possible. A retired disabled builder is volunteering his services to help with the house plans and to help supervise the building crew and I have some friends who want to volunteer to work on the house. I am actually, slowly but surely, buying the land that the house is going to be built on. I will post pictures of the house after it is built for everyone to see what their donations have helped accomplish. Please contact me at Ced936@aol.com if you want to donote or just click on my donate button here on my blog.

This post was written by Penelope and originally appeared on her blog http://penelopesdisabledblog.blogspot.com

Announcement about the Fashion Moves Garment Design Competition

2009-10-07T08:43:30-04:00

I was asked to make this announcement by http://www.disabilityresourceexchange.com member Ruth Clark thank you for the information Ruth

It is finally here. We are pleased to announce the launch of the Fashion Moves Garment Design Competition. Register at www.fashionmoves.org

The goal of this Competition is to introduce Fashion Students around the World, to the opportunities of designing for people with various disabilities.

For an executive who uses a wheelchair, the suit jacket needs to be shortened and winter overcoats designed to be easier to put on and more comfortable to wear

For a teacher who wears a below-the-knee prosthetic, design trousers that are stylish but easy to enable removal of the prosthetic through the day without needing to take the pants off.

For anyone with limited hand dexterity, design shirts and blouses that have a formal look but are easier to do up without assistance.

For women taking part in the Ms Wheelchair America pageants, designing evening dresses that will not tangle in the wheels.

And performance ski suits for the Paralympic skiers who use sit-skis.

The First Annual Fashion Moves Garment Design Competition is now open! Students studying Fashion and Garment Design are invited to register and put their skills to work. There is no fee to register and all reports are submitted by E-Mail or through the website. Students from every corner of the Earth can meet together through Fashion Moves and exchange ideas and forge future business connections.

Please spread the word. If you have a College or a University in your town, forward this note to them, asking them to post it to the Students. If you know someone already studying Fashion or Garment Design, send them a copy to share with their classmates.

Thanks for taking time to visit. Lets use the internet to it’s best purpose and spin this information around the world in days.

Bye for now. I look forward to reading your thoughts on this work.

Ruth J. Clark

Fashion Moves

www.fashionmoves.org

fashionmoves@earthlink.net

Nurses and Chronically Ill Patients: Open Communication is Key

2009-09-06T22:17:13-04:00

This article can be reprinted without asking specific permission. Just reprint "as is" and leave the resource box at the bottom. I'd love to know if you used it on your blog or newsletter. Please contact me. Thanks, Lisa

Nurses and Chronically Ill Patients: Open Communication is Key
by Lisa Copen

The medical world could not function without nurses. It's no secret to any of us who has had a doctor's appointment or been in the hospital that a nurse can make all of the difference in our total experience and recovery process. Whether undergoing a routine procedure, scheduling a simple appointment, or being there beside us while the doctor has a serious conversation, a nurse's presence can determine how well we as the patient copes with the situation and emotionally processes the outcome.

Those of us with illness can be quick to criticize the nurses who hardly acknowledge us, who forget to bring our medications when we are in the hospital, and who seem to enjoy their job as the gatekeeper to their doctor a little too much.

But as a chronically ill patient we have a long list of encounters with nursing staff, so we must also fondly recall the nurses who made unquestionable improvements in our care by being our advocate when no one else would listen, or just by holding our hand while we received a underwent painful (and possibly lonely) procedure.

When I was recently checked into the hospital, the nurse had to push me outside from the wound care center around the hospital's construction zone walkway. Ironically, we both had rheumatoid arthritis and I made a new friend by our simple ten-minute conversation. Despite my infection, I felt much more comfortable by the time I got to the hospital.

For years I've attempted to get a nurse to write an article about her typical day for HopeKeepers Magazine. I'd like patients to know how the nurse's day is filled with scheduling issues, checking patients in and the constant lack of time to accomplish all that is expected.

I haven't found a nurse yet who was even willing to be interviewed for an article; more than a few have said, "If my article was discovered I could lose my job!"

With chronically ill patients and nurses continuing to improve their understanding of one anothers and each others needs however, there is only room for improvement in this long-standing relationship. Sadly, sometimes the nurse/patient relationship lasts longer than some marriages.

Here are 12 tips chronically ill patients would like to give to nurses:

[1] When you ask "Are you taking any medications?" and I hand you two pages with them listed, please don't look shocked or as if I am an addict.

[2] It grows tiring to always be the patient and only have people interested in my physical body. When you ask me about how I am coping with my illness emotionally, I feel like you really care. Sometimes it loosens me up enough that I may even be more comfortable and forthcoming about things that doctor may benefit in knowing about the physical symptoms.

[3] When you celebrate my little successes with me, it can be the highlight of my day. You understand unlike most people how hard it can be to reach a goal weight on certain medications or what a struggle it can be to wean off a medication. I know you hear the stories of patients like me every day so I appreciate your enthusiasm for my little successes.

[4] Practically, I realize that you are not able to keep up to date on every medication that is out there on the market, but when you have to ask me how to spell the name of my drug three times, which happens to have an ad in all the best-selling magazines, I question how often you get out of the office.

[5] I don't know if you realize how powerful your words are. When you complement me by saying, "You have the best attitude about your illness. I really admire you for how well you cope with it," that can keep me going for days.

[6] I appreciate it when you ask, "Would it be okay if I pray for you?" Some people may say no, but for many it will be the first time some cared enough to even ask.

[7] When I am undergoing a medical procedure and my family cannot be there, having you hold my hand makes all the difference. Thanks for understanding the fact that any medical procedure, no matter how minor, is major to me.

[8] When I'm in the hospital it's hard to give over the disbursement of all of my medications to you. I'm what some call a "professional patient" and used to taking care of myself; monitoring my pain level and knowing when and how much medication to take. When you go the extra mile and help me get medications on time, I really appreciate it. The time of day I take it can make a huge difference in my pain level for the day.

[9] If you are having a bad day, just tell me, "Today has been a little hectic." I know you are human and have rough days, but when you are grumpy I tend to think I've done something to upset you and have been known to take it personally.

[10] When I'm trying to schedule an appointment for a specific day, or you are trying to reach me and I'm unavailable, I'm not trying to be difficult. Although a lot of my time is filled with doctors appointments, therapies, lab tests, etc. I'm also trying to have as normal of life as possible and give my family the same thing.

[11] I appreciate it when you are able to call in prescriptions so they are ready at the pharmacy when I get there. I know it's an extra step for you, but it helps me tremendously.

[12] When I'm in the hospital, I'm very grateful for the things you help me to do such as shower, change the sheets on the bed, or even just have a conversation to distract me from the pain. It makes a difference in my stay. Thanks for not treating me like a project, but a person.

Living with a chronic illness is difficult. Choosing the career path of nursing is not easy either. When each remembers to pass along simple encouragement in the words of "thank you" or "I admire your strength," both the patient and the nurse can have a beneficial, and sometimes even a blessed, relationship.

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a free 5-day virtual conference w/ 20 seminars online. Follow II Week on Twitter for prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

Getting Around A System That Doesnt Work - by Karen Lynn

2009-08-17T22:02:12-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/getting-around-a-system-that-doesnt-work

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Dear Readers, how awful is this! I got to thinking today how "every" aspect of a disabled or special needs person’s life is scrutinized by "Helpful Experts" who assume God like powers over our goals, our dreams, our thoughts, our abilities, including our wishes to have a livelihood of our own. How dear they step in front of us and block the way of our natural flow. Everything from a career choice, to how we put on our shoes and socks. Better yet, how we even go to the bathroom, is subject to morbid interest and thorough examination. It is critical, meticulous and malicious. Yet, they seem to pull it off.

Our genuine desires as human beings, to led happy, productive lives is intentionally disregarded as they fail to consider our expression of success and happiness. We are never really taken into real consideration. Even if we have some kind of challenge, as a disabled person, our desires to attain our goals or degrees, aught to be recognized and respected. Even if it is just going into work. It would be a joy to have a say so in our destination which society pays no attention or heed to.

This infuriates me to no end, as time, and time, and time again, I have strived, and attempted, and fought for every ounce and every bloody achievement that I have made today. These years of fighting with a system that does not see us as worthy to listen to, have indeed left their scars.

If only our struggles were given the same importance as other suppressed people, it would make life a whole lot easier. Instead, precious years have been frittered and thrown away, down right wasted, trying to get around artificial barrier’s of the worst kind. My dear friends, this struggle is often hidden from people who do not experience it directly, but is no less real.

If I can bring this idea into your heart’s and minds then my life long work and struggle has been worth the while.

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Karen Lynn’s Biography
Karen Lynn is a native Californian. She was born perfectly normal, and paralyzed at 5 months old due to a DPT shot. This shot put her in a coma, leaving her severely disabled, however, miraculously, she made an almost complete recovery. This shot, left her with; left-side hemiplegia, and dyslexia, Cerebral Palsy. Despite all odds, Karen went forth to triumph. She prevailed with her self-determined attitude. Karen made tremendous progress, and has left a mark on this world.
Karen not only learned to dance, but she soared. She was the first physically challenged person to search out, take on the system, and win the first Civil Rights Case in California. She gained an Associate of Arts degree in English, and she won second prize in the Kaleidoscope Literary Art Magazine international prose fiction art awards of 1983. Moreover, in 2006, this story, The Broken Hoof, was published by Publish America. She became a dance teacher in 1976, and has been mentoring special needs individuals since then. Karen has been on an un-ending journey to help others with disabilities. She has sat on the Executive Board of Protection and Advocacy Inc, and also the Clients Services Committee at Harbor Regional Center in Torrance, CA. Karen not only has her own website at:www.whispersofhope.org, but is a motivational speaker. She is a very caring, person, and is passionate about the work she does to help others.
buy Karen Lynn’s book at: barnesandnoble.com - The Broken Hoof
and
visit her site at: http://www.whispersofhope.org

What we go though as Disabled People - by Karen Lynn

2009-08-17T21:38:14-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/what-we-go-though-...

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The hardest part about having a disability is that no one really take us seriously. It is like pulling teeth to be heard as we wish to be heard, and taken into consideration and regarded like the rest of the world. Too many times, we as "disabled individuals" are payed no attention too, ignored, over-looked, and "be programmed" to being nice little individuals, which turn into Convenient robots. This being, because they fear we will loose control and embarrass them. Thus, we who have Cerebral Palsy, a learning disability of Dyslexia, and or any other type of disability are; tossed a bone to keep us pacified, and are patronized, and are regarded as a problem, rather than a asset to our world and our community.

We too often are looked down upon rather than regarded as someone with importance, worth, or value and worthy of attention. We are plighted beyond words because it is easier to ignore our abilities to focus on details. Time and time again I have been aware of others viewing me as a helpless, victim, and not the intelligent, confident person, that I am. We find acceptance from the public and professionals when we are cute little children, and are not a threat to society. But we grow up, have a mind of our own, and desires to fill, that acceptance immediately fades away into nothingness!

Determined - by Karen Lynn

2009-08-17T21:24:07-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/determined

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I will make this happen for myself too- just like everything else in my life- I am as determined as determined can be to move forward with anticipation and recognition with my public speaking career. And even though I have shared and spoken before, many a times, and filled many a rooms with encouragement, hope and empowerment I will keep on keeping on till that someone sees and recognizes my potential and what I have to give to the world.

Learn - by Karen Lynn

2009-08-17T21:04:16-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/learn

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Recently, Over and over again in the news and media, I keep hearing and reading about how they treat "Us" individuals with learning disabilities. After all these years, I still see how they tend to degrade people with LD, and disregard our needs and desires as human beings. They treat us with little or no respect, still. Even after all these years they segregate and label us for there OWN convinces! This outrages me! What can we do as a team? What can we do as individuals with LD to put a stop to this? What can we do to make our voices heard and to effect a change in this world and society?

I have been told…in strength there is numbers. How can we, ourselves, begin a movement towards bettering life and the world around us! Tell me?

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Karen Lynn’s Biography
Karen Lynn is a native Californian. She was born perfectly normal, and paralyzed at 5 months old due to a DPT shot. This shot put her in a coma, leaving her severely disabled, however, miraculously, she made an almost complete recovery. This shot, left her with; left-side hemiplegia, and dyslexia, Cerebral Palsy. Despite all odds, Karen went forth to triumph. She prevailed with her self-determined attitude. Karen made tremendous progress, and has left a mark on this world.

Karen not only learned to dance, but she soared. She was the first physically challenged person to search out, take on the system, and win the first Civil Rights Case in California. She gained an Associate of Arts degree in English, and she won second prize in the Kaleidoscope Literary Art Magazine international prose fiction art awards of 1983. Moreover, in 2006, this story, The Broken Hoof, was published by Publish America. She became a dance teacher in 1976, and has been mentoring special needs individuals since then. Karen has been on an un-ending journey to help others with disabilities. She has sat on the Executive Board of Protection and Advocacy Inc, and also the Clients Services Committee at Harbor Regional Center in Torrance, CA. Karen not only has her own website at:www.whispersofhope.org, but is a motivational speaker. She is a very caring, person, and is passionate about the work she does to help others.

buy Karen Lynn’s book at: barnesandnoble.com - The Broken Hoof

and

visit her site at: http://www.whispersofhope.org

Today's Journey - by Karen Lynn

2009-08-16T11:38:45-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/todays-journey

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Wednesday, September 5th, 2007

It is now 5 p.m. and I just came home from the doctors with my husband. I also see that it has been 5 days since I last wrote anything on my blog. Oh my… but to be honest, It was all I could do to stay focused and together the last three days. I have had an emotionally trying and draining week, trying to keep it together emotionally. I had my moments, had a good cry, of which I believe brings a good release to the heart of pent up feelings and emotions. It does a heart really good:>) Along with writing your feelings out and tearing them up, burning them and releasing them.

It helps to move through a situation at hand, however, sometimes if you can’t, if one is willing, like I have been all my life, it may take years, and years, and years in a particular area in order to have a break through or healing. Sometimes I think my issue will never end, or that I won’t be healed! It is a wound that keeps coming back time and time again. No matter how deep I dig to release this from my being, it’s still there! It haunts me like a ghost! And then, suddenly, I am lead to someone eles or lead towards a whole new direction and action in my life to take. All I find I need to have is an open mind:>))))))))))) and a willingness that never quits!!!!!

One of the on-going challenges I’ve been experiencing has physically gone on for the last 35 years. I don’t like to talk about this much, because I’ve worked on it for so long-. I am hear to tell you that I am still alive and ticking and getting to the root cause. I have learned to cope and accept my allergies to all the different food I have. I will continue on, because I must! I will seek more, and research more, and reach out to those Doctors who I think might be able to help further! You see, in the last 5 years my body has been reacting violently to foods and not getting the nutrient to what I eat.

I have been working with the best Naturopathic Doctor’s around. And Monday, I will be going to see a new Homeopathic Doctor. These challenges have been far more heart wrenching than my Cerebral Palsy and Learning Disability. When I begin to think about this for a minute, it is very painful, it is more painful, and up there emotionally with fighting for my life and my education with my Civil Rights Case , or trying to prove to the world that I am a capable person in doing anything I put my mind towards doing!

But I will survive and get through this just like everything else! I will! I really will!

Now that I have spilled my guts…I will close; as I must prepare my dinner.

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Karen Lynn’s Biography

Karen Lynn is a native Californian. She was born perfectly normal, and paralyzed at 5 months old due to a DPT shot. This shot put her in a coma, leaving her severely disabled, however, miraculously, she made an almost complete recovery. This shot, left her with; left-side hemiplegia, and dyslexia, Cerebral Palsy. Despite all odds, Karen went forth to triumph. She prevailed with her self-determined attitude. Karen made tremendous progress, and has left a mark on this world.

Karen not only learned to dance, but she soared. She was the first physically challenged person to search out, take on the system, and win the first Civil Rights Case in California. She gained an Associate of Arts degree in English, and she won second prize in the Kaleidoscope Literary Art Magazine international prose fiction art awards of 1983. Moreover, in 2006, this story, The Broken Hoof, was published by Publish America. She became a dance teacher in 1976, and has been mentoring special needs individuals since then. Karen has been on an un-ending journey to help others with disabilities. She has sat on the Executive Board of Protection and Advocacy Inc, and also the Clients Services Committee at Harbor Regional Center in Torrance, CA. Karen not only has her own website at:www.whispersofhope.org, but is a motivational speaker. She is a very caring, person, and is passionate about the work she does to help others.

buy Karen Lynn’s book at: barnesandnoble.com - The Broken Hoof

and

visit her site at: http://www.whispersofhope.org

My Personal Battle! - by Karen Lynn

2009-08-16T11:13:49-04:00

This is an article written by Karen Lynn from http://www.whispersofhope.org

This article was originally posted at http://www.whispersofhope.org/blog/uncategorized/my-personal-battle

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Friday, August 10th, 2007

This morning I received the nicest complement a person could get! It was from a new friend I just met on line. A very sweet soul who came into my life with angel wings! She not only is giving me her support, but has put one of my writings up on her blog. How sweet is that- and oh how I appreciate her love, devotion, and kindness!

The truth is, that ever since I can remember, I have been passionate about getting "my life," Together, whatever that is:>)))) lol, and giving more that 150 percent to it, in everything I do. I don’t know any other way. Weather its dealing with a physical therapy issue, a learning issue, an inclusion issue, an employment issue, what ever the issue was, I have always, always walked the line! No matter what I have had to deal with, I have always spoken the truth, and given everyone my all weather they could except it or not. I payed the consequences too!

More times than not, the people I confronted, could not handle the truth. Yet I was canned in the way they decided. Most people could not, and did not know how to cope with the issue or situation at hand or with me personally! They liked to tastefully turn the tables, put me on the defensive, and make me out to be the bad guy! And I, I only want to see good for the world, I only want peace and harmony for others, and I only want to share with the world- if I could do it, so could you!
I don’t want favors, and charity! I don’t want to be treated any differently just because I have a physical disability or a learning disability. I may need some help. And I will ask, if I do! As there is absolutely nothing wrong in asking for those accommodations and in turn, receiving them, fulfilled. And giving it your all! There is nothing wrong in having the same desires as others! We are all human! Aren’t we? Why then should we be looked at any differently?

I do not think society ever dealt with a human being just like me before! A free spirit, a rebel with a cause, a person who has hope, dreams and desires, and whats to help others not have to go through what I had to go through! And to see those dreams accomplished. I am a person who is willing to go the extra mile, who is willing to take on the system, to not only see equality for herself, but equity for others! I want to see and bare witness to fairness. I want to bare witness to justice being made for my kind. It doesn’t matter to me what your disability is- lets learn to help each other and work in unison. "One for all,… and… all for one" This way all of us can have an opportunity and chance to have our wants, need, and dreams met.

We are not animals to be lock in cages. We are not extra ammunition or surplus to be shot rounds at. And, we are not criminals! We are human beings desiring the same things in life that"NORMAL" people have a chance at daily. So why can’t we! We do not deserve this kind of treatment. We are people who want to succeed in our lives- We want to see our hard deserved action recognized- We want our words to be taken seriously, and we to want to be praised and validated- we want other to recognize our achievement without being locked out of the mainstream of life! We want our lives to have meaning too!

We don’t want to just sit at home day in or day out, and stare at the four walls because we were blocked, conveniently, from earning a living, or getting a degree that we could have gotten if those professionals who call themselves professionals did not stand in our way, or label us, or made a unsound ruling and judgment just because we are shrouded with an imperfect body, or mind… this does not give anybody the right to look down upon us, or judge us.

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Copingwithdisability.com

How to squash worry and grab more happiness out of life in tough times - CNN.com

Penelope's House Fund - written by Penelope

Announcement about the Fashion Moves Garment Design Competition

Nurses and Chronically Ill Patients: Open Communication is Key

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Getting Around A System That Doesnt Work - by Karen Lynn

What we go though as Disabled People - by Karen Lynn

Determined - by Karen Lynn

Learn - by Karen Lynn

Today's Journey - by Karen Lynn

My Personal Battle! - by Karen Lynn