Quilting with disabilities

[snowplow3840]

We have been a subtitle under suggest a new forum topic for quite a while and now those of us who quilt with adversity of one type or another have a home of our own. (just put out the request this afternoon and here we are -- in warp speed I think)

I will share a little of my story and the rest of you who have shared your story before -- Please Please - share again and then we will be able to make suggestions to each of you for solving or alleviation some of the problems we face in life.

In 2003 after quite a while dealing with (off and on) back problems, I was hospitalized with complicatiojs of the back problems and the high powered staph infection. One of the doctors that we worked with predicted that I would either be dead or at a minimum parallyzed from the waist down. I was not happy and ws determin. After four months of hospitalization and nursing home care, I wanted to go home. I fought like crazy to get where I am today and things are much better but will never be "normal" )whatever that is ) As a friend who lived with a disability once said to me, you diagnosis is temporarily able bodied and that is a diagnosis shared by most. So having a disability is just another challenge in this thing we call life.

So join us here share your stories and your adaptations to allow you to do what you love which in my case is quilting --- and share your challenges and frustrations-- maybe someone else has met the same challenge and has a suggestion for you.

Thank you Quilt Show staff for giving us this forum and everybody join in

from Ann continuing to plan to face each day and meet the challenge as I travel today in Wisconsin tomorrow Illinois

[snowplow3840]

Hi Ann, and everyone else, it's great to move into a new place without lugging all the boxes, etc.!

I'm dealing with fibromyalgia and degenerative (otherwise known as 'old'!) discs and bone spurs in my neck. Two bone spurs have fused two vertebra together and now I have a spur growing inside the vertebra and going into the spinal canal. BTW, for those of you with fibro, I talked to a college student recently who is majoring in nutrition and she said that gluten was one of the worst things for fibro. It may not be true for everyone, but it certainly affects me.

In the mid 90's, I had all my lumbar discs leak out the nucleus (the spongy cushion that keeps the vertebra from rubbing together. I had a Divine healing from that (which is a whole other story. If anyone would like to hear, email me and I'll tell you. I'm not sure how 'religious' we can be on this board).

Along with chronic pain comes depression, so I'm dealing with that, too.

I've had slumps in my almost 50 year sewing career, but the one I'm in now is lasting a long time. I have no desire to create. There's nothing between my ears that's functioning properly right now! (Except the whiny part!). Even the show recently about jump starting creativity didn't do the trick. I did manage to do two convergence wall hangings recently. I can see that I'd be totally addicted under normal circumstances. If Ricky can't inspire, then nobody can!!! Thanks, Ricky, for your convergence quilts and book.

I hope I can be an encouragement to others here. I'm a good listener and if anyone wants to vent, just email me. If you need one-on-one, then email be privately and we'll exchange phone numbers. There's not much that can make you feel better than helping someone else.

Well, again, I've written a book, sorry! Everybody have a great afternoon,
Sharon in NE TN

[snowplow3840]

Sharon,

Physically I am in fair condition (age and a little arthristis is setting in), however, dh has degenative back disease. He had thoraic cadivor (sp) bone implant last aug to remove some paralysis. Dau has chronic illness, pseudo tumor cerebri. It is good for my sanity to interact with others/quilters. I am glad to see you -- like my mama would say -- keep pushing on.

Ruby in MS

[snowplow3840]

Ruby, thanks for your encouragement. I'm pushing on. Some days I can get a good distance and some days, baby steps, but, ahead is ahead, no matter how far at a time, right?

I can certainly sympathize with your husband. I hope he is feeling better. I don't recognize the name of the disease that your daughter has, but I hope there's something that be done to help her.

Have a great day, Sharon in NE TN

[snowplow3840]

I found quilting this year because of my medical problems with my back, hip and shoulder. I have 9 degenerated discs and nerve impingement so my hand goes numb when I overdo. I had been a glass artist for 12+ years but could not continue any longer. Designing quilts is very similar to glass designing for me. The fabric is much lighter to work with but I still have to find ways to adapt for my weaknesses.
I also have been battling with depression for decades and when I had surgery on my back, it increased. Recently my doctor prescribed an antidepressant that has the side effect of causing the brain to function more effectively with my pain meds. My pain has decreased by 70% just from that. I happen to be one of those people who cannot function without medication so I was thrilled when it had such a dramatic effect on my pain.
I have tilted my sewing machine and bought "sewing" glasses so I don't have as much strain on my neck. I have to change between styles rotary cutters frequently so I am not causing problems from repetitive movements in my wrist, elbow and shoulder. I have to get out of my chair frequently to stretch out my back muscles so I have a less efficient way of working, but that's what I have to do to be able to continue doing what I enjoy.

[snowplow3840]

Well, I'm not sure if breast cancer is considered a "disability", but I certainly feel as if it is one at the moment. Like many of you have shared, my quilting and life in general has been seriously altered. And although I don't have a "physical" disability per se as far as a back, legs, arms, whatever, I do have an "energy" and an "emotional" disability. And like one of you said, life will never be "normal" again (whatever normal is). I go in for a bilateral mastectomy on Sept 4, 2007, and my life will never be the same again.....nor has it been. My activities have diminished because of the chemotherapy, but I'm still active in my bee, in taking some classes, and in monthly block of the months, but at a MUCH slower pace.

Amazing how this new elements in our lives force us to slow down and look at things from an entirely different perspective, isn't it?

Michelle

[snowplow3840]

Michelle,
It might not be classified as a "disability" but cancer treatment is very disabling. You face life changes which are not temporary and are draining physically & emotionally. IMHO you definitely face similar challenges to those of us who have posted here. Keep up the fight and know that others do understand how overwhelming illness can be.

Denise in a hot Minneapolis

[snowplow3840]

Michelle, thank you for sharing your story--- of course struggling with cancer in what ever form is a disability --- whatever it is that stops you from living your life to the fullest --- is a disability. and physical and emotional stress certainly interfere with your ability to live your life to the fullest. In the past three years I have gone through several bouts of severe anemia and three original projections by drs. that I had cancer.
Luckily no cancer but the anemia continues. I will keep you in my prayers, Michelle. and if there are specific areas that you need ideas about ways to adapt please ask your questions here. Thinking good thoughts for you and enjoying hot and sunny weather in Minnesota Ann

[needlepointernc]

Hi,

I have had 2 hip surgeries and radiation on my right hip since 2003 and had complications after the second surgery. It is my right hip. You don't know how much you need your hips til they don't work! Anyways, I couldn't drive for awhile, but was able to get a left foot gas pedal adapter so I can drive. It is a plate with a gas pedal on the left and a bar that sits on top of your gas pedal on the right. It has a cover over the gas pedal where I rest my right foot. So, I step on the left pedal to make the gas go. I had to learn to use my left foot on the brake. It took me 2 weeks.

I sew with my left foot on the pedal (and had been doing so for awhile before I had hip surgery cause of the pain). I am ambidexterous so I have an easier time switching. I now also use my mouse on the left to give my right hand a rest. The only thing I can't do anymore is use my knee lift.

We had a stair lift put into our house so I didn't have to do the stairs. I am just at the point where I am trying to do them once a day.

I also started taking online classes. So, I don't have to lug my machine out and I don't take any classes at symposiums etc anymore where I would need a machine. I am doing more small pieces and exploring art quilts etc. and got back more into hand work like beading, crazy quilting, punchneedle etc.

So, there are always ways to get around things. There are many Web sites with adaptive devices. I was amazed at how much there was out there. There is a place here in Raleigh, NC that adapts vans and they also have all kinds of adaptive devices.

Ruth-Ellen

[snowplow3840]

talking about adaptations and equipment to help us live our lives to the fullest, I should have mentioned a place in my stomping grounds for 30 years and that is Courage Center in Golden Valley MN ( a suburb of Minneapolis, Mn I have not looked up there website my fault I started writing this before I thought about it I will and post it later) They are noted world wide for their services to people with disabilities and their innovative equipment and non equipment adaptations for disabilities. I have tremendous respect for their services and even before I had my own disabilities I worked with people with disabilites (ironic isn't it) and found solutions to many problems through their services. So where ever you are if you need help to find adaptive devices or techniques, contact Courage Center and see what they can provide for you in terms of information or resources. suddenly thinking with all cylinders in Southwestern Minnesota and waiting to return to MPLS-ST.PAUL tommorrow, traveling Ann

[snowplow3840]

I just went to look up Courage Center on the web and they have a ton of sites Go to www. CourageCenterMn.org and you will get the main office information etc. you can either e mail them or call them and ask to speak to a person who can assist you with information on how to determine the most appropiate adaptations related to you needs. If possible ask them to find what services might be available in your community. I have always found the staff there to be very courteous and helpful and they have always been able to steer me in a good direction to solve the problem I was presenting to them, hope this information is helpful to you

[snowplow3840]

Hi Ann,

My doctor gave me a referral to the Courage Center for my lower back problems. They are definitely the best in the Twin Cities.

Denise getting ready for a class in St. Paul

[cutup]

I found quilting this year because of my medical problems with my back, hip and shoulder. I have 9 degenerated discs and nerve impingement so my hand goes numb when I overdo. I had been a glass artist for 12+ years but could not continue any longer. Designing quilts is very similar to glass designing for me. The fabric is much lighter to work with but I still have to find ways to adapt for my weaknesses.
I also have been battling with depression for decades and when I had surgery on my back, it increased. Recently my doctor prescribed an antidepressant that has the side effect of causing the brain to function more effectively with my pain meds. My pain has decreased by 70% just from that. I happen to be one of those people who cannot function without medication so I was thrilled when it had such a dramatic effect on my pain.
I have tilted my sewing machine and bought "sewing" glasses so I don't have as much strain on my neck. I have to change between styles rotary cutters frequently so I am not causing problems from repetitive movements in my wrist, elbow and shoulder. I have to get out of my chair frequently to stretch out my back muscles so I have a less efficient way of working, but that's what I have to do to be able to continue doing what I enjoy.

Hello, I know what you all are talking about pain, pain, pain,I am 43yrs old and have been dealing with back pain from my early teens, I was thrown from a horse onto a tree, ( not the horses falt ) kids on mini bikes rideing down the trails. I love riding so it did not stop only for a little while.
but anyway my new Dr. gave me a anti inflamatory and a muscle relaxer
and I can not function with out them. Before the Docs.would only give me 1 or the other or nothing at all and tell you he cant see the problem. I have trouble sleeping too. I also have inherited degeneritive arthritus in my spine and fingers, and right now I have cyst`s on my right thumb joint and my right wrist bone. But like I said talk to your Doctors about both of those meds. IT REALLY HELPS ME.....Jean

[cutup]

Hi cutup, I just read your post about your pain and docs not doing anything about it. I went to several doctors in my hometown and they would (figuratively, not literally) pat me on the head and say,'when the pain gets bad, come back and see me.' Helllllooooo!! My pain is bad or I wouldn't be here now!! I didn't say it, but felt like it. I got on the net and did many hours of research. Finally found a doctor in Atlanta (5 hours from me), saw him and the procedure he wanted to do was not covered by my insurance, so I was sent to one of his friends who did almost the exact procedure, just called it a different name and it was coded differently.

Don't give up. You have to take your health care into your own hands. The doctors won't do it for you. Keep on researching and asking till you get what you want. If I hadn't found this doctor on the web, I'm not sure I'd be here now. The test he did found my problem and although he couldn't 'fix' the problem, at least I knew I wasn't crazy.

Just keep fighting, girl, and if you need help, email me and I'll help you research.

I just recently found a 'standup MRI', and I asked my doctor if I could have that for the disc problems in my neck. So when I get that scheduled, I think the problems that show up will be a lot different than the lying down MRI.

Hope you feel better this week, Sharon in NE TN

[cutup]

I have trouble sleeping too. I also have inherited degeneritive arthritus in my spine and fingers, and right now I have cyst`s on my right thumb joint and my right wrist bone. .....Jean[/quote]

I have cysts on both thumbs, arthritis in hands and back, sleep with cpap machine. Getting old is no fun and the drs who don't really listen do not help with everyday living disabilities. Do hope we all are able to continue cutting,sewing,quilting for a long time to come

Ruby/Gamby in MS