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TOPIC: Quilting with disabilities

Quilting with disabilities 17 Aug 2007 22:06 #7575

Hi Ann, could you send some cooler air toward the south, please?!

I'm thinking about an orthopedic doc, but I'd rather have a neurosurgeon since the spinal cord is involved. I don't want surgery at all, but I know these bone spurs continue to grow. They don't shrink or disappear without Divine Intervention (which I've had before with my lumbar area). The more these bone spurs impinge on my spinal cord, the harder it will be to do surgery (I think) and I really don't think I can go on like this for years. Besides, after the spinal cord has been damaged, it probably won't go back to it's previous state, so I'll have numbness, possibly paralysis, who knows.

I'm going to send my report and films to various places.
It should be interesting to get the opinions of endoscopic surgeons.

I recently bought bed risers for my cutting table and that helped so much.
I had to cut squares for 'hobo' packs for the children at church and the added height was great. My back went into spasms, but not as bad as it normally would.

Also, Ann, our church has theater-type seats, not the fancy rocking ones, just padded, comfortable seats with arms. We're a contemporary style church and the lights are somewhat low during the service, so if I need to, I cross my legs in the seat, take my shoes off, whatever I need to be comfy!

I totally agree with you about sticking to my guns on doctors. I did my research with the lumbar pain and found doctors in Atlanta (5 hours away) who would actually listen and not treat me like I was nuts. I really don't think a pain clinic is going to do a lot of good. Sure, it will treat the symptoms briefly, but the problem remains that I have a 'spear' going into my spinal cord.

If I don't like a doctor, I just don't go back. I'm not assertive enough to tell them what I think, but I certainly don't go back for more of the same!
So I'll do my research on the computer and pray lots for wisdom and guidance in every little detail and when it's right, I'll know it.

If you think of anything else that might help me out in my quest for info, please let me know.

Have a great weekend, Sharon in TN
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chronic pain 17 Aug 2007 21:12 #7572

I too have chronic back problems but am fortunate not to have the significant debilitating pain that others have. (I count my blessings) I found that the best advise and treatment that I got for my back was an orthopedic surgeon even though I never had surgery. I am essentially missing three vertebrae they are that collapsed so short at 5'4'' has become bairly five feet. Table height and the design of a chair are the two things that can make all the difference in my comfort level.

My advice to you, Sharon, is #1 stash your pills everywhere you can think so you never leave home without them I keep some in the glove compartment of the car so they are available even if I do not take a purse. And I have no shame I carry chair cushions almost every where I go ---especially to a church or a room where I know there will be folding chairs it isn't the total answer but it sure helps. And then keep looking until you find a doctor that will work with you, explain things to you, and listen to your questions. I went through three doctors last year because none of them would address my chronic anemia with anything but periodic blood transfusions. Currently I have a good DR in Chicago for when we are here in the summer and I have a new one in Texas wil see how she does but at least she listens and gives you understandable answers.
Keep the faith, my prayers are with you and remember that you know your body better than any doctor so stick to your guns until you get some relief.

thinking about you from Ann in Minnesota where it is "cold" tonight
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Quilting with disabilities 17 Aug 2007 19:00 #7567

Hi Lilo, I think the acupuncture might help the fibro more than the neck. Almost everyone says do exercise for fibro, also. It's hard to do exercise, because when I stand, the pressure on the disc makes the pain worse, so I have to lay down or use my little pump up traction collar.

The weight thing is okay with me. I was 124 today, and around 5'5". With all my discs blowing out, I'm getting shorter and shorter!

Did your husband get depressed along with the chronic pain? That usually goes hand in hand. However, most of the anti depressants I've tried make the depression worse for me, so I try not to take any.

So long for how, got to get to other things.

Sharon in TN
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17 Aug 2007 17:32 #7565

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Sharon,

Accupuncture and the chiropractor only helped my husband for a few days. I will say that he had a very stressful job which probably didn't help things regarding his neck and back. My husband has been a real trooper over the years, never complaining, he just refuses to let this keep him from living life. Yes, there have been adjustments (no more skiing and golf), but we have found other things that we enjoy together (gardening, hiking with our three dogs).

One thing he did do that helped with some pain was to lose and keep his weight at a level that is better for him. He is now weighs the same as he did when we got married.

Pain is such an individual thing. I would visit other options regarding your neck. Oh, my neighbor who also suffers from back pain swears by yoga and a hot tub. She goes three times a week to a yoga class and has a hot tub in her back yard.

Best of luck,

Lilo
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Quilting with disabilities 17 Aug 2007 16:03 #7556

Hi Denise and TQS Wizard, thanks for the replies. I just got home from the doctor who prescribes my meds and mentioned that no one had called me with my neurosurgeon's appt. The nurse practitioner looked on the computer and the neurosurgeon had posted a comment yesterday that my problem wasn't bad enough to be seen again and I should try a pain clinic. My reply to her was, yes, but it's not HIS neck."

Wizard, I'm glad your husband is doing so much better. Chronic pain has to put a strain on relationships in a household. I, too, am wanting to get off the medicine, and I'm only doing about 1/2 of what was prescribed. I'll probably have to do the prescribed dosage if I get any decent pain relief. How did accupuncture work for your husband? Did he get any pain relief at all from it?

Denise, I got your private email. Thanks so much for your support and number. What time zone are you in? I don't want to call too early or too late at night.

I'm going to investigate Vanderbilt Univ. in Nashville, and some other places. One of the problems in living in 'small town USA' is that the medical community isn't up to the standards of the larger cities.

I talked to my chiropractor a while ago and she said that around here, the doctors wait until the patient is mostly paralyzed before doing neck surgery. Then, because it is such a delicate surgery, if anything bad happens during surgery, they can just say, 'oh, the patient was so bad it would have happened anyway."

Well, as usual, I've written an novel.

Everybody have a great weekend, Sharon in NE TN
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17 Aug 2007 12:50 #7553

Sharon,
In your earlier post you mentioned that your neurosurgeon was an angel. He will also be your best friend when it somes to this situation. You already trust him, right? Find out his "educated" opinion since he could be responsible for your treatment.
My prayers are with you.
Denise in cool Minneapolis
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17 Aug 2007 12:19 #7552

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Sharon,

I am so sorry to hear of your chronic back pain. My husband has had neck and back pain for about 15 years. Two neck surgeries and one VERY painful back surgery later he is doing much better. His goal was to get off of the HUGE amount of medicine needed to function each day.
As I don't have this going on personally I am definitely not one to tell you what to do. However, after he tried everything (accupuncture, therapy, etc.) surgery was the last option. It will be a year this weekend. His pain is 50% less and he will this month once again be able to golf and ski.

His surgeon spelializes in back and neck operations. We would only have been able to do this with insurance. We met with several doctors before he made the decision. All said, he thinks it was worth it to be in less pain on a daily basis. Oh, and he gets a weekly deep tissue massage. You might check if that is something covered by your insurance. Best of luck to you.
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Quilting with disabilities 17 Aug 2007 10:54 #7550

Good morning, all, I had my cervical MRI and it shows that the bone spurs are definitely into the spinal cord. I could tell that last year by looking at the x-ray films - too bad the doctors couldn't. I think if it was 'their' neck, something would have been done, and fast!

I have so many questions and worries going through my head right now. I want the most conservative surgery possible, not open back surgery. The places that specialize in that are not considered hospitals and therefore insurance doesn't pay much at all.

Then there's the thought that if there's a slight slip of laser, or whatever they use, I could be paralyzed.

I really need prayer right now. I need guidance in even the smallest detail of this problem.

Thanks, all and have a great day, Sharon in TN
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quilting with disabilities 23 Jul 2007 11:54 #6617

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Hi all,

I am blessed enough to not be in unmanageable chronic pain right now, but I have a history of disc problems, right-side numbness, hip problems, and a family predisposition toward carpal tunnel and back problems. Since my job requires a great deal of dexterity and stamina, and puts postural strain on my neck, shoulders, back, and hips, I am doing my best to work and quilt as safely and ergonomically as possible. I honestly don't know what I'd do if I couldn't work and quilt.

So: I have set up my machine, pressing surface, and cutting surface at the proper heights for me as established in "Creating Your Perfect Sewing Space" by Lois Hallock. I sit in a good, armless office chair from Ikea with a "Quilter's Whoopee Cushion" on the seat (actually one of those rubbery inflated excercise balance pads they use at the gym, but I bought mine at a quilt show.) I took Dierdre McElroy's hand quilting class to learn to hand-quilt ergonomically, and I use the fattest-handled tools I can. I've also had to face up to the fact that I probably can't go to quilt retreats any more, because I always hurt after sewing all weekend on tables and chairs that are invariably the wrong height.

Hopefully all these things will keep me quilting well into old age!
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quilting with disabilities 23 Jul 2007 09:41 #6615

Good morning everyone, I've had several doctors and some I dearly loved (like the ones in Atlanta). Wish I could bring them to my town. Also have a neurologist that is absolutely an angel. One day after my botox injections (in my back....not in my face for wrinkles!!), I asked him to lay hands on me and pray and he did. Afterward, he told me he was not really comfortable praying in public, but that didn't stop him. I can go a year or two and not see him and when I do see him, he'll say 'hi, Sharon, how you doing?' It just amazes me that he can remember people and their circumstances.

Anyway, to the point of my message. I think a lot of the younger doctors just getting started in their practice are healthy and don't have a clue how chronic pain feels. It's hard for them to relate to us who do have chronic pain. Sometimes I think they just want to 'get us out of their hair'. And then there are the folks who say they have chronic pain just to get pain pills. They are making it harder on the ones who need them. I just started with a new GP and his policy is a drug test at every appt. to see exactly what's going on with the drugs. Thank goodness I had the documentation of my problem with me and it was also on the computer , so he knew I wasn't blowing smoke.

Well, I feel better now!!! I'll get off my soapbox and get on with reading messages.

Hope you all have a painfree and blessed day, Sharon in NE TN
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22 Jul 2007 21:40 #6607

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Went to a wedding this weekend up in Eagle River, WI I forgot to take the anti-inflamatory and muscle relaxor and boy was I paying for it. That satand up MRI sounds like a good idea I think I will find 1 of those. THANKS....Jean
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Cysts / Arthritis 22 Jul 2007 18:58 #6604

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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
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Reply to cutup 22 Jul 2007 16:22 #6597

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
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07 Jul 2007 11:30 #5925

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Kreestahl wrote:
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
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