Quilting with disabilities

[Judith T.]

Eileen, are you a tight knitter? It seems if you are having trouble, you need to relax and loosen up on those stitches.

As for the back, we have The Back Store out here and I bought a pillow for my back. You could probably go on line and order one. It supports the lower back and costs about $60 or so. It also has a strap to fit over the back of the chair. Good luck. Judy in AZ

[Judith T.]

Happy New Year to one and all. I am doing better. still just taking it easy. I hope that everyone will be feeling better and better.
Margarita in Auburn, CA

[Annette R.]

I have been too busy chasing my varmint in the sewing room and reorganizing my sewing space (see my quilting space topic for that saga) to really pay much attention to my own problems or really even read here much.
Jessamina - will be thinking and praying for you as you go through your tests and the surgery. I know it is scary and uncertain but you seem to have approached it well and know what you need so think positive thoughts in the days ahead and know many of us will be thinking about you. Regarding the swallowing issues- the resolution to that is really simple - you go in for a routine endoscopy but if the physician knows you are having swallowing issues he can be prepared to do it then. The procedure is not painful and has minimal risks according to my gastroenterologist. The main risk is if the esophagus is stretched too fast it can tear so that is why the first time I had it done it was done in two stages. The other risks are only those attached to a standard endoscopy and are also minimal. Life is so much easier when thinking about swallowing isn't an every time you touch food wondering and being cautious.

I had my routine iron tests about two weeks ago and am slipping lower in iron so tomorrow, Thurs, Fri, and next Mon. I will have iron infusions each day. The only bad thing about the infusions is that you must sit around for the most part of a day while the iron is being infused and the room is cold and chairs are uncomfortable. I take along my snacks (no food provided either), two blankets,a back cushion and my handwork to do to keep from total boredom. Dh says I pack the house but I cannot sit for four hours without things to do.

When I went for the final lab tests and the scheduling the doctor listed my diagnosis as "rare anemia" The lab workers didn't know what that meant and even checked with the doctor to see if they read it right. Finally I said "I think he means rare like unusual or cause unknown" which is what he had told me. They were totally baffled but I figured they might as well be baffled if all the rest of us were. That night a friend said that winning the lottery was rare and wouldn't it be better to be rare that way. I said winning a prize at Paducah or Houston was rare too and if I could take my pick that is what I wanted. Just confirmed once again that I am a rare (like not too many of ) individual and that isn't all bad.

at this point we hope the iron infusions will pump me up for a few months and I can continue to do what I want to. Our days on this earth are too precious to waste on being ill so I intend to spend them quilting and being with my family and friends.

So I will think positive thoughts for all of you as I hope you will do for me The opportunity to exchange information and get support here in the forum is so wonderful I thank each and every one of you and wish everyone the Happiest New Year. Ann

[Judith T.]

Jessamina, I have written this before but it won't hurt to repeat it. I had the swallowing thing and had an endoscopy done. All you do is go to sleep and when you wake up, it is over. No pain, nothing. The hardest part was fasting 8 hours before. I was afraid to have it done because I thought I would be awake. What a fool I was. Judy in AZ

[Judith T.]

Happy New Year!!! My wish for you all is a happy, healthy and prosperous year.
My FMS seems to have settled itself into the sciatic area of my back. If I want to sit at the sewing machine, I'm going to need some kind of support to that area of my back.
Has anyone found a really good chair that they can recommend? What about back cushions that can be placed on the chair??I'm not looking to spend hundreds of dollars here but if I'm going to be productive at all, I'm going to have to get something.
eileenkny

I bought a cushion called "the tush cush" and it's been a real life saver for me. It has a carved out portion where the base of your spine rests on the chair... so with that couple of inches of open space your spine doesn't touch the cushion or chair, doesn't compress and it really helps with the pain. I have one at home and one in work. They are about $45.00 but worth every penny. If you go on the internet and do a search for "tush cush" you should come up with a couple of sites. I ordered mine that way. Good luck. I feel your pain, truly I do!!!

[Judith T.]

Jessima, my husband had the same swallowing problem several years ago. His lunch 'hour' turned into two because it took him so long to chew his food! He was scheduled for an endoscopy and his gag reflex was so strong, they couldn't get the endoscope down his throat. He was partially awake, but very groggy. The doctor told him that they could go to the hospital and put him out and do the procedure, but he said no (typical man!). His problem lasted a few more weeks and then just left. We still don't know what was wrong. So don't be surprised if your problem doesn't get diagnosed. It may just disappear without treatment.

Ann, I hope the iron helps you to feel better. You sound like you're a ball of energy and I know it's hard to be slowed down. We'll just pray for wisdom for the doctors, a diagnosis, and medication to help you recover.

Margarita, glad you're doing well. Just don't overdo, even if you feel like it. We don't want you injuring yourself again.

Happy, glad your surgery is over and you're on your way to a full recovery. However, if you still have pain in your hands/arms, get an MRI of your neck. You could have disc problems.

Well, that all the diagnosing for Dr. Sharon for tonight!!

Everybody have a great 2008, Sharon in TN

[Eileen K.]

Yes, I think I am a tight knitter. I don't even know how to loosen the stitches. I try to pull the wool only a little with each stitch, but it still comes out the same.
eileenkny

[Judith T.]

Eileen, have a glass of wine before knitting, and then don't wrap the yarn around your fingers like they tell you to do, maybe just once. I knit the old fashioned way with both hands, holding the piece with my left and wrapping the yarn with my right. There is another way, the European way, where the wrapping of the yarn is mostly done with the left and I have tried it but you can't teach an old dog new tricks. Good luck and just keep practicing. I think the more you do it, the easier it will become and your stitches will loosen. Judy

[Eileen K.]

I've mentioned here how I got injured on the job in May of 2005. Prior to that, I had very few symptoms. I've had to have 2 surgeries on my neck-one for a herniated disc and the 2nd for a bone spur that grew at the fusion site and sat on the nerves.
Since the 2nd surgery, I've had a very sudden onset of many of the FMS symptoms. I wasn't sure if they were from my spinal cord nerves or actual FMS. I went to a rheumatologist who confirmed a diagnosis of FMS that my primary had talked about last year.

Now to my problem. My husband said to me the other day that in his opinion, I don't have FMS, that I've basically allowed myself to be talked into the "disease of the week" by people and doctors. How should I talk to him and what should I say? He went with me to my last Rheumy app't and still doesn't believe. He says that instead of focusing on having FMS, I should be focusing on how to be cured and back to the way I used to be. He won't listen when I
tell him there's no cure, only management.
My daughter, who has a friend who's had FMS her whole life, says that according to this friend my symptoms came on too suddenly to be real FMS. I started kind of mild and have had a rapid progression of pain and/or discomfort depending on the day.

This is very isolating, as you can imagine. Can anyone help me out here?
Thanks,
eileenkny

[Annette R.]

Eileen- whether you have FMS or something related to it should and must be something decided between your physician and yourself. If YOU HAVE DOUBTS ABOUT THE ACCURACY OF YOUR DIAGNOSIS, you should ask to see an second doctor. Second opinions can be very helpful---and if you get conflictling reports---- seek a third opinion. It is hard to stick up for yourself in these cases but YOU ARE THE ONLY ONE WHO CAN DO IT.

I have had some of the same problems with my chronic anemia and. after much searching and what may have seemed like doctor hopping to some, I know have physicians in Chicago and here in Texas that agree that my case is a puzzle and that the standard answers just don't fit or solve any problems. Fortunately my dh and dd who are most involved in monitoring and assisting to my special needs have been very supportive.
Diseases that can't be seen on an x-ray or MRI are even worse to deal with because it is often the doctor who overlooks or glosses over the information you him/her. (that is one of the reasons it is called "practicing")

Good luck keep the faithe and believe in yourself the rest will come with time.
Ann in sunny Texas

[Annette R.]

Eileen, I don't know if this will make a difference to your husband, but in my research on the internet about FMS, there is a theory (one of many) about how FMS starts. One of the theories is that after surgery, it can start. It has to do with arching the neck back so far when they put the breathing apparatus in your throat.

For every doctor, there's a different opinion about how FMS starts and what can fix it.

I've started a new drug, just approved in June, 2006, called Lyrica. It has been a great help with the pain. I can actually stay up all day and not fall in bed at 7:30 at night. There are side effects, though. It put me in bed for 2 weeks straight with my eyes rolled back in my head. When I tried to walk, I bounced off the walls! That has gone now. Also, it increases the appetite, my short term memory is gone, and my hair is coming out at an alarming rate. So, it's a trade-off, do I want to be skinny, have hair, and feel horrible, or feel good and look bad!!

One thing that I've found that triggers pain for me is sugar, sugar substitutes, and wheat. A nutritionist told me that wheat gluten is the worst thing for fibro.

I hope you can find a doctor who can give you some relief. Also, take your husband in to speak to the doctor. Maybe he'll believe the doctor. It's so frustrating for people to treat you like you're just nuts, so get over it and get on with your life.

There's a quilter on this site who has fibro and she uses the Guafenisin protocol. She's doing quite well on it, but it takes a complete change in lifestyle.

Sorry for the long post. I probably should have done this by private email, but it might help someone else who has the same problem.

I hope you get relief soon, Sharon

[Eileen K.]

Sharon,
I've been on Lyrica since November and just recently had the dosage increased a few weeks ago. I've been pretty "loopy" ever since, but have had little change in the pain. I wake up every morning and have to do my lower back stretches.
Anne,
My present doctor is the 2nd opinion and both diagnosed FMS. I just had blood drawn Thursday to see if there's anything else going on.
Someone wrote privately about prayer. I think that's the best way to go-I'm going to put it all in His hands.
eileenkny

[Annette R.]

Eileen from what you are telling us it sounds to me like you are on the right track. Sometimes trust in a Higher Power, by whatever name we give Him, is the only way we can go. In 2003-04, I had a fractured vertabrae in my lower spine(L-3) and MRSA (high powered staph infection) throughout my body including in my spine at the level of the fracture. The prognosis at that time was that I would either die or be paralyzed from the waist on down. As most of you who know me know I am definitely not paralyzed even though my walking and stamina took a major hit at that time and will never be back to preinjury status. And I am clearly not dead.

The only answer I have for my recovery is that God was looking out for me because a whole lot of people, many of whom I didn't even know, put me on their prayer list and kept me there. Dh and I are forever grateful to all of those people and think of them even the nameless and faceless ones in our prayers on a regular basis.

You are (and have been) on my prayer list and I know that God holds all the answers. We must simply TRUST. Best to you today and in the days ahead, Ann

[Jules M.]

Please check out http://www.fibromyalgiatreatment.com

This protocol has saved my life... given me back a life I never thought possible!

I was 42 and shopping for a wheelchair. Couldn't buy my own groceries and was failing fast.

This isn't an MLM which I greatly love. Shop in your local store. Easy!

Joyce

[Eileen K.]

Anne and all,
Thanks for the prayers and good thoughts. Sometimes I feel like I'm on a roller coaster with this FMS. My doctor was weaning me off the Lyrica but the rebound pain was unbelievable. I'm going to ask him to keep me on it.

Judy in AZ, my knitting is relaxing! I've learned not to pull the yarn so tight after I make the stitch.


eileenkny