littlehud

Hello Mother. I love your thoughts. I sew when I can and appreciate those times.

featherweight

I had hand surgery on my hand in May. She said it would take over a year to heal. I put it off for several years until I couldn't stand the pain anymore. I used the "Handese" gloves also. They kept me going for about four years. They are fabulous. Give them a try and I don;t think you will be sorry. It keeps all the heat from your body inside the glove kind of like a little heating pad.

Born2Sew

You can add me to the list, as I have RA, OA, Sjogrens, Lupus, and due to the brain fog am probably forgetting something... Anyway, I sew when I am "up to it". I find the sewing part is really the easiest. My biggest challenge is cutting out pieces. I work awhile till I can't stand it anymore, then stop and rest awhile. Rest is very important for us. Try not to over do. Take pain meds if you need them. It's hard to do sometimes, but I found the pain meds helped alot with the fatigue too, which enabled me to do more of what I'd like to do. For now, I'm sewing as much as I can, while I can. Which is good advice.

Right now my knee is my biggest problem, but in a few days it may be something else as it moves around.

Unfortunately, there is no magic answer. Just do the best we can when we can...

Hugs to all of you..

featherweight

And they call this our Golden Years.. Well it sucks!!!

watterstide

in my signature, there is a link to " but you don't look sick" and "the spoon theory". Christine ,who wrote this, has lupus and a few other things..the spoon theory explains it, so that people that don't understand, can grasp it a little.

The fibro fog is easier to deal with,i write on a dry erase board in the kitchen, i have a little clip board hanging in my car..and my calendar is my best friend. i make copies of my quilt patterns and use a highlighter to cross off every step, as i complete it. my way of dealing with it.
i am not allowed to cook,without a timer clipped to my shirt.
i have almost taken the house out, twice over the years.
when i do laundry, the same thing, i set the timer. (my husband does 95% of the laundry though)

Catrinka

I have RA, too...among other problems. I've been on Humira for about five years now and am in my late 60's. For me, it's been a MIRACLE drug as I could not walk, keep house for my hubby, cook, clean, take care of our pets..not even type on my PC. Thank goodness I CAN do all those things. But the RA happened overnight, and my wrists were damaged (you can read my profile to see other problems). I LOVED to hand quilt and had done it for years...especially at night while my hubby watched TV. I can put quilt pieces together on my sewing machine and make very nice tops. However, I usually make full, queen and king size...too big for machine quilting. I certainly cannot afford to have them machine quilted, nor could I afford a quilting machine! (Gasp!) I don't have any special tricks to make quilting easier. I use two tables put together to lay out my backing, batting and quilt top...and I do it the old-fashioned way...PIN>>>PIN>>>PIN using large safety pins. Now...I could NOT do this until after I was on Humira for about six months. My quilting stitches have turned from beautiful to messy, so I hand-tied my last two with yarn. But now I am finishing a quilt. I used STIFF wrist supports that I bought from the drugstove. I've learned I cannot quilt fast as I once did, nor can I expect perfection. My stitches are longer than before and uneven when I hand-stitch. I cannot afford to have my tops machine quilted, nor could I afford a machine. :-(( Are you taking Humira or another TNF blocker? I take that plus Methotrexate. At the beginning of this disease, I wanted to die...because of the hideous pain and the inability to do my housework or even take care of my husband. So I am happy the Humira worked for me. Quilting is VERY hard on the wrists, and I am thinking of buying a stand-alone frame when I save up the money. It's hard for me to hold the round quilting frame...and the quilts are just too heavy. I quilted for two hours this afternoon, got very little done and was BUSHED afterward. And yes...I know about the lack of energy. There are days when I HAVE to take a nap with the cats in the afternoon. Fatigue is part of this disease. All I can say right now is quilt for maybe one hour at the most...use wrist supports and think about getting a frame. Those hoops are SO hard to hold when one has RA. Do keep in touch.

Catrinka

You are SO right about the "Golden Years". I remember my Mother and my hubby's Aunt saying the same thing when I was a bit younger. I highly recommend a TNF blocker, but that is up to you and your doctor. It saved my life. But I still have "flares" now and again..plus I have to deal with severe panic attacks and depression. I agree with you.....All of us must just do the best we can and DO TRY to think positive. A lot of research is being done, and with genetic research...a true cure may be just around the corner.

Xtgirl

I have RA too..I'm 39 and it certainly is a blow to find out you have a life long disease and not know where it's headed. I'm on enbrel and sulfasalazine and it's pretty well controlled but I have pain and stiffness off and on mostly in my hands which doesn't affect my ability to sew or quilt i did give up knitting though.I'm lucky. I'm a military musician so my hands are important. One thing I do that is not quilted related that helps is that I wear bike gloves to protect my hands when I drive or lift things. It really helps keep them from hurting. I think rest is the thing that helps me the most...getting enough sleep makes my symptoms better. I guess my advice is to wear gloves when quilting, take rest breaks and avoid hand work or do it for short periods of time. I bought a cutting system to avoid some rotary cutting...that will help. I just take breaks. Also the more exercise I get the better my body feels. I don't really have answers either...still finding my way through it all. Best wishes to all you have this or the similar autoimmune diseases.

KerryK

Lord, forgive me for complaining so much when so many have more troubles, aches and pains than I do. Bless them, each and every one.

kat13

I feel your pain! I have days I can barely move
And just do my best. Quilting takes my
Mind off my pain and gives me a chance
To smile. I have to ask, what is MSG?
Or was it MSS? I wish you all the best
And its comforting to know I'm not alone.