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  • Stitcher45
    Yes, somedays it seems like breathing is too much. I understand what you are saying. And I to am very grateful we have this forum to talk and vent and encourage. Before this thread, I did not know of anyone else who was suffering with this disease. I am so happy to be able to talk to someone who understands. I am grateful for each and every one of you. I wish you didn't have this but am grateful we found each other.
  • Walking
    Well Ladies I think I found a secret for me at least...I have been walking, now I am up to 30mins, 2 times a first walking to my mailbox was too much, that is only 200ft. Now I am up to 3/4 of a mile 2 times a day, it is up and down a hill.....the secret is to build slowly....if you go too far one day, it makes you sick for many I started slowly... I want to let you know...I am NOT and exercise person either! But I am reaping benefits from of course if its a flare up it would be impossible but I just start again...that's the key...start again. Another good thing is my dogs get exercise too and they are anxious to go too! Call me looney, but it is working...the experts must be right!

  • Yipee Janet
    You've found something that is helping you. Way to go girl. Hip Hip Horay. Keep it up. Baby steps, one day at a time.
  • Janet and others,
    I wanted to let you know that I use to walk (30 minutes or 1 mile--whichever came first on the treadmill-somedays I had to go slower than others) and it DOES make a difference, it made me feel "stronger" both physically and emotionally! I had to quit suddenly because I had a severe case of the gout to come on one foot, I was doing good just to hobble to the potty! Does anyone else have any problems with gout? Anyway, now that the gout has settled down I walk the dog for a total of about 15 minutes when my husband is at work and in that *slow-paced* 15 minutes I am hurting in my back and my hips, feeling weak and hassling for breath, and I know it is just because I haven't been walking and I am now in worse shape (it doesn't help that the heat index here has been up to 115 for several days straight!) But now, I am more determined than ever to start back on the treadmill Monday~~no excuses!
  • Good for you Pamtanise!!! Just start back easy. I am rooting for you girl!!!

    I notice an improvement mentally too! Maybe because I feel like I am DOING something to improve the quality of life! I like walking best when it is cooler so I do the early morning or evening. My last walk tonight was at 8:30pm and it was nice...cooler anyway. I would love to get a treadmill that would be wonderful to use when the weather is crummy....I did recently inherited a Nordic Track and I am trying to get used to that...I feel clumsy on it, like I want to slide backward, and I haven't tried to use the hand pulleys! Does anyone have this machine??? I would appreciate your comments.

    I will be thinking of you Pamtanise on Monday...just think we will be doing it together!!!lol

  • Thank you Ladyinmaille...I love the rooting section! So glad I have someplace to share our ups and downs! Everyone is so great!!! you all!

  • I'm so proud of you all! You've all got such wonderful attitudes!!!

    I was feeling so down...with the whole "sock" incident so sore from physical therapy treatments, but reading these postings gave me new determinatin that dispite the pain, and all the recent set-backs...I'm NOT going to give in to self-pitty.

    Thank you all again for being there and inspiring me. Without even realizing it, you've made a difference tonight.
  • Hang in there, Lifestar.

    I wanted to mention it is alot easier for some folks to walk on a treadmill instead of actual pavement, I would love to have a treadmill here at home too and we have thought about getting one, but I honestly don't know where we would put it! At present, we go to the parks and recreation center in our town, you can have a membership there for $40.00 per YEAR!!

    G'night for now.
  • To: Ladyinmaille, Janet, Stitcher45, Lifestar, & Pamtanise,Carie, and others,

    I just wanted to say hugs and thanks for your support. I can't talk to my dh about pain after 12 yrs. dealing with it. He dosen't want to hear it at all. period. My mom thinks my pain is due to 'mild depression' ie. in my head, even though I'm dealing with fibro plus 2 other autoimmune conditions all diagnosed. Which proves "if you don't walk a mile in anothers shoes" you don't get it. I'm going away for 4 days vacation with my dh and 4 kids to a cabin in MO (my brother-in-laws). I found a good book on reflexology in the library, so when my oldest daughter and I have had enough of walking We can try to learn it . so we can massage each others feet. It is called
    "Reflexology" from the New Life Library by Rosalind Oxenford.Lorenz Books. 1997 Anness publishing.
    ISBN 1 85967 342 2. the charts look good and guess what I never knew this- if your feet are too painful to work on or damaged in some way there are pressure points and 2 charts to work on your hands! There are lots of times my feet and my daughters are just too-o-o tender for words. I'll let you know how it goes.
    Leslie 9220
  • Wow the support is way cool
    Got on the puter this morn and read all the posts since I was last here and was so happy to see all the encouragement going on. Way cool.

    To Leslie 9220, I have been diagnosed about as long as you have and there are times when the dh seems to show compassion and other times he is more curtious to strangers than his own wife. When I was first struggling with this and the drs said it was all in my head was the worst. My dh would give me this attitude like "get over it". That's when I wished something similiar would happen to him. But as the years progressed and I realized how devistating this disease is, I decided I wouldn't wish this on my worst enemy. So now I've decided that when we get a little older, I'll just hide his glasses and false teeth. Maybe his clean socks too. I hope the book on reflexology helps. If you don't have the hand strength to do your own feet, maybe a golf ball or something small that you could stand and put pressure on would work. Let us all know if it helps.

    We all have our bad days and the nice thing about this thread is maybe one of the others of us is having a not so bad day so we can offer sympathy and encouragement to them. I love this thread, I love this site, I love Amanda. Without her I would still be struggling alone.

    Treadmills and jacuzzis would make all our lives more bearable. Why can't they be tax deducted? We would have them for medical reasons but when I asked my Dr for a prescription she said she'd be wasting her time because only the "rich" get away with it. What's rich got to do with it? Do they think only the rich get fms? Give me a break.

    I am routing for all the ladies trying to get on disability. Unfortunately right now I can't afford to quit my job and try to apply because my son and son in law are out of work, but I tell you it's a real struggle to keep enough mental power to keep my job. Of course if my boss keeps coming after me because of the stress I won't have a choice. But I'm a pretty mule headed old lady and once I put my mind to something, nobody gets in my way. Kind of like a woman on a mission.

    Pamtanise, parks and recreation center for only $40.00 a year. Way cool. A bargin at half the price.

    Lifestar and Janet, you have been there for us, its the least we can do to be there for you when you need us. Even if you don't need us, I'll be around. This site is way too cool to miss out on anything. If ever I miss a few days, don't think I'm having a really bad flareup, just think, she's out there in her chainmaille dancing as if no one were watching.