susieq40

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About susieq40

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    Silver Member

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  • Location
    Montana, USA
  1. A definate second opinion would be on my agenda! I have gotten really lucky with my lung doctor; she's the one that found the Scleroderma, but only because I had Interstitial Lung Disease. Which is fibrosis-scaring in the lungs. I had pain in my chest 3 years before and my regular doctor and RA didn't think anything of it, other than stress.....just put me on xanax and called it good. But that wasn't good...but I took their word for it....and well, now I'm on oxygen 24/7. If I'd just seen the lung doctor I may not have as bad of lungs now that I do. Maybe. Anyway, It's always good to be your best advocate. If something don't sound right or feel right, keep pressing onward! You know your body! Good luck and keep us posted!!! I'm in Montana, How long have you lived in Las Vegas? And Welcome to our familly!! HUGS HUGS HUGS!!! :emoticons-group-hug:
  2. Happy New YEAR one and ALL!!! Hope everyone will work toward a wonderful healthier new year. I know I'm gonna try to get on the lose the weight wheel again. Wish Me lots of luck. I gained after I lost, so almost starting over. Maybe, Hopefully I've learned my lesson.... I know workingout has helped me in many ways. I just wish it would take the pain away. Well Love and HUGs to All!!!
  3. Lynn, Not bad. Wish I could write like that.... :)
  4. Miocean, So glad you sailed through all your tests and had a great outting with your honey :emoticons-yes: I look forward to hearing what the doctor's have to say about the wonderful 6 minute walk I'll be crossing my fingers for good results. HUGS HUGS HUGS!! :emoticons-line-dance: :emoticons-group-hug:
  5. Susie So happy you had your gallbladder out. One less thing to worry about! Hope you are recovering quickly!! HUGS and LOVE!
  6. Peggy, Hugs coming your way!!! So sorry for all you're going through. I had the esophagus surgery, and it was the best thing I've ever done for my digestive system. I'm hoping you're still getting some pain relief...Keep us posted. Love and HUGS!!!
  7. Miocean, I'm so sorry your having so much trouble with exercise. Are you using oxygen when exercising? It takes time to build up to where you can exercise and feel like it's doing any good. Plus, I'm always exhausted after I exercise, that's why I do it before I go to bed, or do it before I take a long nap. My lungs are still at 54% and still have PH. It's really hard, and I thought it wasn't doing me any good. I've been at a standstill for losing weight, and it frustrates me to pieces to know that I am working my butt off and feel like I'm getting no where. But guess what....when I did my PFT test in Sept. my lungs are the same, but my fitness level is twice what it was when my lungs were better 2 years before.. I would have never thought that was possible. I bought a bike, and eliptical, and treadmill, so I could just go in the spare room and exercise without having to get all dressed to go to the hospital to work out. But I did graduate from the hospital program, learned to monitor my oxygen and also learned that taking it SLOW and STEADY!!! My motto...SLOW and STEADY wins the race. I will never be able to exercise at the level I would have if I would have exercised when I had good lungs! But it can be done!! Miocean, I feel for you I really do...I am where you are, except the kidneys. I too had horrible cramps in my legs while taking statins, once I quit doin that...things got a little better. I still hurt a lot, my goal is to do 10 minutes a day unless I'm flat on my back...and once I get started I'm able to do way more. I've built up now to 1 hr to 1 1/2 hours...every day. I love you and even though it's hard right now, this too shall pass, or at least that's what I keep telling myself..HUGS HUGS and more HUGS!!! Love LOVE and More LOVE
  8. :temper-tantrum: Feeling so nervous as it's my second IVIG session. This time we are doing it in 3 days instead of 5. Because of having kids at home. Too many days being gone. But last time, I had horrible restlessness throughout my WHOLE body. And insomnia, not able to sleep. I just hate hate HATE that feeling. And not even sure this is going to help anything for me. But the doctor said they were going to reformulate, and hopefully not get the same side effects. I'm still nervous! Think that sums it up. Anyway, I know this is a minor whine, but nonetheless. Hope everyone else is having a decent week. I'll be checking in. Hugs To All, Susieq40/Vickie :)
  9. Hey Red, So sorry to hear that you are now having Diffuse Sclero problems. How long were you just Sine Sclero? I'm still Sine, only diagnosed Sine since 2009. I sure hope things progress SLOWLY for you! Super Soft Hugs, :emoticons-group-hug: susieq40
  10. Miocean, YEA for you!!!!! :emoticon-congratulations: :emoticons-clap: :emoticons-clap: :emoticons-clap: :emoticons-yes: :high-five:
  11. Howdy Molly, I've been on Tracleer for a year. I haven't noticed any side effects yet, but do notice that if I don't take it the pain in my chest is worse...so hopefully it is working. :) HUGS and keep us posted :)
  12. Lynn, Nobody has put an expiration date stamped on our foot...so I say... live the best life you can...enjoy every moment, and do the special things you've always wanted to do...Life is short anyway, I thought I was going to expire in 2-3 years when I got diagnosed and told my lungs were horrible. It's been 2 years on the 18th of June, and I'm still here :) And working hard at staying, I have too much to do to think the end is near....We care about you and will be here for you!!! HUGS HUGS HUGS!!! susieq40 :emoticons-group-hug:
  13. Dawn, Welcome, sorry I haven't posted until now. Glad you are here. Best place for finding info, and support from those that know exactly what you are going through!! Hope you find the info you need. Again, Welcome to our little peace on earth! HUGS HUGS :emoticon-hug:
  14. Miocean, I'm a little late in the replying, but thinking of you, none the less!! I hope all is going better. I know there are days when I feel completely overwhelmed, time to just let those things that are less important...stay that way for a while...Hope things are going better!!! HUGS HUGS HUGS!! susieq40
  15. Tngrits, I'm so so sorry for your diagnosis. I have no idea what my PH level of involvement is, just know I make the best of everyday. They have, however, mentioned transplant, and have visited withthe transplant doctor in Seattle, and I have to lose 70 lbs. Down -25. Slow slow slow...but trying nonetheless! If there is anything I can do to help with support, .let me know. HUGS HUGS HUGS!!! :emoticon-hug: :emoticon-hug: :emoticon-hug: susieq40