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Posts posted by barefut

  1. Here at work, once again struggling to keep my lunch down. This is getting pretty old. I am so tired of feeling nauseous after every time I eat. Makes me not want to eat at all. All I want to do is lay down right now and I can't. There's only 2 of us here and no one to cover. At least I get to leave at 5:30 instead of 6:30. Only 3 more hours to go! :( Waiting for the Meclizine to kick in - if it even will.


    Thanks for listening (reading). I have to stop whining about it to my co workers. I'm glad you guys are here :D

  2. Penny,


    I LOVE it! Thanks for the huge smile this morning!




    That's a really good idea for fundraising you know! Especially if you start the bidding at about 100K. I would make a fool of myself for no less. (Still working out self-esteem issues and have some pounds to lose <_< )


    I already have my dance choreographed in my head. Waiting for a Happy Dance Day to practice it. Just to give you guys a visual, it starts out with me and a cane, trying to get out of bed. Then it goes into a little soft shoe shuffle and ends with me twirling my cane like a baton and tossing the out the window. Still picking out the music.


    I'll start the bidding on Jefa's Happy Dance at $100!

  3. Hi Lady,


    Good to see you post again. :)


    Glad you posted this topic as I have been wondering the same. My rheumatologist keeps asking me about muscle weakness, which I have, but then she asks if I think it's weakness from pain or just weakness. Well, there is always pain there so it's hard for me to say. I think she may suspect or at least is looking out for PM with me. The more I learn from listening to you and others describe your situation, the more I suspect it in myself.


    I started walking on my lunch break today and my legs felt like concrete and my feet and calves cramp. It only got harder, not easier. So I worry...


    I am thinking about joining a weight gym and working on building some strength in my legs and knees. Have you tried weights? If so, how did it work for you?

  4. I like Amanda's idea! Shelley, you go first and I'll be 18th.


    I'll be working on my dance in my 'spare time' HA-HA! :P When I have it all choreographed, I'll get my 11 year old do all the techie stuff.


    But don't you all hold your breath!


    I'll bet Razz could Dazzle us! Take it away Razzle Dazzle! :D

  5. Yay Smac!


    Good for you with the regular exercise. I wish I had the discipline.

    I am so glad to hear you are doing so well. I hope it lasts a good long while for you.


    Shelley, I'd like to see the sclero happy dance! Maybe we should post videos of our own versions and make it a contest. Who wants to be the judge? What could be the prize?

  6. Hi Amanda,


    I took Ami for awhile and I could not tolerate it at all. It made me so sleepy I could not function at all during the day even though I took it at night.


    It's possible that I may have done better with a smaller dosage but I just wanted off of it. I don't remember any benefits at all for me. But, that's me. I'm sure others have had positive results.

  7. Hi Ozzy ~


    Count me in too. I guess you can call them hot flashes but I hate to think they are menopause related - I think I am not quite that age yet <_< .


    Anyway, with me my face will feel burning up but the rest of me will have the chills and then the cold sweats. I will feel feverish but have no fever. It's such an icky feeling. Add the nausea and dizziness and then I just want to crawl under the covers until it goes away.


    I have that 6 - 8 week 'flare' cycle too! Sometimes they can catch me by surprise and overnight I will go from 'normal' functioning to actually needing a cane to get out of bed.


    About the ears: I have that clogged/stuffy feeling all the time and a constant ringing which sometimes goes really high pitched and I will have temporary (a few minutes) of hearing loss in one ear or the other. About 3-4 times a year I will wake up with vertigo - Wheeeeeee!


    So yes, I know what you are talking about and how do I handle it? I come here and complain - looking for sympathy and understanding and then I at least feel better for a little while. I haven't found anything medicinally to help or prevent these icky episodes.


    Hang in there, and know that you are not alone.

  8. Hi Gals!


    Thanks for sharing your experiences with me. You've made it a little less scary. If I can survive a bronchoscope and colonoscopy then I think I can survive a right heart cath - especially in the name of science.


    I still haven't received the paperwork in the mail yet so I don't have details about the study but it has to do with pulmonary hypertension.


    I just think about Lisa Bulman and all she went through when she volunteered for 'guinea pig' and I am inspired!


    Thanks Lisa :)

  9. Thanks Janey! HA! I was just reading the Medline info as you were responding.


    Thanks for your firsthand account. If I have a choice, it would seem easier for them to go in through my neck!


    I was asked to participate in a study at Virginia Mason and a right heart cath is required. I will let y'all know more about it when I do. In the mean time, I'd still love to hear more stories of first hand experiences.



  10. Hi Anderson,


    Welcome. I have been on Cellcept for 3 years this month. I do believe it has helped to slow the progression for me. I was prescribed Cellcept for interstitial lung disease and my lungs have remained stable.


    I have little or no side effects. I know others will chime in.


    Take Care!

  11. PEANUT!


    Oh my! I am crying too! We sure missed you and I have been waiting for this day forever it seems. It is SO good to hear from you!


    I can't believe all that you have been through - you are an inspiration!!!


    Keep up the good fight kiddo,


    We love you!

  12. Hi Ana,


    I too had surgery for my endometriosis because I was having trouble conceiving. My pregnancy test before the surgery was negative and at my post surgery check up, I was pregnant! :D doctor gave me a little scolding (with a smile on his face) because I disobeyed his orders....4 days after the surgery I felt great so.... :P


    Congratulations!!! This is meant to be for you. Sorry about the morning sickness. I had it with my first but not my second. Sounds like you will be in good hands with a high risk specialist. So relax and enjoy! I am happy for you!

  13. Amanda,


    Glad to make you laugh. But I'm serious! But 'becoming one with the pain' is really reserved for when something is unbearable and there either are no pain meds or you have exhausted all possibilities of pain meds.


    When I was a teenager, I was diagnosed with endometriosis after suffering for years with debilitating menstrual cramps. I would lie in bed for 3 days and cry. When all my tears were gone, I would get up and pace the house in circles telling myself there wasn't really any pain there. That didn't work. Then I'd go back to bed and meditate on the pain, concentrating on it until I became one with it and weirdly, this worked as a distraction and made it bearable for a short time.


    After my endometriosis diagnosis, I was prescribed loestrin and the cramps all but disappeared! I will never forget suffering through that and all that I tried to make it bearable. That level of constant pain is almost indescribable; right up there with migraines, kidney stones and childbirth.


    But the 'can't get out of my chair, hurts to walk, hands won't work, take the elevator, everyday pain' which frustrates you to tears and makes you wish pain medication were sold like catnip, requires some strategy to overcome and that's why this is a great thread! Thanks Shelley.

  14. 1 boy in sports age 11

    1 boy in sports age 6

    1 litterbox with cat

    1 deprived dog

    1 full time job

    1 house to clean

    1 yard to trim


    If not for these, I probably would not even ever get out of bed. Responsibility = distraction = pain management.


    Other natural methods I use are:


    Favorite music


    hot and cold packs

    long hot showers

    pacing myself

    treating myself

    the rare massage


    becoming one with the pain

    making pain my friend

    ignoring the pain




  15. Well, it took me 3 or 4 times eating ginger snaps, drinking ginger ale and recently eating some home made oatmeal ginger cookies for me to finally realize that ginger is a no no for me with my esophagus problems.


    With the latest home made cookie episode, I'd have been better off eating red hot coals.


    Just thought I'd pass it along for those with esophagus issues - you might want to stay away from ginger! :P

  16. Hey there Barbs,


    Well I am glad you were sedated after all! But sorry it was such an ordeal getting you to that point. Don't you just love that wonderful deep sleep? After my laporoscopy for endometriosis, I was so mad that they woke me up and made me go home! :lol:


    Stay warm!

    Love and hugs to you,