Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by barefut

  1. Thank you all for your stories and great advice. I think I will best handle my situation if I stop thinking of him as a potential date and just keep him in mind as a friend and the father of my son's friend and then just wait and see what, if anything, unfolds. That's gonna be hard to do because he is so sympathetic, kind, and sincere - qualities I haven't eperienced from a guy since my highschool sweetheart (he's also easy on the eyes) :rolleyes: Barefut
  2. Thanks for all the replies guys! All good advice. I believe in being totally honest too - sometimes I'm too open and honest. Okay, all of the time I am too open and honest. I can scare people off with it sometimes. And SOME people, I won't mention any relations, like to use it against me. I'm learning.... Keep the replies coming I think this is a good topic.
  3. Does anybody want to share any feelings on the subject of dating? Isn't it hard enough WITHOUT having a disease like scleroderma? On the one hand, you don't want to say, "Nice to meet you I have a life threatening illness....." Nor do you want to keep it to yourself until he falls in love with you and then spring it on him, "By the way....." and then have him pack his bags. There is someone I think I might be interested in but he already knows about my scleroderma and I don't know if he's interested in any kind of relationship with me or if he's just being kind and sympathetic. How could I tell? I can't. I also feel like no one would want to get involved with me because of scleroderma. It's ugly and disfiguring, and debilitating both physically and emotionally. Too much baggage. Your opinion/advice/experience? Thanks, Barefut
  4. I don't usually correct people but I've seen a few people type "b-a-r-f-u-t" and since that brings to mind something kinda gross :( , I'll have to kindly ask that y'all don't forget the "E" please ;) Thanks Barefut (as in Bare feet :rolleyes: ) Love you guys :)
  5. Jennifer, You go right ahead and MEET that single doctor! No man in his right mind would run from such a kind, generous, sweet, beautiful young woman as yourself. I agree on the handwashing thing. I'm a fanatic about it myself and with my kids and the kids I care for. Also I've noticed that ALL hospital staff use hand sanitizer about 400 times a day, after everything they touch. Congratulations on the new job. Hope it works out and hope you meet Dr. Mc Dreamy ;) Barefut
  6. Oh Hailee, I'm so sorry for your loss! What a devastation. I can't begin to imagine your grief at that time. I'm happy that your other children are doing so well. You must be proud. Well, I too had pregnancy complications. My first son was born 6 1/2 weeks early but was a big boy for his age weighing in at 5 pounds. He stayed in the hospital 17 days and we brought him home on the eve of the December holiday. He's had no long term health complications from being premature. My second son wanted to come early too but me and my doctor kept him in there and he was only 2 weeks early. I had trouble getting pregnant because of endometriosis and a twisted fallopian tube which I had straightened out and had a positive pregnancy test 2 weeks later. I had some of my first sclero symptoms when my firstborn was 6 months old back in 1998. By 2000 I had a "probable lupus" diagnosis. It took 6 more years and the development of Raynaud's and puffy hands to get my diffuse systemic sclero diagnosis. (sounds like I'm bragging about a master's degree! ) I've been curious about pregnency being a trigger for sclero. as well as the mysterious coincidence of so many people with lupus also having endometriosis. I was also curious if any diffuse sclero patients also have endo.? Thanks, Barefut
  7. Just fishing for things in common out of curiosity. How many had problems with their pregnancies? Premature labor or birth? Did your sclero symptoms rear their ugly heads before, during or after pregnancy? How many with endometriosis? Thanks, Barefut
  8. Wow, it's so nice to hear everyone's stories. So nice to read about long, healthy, happy, supportive marriages and kids and grandkids being appreciated and enjoyed. It's comforting and warms my heart to know you all have these things in your lives especially since you're having to live with scleroderma. It sort of balances the bad with the good. I think I'll remain a mystery for awhile longer. (I'm a mystery to myself most of the time! :P ) I'm not sure what I want to say about me yet. Thanks for all of your stories! Barefut
  9. Here is a recipe for playdough I got from my son's playschool. It feels SOOOOOOOOO GOOOOOOOD to knead the dough when its still warm and you can re warm it over and over in the microwave. It will last months and months in a ziplock bag. The Koolaid is only for color. You can substitute it with a drop or two of your favorite smelling essental oil. Have fun with it! :) 1 cup flour 1/4 cup salt 2 tablespoons cream of tartar 1 cup water 1 tablespoon vegetable oil 1 Pkg. Koolaid (optional) Mix all ingredients together in a non-stick skillet over medium heat, stirring constantly. Once it's a dough ball, remove from heat and let cool until warm. Knead away!
  10. Thank you guys for the detailed insight. It's just what I wanted to know. I guess I'm trying to prepare myself for the inevitable. I don't know what the abbreviations mean regarding the PFT's (I know that one ;) ) but I was told my diffusion rate was 67% 3 months ago. Down 3% from the previous 3 month checkup so I wondered why doctor said he didn't need to see me for another 6 months this time. I get short of breath when I get stressed, which is often (going through a divorce with 2 young kids) I've also noticed recently that I will get SOB in a stuffy room. I can't sit in my favorite, crowded coffee shop for 20 minutes without feeling SOB. BUT I can work up a sweat mowing the lawn and have no problem. Slow and steady is the key. I tried scrimmaging with my son's soccer team and I wasn't so much out of breath as I was hot and flushed in a very short time. I'm planning a trip back East to visit relatives and I'm worried about flying. I just know I will have problems breathing on the plane if I can't sit in my coffee shop for 20 minutes, how can I sit on a plane with the stale, recycled air for 5 hours? I had a mini panic attack once on a crowded flight. I just didn't feel like I could breathe and I started feeling claustrophobic. I had a hard time holding it together. This was 15 years before my diagnosis! Anybody else experience any of the same - SOB in stuffy rooms, with stress, on planes or flushing quickly with exercise? Thanks again for the wonderful insight. Barefut
  11. Hi Jennifer, I have microstomia (big word for small mouth) and I have one particular deep vertical line above the left side of my upper lip. It kinda looks like a scar almost. I can tell my mouth has gotten smaller just by looking :mellow: and I see a big difference when I look at photos of me 10 years ago. My rheumatologist says its caused by tightening of the tendons in my face. Its hard for me to look in the mirror. I try not to. You are gorgeous in your photo!
  12. Hi, I take 2000mg Cellcept with no side effect problems. You have to wean up to full dosage. Some people have sharp stomach pains in the beginning, mine were barely noticable and only lasted for about 5 minutes and only the first 2 days. You have to take it on an empty stomach. It's sole purpose as far as I know is to slow progression of the disease. I don't know of anyone else but me taking it. I think they have only recently started using Cellcept for scleroderma. It doesn't do much if anything for aches, pains and stiffness. (I've just gotten so used to living in pain that I've accepted it as a part of life.)
  13. How many get flu shots? Any side effects? Doc says get one, never had one.....I'm afraid it will GIVE me the flu, happens to my grandma every time.
  14. How many out there taking Cellcept? What dosage? What medications do you take in addition to it?
  15. Anybody on oxygen? Here's a barrage of questions for you: At what point or how bad off were you before you went on oxygen? Did your doctor insist on it or did you ask for it? Are you on it all of the time? If not, when do you need it most? How is life better for you on oxy? How is life worse for you on oxy? (is it a pain in the rear?) Did your family/friends treat you differently when they first saw that you had to have oxy? If so, how? Do you get stares in public? If so, how does it make you feel? That's all for now. Thank you very much for your time.
  16. Does anyone know where I can find an IBS specific diet in print? My foggy memory tells me I read about one somewhere. Has anyone tried one? How did/does it work for you?
  17. Lastnight I posted on the other site about self-hypnosis as a means of healing but couldn't get back on there to reply, that today I read a prediction that said, "This is a good time to train your own healing abilities as your sensitivity is high and you are more capable than usual of tuning into the healing energies."......Weird!
  18. Hiya, Good to be here! I have had a smallish, (about the size of a BB) hardish, whiteish bump under the skin on my forearm for many, many months, only bothered me above the eyebrows (in my head - ha!) ;) Well I woke up this morning and now its a bit larger, warm to the touch and a little red around the edges. Anybody ever have one of these? Isn't this site much neater? Love it! :wub: Barefut
  • Create New...