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Everything posted by barefut

  1. Jeannie ~ Congratulations! Thank you for all your support and thank you for volunteering your time to us. You are appreciated!!! :D
  2. Random Stuff

    If you dream about exercise, does that count? I woke up this morning thinking I was all firm and fit and healthy. What a rude awakening! Then I noticed the headache. And its raining. Silver lining: It's not snowing! My cat is trying to pet himself with the vacuum cleaner. My youngest is staring at me. "Why don't you pet your poor cat?" "Nope, I'm busy." Big One streaks through the house looking for clothes. He can't find any because they are all folded up in his dresser drawers. Little One discovers my grandpa's harmonicas. Yay. Could be worse; grandpa could have played drums. Cat sings along - or is he telling him to stop it? OOPS! He's telling him to stop it. Big one says, "What do you play if you can't play an instrument? Drums." Okay, so I actually went to an online match making service last night and filled out a questionnaire. With every group of questions I found myself criticizing the survey: "They just asked me the same thing in slightly different words in the last group of questions! How did I answer that one?" By the time I was done they said I was schizophrenic. Don't tell anybody. Silver lining turned to lead: It's snowing. 45 minutes later -- It's a whiteout with the most gigantic flakes I have ever seen! How can something so beautiful be so much of a pain?! There'd better be school tomorrow - I'm going to work if I have to harness up the neighborhood dogs and mush into town.
  3. Took Little One to the urgent care at the hospital tonight upon his second, "My ear hurts". This is the kid who holds the record for most ear infections as an infant. This is the kid whos ER doctor told me when he was 2 years old, "You know, ear infections will clear up on their own - you don't have to have antibiotics every time." Okay doctor, tell that to this screaming kid at 3 am! Anyway, I wasn't going to wait another day this time. I'm still feeling guilty for not taking Big One in sooner. Poor kid. I feel awful about that. He has not had the history with ear infections like my youngest and so I let it go until he had a sinus infection too! What kind of mom am I? That borders on neglect! Handcuff me and take me away. If there is a silver lining (and I am always looking for one) I got to spend some much needed quality time with my oldest this week. We worked on his homework together. He gave me refresher courses in American colonization and plane geometry. I learned a lot! We also had some good talks, played board games and laughed a lot. That kid cracks me up. I am a very lucky mom. I'm kind of a lonely mom too. I've been single for 3 years now. It is really hard for me to see all the happily married couples of my sons' team mates at practices, games and the award dinners. I feel like an outsider. I will admit, I am jealous. You can tell these couples are truly soul mates and completely devoted to each other and their kids. I want that. But I am so far from that. I haven't even been asked on a date - or asked anyone myself. This small town does not help. I am about ready to go online in search of someone. That's economical. I figure life is too short you know? I don't want to spend what little time I have left on this planet wishing I had someone else's relationship; waiting and looking for someone in this small town who might be compatible. And I don't want to play games either. I want to lay all my cards on the table, cut to the chase and get to the good stuff. I've always been a no nonsense kind of girl. Wow, this is starting to sound like a profile.....maybe I'll work on that.
  4. April 10th, screening appointment for the study. I need to score less than 60% on my PFT for diffusion in order to qualify. My PFT a month ago was 58% so, we'll see....... Been home all week with sick kid(s). Big One has a double ear infection and a sinus infection! I feel SO bad because in hindsight I should have taken him to the doctor sooner and I could have saved him at least a day or two of agony as well as maybe saved myself some time off work. I have no sick, or float days left and had to dig into my vacation as well. He is much better today now that he has a couple of days of antibiotics in him. Now, my head is filling up! I need to be done with whatever is coming my way by Monday because I can NOT miss any more work!!! Been trying to use the time off this week to catch up on house chores, though I feel like I'm spinning my wheels. I tackle one area only to come back to the place I just finished and find it a mess again. How does that happen?! I have enjoyed being at home with my boys this week but I hated to be missing work (The grass is always greener on the other side of the fence.) It was nice to be able to take Little One to his baseball practices, nice to make dinner before 7:30 pm and nice to help with homework without falling asleep. Lately I have been experiencing extreme sleepiness and fatigue at about 2:00 - 3:00pm everyday. It's like my body says, "Okay, I'm done for the day, time to go home." Working part time and getting paid full time hours would be a dream! I want to work. I like to work and I love my job but the hours are killing me and my family life. If I could only clock out at 5:00pm instead of 6:30 it would make a world of difference in my single momhood life. That extra dinner time hour is crucial family time with sports practices and games to get to, dinner to be eaten, and homework to be done - not to mention sleep! Listen to me complain - I'm LUCKY to HAVE a JOB! Feeling dizzy and feverish........better go now. Stay Healthy Happy Safe and Warm!
  5. Plaquenil

    Thanks for the question - I have wondered the same. I wish I knew why my doctor has never suggested it especially since 'we' want off the prednisone.
  6. Sclerodermia

    Hi All, Glad some of you liked my little made up name for us. I don't like to be called a scleroderma 'patient' or 'sufferer'. So Sclerodermian was the natural chioce. Karen and Razz gave me an idea when they mentioned that we should have our own town or country. And so "Sclerodermia" was born! So just for fun, help me build Sclerodermia - A Sclerodermian's Paradise. What would it look like? What would a typical day be like? I know one thing for sure, it would be warm and sunny all the time! :D
  7. Pulmonary fibrosis

    Hi Margaret, I have the same symptoms as mentioned above as well as I get overheated quickly when I exercise and it takes a long time for me to cool down and get back to 'normal'. I get the uncontrolable yawns when I have shortness of breath - I guess my body's way of trying to readjust. I hope your friend's daughter has a good news visit!
  8. Just venting

    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
  9. Just venting

    You guys are sweet. And so was the virtual ice-cream! So good, I had to have the real thing yesterday. Thanks :D
  10. What is the name of the thingy that clips to your finger to measure O2? Does anyone have one and where can you get one cheap?
  11. Symptoms/Study

    Been having some gastrointestinal and pulmonary issues that have been bothering me more in the head than in the lungs or gut. Makes me wonder what is going on in there. Of course I just had my 6 month check up and failed to mention the gut stuff. The shortness of breath which I did mention to my pulmonologist, didn't seem to phase him. It bothers me however, since I haven't had to deal with it for such a long time. Maybe it is just a flare? Maybe it is to do with my fall upon my ribs? The fact that it only occurs with exercise makes me worry about pulmonary hypertension. My pulmonary doctor asked me to participate in a study. A right heart catheterization is involved. Sounds scary but folks I talked to here who have been through one assure me not to worry. I try not to worry but when I see that possible complications include death, I wonder if it is being irresponsible of me, as a single mom, to put myself at risk? Or is it irresponsible of me as a sclerodermian to not participate? I'll bet there's more of a risk of me getting killed by a bus while crossing the street than during a right heart cath. I do feel a responsibility to participate. And if I gotta go, I'd rather go in the name of research than in the name of a bus. One purpose of the study is to evaluate the effectiveness of non-invasive screening methods for pulmonary hypertension and pulmonary arterial hypertension to see how well they can predict and confirm diagnosis in scleroderma patients. Right now, a right heart cath is the standard method of testing for PH/PAH and it is invasive and expensive. Since RHC is so invasive, it is only used to confirm diagnosis not to screen for it. The other purpose of the study is to see how many scleroderma patients develop PH/PAH. The study will be performed in about 70 hospitals in 11 countries with hopefully 500 sclerodermians. Each patient will be followed for 3 years. Results should be concluded in the year 2013. So that's it. Pretty cool. So, in light of my recurring shortness of breath and the anxiety it evokes in me, and since early detection of PH/PAH is important in treatment and prolonging life, I think this study couldn't have landed in my lap at a better time. It's probably no coincidence that my doctor got the "green light" less than an hour before my appointment, at which time he asked me. I want to thank Shelley B) (smart smiley) for clearing my brain fog :huh: (confused smiley) in the identification of the thingy that clips onto your finger and measures your oxygen saturation level. OXIMETER! I knew that once. :( Really. I did. ;) I gotta get me one of those.
  12. You know....the thingy

    Thank you Shelley! B) For clearing the brain fog :blink: I could not, for the oxygen in me, think of OXIMETER! :huh: Now I will never forget (until next fog) :huh:
  13. Feeling better these days

    Penny, I LOVE it! Thanks for the huge smile this morning! Shelley, 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!
  14. Bigs

    Good Sunday morning all, Jammie Day. Catch up on housework and laundry day. Reload the weekly pill container day. Rainy Day. Procrastiblogging day! :) Wish I had a laptop so I could curl up in my recliner and blog away instead of sitting at this hard, cold, uncomfortable desk in the kitchen. Basketball season comes to a close and Baseball tryouts are next Saturday. My favorite sport of the season. Not to brag, but my boys have been blessed with exceptional athletic abilities which makes watching them even more fun for mom. Big One will be trying out for Majors and it will be Little One's first baseball season (T-Ball last year). I am starting to stress about how I will get them to practices and games and am hoping they will have their practices on the same days and their games on different days and that my boss and co workers will be kind enough to let me off early enough to see their games or else I will go crazy! I got flowers for Valentine's Day! I haven't gotten flowers for Valentine's Day since my high school sweetheart worked at a florist. My flowers came from my Little One's Big Brother, of the Big Brothers Big Sisters Program. The card said, "To the best mom in the world". That really made my day. It was a Saturday and I was working (as usual) when the delivery came. I had a customer so I couldn't read the card right away, even though my customer urged me to. Just so y'all don't get the wrong idea, he's much older than me and happily married. But it was kind of fun wondering who sent them in those few minutes of anticipation. Both of my boys have been perfectly matched with Big Brothers. They are pretty amazing people. My oldest and his Big just had their one year match "anniversary" in January. Over the past year they have gone to movies, swimming, trail bike riding, scuba diving, and built a tree fort together in the backyard. Later this month he is going to take Ryan flying. He is a commercial pilot and former flight instructor. They also have started building a sailboat. Little one's Big is a retired businessman, married, with two grown boys of his own. Together, they play all kinds of sports, go exploring downtown, and have started a lower level addition to the tree fort. They like to ride with the top down in his Porsche. Yesterday he took both my boys to their basketball games in the Porsche with the top down. As I followed them in 'Ole Betsy, I laughed out loud at how my boys are riding in Porches and flying airplanes! Who would have thought ?! Well as much as I wish they would, those chores aren't going to do themselves....
  15. Polymyositis/Scleroderma overlap

    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?
  16. Feeling better these days

    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
  17. Feeling better these days

    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?
  18. Amitriptyline: How was it for you?

    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.
  19. Flare?

    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.
  20. You Know It's Bad When...

    I wish I could get away with that at work! :( Part of my job is to remember faces and use names. I'm doomed. Might as well apply for disability right now.
  21. Right Heart Cath

    Give me the scoop. I want details. Thanks! :)
  22. Right Heart Cath

    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 :)
  23. Right Heart Cath

    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. Thanks,
  24. Goals

    Short term goal: stay in my jammies all day. Long term goal: stay in my jammies all day every Sunday. It's 2:30 pm and so far I have accomplished my short term goal. Even went out to breakfast in my jammies. Our local cafe gives customers 1/2 price breakfast if you show up in your jammies - but well that's once a year in February and it wasn't today, but I didn't care. And nobody else did either. I like that in a town. Of course my jammies are flannel pants and a tee shirt so I just blended in with the rest of the crowd. Biscuits and gravy, scrambled eggs with bacon. When the waitress asked me if I had enough gravy I had to think: Yes, I had enough gravy before you even put the plate in front of me. The proof is in the pudding or rather in my thighs. The pudding is in my thighs too. I need to come up with some new goals.