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Everything posted by barefut

  1. barefut

    What a week!

    Oh man Lisa, I can only imagine.....!!! How do you eat? What do you eat? I am so sorry about Grace! OUCH! Sounds like she is a trooper though. I had my oldest into ER lastnight. He unjured his neck at basketball practice. All is ok - just a sprain. Kids! AGH! Hang in there!
  2. Hi Roger, I was in a similar situation with Cellcept and found out that the manufacturer has a patient assistance program which offers the medication for free for qualified patients. Maybe Enbrel's manufacturer has a similar program. Best wishes,
  3. barefut

    New Feeding Tube

    Oh Barbs - why can't they sedate you? Sounds unplesant to say the least. I'll be thinking of you Friday. Hang in there! Love ya,
  4. barefut

    I Cope?

    It was a Friday and I had a meeting before bank hours at another branch in town. When I went to leave, 'ole Betsy wouldn't start. I hitched a ride with a co-worker as she was leaving. My co-worker let me borrow her car on my lunch break to see if I could get Betsy started. I couldn't. Still, I wasn't panicking. I was sure that my mechanic would be able to just wiggle something and away she would go. After all I had just spent $2500 on her in the last year, almost everything was new, what else could be wrong? I dropped off the keys with him and said call me. When I didn't hear from him by late afternoon, I called him. I was not prepared for what I heard on the other end of the phone. Fuel pump. $700. That will teach me to be optimistic. You'd think I'd have learned by now, to always expect the worst and then be pleasantly surprised. Somehow, I had forgotten this; my way of life. Now here I was at work, with 3 1/2 hours to go until closing time, with a quivering lower lip and and tears about to explode. I heard myself say, "I can't do it. I can't do it anymore". I hung up the phone, walked into my co-worker's office, sat down and released the floodgates. She was such a sweetheart, gave me a big long hug and let me cry on her shoulder until I regained my composure. It felt like I was crying for more than just a broken down vehicle. I was crying for all that it meant for me to be without a vehicle. I was going to have to ask for help again, which to me means being a burden on someone, and just as I had begun to stand on my own two feet. Did it ever end? How in the world was I going to cope through this one?
  5. Wow Razz Thank you for your time! Thank you and your doctor so much for your answers. I still wish there was more on the scl-70 out there. When she says a positive outcome is means a worse prognosis and likely a more rapid course. Do you think she means the higher the number, the worse the prognosis?
  6. barefut

    I Cope

    As I lay in bed last night, I thought about coping. Kind of eerie how when I read Barb's last blog, the word cope kept popping up. Sometimes we seem to be on the same wave length. Then again, coping is a common thread amongst us sclerodermians so maybe I shouldn't read too much into it. When I was a sophomore in high school I made myself and my best friend a T-shirt for gym class that said on the front, "That's okay" and on the back, "I Cope". I think people liked it. Teachers and peers alike were always commenting on it. I actually still have mine, sort of a souvenir of the time. Last night I thought about that T-shirt and what I had to "Cope" with in high school compared to what I have to cope with now. I realize everything is relative. Being a sophomore in high school is no piece of cake, although at the same time, 16 was one of my best years ever. I wouldn't mind living 16 again. Especially if I could do it knowing what I know now. The old saying, "What doesn't kill us makes us stronger" comes to my mind when I think about all I have had to cope with over the past 15 years. I really do believe that. I do think I am stronger because of all I have had to put up with. And you know what? I am kind of proud of myself for surviving it all too. Survivors. We are all survivors. Not only of scleroderma but of life. I survived my mistakes and actually learned from them. I have had to learn to give myself a break for making mistakes too. Life is a continual learning experience. I have to look at it that way. Especially after having to cope with scleroderma. I ask myself, why am I supposed to be carrying this burden and what am I supposed to be learning from it? How am I supposed to become a better person because of it? Let me count the ways.......
  7. barefut


    Hey Razz, What a timely post. I also have experienced that stabbing pain just yesterday - out of nowhere, while just sitting. Hasn't come back, knock wood. I also wanted to ask you if you had read anything on the interpretations of the scl-70. Mine was 168 and judging by the normal range, that seemed pretty high but I was led to believe the opposite of you in that a higher positive didn't necessairly mean more involvement or more rapid progression on the way. And that the scl-70 is actually a specific indicator of diffuse sclero. Anyway, I have looked around online and can't find anything in writing on the subject. Just wanted to know if you and/or your doctor had any suggested reading material? Thanks! :)
  8. barefut

    Mad House!

    It seems Barb and I live parallel lives on opposite sides of the world. Only whereas Barb has a menagerie of animals making chaos for people, I have a menagerie of boys making chaos in my house. Looks like a bomb went off in here. I look around and just want to cry. I could pick up and clean up and it would look good, for about a half an hour. I hate living in a mess. No matter how hard I try, I just can't relax in a messy house. It's depressing. Even more depressing when I don't have the energy to pick up. Now that I have a neighbor coming here 3 days a week to watch the boys after school, it motivates me to at least wash the dishes and clean the bathroom. In one of my 'woe is me' posts, Shelley suggested inviting people over now and then to help motivate me to get off my duff and clean house for company. Although Shelley, of course, didn't say 'get off my duff'. It works. The shame of having a neighbor walk into the boys' gross bathroom really gets me into gear - although usually at the last possible minute. I have quit bothering so much when my sister comes over any more. She knows me, so who am I kidding cleaning my house for her? Speaking of sister, she came over this weekend and helped me finish painting my bedroom. We got my mattress onto a bed frame, hung my curtains and artwork and now I have a peaceful retreat. I don't ever want to want to leave it especially since the rest of the house looks like a war zone. Four boys went out to play! I'll see what I can get done while they're gone......Never mind; a knock at the door brings the neighbors and their dogs over. Chaos Central. Anybody have any spoons?
  9. barefut

    Why won't anyone listen ?

    Stiff upper lip...... and jaw......hands.....hips...........knees....... I hear ya Lizzie Take Care,
  10. barefut

    Ahhh Sweet Solitude

    A giant bowl of popcorn to go with my butter and salt, a glass of wine and the boys' leftover chocolate; who could ask for a better dinner? And I get to enjoy it in peace and without guilt while the boys are at the neighbor's house. Adult indulgences -- so few and far between. I want to go to a grown-up movie, even if it's by myself. The last grown-up movie I saw in a theater was Jerry Maguire -- or was it the Fugitive? Either way, it was like 11+ years ago! My co-worker's kids were at their grandma and grandpa's house for the night. She was meeting a friend for dinner after work. I can't wait until my sister, brother-in-law and my dad get settled here. I would love to be able to know my boys were safe and secure with family so I could go out for a night. But solitude for me is hard to come by and I am savoring every minute of it right now as I feel my arteries clogging and the cellulite forming from my healthy (NOT!) dinner. Well I guess the red wine will help to combat the bad effects the butter and salt has on my heart. What to do about the cellulite I do not know.....? Exercise? What is that?
  11. barefut

    For Serena

    Aww Barb, you are so sweet. Thank you for the confidence booster. I don't feel like I am trying to keep up with the Jones's with regard to parenting so much as I am with just about everything else. Sometimes I feel so judged but it's usually me doing the judging. I am my own worst critic. As I mentioned in my blog, I am interested to hear from other single moms with scleroderma. How do you do it? Got any tricks or insider information? Without any family close by, I have come to rely on neighbors who have really been there for me with regard to childcare issues as well as rides to the hospital in the wee hours of the morning. I don't think it's possible to convey to them how much they are appreciated. During one of her visits when my boys were being especially challenging, my sister asked me, "How do you do it?" To which I replied, "Prozac and beer". Of course I was kidding Seriously though, how do you do it? Calling all single moms and moms with partners too for that matter - tell me your secrets.
  12. barefut

    Slacker Mom

    Okay Barb, do you want to stop making me cry now? :P I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood. Then there's my two subtypes of being a Parent: 1. Single Parent 2. Single Parent with Scleroderma Yes, we are rare. I would like to bend the ear of other single parents with scleroderma. I don't know of many. Maybe I will put out an all points bulletin in the Sclero Den. I think I need to be relieved of some of my guilt by knowing I am not the only one who parents like me. For me, sclero mom equals slacker mom.
  13. barefut

    Karenlee, Tangelo, &Tru

    Yea guys, where are you?
  14. barefut

    A closer look

    Barb, I just read your latest blog through streaming tears. It was beautiful and you have a beautiful daughter. How timely too! This is the second time tonight I have been prompted to take a closer look at how scleroderma has affected my family. No matter how hard I try to carry on as if scleroderma isn't a factor in my life, or in the lives of my boys, it is there. It will always be there and it does change their lives too because it changes the way I parent my children. If I had a dime for everytime I have broken the golden rule of parenting, BE CONSISTENT, I could get out of debt. Hard to be consistent when living with a disease where you never now from one day to the next how you will be feeling. When I am feeling good, I feel in control. When I am not feeling good, I let my boys get away with stuff because I am too tired to fight about it. I also wonder what messages I am sending them when I let my bedroom become messier than theirs because my bedroom is my last priority in the house. How can I look them in the face and say, "Clean your room."? How can I sit on my 'lazy' rear and let the recycling and the laundry pile up and the yard go untouched and let the refrigerator go bare and eat out all the time because I am too tired to grocery shop and cook and clean the kitchen? This is not how I want my boys to be raised nor how I want them to turn out as adults. I constantly ask myself, am I really doing the best I can? Can I do better? At what expense? As for how Scleroderma has affected my friends and family, well I cannot say other than I know that they must worry. And I know that they have really been there for me when I needed it the most. My boys are still so young and my scleroderma is not visable to them so if you asked them how my scleroderma has affected their lives, my six year old would say, what is scleroderma? My 10 year old would have plenty to say about my parenting, I'm sure, but would not attribute any of it to scleroderma. Maybe I shouldn't either?
  15. barefut

    Been Missing you all!

    If he's in Rheumatology at Virginia Mason, then I'm sure he's in the same office as Dr. Buckner. I'm glad you are in!
  16. barefut


    Hi Georgette, Yes, there is no cure, only treatments for the symptoms. But promising treatments and new and exciting studies and discoveries going on all the time. You will find the best, most up-to-date information in the ISN newsroom. Also, our own ISN Assistant Manager, Lisa Bulman, is participating in a study herself. Personally, I have remained stable since being on Cellcept for the past 2+ years. Although my symptoms wax and wane with "that" time of the month as well as with the seasons. Fall/Winter of course being the hardest on me not just because of the cold and my Raynaud's but also because I tend to be more stiff and immobile, even in my face. I see you joined us in May. I am glad you have come here to ask questions. I wish I would have found ISN sooner after I was first diagnosed. This is a very informative and comforting group. I have to end with my favorite smiley becasue this is how everyone makes me feel here :D
  17. barefut

    See no Evil, Hear no Evil, SPEAK no Evil

    Hi and welcome sophiebun, Sorry I'm late in welcoming you! I am sorry you are having to deal with losing your voice. I know a little about how frustrating and even embarrassing it can be. I have ongoing problems with hoarsness and sometimes my voice diasppears altogether in the middle of a sentence - usually when I am talking to a customer at work or as soon as I answer the phone. <_< Clearing my throat usually ends up in a coughing fit. It's embarassing - and then people think I have something contagious and they sort of back away from me. Can't say I blame them as awful as I sound sometimes. Have you ever seen a scleroderma specialist? If your intern knows her stuff about sclero then she should know that we are full of wacky symptoms! I have not experienced problems eating hot foods but rather iced drinks and ice-cream and popsicles will make me cough. Sensitive esophagus from reflux I suppose. Do you have reflux problems too? Do you take anything for it? I guess your GI and endoscopy will tell you if there is any esophageal damage. Glad you are keeping up on it with your doctors. Keep us posted
  18. barefut

    Been Missing you all!

    Well welcome to the neighborhood! I see Dr. Jane Buckner, a scleroderma specialist at Virginia Mason Medical Center in Seattle. She is great. Please feel free to PM me if you want to know more Stay Warm!!!
  19. barefut

    Been Missing you all!

    Well Hi Omaeva ~ Good to hear from you. What have you been up to? Tell us more whenyou have the time.
  20. Yea Barb, I know what you mean. Thank goodness I only travel to the concrete jungle, I don't have to live there. I am blessed to live in a paradise with only the weather to complain about (and the occasional rubber necking tourist when I'm in a hurry) I wouldn't mind being someone's bit of fluff either. :D Do I get Tarzan along with that title? But a bit of fluff I 'aint. More like a ton of lard. Oh, you asked the significance of the Luke Skywalker cardboard cutout in my rheumatologist's lobby. I think Luke was the office manager's significant other. Little did she know he was already taken. We've been an item since I was 12. I still have all his magazine photos in a large manilla envelope. I have gained 20 pounds on Prednisone. Tapering down by 1mg a month will take forever. So will taking off this weight. Can't say it was worth it now. But that's also because I can still move somewhat. Oh the things we must 'weigh' in considering meds. :rolleyes: Autumn is in full drizzle and the leaves, like my fingers, are turning colors and falling off of their limbs. Time to dig out my 100 pairs of dollar store gloves. I learned early on to buy all the same color if I want to match for longer than a day. I am freezing so I have to make this another short blog and go warm up in the shower. I wish I knew how to relight the pilot light on the propane fireplace. Probably better off anyway; propane costs as much as gasoline! Stay Healthy, Happy Safe and WARM!!!!!
  21. barefut

    ISN YouTube Videos about scleroderma!

    Razz ~ That is So awesome! Yay for you and sclero awareness! I tried to use the "share" button and it wasn't working for me but when I figure it out I'm sending it to all I know. Keep up your awesome work!
  22. barefut

    A typical check up

    Barb, your 3 month checkups sound kind of like mine. A two and a half hour minimum, one way travel time, crossing 2 bodies of water, one by floating bridge that is usually open to submarine traffic every time I cross it and I must wait at least 1/2 hour. The other body of water crossed by ferry usually during commuter time. Then a treacherous hill climb through downtown traffic and dodging pedestrians running to beat the light. Finally to the top of the hill and into the parking garage. No sense even looking for a space until I get to the top floor. Then a 6 story descent by foot down the stairs to street level. Once inside, a wait in line to check in, then the elevator to the 5th floor where I cross a skybridge to the next building and go up the elevator to the 6th floor. Around the corner and a life size cardboard cutout of Luke Skywalker dressed in real scrubs greets me at the reception desk. Seeing my childhood crush waiting for me at the end of my long journey is totally worth it all. :D The gals at the desk promised me I could have him. They even offered to carry him down to my car for me. But he belonged to their boss and she wasn't there that day, so I was a little hesitant about taking him. Upon my next visit he was gone. :( Then yea, a 5 minute face to face with rheumatologist and it's all the way back home and all at a cost of about $120 for gas, ferry, parking and at least one meal on the road, not to mention missing work. So, I talked my rheumatologist into seeing me every 6 months as long as I was feeling the same. I can get my bloodwork done locally and they'll fax results to her. When I see my pulmonologist and have my PFT every 6 months, I see my rheumatologist too. The clinics have been great at scheduling my appointments all within an hour of each other. As far as complaints or questions to ask, I really don't have much to say anymore either. "Uhhh......I got nuthin' - wanna look at my toe?" So at last visit I showed her my painful pinky toe with the brownsih toenail (which I have concluded is a stubborn fungal infection not gangrene). She said, sometimes people just have it cut off. Knowing what she meant I teasingly said, "The toe?!" :o to which she replied, "No, the nail." <_< I think she thought I was serious. Now she thinks I'm a nut case. I was concerned about the healing process with Raynaud's and all but since she didn't seem at all concerned, I think I will have it cut off - sick of dealing with it. What a lovely discussion! :P
  23. barefut

    Hi, I'm back. More swallowing trouble

    I prefer the plums and the little weiners - how to get them out of the jar?!
  24. barefut


    So glad to hear that Jen. :D Thanks for keeping us updated. Did you watch the game today Peanut? Very disappointing......... :P The Hawks will pull out of it. You take care!!!
  25. barefut


    Thanks for the info everyone. It figures, I find something that works and I can't take it. :( I guess I could have researched myself but talking to you all is more fun. Canon - yea I am the barefut blogger but Barb is the one who does most of the rhyming. She astounds me. I am hoping it is only sleep deprivation that seems to be messing with my brain these days! :blink: :o