Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by barefut

  1. barefut

    How Long Have You Been On Cellcept?

    Meg, I am in pretty much the same boat as you. I have diffuse and my DCLO has stayed between 67% - 70% for the past year. My rheumatologist told me at last visit that since I have remained stable, pulm doctor may want to (or agree to) switch me to Imuran after I see him at next 6 mo check up in Sept. They both know of my financial crisis and that I can't afford to pay the 30% my insurance does not cover. I have gone back into debt paying for it this past year and a half. Anyway, I am a little worried about being a guinea pig too! What dosage are you on now? Maybe we can quit at the same time together and publish our own study! I have Roche's patient assistance program applicaton ready to take to doctor to fill out but am afraid I will not qualify. A year ago my rheumatologist said that Imuran would probably be the next choice but they REALLY wanted me to stay on Cellcept. (That made me feel like an experiment.) If they are both immunosuppressants, I wonder what big the difference is besides the price. Do keep us posted on you! Thanks, Barefut
  2. barefut

    Diet For Gi Issues

    Hi Joel, Did you have any other symptoms besides gas and weight loss? I keep getting needle like stabbing pains in my upper abdomen as well as diarrhea. I have heard of bacterial overgrowth but not sure what to watch out for. Thanks, Barefut
  3. barefut

    Losing The Wrinkles!

    Lizzie, I find myself in front of the mirror in tears from time to time. We need to grieve the way we were. It's not being vain. Take Care, Barefut
  4. Well YEEEEEEEEE HAWWWWWWWWW! Lovin' good news all the time. Pretty simple solution to a serious problem. Wonder why that is...
  5. I second Shelley and the others! Soooooo important! Best Wishes, Barefut
  6. barefut

    Dave's Update

    Welcome Back Dave! So glad to hear from you again. I can't imagine going through what you did! But ya gotta do what ya gotta do right? Here's hoping the worst is behind you now and you can go on to live a long, happy, HEALTHY, normal life! Take care and stay in touch. Love, Barefut
  7. Hi Kamlesh, Almost 10 years ago, my doctor told me my health insurance company wouldn't cover Prozac for me until I tried a cheaper antidepressant first and if that didn't work for me then they would ok Prozac. This was before Prozac had a generic brand. Anyway, I was put on Paxil and I had panic attacks with it. I don't remember what dose I was at but I'm sure it was a low one. That is the only side effect I remember. I just got my Rx for Fluoxetine today - will pick it up tomorrow and can't wait to feel better. I know it will take at least a month to kick in. I hate the dry mouth too. Better stock up on sugarless gum! :P The first time I went on Prozac was when it was brand new. I lost 20 pounds without trying. I'LL TAKE THAT SIDE EFFECT! It probably won't work the same on this 41 year old body though. Hope you get your meds straightnend out very soon. I do feel for you. Depression stinks. (can I say that?) Hang in there, Barefut
  8. barefut

    Health Insurance Saga

    Found out that Washington Basic Health Plans only covers Cellcept at 50%. SO, even though my premimums with Basic Health may be only $30/month, my Cellcept would cost me more than my COBRA premium! I have Roche's Patient Assistance Program application in hand to take to rheumatologist for her to fill out her portion and sign. It was like pulling teeth to get them to even mail me the application. It's like you have to apply for an application!!! So now I am scared to death to send it for fear of being denied. I wish there was a person who's job it is to provide fast and free counsel to people in my desperate situation. Someone who I could sit down with who knew all the answers and all I had to do is explain my situation and they would say, "Oh well this is what you need. This is the best thing for you, sign here, you're done." I wonder what would happen to me if I just could not make the COBRA payments anymore (which I can't - sister did and I won't have that every month!)and lost my coverage and then had to be on the waiting list (yes, there's a waiting list too!) for Basic Health and I could not pay for ANY health care or medications. Is there a safety net for me? Would the hospital charity programs cover someone without any insurance at all? I am ready to just throw in the towel - seriously- and call it quits on this insuraqnce nightmare completely. The stress is killing me! I have been to my car insurance agent and she was so un helpful with regard to health insurance - yea, she sells it but she can't tell you anything about it. Wish I had Steve Kobrin working for me on this one.
  9. barefut

    Total Fatigue

    Leaving for my doctor appt in a hour. Gonna discuss my fatigue and depression and ask about antidepressants, B-12 and anemia and fill him in (again) on my ILD. It's hard knowing more than your family practitioner about your scleroderma. My doctor likes to just ramble on and on through the whole visit asking questions and actually answering them for me himself before I can get a word in! I end up having to talk over him and I never know if he heard me. We'll see how it goes....... B
  10. barefut

    Total Fatigue

    Since I had to move my PFT, Pulm doctor and rheumatologist appts out from Aug 7 to Sept 18th, I just made appt with my primary care provider. Soonest I can get in is next friday. For the past couple weeks I have been SO fatigued most of the time. Gonna have him check for anemia. Also tell him how I wake up feeling like I never slept. I'm afraid of having to go in for sleep study for apnea. Also gonna get that Rx for Prozac. Also, still worried about left middle finger. Gonna call rheumatologist about that one on Monday. In the meantime, anybody have any secrets or magic tricks to beat this fatigue? Leaving in the morning for a one night stay at a cabin on a beautiful peaceful lake and I can't even drag my rear into gear to pack for it. :( B
  11. barefut

    Newbie/not Diagnosed Just Yet

    Hi Lunchlady, I am one of those initially diagnosed with "probable" lupus back in 2000. I am glad and you are lucky to get such a quick diagnosis (Not lucky to have lupus but, well, you know what I mean!) So many people are frustrated for years without a diagnosis and like me, start to believe they are hypochondriacs. I was so relieved (at first) to have ANY diagnosis at the time! I am also glad you have found a support group in your area. A good online support group is The Lupus Site. I spent a few years over there before my sclero diagnosis and then the moderators referred me to here. They didn't kick me out or anything! I still go back and visit time to time. Also so sorry about your mom. You are doing the right thing being proactive! Take Care, Barefut
  12. barefut

    Nausea Is Making Me Nauseous!

    Hi Ann, I had my gallbladder out in May 2005. Yes, the pain is terrible! My gallbladder pain and symptoms mimicked heart attack symptoms and when all tests on my heart came back normal I of course went for years without a diagnosis for gallstones too. Then one day I had a gallbladder attack that sent me back to ER with pain that felt like when I passed kidney stones, only higher in my upper back. I remember the ER doctor saying, "I am impressed with your level of pain" I said, yea, I'll be impressed if you can make it go away! An ultrasound found a ton of stones. I was lucky to be scheduled for surgery on a cancellation only 2 days later. The surgery was a piece of cake and I went home same day. One thing you should know that I didn't expect is that you may not get back to "regular" bowel movements for up to 6 weeks after. My surgeon told me to eat yogurt. All will go well for you. I'll be thinking of you on the 20th. Take care in the meantime - hope you have some painkillers handy! Love, Barefut
  13. barefut

    Health Insurance Saga

    I actually think it would be easier to just move to England and become a citizen.!
  14. barefut

    Health Insurance Saga

    Pretty new avatar Sweet. (So was the previous one :) ) I did read up about the community health center on the Peninsula. The closest clinic to me is Poulsbo. It seems like what I have now though, in the way of my family practice doctor. My clinic is connected to our local hospital, Jefferson Healthcare (formerly Jefferson General Hosp.) and they have a sliding fee scale program which I just got approved for 100% charity. They refer me to specialists at Virginia Mason and they also have a sliding fee scale. I have to reapply for charity every 3 months. I guess it makes sense that if I am approved for 100% charity for whatever my insurance does not cover, that I would be approved for the same if I had no insurance at all. But it is a scary thing to think of going without any insurance for this reason: What happens if/when my financial situation changes and I CAN afford health insurance, and DON'T qualify for chairty anymore and then I can't GET any health insurance because I had a lapse in coverage, or I am an individual, or whatever other reason they can dream up? Then it pays for me to be poor and there's no incentive to crawl out of my hole. That's what turns otherwise good, law abiding citizens into criminals because they go to work "under the table" and don't report cash income just to make ends meet and I am not comfortable doing that. No one has ever mentioned to me that there are people to help me with this insurance stuff. I am going to call them tomorrow and see if they have anyone who has all the answers. If the clinics you mentioned do then I would hope that there is someone at our hospital with a little time and a lot of knowledge to spare and share. All this stuff just makes my head spin! Sorry about the personal-ness of this post everyone. Probably not anything in it helpful to anyone else, but it sure feels good to vent about it all. AGH! Thanks as always, for your help and support Sweet! Your screen name fits you well. :) Love, Barefut PS The movie "Sicko" starts playing in my town next week. I want to see it - then again I'm not sure if it would be good for my health! (I'd probably blow a gasket! :rolleyes: )
  15. barefut


    Glucosamine. Anybody taking it?
  16. barefut


    My first migrane came to me in 1990. Until then I had never experienced any pain like it though I had had frequent "regular" headaches all my life. I Had a friend take me to ER where they kept asking me if I hit my head and they couldn't take "NO!" for an answer. They shot me in the rear with pain medication and sent me home. After that I had maybe 2-3 /year until I had the mother of all migranes after getting off the plane from my honeymoon. I could not open my eyes and could not walk without assistance - I swear I was even in and out of consciousness from my dad's house to the ER because I only remember bits and pieces. When I got home I was down for 4 days. After my "probable" lupus diagnosis I assumed my headaches were"lupus headaches" They always started at the back of my neck and creeped over the top of my head. I always used (800mg ibuprofen and) heat because I figured try to relax it away which never did work. One day I decided to try ice and wow it did the trick! Now at the first sign of pain I pop the ibuprofen and relax with an ice pack on the back of my neck and I'm usually good to go in about 1/2 hour. Have not had a full blown migrane since. What do you take for them? Have you tried ice? I agree that autoimmune disease must play a part in migranes. Mine were not "typical" migranes in that there was no food or beverage trigger, I never saw any lights and I was not particularly light sensitive. It just felt like my skull was ready to explode and I think I would have felt better if it had. I wanted to die! Hope you don't have another one! Take Care ced. Love, Barefut
  17. barefut

    Problems Breathing!

    Hi ced, I have that cold air feeling too, usually in the morning. Feels like my esophagus is raw and air passing over it makes me want to cough. I have to take short shallow breaths until it goes away. Take Care, Barefut
  18. barefut


    Hi Jefa, Here in the States you can buy Glucosamine at our warehouse stores, 250 tablets for $18.00. My dog's vet recommended it for him so I bought the people kind and was wrapping it in cheese for him. Then I found a liver flavored doggie kind that he eats like candy. Now I have this huge bottle and was wondering if it would do me any good - more sepcifically, could it do someone with sclero any harm? My rheumatologist has never mentioned it to me. The bottle reads: "Glucosamine and MSM is an effective supplement combination that helps support maximum flexibility, range of motion, joint lubrication and maintenance for healthy cartilage and connective tissue." Sounded good to me... After about a month my dog stopped limping so I know it does him good. Barefut
  19. barefut


    Congratulations on your sucessful treatments! I always love to hear sucess stories. Thanks for posting and do keep us posted. Barefut
  20. barefut

    Total Fatigue

    Thanks for all the great replies everyone, Sheryl, I did have my kids pack themselves and my oldest brought everything out to the car and I loaded it. They did great. I'm not on any meds for itching. Lisa, I run out of steam by about 1:00pm and always sit in my recliner to rest while the kids play outside. I have nearly fallen asleep many times. A 20 minute power nap would do me wonders but the kids always come running in and wake me just as I'm falling under. Nan thanks for the good vibes :) Westcoast, I'm betting that I'm not anemic and if I am, it's probably only mild. I've never had a problem with it in the past but then again, you never know with this disease. Thanks for the love Jen :) Jackie, It's not the study itself I'm worrid about, its the time and expense of it all that would mess me up and I just can't imagine wearing a cpap at night. How does anyone sleep with that thing on? Susie, yes I have been SOB lately and am worried that progressing ILD may be the cause of some of this fatigue as well. Hate that I had to move my appts out to Sept! Thank you andyko, we had a good time, wish I could live there! Hello lunchlady, I had to tell my kids we couldn't hike to a waterfall this weekend. It was only 1 1/2 miles roundtrip but I knew my body couldn't do it. We settled for a shorter easier hike. I hate it when they have to miss out on fun stuff because of me. I have also simplified my home and yard as much as possible. It feels good getting rid of stuff. I have been guilty in the past of letting other people's problems become my own and have been doing a good job lately of not doing that anymore and it feels pretty good too! You are right in that it takes a conscious decision - I had to THINK before I would usually tell people, "Oh I can help you with that..." I do pace myself, taking breaks throughout my day. Lately I can get a shower, get the kids breakfast and then I'm down. I traded pet sitting with my neighbor which is starting to drain me because I am watching her 3 dogs, 1 cat and 2 horses plus watering her plants for 3 weeks and she will only watch my one dog for one week while we fly back to visit my dad end of Aug. (his birthday present to me). Kinda unfair.....but I needed her. Maybe I can squeeze a few more favors out of her... Well gotta go feed some kids and critters.........and try to squeeze in a shower. Love you guys, Barefut
  21. barefut

    Total Fatigue

    Thanks Peanut and Shelley, I recently quit making to do lists at the beginning of the day and instead started making accomplishment lists at the end of my days. It has helped reduce my feeling of being overwhelmed and made me feel good about what I DID do. Of course I still have to write myself "reminders" of important things or else I would forget a lot of pressing stuff. Shelley, come to think of it I have been watching the news a lot more than usual lately and it IS draining! I turn it on to see the weather and suffer through the first 20 minutes, flipping back and forth to see which station will air the weather first before I go to bed. Dumb. And you know what else? I was actually inspired to paint today and I thought of you. I truly am not an artist and have no talent at all but I still wanted to paint just to see what would come of it. But I was so drained I just laid there on the couch until I had to break up a fight between my boys - again, and then the feeling went away. I only have kids' craft paint and watercolors anyway. I would SO love to up the pred and don't think it didn't cross my mind Peanut but I wouldn't do it on my own without doctor's approval. I also would SO love to simplify ( I have a bumper sticker on my car that says simply, "Simplify") and I am working everyday to get to where I need to be in order to get there - am I making any sense? Right now my divorcing situation is anything but simple and is turning out to be the most complicated divorce amongst anyone in my divorce support group. So I'm guessing it will be awhile before I can enjoy a simple life. I am hoping this weekend at the lake will infuse me with some energy. Barefut
  22. barefut

    Dr. Furst

    Hi Jennifer, A woman in my divorce support group recently told me about Dr. Furst. She has a friend with sclero who has seen him. I didn't know he was from Seattle. I hope he moves back here too! Go listen to him speak! B
  23. barefut


    Yay Jen! Sounds like you went ahead and had them all done. Let us see photos if you take some. Love, Barefut
  24. barefut

    Mentally Exhausted Newbie

    Hi Yogabear, (cute name) Just wanted to say welcome and sorry you are feeling mentally exhausted. Been there, doing that... Easier said than done, but try not to worry too much. What tests have you had done? Has your rheumatologist looked at your nailfold capillaries? My rheumatologist had me pretty much diagnosed by the symptoms I told her about (Raynaud's, swollen, puffy hands, body aches, GERD), my obvious (to her) small mouth and my nailfold capillaries. Then my scl70 came back positive and CT showed "ground glass" in my lungs. BUT for 6 years I had a "probable mild lupus" dx complicated by my doctor's aparent assumption of hypochondria - or so I was treated. Off to new doctor and a sclero diagnosis within 6 months. So, I guess sclero was just lurking around inside of me and took 6 years to make itself obvious.....or else I could have been diagnosed many years sooner. I am very lucky that sclero has not progressed farther than it has with me. Very lucky. I heard an inspirational story from another woman with sclero in my town. She said she knows another woman with diffuse systemic sclero who's grandmother had the same and lived into her 90's. I'll leave you with that positive note. Take Care, Barefut
  25. barefut

    Test Results...

    Oh Elehos, how frustrating! I wonder if your rheumatologist ever thinks about how doctors diagnosed back before all these fancy tests......maybe symptoms? It's always the case that by the time my appointments come around, my symptoms have gone into hibernation mode only to wake up again 2 weeks later. Sorry you haven't gotten any answers yet, and you've waited so long for that rheumatologist appt too. You seem to have a good attitude about it. Hope you are feeling well. Love, Barefut