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Everything posted by janey

  1. janey

    Fecal Incontinence/Bowel Control

    Hi Jeni, I'd like to join the others in welcoming you to the forum! As you have already witnessed, it's a very friendly and informative place. You've been provided some great links and information so I'll just add one thing. Try to see if there might be a correlation between occurrences and diet, meds, stress or activity. By tracking the incontinence with these things I found that stress and certain foods (e.g. chips, whole grains) were trigger points. As a result I've been able to greatly reduce the occurrences. Good luck Darlin!
  2. janey

    Cardiac Catheterization Test

    Kris, Welcome to the Sclero Forums! I'm glad that you have joined us. I'm sure your experiences in dealing with scleroderma will help others, so please don't hesitate to share them. Like Jeannie said, the Right heart catheterization (RHC) is so bad. Here's a link from drugs.com that explains the quite well. Right Heart Catheterization Of course, most procedure aren't near as bad as they my sound when you read about them. The RHC is one of them. As Jeannie said - for your personal comfort, please let them know if you are sensitive to cold. I wore gloves and socks, and the nurses made sure to keep me covered with a blanket as much as possible. Afterwards, you get a nice rest because you have to lie still for a few hours while the insertion point heals. It is a procedure that is performed A LOT, so they got the procedure down pat and have seemed to make it easy and comfortable for the patient. Things will be just fine. By the way, thanks for signing up for a study on PH! That's a brave and generous thing.
  3. janey

    Four years!

    Congratulations Jeannie! This calls for a weekend of celebration!
  4. janey


    KayTee, I can't believe it's been February since I checked out this thread! I'm so glad that you enjoyed Wild Swans. I agree with everything you said about it! No I haven't read Balzac and The Little Chinese Seamstress - it's on my list now! I checked it out and it looks quite interesting. I've been reading like a maniac this year. I'm having a horrible time getting to sleep at night, so it's not unusual for me to read until 1 to 2 am. I just finished The Shadow of the Wind by Carlos Ruiz Zafón. Excellent book! I'm now reading The Girl with the Dragon Tattoo and half way into the second chapter I knew I was hooked. Looks like another late night tonight. :blink:
  5. janey

    Thanks for the information

    I fought the nighttime reflux thing for years, but with some lifestyle changes have managed to keep it under control. If I do start coughing when I lay down that immediately tells me to add another pillow. I currently start off with a wedge pillow, a regular pillow underneath it, and 3 more pillows arranged strategically on top of the wedge. If I wake up around 3 am, I usually can remove the top pillow (which is vertical). The trick there is to remember to throw it on the floor and not on top of the hubby. I sleep on my left side, because sleeping on my right side makes me cough. I quit eating 3 hours before bedtime. Those are just the main ones. There are so many things you can do, but the important thing is to stop it before it starts. You don't want to aspirate into the lungs, and, you'll get a better night's sleep. I'm glad that the extra pillows helped and that you remember reading about here! Since this does seem to be a starting problem for you, you might want to check out our page on living with GERD. You might identify a few other things that could help you. Have a great night's sleep!
  6. janey

    Hair loss, help!

    Patty, I too, suffered hair loss, a great deal of it, when I was on Methotrexate. Many of the immunosuppressants are really just low dose chemo drugs, so they can cause some hair loss. I changed the hair style a couple of times so that the thin hair wasn't quite so noticeable. I've been off methotrexate for 3 years plus now and my hair has grown back plus some. The other day while taking a breathing test, the technician commented on how thick my hair was and what pretty hair I had. I was thrilled! So I would probably chalk it up to the meds rather than sclero. The good news - it does grow back!
  7. janey

    Best treatment for scleroderma

    Chimama, Jeannie just about said it all so I'll just add a little to what she has already said. My sclero came on very, very fast, and luckily, I was diagnosed quickly. My rheumatologist put me on the standard first line treatment at the time. It was methotrexate (low dose chemo or immunosuppressant) and low dose prednisone. It did the trick and slowed the disease progression very quickly. In the 7 years, I have had to switch drugs for various reasons, but have never had to really consider something as aggressive as stem cells. Usually doctors, and definitely insurance companies, don't even consider something like stem cell transplant (SCT) unless other avenues have been tried and failed. Personally speaking, if my condition had continue to progress as it did in the beginning even after having been put on methotrexate, I would probably have pursued SCT, but, thank goodness, I didn't have to. As Jeannie mentioned, there is so much to consider with treatment, lifestyle, and things like "where to live". I too live a mile high and my lungs don't really like it. They like sea level so much better, but I manage where I am and, like Jeannie, absolutely love my life here. So we've made the choice to make it work. Lots of decisions come with any chronic illness. Just be sure to explore your options so you can make the decision that is best for you.
  8. janey

    I'm happy today because....

    Felicia, Welcome to the forums!!!! Sorry to hear you are having problems. Please make sure your doctor is aware of what's going on. We'd love for you to post a introduction of yourself to the Main Sclero forum. Everyone would love to get to know you. Joelf - Congratulations on your new position and awesome physical achievement!!!!! Also glad to hear about the success of our friend. You are having a great day!
  9. janey

    feeling better

    Patty, I'm so glad to hear that you and hubby had a nice evening out! Now that you know it is doable, you should make it a regular date. A marriage should never get too old for date night. Since you can't use a knife - fish was a great idea! thanks for much for sharing!
  10. Hey Darlin', Welcome to the Sclero forums. I'm sorry that your mother is going through the emotional baggage that typically comes with this disease. Please give her a hug and reassure her that those who love her now will continue to love her and, in many cases, love her more. That's certainly what I have found to be true. I've also developed new friends that are so close to my heart and so involved in my life that it's like we've been friends for a lifetime!
  11. janey

    Update on blood tests!

    Summer, Prevacid is my heartburn medication (a little stronger than Prilosec). I've been taking heartburn medication for 7 years, so my tummy stays pretty deleted of natural acids. On the vitamin C thing, I wondered about that myself. Ever since diagnosis, I have avoided the Vitamin C because of its characteristic of strengthening the immune system - something we don't really want. So, in being honest (of course I won't tell my doctor this :)), I'll take my iron when I eat something that is naturally high in vitamin C - like strawberries, or tomatoes. I'll only take the 500 mg supplement if I haven't eaten anything acidic. In reference to malabsorption, my GI doctor says that may be the cause of my problem as well as leaky veins. I do not have bacterial overgrowth, but the GI guy said that because scleroderma is a fibrosing disease, I may have mild fibrosis in the stomach and intestine preventing the iron absorption. At this point, we don't know for sure, but since the iron supplement has brought up my iron levels, we're just hanging in there for now. I sure feel better and that's what I care about. I sure hope you find something out, but more importantly, I hope you find a good and easy solution. Keep us inform Darlin.
  12. Do infections facilitate the emergence of Systemic Sclerosis? A number of infectious agents have been proposed as possible triggering factors in SSc. It is very likely that the infectious agents are cofactors in a specific hormonal and environmental setting that mounts an immune reaction, which leads to the emergence of the disorder. Grossman C. (PubMed) Autoimmun Rev. 2010 Sep 20. (Also see: Causes of Scleroderma: Infections) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. janey

    Update on blood tests!

    Summer, I don't have dark stools either and my rheumatologist and GI thought I might be bleeding internally as well. Thank goodness my test didn't show that. A couple of comments from my doctors that might help - my rheumatologist has me taking 500 mg of Vitamin C with the iron because the prevacid rids my stomach of acid and iron is absorbed best in an acidic environment. I try to put at least 2 hours between the prevacid and iron/Vit c combo and an hour between iron and any of my medications. Iron can inhibit the absorption of other meds. The second thing is that scleroderma can cause malabsorption which can prevent the iron from being absorbed. SO many things! What to do, what to do! :emoticon-bang-head: I hope you have good results if you start taking iron!
  14. janey

    Scleroderma Systemic

    Lynda, I'm going to ditto the others in saying that you shouldn't ignore this allowing problem. You should have it checked out. Choking on liquid can cause you to aspirate which is definitely not good for the lungs. I've had the swallowing test that showed I had Oropharyngeal dysphagia. The speech therapist that was there recommended that when I swallowed, to tilt my head down, then swallow. This has helped me tremendously in swallowing pills and to prevent choking on liquids and foods. Very simple, but it works for me. Please talk to your doctor and let us know what you find out.
  15. Localized Severe Scleroderma: A Retrospective Study of 26 Pediatric Patients. Correlation between various treatments and clinical endpoint showed that systemic therapy lead to a better outcome: in particular, methotrexate appeared the most effective drug, capable in halting the progression of the disease and sometimes inducing its regression. M Beltramelli.(PubMed) Pediatr Dermatol. 2010 Aug 26. (Also see: Treatments for Juvenile Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Lisa, :emoticons-yes: How many times can I say this - YOU ARE AWESOME!!!!!!!
  17. janey

    New here, need advice

    Chimama, Welcome to the Sclero forums! You have found a great place for information and support. This forum has members with various types of scleroderma with many different complication combinations. As has already been mentioned, scleroderma as well as other connective tissue diseases are different for each person. At this point, things have been very slow for you so let's just keep a positive mind and believe that things will stay on that course. Just stay in touch with your body, but don't dwell on it. Live life every day to its fullest, exercise, eat right, enjoy life and laugh, laugh, laugh.
  18. janey

    It happens....

    Patty, I have to laugh at this one. I had no idea what an ID ten T error was. So I googled it and found that it's a "user error" or as Wikipedia states "a problem that is attributed to the user's ignorance instead of a software or hardware malfunction. " :VeryHappy: One smart little daughter you have there!
  19. janey

    Just call me Jamie...I'm bionic now!

    Amanda, I'm thrilled that it went well!!!!! I'm confident that you will be one of those that definitely feels the difference. I was. Once the drugs wore off and the hubby took me for a walk down the hallway, I felt a HUGE difference. Couldn't live without it. The hubby calls me his little borg. You're going to do great!
  20. janey

    Right hand sympathectomy

    Lisa, I am SO GLAD that you are already seeing the difference and that the experience was mild in comparison to what you have been through for years! Hooray!!!!!! The stitches look nasty although the cuts themselves look very neat. I have to admit that I'm ignorant when it comes to knowing what a sympathectomy actually is and what they do and the physical aspects of how it helps to decrease the symptoms of Raynaud's and ulcers. Looks like I have a little research to do. If you feel like typing - could you provide a "brief" explanation? I'm just thrilled for you! :emoticons-yes:
  21. janey


    Andrea, Like many of the other responses, I really don't have an answer to the finger pain and redness problem. I am glad to read that the pain is subsiding. I hope it continues. During my first year, my fingertips would turn red and were extremely tender. If I bumped them, it was quite painful. But that just disappeared. I was on 10 mg of prednisone along with 25 mg/week methotrexate for 3 years. I felt the effects of this combination a couple of days after starting. That was really the last time I had the "extreme" fatigue that I had prior to diagnosis. After 3 years I was weaned off the prednisone and have been prednisone free for almost 4 years!!!!! It's been great. My rheumatologist refused to go beyond 10 mg/day on the prednisone because he was aware that Prednisone has been associated with renal failure in scleroderma patients. You might want to read about it on our Steroids page. Be sure to check out the article in the Renal Crisis section. Before increasing your dosage, please discuss this with your doctor. I hope you find a solution to your pain and fatigue.
  22. Depression: The Precursor of Disease. The intensity of depression seems to correlate with the severity, morbidity, and mortality of the disorders to which it predisposes. Julian Lieb, M.D. Newp. The People’s Press. 08/16/10. (Also see: Depression) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Scleroderma often left undiagnosed. Research conducted by the Irish Raynaud’s and Scleroderma Society found that the average time between diagnosis of Raynaud's and scleroderma is 6.7 years. In most cases, these diagnoses were made by rheumatologists, however there is an extreme shortage of consultant rheumatologists in Ireland, which can make diagnosis even more difficult. Deborah Condon. Irish Times. 04/07/10. (Also see: Difficult Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Thanks Jeannie for this article. This article again points out the importance of "early diagnosis" which I feel is necessary for any of scleroderma's complications. Shortly after diagnosis I was given an ECHO which showed normal heart function; but another important test that should have been performed was an EKG. In some very rare cases such as mine, scleroderma can affect the conductive (electrical) system of the heart. An EKG can very quickly and in a non-invasive manner identify conductive problems such as heart block, bradycardia (slow HR), and tachycardia (fast HR). When I developed complete heart block 1.5 years after diagnosis, my cardiologist made the comment that we might have been able to have caught the conductive problem earlier with an EKG and corrected the heart block (of which there are 3 levels) before is became a complete heart block (level 3). So I guess my point is that I should have done my homework a little better and suggested an EKG to my rheumatologist. Of course, it turned out that he didn't know that scleroderma could affect the conductive system of heart until it happened to me!!!!!
  25. janey

    Is this pre-scleroderma?

    Krassau, Welcome to the Sclero Forums! It sounds like you been dealing with a lot of various symptoms over the years. It's interesting that your rheumatologist says that it may be early scleroderma. Did he give you any indication of where to go from here? I'm not a doctor and have no medical experience, so I'm not qualified to suggest whether or not you have scleroderma based on your symptoms. Many of your symptoms can be caused by so many other things, that I can see why your rheumatologist can't be sure. As you probably already know, scleroderma is a very difficult diagnosis. As a result it is advised to see a scleroderma specialist. Do you know of any, or does your rheumaologist have one that he could recommend? Here is a link to a couple of abstracts on scleroderma criteria. Scleroderma is so different for everyone, so I don't know if anyone actually meets all of the criteria. For example, I don't have skin involvement nor joint pain, but I do have Raynaud's heartburn, lung involvement and heart involvement. So keep pursuing a diagnosis of some kind, especially if you feel that it's not fibro. It's only fair that you know what's really going on. Please keep us informed as to how you are doing and if you have any more questions. Again, welcome!