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Everything posted by KarenL

  1. Karen, Just a thought, it could be related to the thing in your mouth?! Same side? Just thinking... Karen
  2. Hi Karen, I have those too, they come and go in two specific places in my mouth. My rheumatologist looked and said they are inflamed telangiasticas! Some people on this list have talked about them bleeding so I know they can come quite close to the surface. What I do when they flare is to use listerine and peroxide. One after the other, twice a day. I also learned a trick when I used to get millions of canker sores, I take 1000 mg of lysine every day and up to 4000 mg during a flare. If I miss a day or two, the sores come back. Good luck with this I know how bad it can be. Oh and theres an OTC mouth wash I forget the name but that helps a lot too. Ask your doctor about the lysine though, it's a lifesaver. Karen
  3. Hi Pat's Kid, I'm so sorry to hear that your mom is going through such a painful time with no help. I lost a finger to gangrene and know first-hand how horribly painful it is. It took me months to find the right doctor who finally gave me a pain patch that I was on for 8 months. They also did a thoracic sympathectomy which severed the nerves that cause the pain in the fingers. I don't know if there is a similar operation for toes, but the doctor who finally helped me was a digital surgeon. I don't live near you, but hopefully someone on this list will know of a doctor. Good luck I hope you get some answers soon. Karen
  4. Hi Ani, There are a lot of bowel/stomach/digestive problems that go along with scleroderma. My doctor is doing a study right now on celiac disease and sclero, because me and four other patients have developed celiac during sclero. I went on the celiac diet and my bloat went away. I also had ulcerative colitis and had my colon removed so I know all about digestive involvement. But that pregnant belly thing went away when I got wheat out of my diet. It takes awhile to get a diagnosis, but in the meantime, it can't hurt to cut out wheat as an experiment. Good luck, Karen
  5. Thanks so much ladies. Saying my ABC's now. Sigh, one more thing to do...trying not to feel down, Karen
  6. Hi all, I am starting to feel the swallowing trouble and also my jaw and face and mouth seem to hurt when I eat something repetitive, like popcorn at the movies. All that chewing! It just feels like I'm all of a sudden very conscious of the act of eating. The chewing, the tongue pushing the food to the back of my mouth, the throat trying to open to accommodate the food, and then dry throat, where the food sort of sticks for a second and little pieces seem to get left behind on the walls of my throat. yuck. Sorry to be so graphic. Plus I have this urge to open my mouth really wide, to stretch it. I have always had that 'tic', but it's getting worse. Anyway, is this a new progression? something to be concerned about or to tell doctor? Is there anything to do for it? I tried finding the facial exercises on this site, but the link did not take me to anything helpful. Any suggestions? Thanks in advance, Karen
  7. Thanks ladies, I think I remember that when you take statins they have to monitor these things, maybe that's the answer. Even though I don't have high cholesterol, I'm on a statin because I've had three stents so they want my choles. as low as can be. I'll have anice weeken and wait for doctor. Thanks for your comfort and reassurance. No sense worrying. Karen
  8. In my recent blood work, I have low readings on ALT and GFR-V. I googled them and found that they are related to liver and kidneys. can anyone shed any more light in relation to sclero? My doctor is away till next week and I'm a little concerned. Thanks in advance, Love Karen
  9. Albuteral? I never had that! I can't imagine they would give you such a powerful drug without knowing your entire drug inventory. How strange...anyone else have that during a routine PFT? Karen
  10. Hi there, Read up on reflux. There's a ton of advice there (on this site) for dealing with this symptom. Often it's one of the first scleroderma symptoms to show its head. Over the counter you can get zantac in 150 mg. Take it before bed with a tiny amount of water. Avoid food and drink for three hours before bed and sleep with two pillows. That should help. If not, I'd ask the doctor for a prescription. There are several and you may need to try a few before you get relief. This is a scary and yuckky symptom, I hope you get some help. Karen
  11. Hi Georgette, Yes, yes and yes...I get all of the above. Oh the hot thing...I thought I'd love it comapred to the cold thing, but it's horrible. I am teaching a technology camp this summer and I get so amazingly hot on one side of body only. I had a sympathectomy that only worked on one side, so all of my hotness and sweat is only on the left! You could cook an egg on my face when it happens, and we've been in a hot humid wave here in the North east. Flares too, yes. Sometimes I forget I'm even sick, then bam, for a week or so I can barely get out of bed. It too shall pass. Good luck, feel better, Karen
  12. Well, this is all amazing. I. like Tru was exposed to the mosquito truck, but my mom used to scream, "close the windows". We lived in Secaucus NJ, where the bugs are legendary. My parents were abusive emotionally and physically. At age 18 I left home and never looked back. I put myself through college and got married to my party buddy out of fear of being alone after college. Then I was married for 20 years to an alcoholic. Got ulcerative colitis during my third pregnancy 1991, while he worked away from home for three years. Had my colon removed after three years of suffering because I didn't want to stop nursing the baby. In the year after the operation I started with Raynaud's. I had many more family problems which I won't go into here. I was hospitalized for a thoracic sympathectomy. Then, at my new job I fell on ice and broke my ankle and was laid up for two months. Got married, that summer '04, and the next year had gangrene, got diagnosed with sclero, lost the tip of a finger, and had my first heart attack. '05. Sclero progressed, I got laid off and have been out of work now for two years, then two years later I had two more heart attacks! That was last year, '07 and now it's menopause, what fun!! Stress? Yeah maybe. :P Thankfully, I'm an amazingly laid back person. I take pretty much everything in stride. What can you do? Anyway, interesting stories, we are a bunch of amazing people for sure! Peace, and I don't say that lightly! Karen
  13. Thanks Sara! Peanut is sorely missed here, she is a bright light in our little world and she is a great fighter. We're all rooting for her, tell her hi! Karen :)
  14. Hi Nan, I use it all the time. You take about a half inch and apply it to the base of the finger palm side. Then, gently wrap it with a band aid and leave it there as long as you can. I do mine mainly at night, right before bed, so it stays in place. Also if I get a headache, I'm asleep! :) Good luck, and don't stop doing it, the problem will come back. Peace, Karen
  15. Hi Leslie, Welcome back. What you describe is so normal. I can totally relate to your depression and anger over your body's betrayal. I too get frustrated with the weight issues, the having to be warm, to body consciousness, etc. It's a daily battle sometimes. You are not alone. And it's perfectly normal to feel this way. My doctor calls it "reactive depression". I am on just a 10 mg. dose of prosac, it's supposed to help with the raynaud's but I think it's also helping with the depression. I have always been against anti-depressants, but in our case I think they may be warrented. B) Also, a therapist can be helpful. You will come to some sort of acceptance about this disease and all of the lifestyle changes it entails. It stinks--I know, but we are better off than many. We have a lot lot lot of symptoms to manage and it's rough! Give yourself some slack and set your mind and day to taking good care of YOU. Rest when you have to, exercise gently, eat healthy. And meditate. Find little 10 minute segments of the day to concentrate on healing thoughts. All of these things help me get through and sometimes I cry, but mainly I keep on keeping on as best I can. Try not to look back at what may have been and try to live the best way you can NOW. That's my best advice to you, and to myself. It's an ongoing battle sweetie, welcome and keep reading on here, everyone is on your side and understands what you have to live with. We all have our ups and downs and help each other through it. Peace, Karen
  16. Hi Itch Queen! (Tru) :rolleyes: Prednisone is an anti-inflammatory and my son who is horribly prone to exzema and allergies goes on a mini-dose every spring. While he's on it all is well, so it makes sense that when you go off it, you itch. My hives seem to be disappearing, but my fingers are still puffy, red and a little shiny. I've never really had this, but maybe it's the nexy phase of the sclero? Anyway, it's just all too much most days. I try not to focus on it but some days it crashes down on me. Some days I feel like my husband totally forgets that he's not dealing with a 'normal' woman here, and I forget too. Until I try to act too normal, ie, if I try to hike or shop and work in the same day. I get angry sometimes at the limitations. I turned 50 this year and I'm pretty happy and mentally stable, but I feel like my body is in mutiny and I hate that I can't perform physically as I want to. I wasn't expecting to need naps for another 30 years or so!! My parents travel all around the globe, even camping in the desert and riding camels. It exhausts me to think of it! Oh sigh...I'm having a poor me day---YUCK, thanks for being there Karen
  17. Without a doubt, going to bed with an empty stomach is most important. It's best to stop eating at 6:00 PM for the most part. Also, alcohol, caffeine and chocolate as well as ice cream and other dairy are the worst culprits. Always eat tiny meals and take an antacid like the highest dose of Zantac right before bed. Taking your prescription acid reflux meds exactly as your doctor prescribes (such as, with or without food and at exactly the same dosage, not too much or too little) is very important. Take your morning dose as soon as you open your eyes, before coffee even. Another thing that's safe that I have found helpful is digestive enzymes. Good luck, it's so scary to wake up like that not to mention gross tasting! Peace, Karen
  18. Great news Tru! It makes me know there's help and hope. I am a little hesitant to apply, but I think I will have to as even part time teaching is a lot for me--spoon wise. My poor hubby is pulling out his hair trying to pay the millions of bills and we are in trouble. A check a month from SSI would help. Thanks for your persistance and keeping us posted. Karen
  19. Welcome Razz~~ I totally relate to the laid back attitude! I notice that I drive more peacefully now too, besides not cleaning a whole lot. :rolleyes: Nothing upsets me very much as a whole. I realize that life is short and it's ment to be enjoyed slowly and conscientiously. Hope you enjoy the comraderie here, it''s the one place where we truly understand. Peace. Karen
  20. This past weekend I drove five hours across the state for a whirlwind visit to my two college kids. I took my 16 year old and the visit was really great, we hiked a bit and all in all it was not stressful at all. I did get overly tired hiking, I haven't done it in awhile and even though the ground was flat I was sweating profusely and way more tired than anyone should have been. While there I broke out in hives and my fingers are still quite swollen and itchy, like shiny sausages. I also seem to be having trouble with my eyesight, like I'm wearing the wrong prescription or something. Oh, and did I mention the exhaustion! I just want to lay and lay and lay. I know that sometimes we attribute all sorts of things to sclero, but what do you all think? Do I call the rheumatologist? Is it worth it? Is this normal for even this short trip? Did I just use too many spoons? You never know what's the disease and what's not! Let me know what you think... Peace, Karen
  21. Hi again Karen, I used to be like you and in so many ways I still am. You are trying to control this disease and make it bend to your will. You are trying to spare other people who love you from feeling scared and trying to make it less scary and less intense for you as well as for them. I totally get it. BUT---you are tobbing yourself of the opportunity to have people care for you and may be avoiding some things that you need to do. Imagine if one of those people who love you was in your position and they were trying to make it "less intense" for you by maybe leaving out important issues, symptoms, or treatments? My husband is on top of this disease sometimes to the point of annoyance. I too have always been private and independent, I drove my self to the emergency room twice in my life, before this man! Once I had severe ulerative colitis and once a heart attack! That's not so smart! Sometimes our prde and our care for others clouds our judgement for ourselves. It really sounds like you need an advocate with you. Ignore them during the exam! My hubby sits quietly and lets the doctor and me talk, and then if he has questions he asks. We talk on the hour and a half drive there and back, write down questions and discuss it all. Then, we follow through and if I get sick he reminds me to call the doctor. If he gets too intense I ask him to back off a little and if I get lacidasical he makes me do my thing. (Take your meds, vitamins, exercise, sleep etc.) It's very very good for him to hear what really going on with me, this way he understands my exhaustion, my lack of sexual desire, my aches and pains, my tears. Sometimes, you have to let someone in. They WANT to be there! You are such a good hearted sweetie pie, Karen, you deserve to be taken care of. It doesn't make you weak, it makes you stronger! Peace girlfriend! Karen
  22. I would suggest that you start investigating online. You cab look up all of those blood tests and find out what they mean by knowing the 'reference range' for each. The lab should be able to give you a result sheet with their reference ranges on it, but it's always informative to see explanations online. I google "ANA blood results" and lots comes up. Knowing what the tests mean will give you questions to ask and at least some control over the fear you face. Best of luck, Karen
  23. Cramping at night can be caused by many things. One thing you can do is take magnesium and potassium at bedtime. My doctor also recommended stretching right before bed and drinking tonic water for the quinine! It's working. When you get the cramp, if it's a typical charlie horse in the back of the calf, try pointing your toes to the ceiling and pressing your heel away from body. For me I get a double whammy because my big toe cramps and points straight to the ceiling! OWWWW, then when I try to push it down, my calf cramps causing the opposite muscles to contract! Many nights I have sat crying on the side of the bed, but the stretching/tonic and potassium are helping. Good luck! karen
  24. Hi Karen, I kinda know how you feel, but not how you act. I guess my feelings are why even bother knowing, when there's nothing that can be done anyway, as Tru says, it is what it is. Thankfully, my husband comes on every single visit and asks all the hard and scary questions, and my doctor is the best of the best. I sit there sometimes checked out like they're talking about someone else! It's not easy being us! Keep the faith and do what you can. Don't beat yourself up for that you don't do, it sounds like you get done what needs doing. Treat yourself well. Peace, Karen
  25. Hi Tangelo I think it's a combination of aging and sclero. I have a terrible time with stairs too. I went to physical therapy and found out that I have severe arthritis behind the kneecap. The very best thing we all can do is a regime of stretching exercises. It's amazing how effective they are when you do them every day! I know it's so hard, given all the body parts we need to attend to, but those achy joints make me feel old too and I'm only 50! Good luck Peace, Karen
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