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About red

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    Upstate New York State
  1. red


    Hi Marsha, is today the day you start your plaquenil? I've been on it for a few years now. I remember it mildly bothered my stomach - queasiness - when I first started it, but that side effect went away within a couple of weeks. My rheumatologist warned me it would take up to 6 months to feel an appreciable effect, and yes it did seem to take that long for me to notice a gradual lessening of my fatigue issues. I did stop working during that first year on it, so, at the time, I wondered whether I had less fatigue because of the plaquenil or because of my new lifestyle's slower pace. Found out for sure this past year, when I stopped taking the plaquenil on a trial basis -- sure enough, after less than a week off the plaquenil, the fatigue rebounded big time, back to sleeping 12+ hours a day and still having difficulty keeping my eyes open in between naps. Took about a month back on it to get back to my "normal" energy levels, still not great, but lots better than off it. Didn't do much, if anything, for my pain levels though, unfortunately. I get my eyes checked every six months, no issues so far. Hope it works for you, with little or no side effects! Hugs, red
  2. Hi friends! I too suffer from this embarrassing and quite inconvenient problem. Both my rheumatologist and colon specialist have told me that my poor muscle tone in the rectum and anus are due to scleroderma, similar to the poor motility that affects my esophagus. While I've found some benefit from an over-the-counter fiber supplement that my GI doctor recommended, as well as biofeedback muscle training, I still have days where I just know it's not a good idea to leave the house! Yesterday I saw my GI for my annual visit - he mentioned a new treatment for fecal incontinence called Solesta. It's basically an inert, injectable material that bulks up the walls of the anus and narrows it to prevent waste from leaking out. He did say he's not sure yet if it would be helpful for me, but advised me to discuss it with my colon specialist to see if it's an option. Has anyone heard of it? My concern would be..and I will try not to be gross here! ...but what if the scleroderma makes our muscles so weak that we wouldn't be able to expel a movement through the narrowed passage? I don't want to be in a worse situation that I'm already in! amberjolie - I'm glad you're getting some relief with prednisone! I always feel better on it myself, but my doctors don't want me on it long term... Right there with you all, red
  3. Congratulations on your promotion Jo! Thanks for doing so much for all of us! Hugs, red
  4. Hi Cantuse, congratulations to you and your wife on the new baby! I'm sure he will fill your days (and nights!) with much joy! I can't advise you on on the SCL-70 as I've always tested negative on my antibody screens, but I have been taking Plaquenil for over a year now. Mildly upset my stomach for the first month or so, but that went away quickly. I do get my eyes checked every six months, and so far, no adverse effects there. Effect-wise, it's definitely not a "wow I feel great now" difference, but after around 6 months there seemed to be a gradual lessening of my fatigue, and now overall I have less days of drop-dead, in-bed fatigue than I used to have. My lung function tests have stabilized over the past year too, at around 75-80% -- before Plaquenil, I'd dropped from 100% down to less than 80% over the previous year, so I'm sure it's helped with the systemic inflammation. I'm disappointed that my joints and muscles don't feel better though.... I'm seeing my rheumatologist next week for my 3 month check up; he spoke last time of possibly adding a new med, leflunomide (Arava). It seems like it's a hit or miss with meds, while some meds might work well for some of us, others respond better with different meds, and unfortunately, a lot of the meds take quite a while to see an effect, so it's a lengthy process to get a medication regime in place that's working well. Hope you are lucky and Plaquenil works well and quickly for you! Keep in touch when your son is napping and you have a few minutes! red
  5. Peggy, so sorry you've had such a time these past months, hope this surgery will greatly relieve your symptoms. I had a fundoplication 3 years ago which stopped all my horrible burning-on-the-inside and aspiration attacks. Yes, recovery from the surgery was rough and a new and different way of eating was an adjustment, but well worth it as a trade for the reflux. Sounds like your doctor has researched your situation fully and that the gastric bypass will be your best chance for a great result. I'll keep you in mind next week too, wish you the best for a speedy recovery! :emoticons-group-hug: red
  6. Hi Mando, sorry to hear of your painful flare up, I can empathize as well as I've suffered for years with first, the shoulder pain, starting in my early 40's, then the hips joined in at around your age. I think it's part of the connective tissue disease (reminds me of a song that has a line "I'm too young to feel this old"!) I can't take the normal NSAIDs either because of esophageal issues, but am on a Cox-2 inhibitor (a newer form of NSAID which has supposedly less GI side effects) - have taken it for a few years now without recurrence of my esophageal ulcers (but I did have a fundoplication which has certainly helped the reflux problem). I was also given a topical NSAID cream to use, but it didn't help me, maybe you would have more success with that. I had cortisone injections to both hips a few years ago, when I was diagnosed with bursitis of the hips - did help a bit. If you do get an injection, make sure you rest for at least 24 hours afterward - it will help the cortisone "stay in place" as my physical therapist put it -- giving you a better and longer benefit. Then I did around 6 weeks of physical therapy. Pain came back within a year, but I did have a reasonable short-term period of relief. Heat pads, whirlpool baths if you have access to one, may help you too. Also, I have a script for lidocaine patches, which help the pain in my wrists a lot. They help less so on my hips, but even partial relief is welcome! You mentioned you had surgery on your shoulder? May I ask what you had done and how you fared with it? My orthopaedic surgeon has recommended a total shoulder replacement for me, I'm still trying to decide if it's worth going through... Hope your doctors can help you out, Red
  7. I'm afraid I have to echo Craig's sentiments. The SSDI is not for the faint of heart; it's a long, frustrating process, almost impossible for an ill person to handle alone, and takes so long to be approved that most anyone without resources such as long term disability insurance, or a hefty savings account, would be bankrupt before they see any SSDI check! Before I applied, I researched SSDI thoroughly as to requirements, the documentation I would need, had the backing of 3 of my doctors (primary, rheumatologist and pulmonologist), had numerous testing results, xrays, multiple surgeries, evidence of 35% decline in lung function, joint deterioration in several joints, nerve conduction studies showing deficits in my hands even after carpal tunnel surgery, diastolic dysfunction as evidenced on ECHO (stiffening of the heart); months of physical therapy over the past 5 years, with only minimal improvement in range of motion of hands/wrists, hips, shoulders; vocal cord tightening as evidenced on laryngoscopic video; manometry evidence of "absent" motility of both esophagus and rectum/anus....I could go on and on... my lawyer said my medical file was by far the most voluminous and thorough documentation he had ever seen. I applied in August 2010, was promptly denied in October 2010. I appealed with a lawyer, and waited until December 2011, when I was granted a hearing before a judge. A few months before this hearing, I was examined by two of the Social Security doctors - a demeaning and humiliating experience to say the least - I was assumed to be a liar, and treated like one, from the moment I stepped into any SSDI office. Their doctors had not one scrap of my medical file nor history of illnesses (which by then had spanned more than 10 years), saying they were only there to assess my functional abilities. Both doctors had to help me up from the floor, after they requested that I squat ( my knees gave out and I couldn't get back up), yet both their reports stated their exams were essentially normal, except for only minimal restrction of motion in only my left shoulder! (If they had even bothered to look at one xray of my shoulder, they would have seen from it that I couldn't possibly have near normal range of motion - there is so much bone destruction, I have been advised by my orthopaedic surgeon I need a total joint replacement). At my hearing last month, even the judge readily admitted it was clear that I was not able to perform my nursing job of 17 years, but asked why I thought I couldn't do a desk job. I described the best I could about the debilitating and chronic fatigue and pain (that we are all too familiar with), how some days I can't even get out of bed...As we left the hearing, my lawyer told me the decision could go either way, that he'd seen a case when the judge had denied an applicant, saying he could always get a job as a department store greeter even in a wheelchair! Maybe the judge was in a good mood that day, or had some Holiday spirit, because I got my approval letter a month later, but it still irks me, as I'm sure you can tell! My advice? Get an experienced disability lawyer, and be as financially and emotionally prepared as you can be for a lengthy process. Make sure you've discussed your inability to continue to work with your doctors and make sure they document it in your record. And know through it all that you have a lot of support from us all! Good luck! red
  8. Hi Susie, so glad to hear you've recovered from the surgery and the after effects so quickly! I'm another member of the gallbladder-less club, welcome! After I had mine out, I wondered why in the world I waited so long to have the surgery, soooo much better than those nasty GB attacks! Take it easy for the weekend, and hope you'll be as good as new very soon! Hugs, Red
  9. Sweet, so sorry you're going through all this! Do you have any family or close friends who are helping you cope? I've had high resolution CTs yearly since my diagnosis in 2008. First 2 were normal, then over 2009/2010 winter I developed shortness of breath and chest pain; I had H1N1 flu then pneumonia. The SOB continued after recovery, but I was told it was residual asthma and inflammation from the infections. My April 2010 CT was again normal. By Dec 2011, I had worsening lung symptoms and developed numerous lumps on my elbows and fingers, was told first they were calcinosis, then when I developed more, my rheumatologist took xrays - not calcinosis....."maybe rheumatoid nodules?" Ordered a biopsy of the lumps which showed inflammatory granulomas, highly suggestive of sarcoid (TB and other infectious diseases were ruled out by the biopsy.) More tests - blood had elevated ACE, calcium and calcitriol, urine had high calcium as well. PFTs dropped significantly with total lung capacity and DLCOs both in the seventies this year. By this time I was due for yearly CT scan and lo and behold - there were multiple lung lesions and enlarged mediastinal lymph nodes - the rheumatologist told me that normally if they see these they would suspect lymphoma, but because I had the skin lesions' biopsy already, he knew these lung findings were sarcoid lesions. Sarcoidosis is another autoimmune disease, which my rheumatologist tells me is not so uncommon to co-exist with scleroderma, and a lot of the symptoms are shared - fatigue, joint and muscle pain and weakness, lung and/or cardiac issues... It's certainly not a great diagnosis, but better than cancer. It;s unfortunate that you don't have a prior CT to compare with, there's no way of knowing how long you've had your nodules. I know from my research on sarcoidosis that it can cause liver lesions as well, don't know if it affects the pancreas. I'm an RN too, I hate it when I've read my reports and the doctors haven't told me everything they see! (My last CT shows new multiple osteophyte lesions on my spine - probably arthritis but could be sarcoid lesions as well, no way to know except to biopsy... but my doctors have never addressed this finding with me yet, grrrr!) We have a right to know, and most patients, even those without formal medical education, will research and educate themselves as to their disease, and will be informed enough to intelligently converse with their doctors. It's extremely paternalistic for doctors to withhold information because...why?...do they think we can't understand or can't emotionally deal with the findings? It's infuriating! I agree with you that I wouldn't be comfortable with ignoring the lesions and just assuming they are part of scleroderma. At minimum, you should see a pulmonologist and probably have a repeat CT in 4 months or so to see if there is a progression...and certainly a more aggressive approach would be to biopsy a lesion immediately. Have you had recent bloodwork to check on sed rate, liver function, etc? Know we're all with you in spirit, and will be here to support you! Let us know how your appointment with your primary goes. In the meantime, thinking of you and sending you hugs, red
  10. We have weathered the storm here in Upstate New York, but the aftermath is devastating in some areas. Personally, I fared very well, our neighborhood is at a somewhat higher elevation - we got TONS of rain -- torrential, drenching rain for 24 hours straight -- but we did not get the damaging winds that were predicted, and did not lose power in my immediate area. Upstate, along the Hudson and Mohawk River Valleys and other low level lands are major flooding issues and power outages estimated at 100,000 homes and businesses (upwards of 1 million without power including NYC). Many roads and bridges closed. School hasn't started yet for students, but area schools have closed their offices and their sports cancelled because of flooding and/or power outages. How are others doing along the Coast? Hope you all are safe! red
  11. Thanks for the well wishes, we may need them!! I'm in Upstate NY, it is around 3 pm Saturday as I write this - there is a very eerie silence outside, sun still shining but through hazy clouds, no wind. Very few birds at my feeders all day, and no sign of squirrels or chipmunks since yesterday - very unusual! The animals sure know something is coming. My dogs are getting restless too. Not worried about flooding in my area, but there is definitely potential for wide-spread power outages. Predicting sustained winds of 40 mph with gusts to 50-60 mph here. A little worried about not having air conditioning, but hopefully the storm will bring cooler air with it. I have a battery-operated nebulizer for my inhaled meds in case the power goes out. We've moved in all the lawn chairs, potted plants, etc. Husband has our chain saw gassed and oiled and ready for use if we or the neighbors need it.... Flashlights, batteries and candles handy....I think we're ready... I do worry about you folks nearer to the Ocean, you will be getting much worse than me!! Stay safe! :emoticons-group-hug: red
  12. Hi, hope Gareth is recovering nicely and that the surgery takes care of his pain. I had gallbladder-like attacks for years, but ultrasounds were always normal. Finally had a HIDA scan which showed dysmotility of the gallbladder, had the cholecystectomy, and never had another attack, thank goodness! Surgeon said my gallbladder was large and filled with sludge. Wasn't diagnosed with sclero til years later, but my rheumatologist thinks the gallbladder dysmotility was an early symptom of the scleroderma. I'm in upstate NY, I personally didn't feel the earthquake, but my husband's workplace sure felt the shaking, they evacuated the building but after inspection, everything seemed okay, without damage to the building or equipment. Hope you didn't bring the earthquakes with you from California! :emoticons-group-hug: to you and Gareth! red
  13. Hi Susieq, It's nice to hear from you, hope things are going okay for you. Thank you for the hugs! I was diagnosed in 2008 with sine, after about 10 years of joint pain, fatigue, carpal tunnel symptoms, and GI dysmotilitys and reflux. I had a fundoplication the same year, and have had bilateral release surgeries for carpal tunnel over the past couple of years. It had been progressing very slowly and chronically for years, it seemed. Things went sour Nov 2009, when I came down with H1N1 flu, then pneumonia and was on antibiotics and prednisone for 4 months. My lungs never did feel right after that. Fatigue and joint pain flared terribly when the prednisone was tapered off, and hasn't left yet. Voice hoarseness increased. I developed lumps on my elbows/upper arms, knees, fingers over this past winter, and was diagnosed with another autoimmune disease, sarcoidosis, after biopsies, CT scan and PFTs showed lung involvement. Raynaud's has been much worse this year too - had multiple toe ulcers over the winter, however thankfully resolved pretty quickly with amlodipine. Am hoping my new medicine, hydrochloroquine, will slow things down... But enough about me, I remember from previous posts your lungs are much worse than mine. Are you seeing any improvements with your current meds? :emoticons-group-hug: to you all! Red
  14. Thanks for all your support, I really appreciate it! hot :emoticons-group-hug: for your all! I do enjoy a good pity party now and then, but like to keep them short and sweet, am ready to face things and see where my journey goes from here. Yesterday went ok, nurses were a bit concerned when my O2 sat was only 95% just sitting, but it came up promptly to 99% on oxygen. And yes, fortunately, doc did the upper scope first, lol -- or at least he said he would, don't remember any of it :emoticons-yes: for conscious sedation! Doc said he biopsied the "irregular Z line" and a polyp he found in the stomach - I had both these findings on my first endo a couple years ago, and the biopsies were ok then, so I'm not too worried there. No sign of esophageal erosions this time tho, the fundoplication is still intact and the colonoscopy only showed wide-mouthed diverticula, which also were there last time, but no polyps this time, so all-in-all, GI tract is looking ok. Amanda and mioceon, thanks for the welcome to Diffuseland, I have great new neighbors! It's wonderful to be part of such a caring online family, thanks again. And my local family here, also took good care of me, they even did the dishes for me yesterday!! Wonder if I can get them to do that everyday... PS We had some good thunderstorms this morning here (New York State), so things have cooled just a bit, down from upper 90's of the past 2 days, expected high of "only" 94 today. :o Thank goodness for air conditioners! Stay safe! Red
  15. Miocean, this is truly wonderful news! :emoticon-congratulations: Enjoy your doctor-free vacation. I can't think of anyone who deserves it more! :emoticons-line-dance:
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