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jillatk

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About jillatk

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    Colorado
  1. Medication for Sjogren's

    My Cornea doctor has me on a whole dry eye regime as my corneas are starting to break down. The regime includes FML (fluorometholone suspension) drops twice a day Restasis drops twice a day Fish oil 1-3,000 mg a day (the oil gets excreted by the glands above the eye and gives a nice film over the eye) Punctal Plugs which were surgically implanted - the ones that sit on top of the eye lid did not work for me Warm compress on the eyes for 10 min twice a day Humidifier Preservative free eye drops every hour Presernative free salve at night This routine has reduced the episodes of waking in the middle of the night with my eyes aching and the Cornea doctor says the damage to my cornea has stabilized. Dry eyes are evidently a very serious issue that can lead to loss of vision and significant eye pain. The routine is cumbersome, but better than the alternative of vision loss. Good luck. Jill
  2. Amberjolie, My doctor took me off the pill (estrogen based) immediately after diagnosis due to concerns about increased risk for blood clots. My rheumatologist did several tests to check for risk for clotting. Even though I did not have any of the markers, he still did not want me to take it. He did not want me to be on a progestrogen either. My obstetrician/gynecologist agreed that the risk was too high. Luckily all the changes shot me right through menopause with very few symptoms. I am not surprised that your doctors are discouraging you from birth control. I hope you can find a workable solution. Jill
  3. Tennis Elbow anyone?

    My doctor is treating me for bilateral carpal tunnel syndrome, which he says is quite common for Sclerodermans. In addition, so is tarpal tunnel syndrome, which is basically the same problem in your ankles, and which I was treated for before I was diagnosed with Sclero. In the past I did the cortisone injections in my foot and did not find it helpful. Currently my doctor has me taking B6 as it is supposed to help with keeping the tendon more flexible. I also sleep with night splints on my wrists. That seems to have helped with the problem of my hands falling asleep on me. Jill
  4. Brand new to this

    Hello and welcome Christine. You can never ask a stupid question here. We have all kinds of answers, so ask away. Also, I almost always can find what I am looking for by searching the site - we have tons of resources. I am 2 years into my diagnosis, although I had weird symptoms for several years before I really said anything to my primary care doctor. Swollen, red hands is an all too familiar symptom. It will calm down once they get you on some medication - but I still have episodes of swelling and tightness in my hands. Brain fog can be due to many things, but often is related to the fatigue that is a hallmark symptom. In general, the disease does not affect your brains (thank goodness) but for sure there are lots of symptoms, and medications, that can tax your brain clarity. I am happy to report that I am almost as active as I was before I got diagnosed. And I do mean active. I am out snow shoeing, hiking, climbing almost every weekend. I have figured out tons of work arounds, as have many people on this forum. Feel free to ask how we manage things. I think the most important thing to remember is to live your life to the fullest you can every single day. Jill
  5. One Year Anniversary

    Miocean, You go girl! What an accomplishment. Jill
  6. Doctor's waiting to see....

    Ellie, Welcome to the Forums. You are in the right place to find answers and get support. Jeannie about covered all the bases. I will add that I was a very active, healthy individual before the disease hit me and after 2 years of treatment I am right back out there doing the things I love to do (climbing, snow shoeing, backpacking). One thing you will learn is how to work around the things that don't work so well. I encourage you to find a doctor who will work with you and address your symptoms. I also strongly encourage you to get active and live the best life you can live. The first few months are the most difficult and scary, but it will get better. Remember that you have lots of control over feeling better, even when it feels like your body is being uncooperative. Keep posting and letting us know how you are getting on. Jill
  7. Systemic and hypothyroidism

    Kaz, welcome to the forums. Sounds like you manage your disease process well and have a full, satisfying life. I hope you post more often. Sorry I am no help with the thyroid business, but I think Jeannie gave you a good response. And, by the way that is a cutey in the pic. Jill
  8. crest and cancer...

    Cecelia, sounds like you got a clean bill of health from your doctor, so go out and live the best life you can live. Which, by the way, is the exact same advice I give folks who are diagnosed with the disease. Nothing really changes with the diagnosis in terms of getting on with your life. Either way you still have a life and it is up to you to get out and enjoy everyday as if it is your last. You certainly can choose to live with fear about what could be, but that is a short sighted and no fun way to live your life. You could go out tomorrow and get hit by a bus, so you get to choose, do you go out and go on with life or do you keep yourself locked up fearfully in your house? The choice is really up to you. I have also told many folks that the best way to handle fear is to get up and get busy. By the very act of completing a task (no matter how small) you will get the sense that you have some control in your life. Jeannie is exactly right - if you are anxious, depressed etc get in to see a psychiatrist and a therapist - don't just sit and stew in your fears because that will only get you more fear. A psychiatrist I worked with once told me that if you can accomplish 6 tasks a day you can manage depression. More recent research also suggests that if you get 20 minutes a day of exercise your anxiety levels will drop. Give it a try as you really have nothing to loose. Good luck. Jill
  9. Just Learning about the Disease

    NLG, Take a deep breath and relax for a minute. Then take one thing at a time. The more upset you get the harder it will be to control your symptoms. Yes, all of this is scary and overwhelming, but at some point you have to stop being overwhelmed and take back your life. I would start with some daily relaxation exercises - just close your eyes and breath and clear your mind. Then focus on warming up your fingers. I do that by keeping my core warm and by always having gloves and those chemical heat packs (I also have a secretary who is an absolute furnace so she is always willing to hold my hands to give me a shot of heat). Keep your hands and fingers gooped up frequently. When you get a split slather whatever works on it and keep it covered and dry (as in not letting water get to it). If you are feeling depressed get in to see a psychiatrist and then a therapist. There are things you can do, and by doing them you will feel much better. Focusing on how overwhelmed you feel will result in just that - feeling overwhelmed. You will get through this and be okay and the way you will do that is by getting up everyday and finding the things you can do that will make you happy. Another person on this forum once told me about laying in bed, after a long stay in the hospital, and seeing a red tail hawk sitting in a tree outside her window. She was moved by that moment and it stays with her still to this day. Those moments are there, you just have to find them and focus on them. Jill
  10. Beginning of Sclerodactyly?

    Hello Amberjolie, I too am guilty of hammering my hands most of my life. I try and be kind to them now, but they still take a pretty good beating. I try and keep goop on them to keep them from getting too dry. My understanding of the nail bed changes is related to Raynauds. My doctor put a gel on my nail bed and showed me where I had capillaries that "dropped out" and were frayed at the end. He said the best finger to see this is the ring finger. He was quite excited to see my fine specimens of drop outs. There is not really anything that can be done about it - just helps in the diagnosis. The sclerdactyly from my understanding is the skin actually becoming hard, thick and shiny. I had a good case of it when I was diagnosed. I had not realized that the wrinkles around my knuckles had completely disappeared, compliments of the tightening. People often commented on my hands looking sunburned, when they were not. My skin has softened since starting some of the meds - took about a year and while they are still swollen much of the time, it is better. My doctor measures the distance from my thumb tip to my pinky tip on both hands every time so he can monitor whether I am loosing the stretchiness in my skin. So far it has stayed stable. This disease can make you nuts for sure. Noticing every change in your body and wondering if it is related to the disease. Some times it is and some times it's not and it often does not matter as there is not much that can be done. The big one to do something about quickly is changes in breathing. Most of us have a slow moving version, so getting in to see a doctor sooner rather than later is not so important. The trick is to not let every change stress you out. Jill
  11. Nissen Fundoplication for me tomorrow

    Hello Caroline, I am also in the success category. Had mine a little more than a year ago and resolve the horrible symptoms I was having. I was so happy to get it done. Good luck and let us know how it turns out for you. Jill
  12. Positive SCL-70 and ANA

    JDeb, welcome to the forums. If is it any consolation for you everyone goes through this initial desperation for answers. I read umpteen articles about things I really know nothing about - all in an attempt to wrap my brains around what was happening. It was down right maddening to have to wait to see a specialist and feel like I was hanging on by the least thread while being in a holding pattern. I can tell you that I am 2 years post diagnosis and still have moments of thinking that if I could just get enough information then I could get this under control. That is always a sure sign for me that I am stressed and need to slow down and relax. Luckily, this tends to be a slow moving disease so you have time. Take the time and take it in piece by piece and remember that fundamentally you are still who you are and your life will continue. You are going to be okay - I promise. Jill
  13. Plaquenil Anyone?

    Hello Lori, I have been on Plaquenil for 2 years and love it. I noticed a reduction in my fatigue after taking it for about a year. Give it some time and of course keep in touch with your doctor about any new symptoms or adverse reactions. This disease is nothing if not very individualistic. How it manifests in you will really depend on you and how you respond to the meds will really be just about you. It is kind of aggravating to not be able to "know" what will come next, but that is the deal with this disease. Good luck and keep us up to date how you are doing. Jill
  14. What a great topic. I have so many hobbies I barely have time to go to work. The absolute love of my life is being in the mountains. Before my diagnosis I spent a couple of months a year out in the high Sierra's climbing peaks and hanging out in really cool places. Since being diagnosed I have had to rework how to be in the high alpine environment comfortably. In fact my rheumatologist predicted that my days of climbing were over. Well, I am happy to report that in September I climbed my first 14ner since my diagnosis. Managing my temperature was a challenge, but I had been practicing all summer with climbs to 12 and 13,000 foot peaks. In October I was also able to do a week long backpacking trip to the Grand Canyon. I have found that it takes a lot of support and work arounds, but I can do it. Now that winter is here I am out every weekend snow shoeing. It takes lots of support from friends, but it is important to me to do it. I have had to give up doing overnight winter trips in the back country, but that is liveable. I have also given up my dream of major climbs such as Denali. I also know that I cannot hike as fast or as far, and cannot carry the heavy pack I once did, but I can still be out there. I also have goats, chickens, a llama, bees and several dogs. I read and have just started to learn how to knit. I have a couple of pairs of socks that a friend knitted for me and they are so comfortable because they don't restrict blood flow to my feet. So I decided it was a good idea to learn how to knit. In the summer I love to garden and cook good foods from my bounty. The last thing I really love is riding my motorcycle. I gave it up for a couple of seasons until my husband could make some accomodations for me so I can ride comfortably. I always hesitate to give up something I love until I have exhausted every avenue for making a work around and so far I have been pretty successful. I have fabulous friends who are willing to be my support team when I am out and I think that is so very important. Without their support I would be way more limited. Climb on! Jill
  15. I once ended up with one of those nurses after a trip to the emergency room with an asthma attack (pre scleroderma). The nurse would call me and want my peak flow number's and whether I was compliant with my medication regime. I asked her if she could help me get through the system and get a pneumonia vaccination and she said she was unable to help me with that. So I then asked her what her purpose was if she was unable to help me get what I need to prevent another trip to the E.R. That was the end of that service. It was pretty benign and useless as far as I could see. I assume I got a nurse case manager in response to the very unusual event of an asthma attack. I guess they are there just to keep track of you in an attempt to reduce costly interventions such as the E.R. I probably got a black mark against my name when I opted out. Like others here I am doubtful it would be a helpful service if you already have good care. Jill
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