Jump to content
Sclero Forums

Shelley Ensz

Administrators
  • Content count

    3,655
  • Joined

  • Last visited

Everything posted by Shelley Ensz

  1. Shelley Ensz

    Methotrexate/ Natural Treatment.

    Hi Itay, Welcome to Sclero Forums! As you've likely figured by now, the risk of methotrexate side effects needs to be balanced against potential harm from the disease and the complications you and your doctor are hoping to avert or assuage. I'm assuming that your doctor is prescribing it for some type of vasculitis (please correct me if I'm wrong.) Methotrexate is a serious medication -- and vasculitis a serious condition -- so it's very important to be well-educated about both of them. Also, if you are not going to take the methotrexate, for any reason whatsoever, it's vital to discuss that with your prescribing doctor so that they can address your concerns and have the chance to discuss the risks/benefits as well as to possibly prescribe something else that you find more amenable. So, please, right now, either put in a call to the doctor to get any remaining questions asked, or start taking the medication exactly as they prescribed...because vasculitis can cause seizures, strokes, paralysis, kidney failure...all sorts of irreversible and even deadly outcomes, depending on the type and severity.
  2. Shelley Ensz

    A ramble. And, hello..

    Hi Heather, Welcome to Sclero Forums. I'm sure you'll be busy exploring the resources Jo gave you. I just wanted to say "hello".
  3. Hi Keevie, Welcome to Sclero Forums. It's possible yours might be related to the general scleroderma cause category of "stress". See Causes of Scleroderma on our main site.
  4. Shelley Ensz

    Loss of fingerprints.

    Hi Dolly, Welcome to Sclero Forums. I'm very sorry that you suffered third degree burns, and send my best wishes to you. As Jo suggested, please check with your primary care doctor about this. There is a chemotherapy drug, capecitabine, which can cause loss of fingerprints in cancer patients. So it would be worthwhile to research your medications, too. If it's due to a skin condition such as eczema or psoriasis, those conditions could be treated (but I don't know if it would restore your fingerprints.) Please keep in touch, and let us know what you find out.
  5. Shelley Ensz

    Undifferentiated Connective Tissue Disease

    Hi Kim, Welcome to Sclero Forums. I'm sorry you have UCTD. One thing many people don't realize in time is the potentially devastating effect of a new or chronic illness on all relationships, but most especially the closest ones, like marriage. I was extremely fortunate to get patient education classes,when I first became the most seriously ill. They pointed out the hazards our relationship faced and gave us the skills to improve our relationship rather than morosely sit and watch it idly self-destruct. Part of it was learning new ways to communicate, so as to get my needs met without being a constant drag. We began communicating with a number system, like I could just say my day was a "1" (in bed all day, wheelchair bound, managed to stay alive but that's about it) or a "10" (at the start, a "10" for me was being able to get showered with fresh pajamas. The scale would gradually change as my abilities went up or down). I learned how to ask very specifically for help, and never assume anyone knew what I needed at the moment. Rather than think, if he really loved me, he'd know I have a headache so he should keep the volume down, or do the dishes, or whatever. Turns out, that's a sure-fire way to end things quickly! Unless they are a certified professional psychic, there's no way any other person can know exactly what we want at any given moment unless we tell them precisely. So I learned to be direct, and say, as pleasantly as I could, "I'm so happy to see you! Today is about a 2 for me. Please do the dishes and keep things quiet around here, as best you can. Thank you for getting me my meds, I really appreciate it! I'll rest up, and hopefully we can go out to coffee tomorrow night." So it wasn't just about me; it's acknowledging them, thanking them, letting them feel like every little thing they do matters, because it surely does! Also, of course, I never lied or exaggerated about how my symptoms were at the moment, so he knew I was never trying to wiggle out of responsibility. It's painful to not be able to do what we used to. I had to learn a great many things to make a successful adjustment both for me and for my marriage. I supplemented that training with some personal counseling and every once in awhile, I go back to counseling, even now. It's impossible for any of us to get too resilient in the face of undesirable changes. I wish you well as you gather the resources to adjust to this life change. You can do it, absolutely -- but I must say, I've seen all too many fantastic good-hearted people with otherwise healthy marriages fail to realize they needed guidance to make it through such turmoil. There's a lot of hope for you, though, as you can already see and sense the danger and you are reaching out for help to deal with the impact on you and your family. So, please keep reaching out until you find the tools and skills to help you successfully navigate through some rough waters.
  6. Shelley Ensz

    This and that.

    Hi Quiltfairy, You are very determined and creative when it comes to all the problem solving that illness imposes. Thank you for sharing your tips as it also helps others who are in a similar boat. Or leash. Disappearing fingerprints are a really fascinating topic...well, at least when it's not your own fingerprints! When I did that page, I also went to the police station to be fingerprinted. It was a hair-brained thing, for sure, but here was my logic: Some doctors don't believe anything a patient says. Just my luck, if my scleroderma fingerprints disappeared, and I told my doctor, they'd likely dismiss it saying, well I bet you just never had any fingerprints in the first place. Whereupon I could proudly whip out my proof! It's a silly thing, but in contemplating it, I realized that fingerprints are a part of my identity. It is another "loss" that scleroderma can sometimes entail. The only upside is that once our fingerprints are entirely gone, we are free to pursue a life of hands-on crimes. (Just kidding! There's still DNA to deal with...not to mention, FATIGUE.) I think most vans can go 300,000 miles nowadays. I had one car that was still perfectly good with over 300,000 miles on it, as upkeep and repairs were always cheaper than a new vehicle. In the Midwest though vehicles can rust out before they run out, due to the salt on the roads (we rinsed that car off very often in the wintertime, and had a garage.) So if the body is still good, it *might* be worthwhile to invest in repairs, if the vehicle is basically sound. One of the popular car services around here (I'm in a large town) has wheelchair-accessible vans (just like a taxi); and we have a city bus service especially for wheelchairs/handicapped that is very cheap. So last year, when I was in a power wheelchair for a few months, I was amazed how well, and cheaply, I was able to get around town without a vehicle (or being able to walk.) I'm mentioning that just for people who are wheelchair-bound in larger towns who may not yet know how to get around. Luckily, I had registered for the handicapped services months before I needed them, because it took several months to get the paperwork processed. (Sorry, this isn't helpful for you, Quiltfairy, living in a small town, which has the flipside perk of things being more convenient.)
  7. Shelley Ensz

    Diagnosis of Systemic Scleroderma

    Hi Devonsnana, Welcome to Sclero Forums! It's a double-edged sword being diagnosed with scleroderma, after such an incredibly long struggle. I'm very sorry you have scleroderma, plus everything else. That said, I'm glad that you finally know what you're dealing with.
  8. Shelley Ensz

    Should I be concerned?

    Hi 1982, Welcome to Sclero Forums. I'm sorry you're dealing with symptoms and having trouble getting them sorted out. I may be wrong, I often am, but it seems to me that a rheumatology consult would be a reasonable request, with positive antibodies and a collection of symptoms over the course of years. I mean, someone should take a look at it, you'd think, to see whether an autoimmune process is going on. Anticentromere antibodies can also occur in lupus, and that could also explain no skin involvement or other overt scleroderma symptoms (like pulmonary fibrosis). Focusing on scleroderma so early in the game could be detrimental and might be what you're up against right now. Or, they might be figuring there's nothing going on that would require special treatment, even if you did have this that or the other underlying condition. For a path forward, it looks to me like your only option is to change primary care providers. If possible, you might want to see if you can establish primary care with a board certified internist who has a solid background. Like, try to find the one in your area with the most experience. The problem is, primary care doctors are accustomed to dealing with the usual issues. And, it's possible you might have an autoimmune issue. Internists are more geared towards dealing with complex and chronic illnesses; and would more likely be a rheumatology referral resource for you. One of my surgeons insists that everyone should go to a new primary care doctor each year, just a matter of course, simply because: fresh set of eyes. Of course, if your doctor is terrific and you know your care is top of the line and you have no unresolved health issues, then stick with what you've got. But how could you possibly be content, having health issues that should by all rights be reviewed thoughtfully in light of positive antibodies. Sure, it might still take ages for accurate diagnosis as some things just develop slowly -- but still, wouldn't you feel better if your case had a bit more thorough review?
  9. Shelley Ensz

    Freezing toes.

    What a nice discovery, Quiltfairy. Thank you for sharing that with us! I think your double-layer plan is exceptional. I found years ago that I love gloves but get more Raynaud's with them; mittens keep my hands warmer. It never crossed my mind (until now; so you get all the credit for this) to wear mittens over gloves to get the very best of both worlds.
  10. Shelley Ensz

    I love eating fruit.

    Hi Quiltfairy, It's delightful that you are figuring out ways to add more joy to your life. Thank you for sharing your blueberries with us!
  11. Shelley Ensz

    Diagnosis

    Hi Marybeth, Welcome to Sclero Forums! I'm sorry you've had so many health issues and a hazy diagnosis. Like Jo said, it's an average of six years for a diagnosis of systemic scleroderma, so it's not the least bit unusual to have many more questions than answers for the first half decade or so. Unless this is just "one of those things" that manages to go away on its own, odds are you may still be dealing with some symptoms when you retire. So it sounds like you should/could perhaps adjust your retirement plans, depending on how things are going to shake out. For what it's worth -- IF you have any flexibility in your plans -- my input would be to try to move within 10 minutes of a major medical center, preferably one with the highest quality ratings in the area. Then make sure that your insurance allows out of state consults, so that you can still see whatever rheumatology expert you end up with (whether it's lupus or scleroderma or Sjogren's or whatever). My reasoning is that scleroderma is most typically a chronic disease. But it can occasionally cause problems that may require emergency care -- and being out in the middle of nowhere, without fast access to critical care, could be an adverse situation. I live within 10 minutes of a decent hospital. The nearness has saved my life at least once. If you're going to be in a more rural area, and there's no fixing that, then accept that you might lose out in the event of an emergency -- you, and all your neighbors too -- but in the meantime you can focus on how the reduced stress, easier lifestyle, less traffic, fewer responsibilities, better chance to rest and eat right, may help your health just as much if not more than the fancy big-city life. In essence, think about reducing current stress by sorting out a decision-making tree for retirement plans versus health; or, health and enjoyment. Getting evaluated at an expert center could help, too. It might still be too early for them to identify scleroderma, or it's many friends, but it could get you in the loop for regular follow-ups that would help you, down the road.
  12. Shelley Ensz

    SCL-70 Antibodies Test

    Hi Moonchild, Welcome to Sclero Forums. I'm sorry you have concerns about scleroderma and test results. Your doctor is going to have to explain the test results as they interpret them in your particular case. For scleroderma diagnosis, the symptoms weigh more than the blood work. I know it seems like "forever" to wait for an appointment when you have pressing questions! If you're having trouble coping with the stress of it, let your primary care doctor know. Many of us needed counseling and/or medication to make a good adjustment to chronic illness. In the meantime, remember, we are here for you.
  13. Shelley Ensz

    Sound like Scleroderma? Or just strange fingers?

    Hi Randicats, Welcome to Sclero Forums! Please keep in mind that I have no medical training at all, and verify everything I say with a reliable medical source. As I understand it, in addition to hives on hands, which it might well be, there are conditions similar to Raynaud's that could also be considered, such as erythromelalgia and dyshidrotic eczema. I like the advice in this NORD article on Erythromelalgia, in the Diagnosis section. They suggest taking pictures of flares, and scheduling an exam late in the day. The doctor might try putting your hands in hot water for half an hour, to provoke it. Generically speaking, with Raynaud's you'd likely notice your fingers turning a dead, waxy white or a very dark dusky blue. You'd clearly notice that the circulation was impaired. And then it might turn red upon re-warming. But, Raynaud's rewarming doesn't typically cause itching and blisters. And you're not reporting the white/blue phase or consistent results with exposure to cold. I may be wrong, I often am, but I think most of us with Raynaud's could purposefully bring on an attack by leaving our bare hands in the freezer for a very short while; and in fact one quick test for it is for the doctor to dunk your hands in ice water. In your future, I see perhaps some photos, water dunking, and another doctor visit or two, to nail this down to your complete satisfaction. Please keep in touch and let us know what you find out about this.
  14. On January 11, 2018, Jo Frowde accepted the invitation to join the ISN Board of Directors. Jo is also ISN Assistant Webmaster, ISN Sclero Forums Manager, and ISN News Director. Posted 01/11/2018. (Also see ISN: Jo Frowde and How to Volunteer)
  15. Shelley Ensz

    Jo Frowde: ISN Board of Directors

    Jo, we are very excited to have you join the ISN Board of Directors! As many of you here know, Jo has been an ISN volunteer since 2010. She has steadily expanded her roles within our organization, as she is always eager to tackle new challenges. We are thrilled with the expertise she will bring to the board, including vast knowledge of ISN processes, policies, and procedures that enable us to tackle scleroderma on all fronts. I'm throwing a Sclero Happy Dance to celebrate!
  16. Shelley Ensz

    Ulcers on fingertips from Raynaud's.

    Hi Pico, Welcome to Sclero Forums! I'm sorry you have ulcers on your fingertips. Your doctor needs to examine your ulcers and tell you how to treat them. We have a section that lists the various options, see Digital Ulcer Treatments. Many of us have found it helpful to become experts in trying to avoid digital ulcers in the first place. It's not entirely foolproof, but it does help to do everything possible to avoid attacks of Raynaud's. One rule of thumb to keep in mind with ulcers is that if they are not healing, it means they are getting worse! And this is definitely something to be discussing with your scleroderma expert.
  17. Shelley Ensz

    5 yr old newly diagnosed with en coup de sabre

    Hello MNMOM, Welcome to Sclero Forums. I'm sorry your daughter has en coup de sabre, but I'm delighted that you found us, and that you are pursuing expert care for her.
  18. Shelley Ensz

    Raynaud's and warm or cold weather

    Hi Steff, Welcome to Sclero Forums! Congratulations on quitting smoking, that is one of the very best possible things you can do to improve your odds of living longer and better with scleroderma. I know what a truly major achievement it is to quit smoking (I rate it as the hardest thing I've ever done in my life), so I'm throwing my own Sclero Happy Dance for you! Please see your doctor about your leg swelling. There are two different types of edema (swelling): pitting and nonpitting. Pitting means if you poke the swollen part with your finger, it stays indented. With nonpitting, it just pops straight back again. Pitting edema can be caused by things like heart disease; nonpitting is often caused by lymphedema. Your doctor can figure out which type you have and with any luck devise a way to deal with it. Also, be sure to review your medications. (I swell up like a balloon on Norvasc, and even ibuprofen.) Please let us know what you find out from your doctor, too.
  19. Shelley Ensz

    CREST Sufferer.

    Hi Taryn, I want to welcome you to Sclero Forums. Have they found any way to lesson your husband's joint pain, yet?
  20. Shelley Ensz

    Raynauds digital ulcer

    Susil, welcome to Sclero Forums! I'm very sorry that you have a painful digital ulcer. Please try to see a listed scleroderma expert, from the link that Jo gave you. Even if that's not possible, please keep going back to your doctor until it resolves. See if there are any "wound treatment centers" in your area, as those centers specialize in the treatment of wounds. See if there is a larger medical center or university hospital that you could go to. The thing with digital ulcers is, if they are not healing, then they are getting worse. With scleroderma, digital ulcers can lead to amputations. Everything and anything that helps improve circulation may help assist in healing. Which means removing all sources of vasoconstrictors, such as caffeine, nicotine, alcohol, chocolate. Staying warm from head to toe is critically important. (Also see Raynaud's Prevention and Treatments for Digital Ulcers) Iloprost side effects can be very uncomfortable, but often they are treatable (such as anti nausea or anti diarrhea medications) and for most of us, preferable to gangrene/amputation. There are also many other treatments! It can be very painful and unpleasant to heal a digital ulcer. Please let us know how you are doing, and what steps you are taking to encourage the healing process.
  21. Shelley Ensz

    Left leg swelling and SD

    Hi Ronald, Please bear in mind that I'm neither a medical nor psychiatric professional of any sort. So all I can give you is my layperson's understanding. As I understand it, anxiety so severe that we are unable to leave the house is usually called agoraphobia. Perhaps you could read up about that, and if the shoe fits, see if you can find treatment for it, as it is a very treatable problem. The most amazing thing is that we don't need to bother getting over fear. It's okay for the fear to remain. Agoraphobia usually develops as a side-effect of panic attacks, although I had a friend who developed it as a side-effect of asthma attacks (because she and her doctors mistook her asthma for a panic attack for many years.) Your doctor might figure that if you were able to get out of the house for the tests, you should be able to get out of the house to hear the results. However, as a patient myself, I see a difference here because test results are more daunting for most of us, than the tests themselves. Thus, it would make sense to suffer more anxiety over that. But, as Jo points out, you can't resolve a significant health problem without going to the doctor. So, first up for you is figuring out a first step, that you can take today, for treating anxiety. Since you're inside the house, that would probably be a phone call. Who can you call? Do you have a counselor or psychiatrist? If so, start by calling them right this minute. If not, then start figuring out how to find one by tomorrow. Don't worry about the whole thing of needing to leave the house to see them. They should understand the hurdle of that. At least, you'd think so, right? Please let us know how this goes. We'll be here for you, and we'll be rooting for you!
  22. Shelley Ensz

    Undifferentiated Connective Tissue Disease

    Hello April, Welcome to Sclero Forums! I'm sorry you have UCTD. Most unfortunately, often wait-and-see is the only way they can sort out autoimmune diseases. About half the time, the symptoms and test results remain so confusing that UCTD always remains the primary diagnosis. As it happens, I had the UCTD label for a long time, before things sorted themselves out. I found it a bit nerve-wracking to think that the entire world of autoimmunity was open to me, with absolutely no idea as to whether my symptoms at the time were all it would ever be. I wanted to avoid worsening of anything, if I possibly could. I felt this sense of urgency, to properly diagnose and treat, so I was alarmed that my doctors were just like, oh ho hum, maybe someday we'll figure this out. If we're in the mood for it. Maybe, maybe not. For some reason, people who haven't had UCTD, seem to think of UCTD as being this rather mild, seemingly harmless label; like it is a great improvement over having lupus or scleroderma or rheumatoid arthritis. But from my own experience, I can tell you that I actually felt better once they began defining more specific diseases out of the UCTD mess that I was in. It's like then at least the range of possibilities was narrowed a bit; I could focus on that disease, seek treatments for it, and know where I "belonged", with more certainty, in the realm of patient support. Right now, what I can tell you is that you've come to the right place for support, whether or not you remain UCTD forever. We understand the difficult process of living with disease, of wondering what disease it is, of trying to hammer it out with logic until we find the right information and resources to deal with it, as best we can. Please bear in mind that I'm not a doctor, that I have no medical training at all. Just in general, women with scleroderma face an average of six years of wandering in the wilderness of odd symptoms and perhaps even odder test results, before diagnosis. This includes well-balanced, intelligent, educated medical consumers, such as you, who seek the best information and support for their condition. And this can happen even to those who seek expert care; sometimes they still need to be monitored for years before certainty finally arrives. All that said, if I were you, and had a doctor who didn't seem to care about anticentromere antibodies and Raynaud's (etc), I'd probably do the January follow-up and then decide whether or not I thought it was time to see a listed scleroderma expert. The reason I say this is because the average rheumatologist may only see one or two cases of scleroderma in their entire career. So it's not at the top of their radar. However, scleroderma experts pretty much know (or privately suspect) scleroderma when they see it, and so they can sort out the differences between, say, lupus and scleroderma, or even sclerolupus, more easily than a "regular" rheumatologist. But you need to bear in mind that this is not a quick and easy thing, even with experts. The harsh reality is that you may still be UCTD for years. And that has nothing at all to do with you or your doctors....it's just that autoimmune diagnosis can be THAT elusive. But please, no worries. You may lay them down and rest them here in this forum. Because regardless, come what may -- we will be here for you.
  23. Shelley Ensz

    Rituximab

    Hi Ally, Welcome to Sclero Forums. It's my impression that many disease modifying agents, such as Rituximab, take time to produce noticeable results. It's not like many drugs to relieve specific symptoms, such as taking a pill for heartburn and having it quelled within the hour. But Rituximab they are likely to first check to see if there's any progress at about the 8-week mark, and improvements are likely to keep blossoming for about six months. I know how hard it is to just wish-hope-wait with new treatments, but it's likely something that takes a big picture view, like evaluating every few months to see the general trend over time. I try to take a mental snapshot of my overall health at the end of each year. How did I fare over the holiday season, as opposed to the year before? How does that compare to five or ten years ago? Some years I'm surprised by the comparison. It's easy to get caught up in dealing with daily symptoms, and not even realize when some symptoms have improved or even vanished. We can heal, or worsen, at the cellular level before it produces anything worthy enough to gain our attention. It's still very "early days" for you with Rituximab, and you are thus quite likely to be feeling a bit better, in the coming weeks and months.
  24. Shelley Ensz

    Undiagnosed and with high anxiety.

    Hi Lacey, Welcome to Sclero Forums. I'm thrilled that you're seeking counseling to learn how to reduce the anxiety inspired by the potential threat of autoimmune disease. Anxiety can totally trash our quality of life, and like Jo mentioned, can actually cause negative changes in our health. Kudos to you for recognizing it's impact on you and taking restorative action! Resilience doesn't come naturally to me, so I'm very thankful that it is a skill that we can all learn. I have a whole arsenal of tricks to create resilience now -- and one of the best first tools I ever discovered was seeking a good counselor to help guide me through major life changes, and then even minor disruptions that I found more problematic than others. For those reading this thread who have just realized they could benefit from some counseling to restore their equilibrium (or perhaps even discover it for the first time) but who don't know where to turn, usually primary care doctors are a good resource for referral to an appropriate resource. They can generally help us decide if we could benefit from full blown psychiatric testing and evaluation, or just "regular" counseling, etc. Learning new ways to develop resilience will serve you well, no matter what comes your way in life!
  25. Shelley Ensz

    Scleroderma and Sjogrens

    Hi Luwana, Welcome to Sclero Forums! As it happens, quite a few of us have both Sjogren's and scleroderma. They figure about 20% of people with scleroderma also have Sjogren's. It's also not unusual to be diagnosed with Sjogren's first, for any number of reasons. One reason might be because Sjogren's, and Hashimoto's (autoimmune thyroid disease), are thought to be "gateway" diseases to autoimmunity. But part of that might be because those diseases are more common and much easier to suspect and diagnose than many of the rarer and more unusual autoimmune diseases, such as scleroderma. Also, Sjogren's can "go systemic", imitating or overlapping with many symptoms of scleroderma. I don't know your particular situation, but many of us with overlaps tend to get delayed diagnosis, since things get so confusing.
×