Jump to content
Sclero Forums

Shelley Ensz

  • Content count

  • Joined

  • Last visited

Posts posted by Shelley Ensz

  1. Hi Rochelle,


    Since you are still trying to get a diagnosis for your skin/finger problem, I'd recommend going to a board certified dermatologist, asap. They can examine the skin and possibly biopsy it to see what is causing the itching/rash/swelling/tightness, etc.


    If your only symptom outside of this is reflux, which is very common in the general population, odds would probably be very high that your skin problem is treatable, such as a form of fungus or contact dermatitis that has just been allowed to go on too long.


    For future reference, one rule of thumb is that if anything you come in contact with creates a problem (such as a rash), the first thing to do is avoid it, always. In the case of jewelry, put it in the jewelry box, sell it, trade it in, give it away, cover the inside with nail polish, or just wear other jewelry. Don't tempt fate by trying to wear (or consume) it again, unless you are somehow able to rule out allergy as a cause, since some allergic reactions can be fatal.


    I also had a wedding ring that was bothersome. It had a wide band, which trapped moisture underneath it from hand washing and sweat. So now I have another "wedding" ring which has a design of open hearts and a much narrower band. It is made out of the same metal (gold) but it has never caused a problem, so my situation was simply with the design of the jewelry causing fungus, and not a metal allergy.


    But in any event, it's perhaps a little bit premature to worry about the cause of scleroderma when you are still in the diagnostic stage and it could be something other than scleroderma. If you really relate your skin symptoms to the ring, which certainly sounds reasonable under the circumstances, odds would be very high for it to be something other than scleroderma. So please, see an excellent dermatologist as soon as possible, and even if it is good (as in non-scleroderma) news, please let us know!

  2. Hi Kamlesh,


    I'm very sorry you are depressed but glad that you are seeking treatment for it, as that is half the battle.


    I'd strongly recommend that you talk to your doctor right away. You need to let them know that your medication has not kicked in yet. Although it can sometimes take months for various antidepressants to take effect, your doctor needs to know in case your dose has to be adjusted, your medication changed, or some type of counseling or cognitive behavioral sessions added to your treatment plan.


    Since our forum's focus is primarily just on the scleroderma itself, and since we are not professional counselors or doctors, unfortunately we can be of very little help when it comes to depression -- except to say that we care, that it is a very frequent complication of scleroderma and many other chronic illnesses, and that you need to continue working very closely with your medical team.


    Also you may want to explore our link on Scleroderma and Emotional Adjustment, which has a lot of information, resources, and personal stories. Topics covered include anxiety, depression, emotional adjustment and scleroderma, exercise and arthritis, pain management, pet therapy, sexuality and scleroderma, and sleep and autoimmunity.

  3. For my unsolicited two cents worth, I think it can be worthwhile to ask a doctor their opinion of things rather than assuming they are okay with it. I've had doctors who had a knee-jerk highly negative reaction to any patient with a list. Which is a very sad thing for people with autoimmune disease, who frequently deal with more than the one allotted symptom per office visit.


    I encountered a doctor who went totally off her rocker when I presented a one-page printout of a research abstract from the Centers for Disease Control which related directly to my treatment. She said she felt very strongly that no patient should ever consult the Internet, that she should be my sole source of all my medical information. (I don't think she quite knew who she was talking to. :P )


    Many years ago, I had one appointment with a doctor who exclaimed that he did not have to look at either me or my records, because my clinic chart was over two inches thick so I obviously had to be a hypochondriac, since nobody could possibly be that sick!


    If he had bothered to crack the cover of the chart, he would have seen that I had taken a whole slew of neuro/psych tests in order to rule out psychological factors as causing any or all of my symptoms. That alone could have filled perhaps 1/4" of the chart.


    So, we might think that we are well prepared, with our lists carefully made to save them time, our impeccable research from stellar sources neatly reduced to one vital page of relevant and timely information regarding our treatment plan, our sanity verified, and our illness properly documented through dozens of tests and the proper expert consultations....only to encounter a doctor who prefers to deal with just one cold or hangnail at a time, who believes that hypochondriasis is rampant and should be stamped out in all patients before even reading their medical record, or who does not want to be confused by the facts of anyone with complex autoimmune diseases.


    I'd recommend asking new medical providers how they feel about lists, whether they will consider Internet information if it is from a reliable source, etc. Otherwise we can be blindsided by unusual reactions, when all we are trying to do is get the proper diagnosis or care for our condition.


    I'm of the belief that prioritized and categorized lists can save huge amounts of time in the doctor's office and keep the conversation focused on the most important issues.


    I have a fabulous medical team now, that I wouldn't trade for all the world. But even if our primary medical team is terrific, they can still refer us to other specialties, where we can encounter doctors with unusual, or downright backward or very demeaning approaches.


    People with scleroderma may be even more likely to encounter such doctors, since systemic scleroderma is very rare, it may present with dozens of unusual symptoms, and it is very poorly understood by most medical providers.

  4. Hi Nancy,


    Welcome to Sclero Forums, we are delighted to have you join us!


    Fibromyalgia is a very common overlap with scleroderma and other autoimmune diseases. The pain and fatigue that accompany fibromyalgia is impossible to really explain to someone that doesn't have it. I have it as well, and would gladly give it away to the lowest bidder. :unsure:


    We have a long page of resources on it, including lots of links to personal stories that our site visitors have shared about fibromyalgia alone or in overlap with other conditions. See: Autoimmune Diseaseses: Chronic Fatigue Syndrome and Fibromyalgia.

  5. Hi Jefa,


    Yeah, I was amazed by it, too. I really kept on expecting the next line of Daphne's story to be "and then she died"...over and over again. My jaw was hanging open to realize she is still alive. Truly astounding what a person can survive and still live to tell about it.


    I was a bit twixt and tween. There was awful medical care to cause a lot of it, but on the flip side there had to be incredibly great care to have pulled her through all of it. And she and her family must have absolutely incredible determination.


    For those who missed it, Daphne's story is at:


  6. Hi Peanut,


    Ask your doctor for a referral to an Occupational Therapist (they help with hand involvement, not job placements) right away.


    I started OT at the first sign of hand involvement. I had fingers twisting and curling, ulnar drift, carpal tunnel, aching and burning, calcinosis, swollen fingers, and muscle wasting. My OT taught me hand exercises and showed me how to measure my hands and my mouth every day. She also taught me how to use a wax machine, which my doctor prescribed so that I then had it for home use.


    She also made custom plastic splints for my twisting fingers and for my hands, one type for daytime and one for nighttime. I followed through with all of the advice. Between the OT, very faithfully following her instructions, and some meds, and perhaps just from the natural course of the illness, my hands settled down after the first 18 months from when they started acting up.


    Today you wouldn't really know there was anything ever wrong with them. Whenever they act up, I simply start right in with the whole at-home routine again until they settle down. And I measure my hands by a simple notch on my keyboard when I fire it up in the morning. If my stretch isn't entirely to the mark, I do more finger stretches for a few days (which only take a few seconds).


    Not everyone is this lucky, but there are a few of us who have done very well by tackling hand involvement immediately with good O.T., helpful meds, and terrific at-home follow through and we are still enjoying functionality (knock on wood.)


    The thing with hand involvement is that it is extremely hard (perhaps impossible) to reverse damage that is already done. So trying to prevent the damage is of supreme importance.


    And I agree with Janey that it was extremely important to keep using my hands, and not coddle them. It is very tempting to give in and avoid using them due to the pain and perhaps in hopes that it will make them last longer. But it is really a case of use it or lose it.


    To be fair, many people have tried to fight back very hard but have still suffered severe hand curling and hardening. So it is not fair to assume that everyone with sclerodactyly just sat by and passively watched things worsen, either! The disease is different for all of us. But I think everyone would agree -- don't just sit there observing them, hightail it to an O.T. and do everything you can to retain as much function as possible, for as long as possible.

  7. Hi Dave,


    I'm excited to hear that things went so well with your appointment at Duke. It's too bad that your illness is aggressive enough to qualify for it (at least through the screening you've had so far) but terrific that it at least might open up some treatment options for you.


    We'll be eager to see what happens. I suppose you'll need some heavy-duty distractions to keep your mind off of wondering when they will call and what they will say. We went through a similar thing when my husband was going through his initial evaluation for being listed for a lung transplant.

  8. Hi Gizelle,

    It might be a small bruise or broken blood vessel. Many medications can cause blood vessels to become more fragile and leak easier. My husband gets a lot of things similar to these on the back of his hands, caused by the steroids in his inhalers. You would need to have your doctor examine it to see what it is, of course.

    Not that you asked, but the good news is that it wouldn't be a specific scleroderma symptom, for either localized or systemic scleroderma. I mention this because morphea scleroderma often looks like a bruise -- but as I understand it (and keep in mind I have no medical training at all) a primary difference is that morphea does not just come and go within a matter of days. It usually fades within two to five years of onset, even without any treatment, but never within a day or two, as it involves more long-lasting tissue damage.

  9. Hi Denelle,


    I am thrilled to hear that you have adjusted your plans and are in the process of turning things around. I think half the battle was realizing that you were in a bad spot and being honest and open about it. That opens the door to change, for people (like you) who are wise enough to welcome it and learn from it.


    As you've already figured out, we can be bigger than our disease(s) by facing the facts and adapting to them. Kudos on realigning some major things so quickly...and keep up the good work. You are setting a great example for all of us!

  10. Hi Emmie,


    I think that "sinus involvement" means that the infection may be near to and possibly in the sinus cavity. An oral surgeon can take greater care in dealing with it than a normal dentist. And on the positive side, oral surgeons often use anesthesia which might mean that you get to sleep right on through the whole procedure.


    I've had oral surgeons who have worked on things right in the office, but I had to be hospitalized to have my four infected and impacted wisdom teeth taken out. But usually you can get excited when they refer you to an oral surgeon as generally they make more of an effort to eliminate the pain factor and they are capable of handling more complex situations.


    Good luck with your dental adventure. It may make you lisp for awhile...but in emails, we'll never be able to tell. I hope you feel better soon. And then you can dare dare double dare Lisa to follow in your footsteps, before her Official ISN Soccer Tooth (stay tuned for pending video) gets any worse.

  11. Hi Lisa,

    I am absolutely thrilled that you sacrificed a front tooth to the cause of scleroderma and that you have committed in writing to making a video of the impending extraction!

    In fact you will go down in ISN history as our very first fundraiser plus the very first fundraiser to sacrifice a tooth for scleroderma. So save that precious ISN tooth when it is pulled -- maybe for your next fundraiser, you can auction it off to the highest (and perhaps drunkest) bidder. blink.gif

    Also you are following in the fine tradition of ISN front toothers. In ninth grade, while playing Capture the Flag on an island in Canada, I tackled my boyfriend's six-foot tall brother and gave him a royal concussion with the impact from my mouth.

    The impact knocked the rim of my teeth loose. I wasn't allowed to eat real food for weeks. It spoiled the whole rest of my camping trip, put a large dent in my budding romance, killed off my front tooth, turning it black and it remained that way for years as my parents could afford the root canal but not the cap. And so forth.

    But there are two important points to this post: YOU raised over $5,000 glorious and much-needed dollars for the ISN and you have the pictures to prove it! And I captured the flag!

    Altogether, that adds up to a pristine tradition for the ISN and I dare dare double dare other people to follow in our tooth-defying footsteps.

    Seriously, of course, I'm really sorry you are losing a tooth, not to mention a front tooth, and I'm very sorry it is on behalf of your fabulous ISN fundraising efforts.

  12. Hi Denelle,


    I'm sorry to hear what you're going through. Illness usually makes demands on all of us to modify our goals and adjust our plans.


    Although many of us might expect to be greeted with love, compassion and understanding upon becoming seriously ill, the reality is that most (if not all) of our associates are likely to react strangely -- sometimes with outright denial that anything is physically wrong with us, sometimes with very unhelpful suggestions for worthless remedies, sometimes with a cold shoulder or even fears that we will become dependent on them or a financial or psychological burden; or worse, they secretly fear that we might be contagious so they stay away completely.


    Ironically, it doesn't mean they love us any less. We can still enjoy happy relationships with most of them, provided we learn to cut them a ton of slack (drastically lowering our expectations), focus on learning how to ask plainly for what we need without any type of manipulation, and take responsibility for learning how to adjust to the new and startling demands that illness places upon us.


    One of our responsibilities is to take care of ourselves emotionally, and to rapidly develop additional coping skills since illness will exacerbate any less than stellar coping mechanisms we usually rely on, bringing our slight human weaknesses to the forefront and making them look more like glaring faults <sigh>.


    Thus, if we tended towards a bit of worry before we became ill, we can take it right up over the top after becoming sick. That can add all the symptoms of anxiety and depression to our illness, making us jumpy, grouchy, irritable, and even more fatigued and in pain than ever before. Then we usually show the delightful insight of blaming those around us for not being understanding of our illness, when in fact they are adversely reacting to our own disabled coping mechanisms.


    You can see how quickly that can spin out of control in a downward spiral. The only way I know of to break out of that swift long slide is to first realize and admit it is happening, like you have already done, and then to purposefully set about learning new coping methods, leaving no stone unturned.


    Typically that might involve a multi-pronged approach, such as consulting with a lot of professionals. We might see our primary doctor to assess whether our anxiety or depression is sufficient to require treatment; a guidance counselor to consider an adjustment in schooling plans; a disability expert to learn our workplace rights and responsibilities; a counselor to help us adjust to the rapid changes and substitute healthier ideas and coping mechanisms; and a support group for extra bolstering.


    You might be putting yourself under too much strain by expecting all your plans to go on as usual. Perhaps you need a year or two for the illness to settle down and for you to learn how to adjust to it and compensate for it, before continuing with the plans for school. Perhaps you need to get a school loan and forego working while you are in school. Perhaps you could work part-time and go to school part-time. Just relaxing your goals might be enough to quell the worst of your anxiety.


    At the top of my To Do List every day I put "Rest, Refresh and Relax". Then if I achieve nothing at all, I have still achieved my most important goals, which is psychologically healthy in circumstances where you can't always rely on the physical or mental energy to achieve something worthwhile on any given day.


    They say it takes about 2 years to adjust to any diagnosis, and in looking back, I can say it definitely took me about 2 years to make the most significant adjustments that enabled me to enjoy a delightfully happy and refreshing lifestyle based on radical simplicity, extreme flexibility, a very grateful attitude, and very carefully chosen goals supported by tremendous lifestyle modifications.


    A thought to hold in the forefront is that we must always become bigger than any challenge we face. The bigger the challenge, the bigger the person we must become. So let this be a challenge to you! I am absolutely positive you can make the adjustments...if you cut yourself a lot of slack, seek wise counsel for every aspect of your life, and judiciously (even radically where necessary) redesign your approach.


    Sooner or later, it will all come together and you will look back, glad to have had this opportunity to rethink and redesign your priorities and your life. Honest! So hold that thought closely while things go topsy turvy as you explore new possiblities.

  13. Hi Lisa,


    A root canal takes a lot more time than a tooth pulling. When they pull a tooth (or what is left of it) it only takes a few minutes. And with novocaine, you don't even feel it. I just have a bit of trouble since my gums are so hard that the novocaine spurts back into my mouth, so they have to keep on giving shots and trying different spots until enough gets in that it takes. Be sure to mention Raynaud's so that they use the non-vasoconstricting type.


    Then there's some interesting crunchy squeeky sound effects when they actually give a yank and pull it. But the beautiful part is that you only hear it, and not feel it, by then. And it's over so quickly that it's almost hard to believe -- all that fuss over next to nothing!


    Eating is no problem afterwards, either. Just avoid that area and talk like a cartoon character while the numbness wears off.


    It's a thousand times better than being curled up in pain from TMJ while having a root canal done -- they take forever and a day with those. I've had root canals and caps and tons of fillings, but the tooth pullings rank as the easiest in my opinion...because they are so quick.


    So gather up the little shreds of your courage and go for it. Maybe they will let you take pictures for our Dental Involvement page! And a video of a tooth pulling, that would be terrific, but I suppose that's asking too much, eh?


    In any event, don't spend any more than 15 minutes dreading it, since in reality it probably takes 10 minutes for the novocaine to kick in plus less than a minute for the pull. You can do it! And you'll feel like a million bucks to have the problem solved, too.

  14. Hi Elehos,


    Welcome back! As you probably have already figured out, it would be very important for you to not take another dose of Tylenol or any other acetomenophen NSAID if you suspect they are causing this reaction. But please consult your doctor about these symptoms right away and let us know what happens. At the very least, call their office and ask whether or not it is okay to wait that long to be seen for that particular issue.


    The symptoms you mention could be due to medication side effects, or worsening of illness, or a new illness. The side effects possible with NSAIDS may be the same as, or mask, other diseases -- for example, migraine or transient ischemic attack (TIA). And, of course, it would really take a doctor to sort it all out.

  15. Hi Jackie,

    My husband, Gene, had the Nissen surgery over two years ago. The surgery itself was complicated because they had to extend his esophagus with part of his stomach, so that he can have room for either a right or a left lung at transplant time (because they only give one lung for people over 60). And he has a large liver hemangioma which halted surgery while they thought that over.

    Despite all that, he was out of the hospital within two days and back to work within a few weeks. He hasn't had a whit of heartburn since then. He is also still able to burp and such; it is a perfect Nissen to not have heartburn but still be able to burp, since that cures the problem without causing more of them.

    I must say, he had a truly outstanding surgeon at a center that has an excellent track record with Nissen's. That is extremely important, because complications of a bad Nissen can be quite severe.

    He doesn't have scleroderma; and he only had the surgery because he had to have his heartburn cured in order to be eligible for a lung transplant, because there are worse outcomes in lung transplant patients who have heartburn.

    I have GERD but have it under control, at least for now, with diet and lifestyle changes since I have eliminated things that worsen or trigger it for me (see our page on GERD). It's definitely worthwhile to make all the lifestyle and medication changes necessary to try to get it under control before relenting on the surgery. And if you do have the surgery, my suggestion would be to screen very thoroughly for the best hospital and surgeon before letting anyone lay a finger on you.

  16. Hi Patty,


    I'm sorry to hear you are suffering more. Please see your doctor right away. This could be due to dermatomyositis, or something else, or even a side effect of the medications you are on.


    Since your pain is worse and different than before, and the medications are not helping, it is very appropriate to see your doctor. There's no way we could recommend a specific pain reliever, since your doctor needs to consider your entire health history and review possible medication interactions, too. And besides, none of us are doctors, either. But we're with you all the way, so let us know how things turn out at the doctor...and hopefully you'll be playing tag with your daughter again soon.

  17. Hi Heddy,


    I'm sorry to hear you have a severe sore throat.


    As it happens, people on methotrexate are supposed to contact their doctor right away if they have any signs of infection (such as sore throat). Methotrexate can interact with antibiotics. Also it is most beneficial to have a throat culture before taking any type of antibiotic, since even a single dose can cause a false negative for a strep test.


    Of course, you certainly can't take back what has already occurred. But it's not too late to call your doctor and sort things out. Usually methotrexate is very well-tolerated, but it does require working closely with your doctor on it.


    For more information, see Methotrexate at Drugs.com. I hope you get back up to snuff fairly soon.

  18. I'd just like to remind all of our new members that this is a great thread to post your first message in. Just tell us a little (or a lot) about yourself, just to break the ice and get your feet wet with posting in the forum.


    I remember being so scared to post my first message in a forum. I worried about whether I would be able to do it right, how it would work, whether anyone would ever reply to my message, etc. I can't exactly say my first message was met with thunderous applause, actually probably none of them ever have been, but the world did keep revolving on its axis and eventually I got used to it.


    So just jump in and try it out. Our support specialists will make sure your message fits all our Forum Guidelines, if you haven't studied them extensively yet.


    My name is Shelley. I live in Minnesota. We celebrated Thanksgiving on Thursday and I made turkey stock for soups yesterday. I love to do artwork and crafts and sewing.


    What's your name? Where are you from? What do you like to do? Why did you join the forum? It doesn't much matter what you say...the important part of your first message is just getting it over with. :blink: