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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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!

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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:

  11. Hi Barbs,


    I've never had more than a tiny bit of discomfort from "normal" extracted teeth (except for dry socket wisdom teeth), never to the point of having to take pain meds for them more than once or twice after they were out (as the swelling went down), and I've had way more than my fair share of fractured and extracted teeth.


    Please call your dentist immediately since "normal" pulled teeth should be fairly painless and they should hurt only in the immediate area where it is swollen and tender. But there is a huge difference between tender and needing pain pills every four hours, especially in an entirely different location.

  12. Dear SDNYC,


    I'm sorry you are having such problems with both hands and teeth. I've lost a lot of upper teeth due to scleroderma and Sjogren's combined. I asked for a special partial design without any hooks or tooth rests, since the hooks were causing the adjacent vulnerable teeth to fall out, sooner than they would have otherwise.


    My 8-tooth upper partial pops in very easily, doesn't need adhesives (although I use them occasionally), and comes out very easily, with the flip of my tongue (which is why I use dental adhesives for special occasions when I really don't want them flipping out accidentally.)


    I also have no trouble chewing with my gums. So rest assured that there are partials and dentures that can be used if your mouth becomes more involved. And of course, visit our page on Dental Involvement for more ideas for coping with mouth involvement.


    I doubt that you will have problems caring for them due to your hand involvement, but if you do, you can consult an occupational hand therapist for advice, since they are very creative in finding ways and gadgets to do things that are otherwise nigh impossible.

  13. Hi Barefut,


    As I understand it, the average child gets 6 to 10 colds per year and the average adult gets 4 colds per year. You could probably add a few colds onto that number if you are on immunosuppressants. If you find that you are getting more than 6 to 8 colds per year, then you may want to reconsider your career choice -- although it is possible to pick up germs anywhere, of course.


    Keep up your vigilance and stand your ground with parents who try to drop off their children when sick. As soon as you do realize a child is sick, call the parents and pleasantly but firmly ask them to take their child home until they are fully recovered.


    I agree not to ever mention anything about having a suppressed immune system. Hardly anyone will know what scleroderma is, and people will likely assume it is something contagious, like AIDS. It's normal to take disease precautions, and activity that you enjoy is probably beneficial for your immune system.

  14. Hi Ann,


    Well, sorry to say, but he's probably not going to change his communication methods nor his habit of over-promising and under-delivering a tad, just because you happen to be sick. It's probably something you could adjust to when you were healthier, by compensating for it with extra effort on your part, or last-minute troubleshooting. Now you're probably realizing that approach isn't going to work anymore, since you don't have the extra energy reserves to tap.


    The worst thing would be expecting him to change, since odds are fairly good he had a pleasant way with good intentions and promises long before you got married, and that he has other sterling qualities that offset this little quirk. Therefore, it would still be up to you to compensate for his pleasant but slightly unproductive approach. Perhaps by scheduling more, expecting less, and not asking for his permission for people to bring dishes (just get on the phone and ask them). You can embrace the idea that he needs some R&R and time to watch the game, and have a cleaning person come in to handle some of the chores while he is relaxing, or recruit a relative to help a little beforehand.


    We take a more radical approach in our household, often scaling back to a bare minimum that many people would find shocking. Our usual plan is to go out to eat for holiday dinners, even if it is just the two of us. And we always have a Plan B in case either of us don't feel up to going out, such as a roasted chicken from the deli. Our Plan C, which we frequently indulge in, includes scaring away all the relatives, staying in our pajamas all day, reading and listening to music or playing board games, and eating whatever happens to be on hand (cereal, anyone?).


    The important point is that we are together, we are relaxed and we are enjoying each other's company. So we simply lower our standards to whatever is right for us and our health for that occasion, which is about the only way to cope since both of us have chronic illnesses (and he is on the lung transplant list.)


    Perhaps the most important point is that we joyfully and proactively lower our standards, with no apologies to anyone, putting "rest and relaxation" at the very top of our To Do list. Then, if we manage to not achieve anything else on the list, we have still done the most important thing of all. And somehow the world still revolves on its axis, even if our holiday celebrations are different than they used to be.


    If anything, our celebrations are happier and more pleasant now, since we have so drastically relaxed our holiday expectations, on ourselves and on each other.

  15. Hi Ann,


    There are a wide number of approaches you can take. One is to stop waiting or hoping for understanding. Oddly enough, it has little to do with whether people really love you or not. The enormous range in how people respond to illness is incredible.


    My approach would be to forget educating them, forget expecting understanding, and certainly let go of the idea that anyone will automatically think of being accomodating. Instead, focus on figuring out exactly what you need and then in asking for it, plainly and simply, without grudges or anger.


    For example, figure out whether you ever really liked all the entertaining in the first place, or not. If you love the socializing but feel wiped out with cleaning and cooking, explain to your hubby that you want to continue with the socializing but need to adapt things to help prevent your illness worsening from the effects of stress.


    From here, the ideas are nearly endless. Unless he is naturally Mister Clean and adores the thought of cleaning or cooking for the event by himself, offer to hire a cleaning service. Figure out ways to scale back the menu so that it is either all extremely easy to cook (or defrost) and/or order in deli or restaurant foods (with delivery, of course.)


    The cost alone might encourage hubby to want to extend fewer at-home invitations or he may decide it is more reasonable to hold smaller get-togethers in a restaurant. Our local grocery store delivers a complete Thanksgiving dinner, for less than the cost of a restaurant meal.


    It doesn't really matter how you solve the issue, as your approach might change a bit for every holiday or entertaining event. What matters is that you figure out exactly what you want, and don't waste any time (nor precious emotional energy) waiting around for your loved ones to "get it". There are very few loved ones who ever entirely "get it" unless they happen to suffer from exactly the same illness and severity. By letting go of that desire, and focusing on how we can help ourself and them adapt to the reality of our illness at the moment, we show them (instead of tell them) how to express their caring and make accomodations for flagging energies, while still enjoying life to the max.


    Now is the perfect time to inventory all the "shoulds" that have accumulated over the years, and figure out your "wants tos" instead, and focus only on them, and on how to make them possible without worsening your illness.

  16. I'm very sorry to hear of your mother's condition and that she is in the hospital now. This must be very hard on everyone.


    If you can talk to her medical team, ask what all of her treatment options might be for pulmonary hypertension. We have information readily available on the main website for PH secondary to scleroderma, so it's not like a secret that would only be available at Mayo Clinic and there might be something that she would be able to start on now.

  17. Hi Barefut,


    Yes, that will stop all your email notifications for the ones you have already subscribed to. But you will need to make sure you don't end up with more subscriptions. Simply uncheck the box that is underneath the message compose area, which says "Enable email notification of replies" every time you compose a new message.


    This box is automatically checked, because it is what most people prefer. Click OFF any options that you don't want.


    Another important privacy issue is that all the messages we post on this board are public and can be accessed by anyone. You can go through and delete any of your own messages whenever you want, and you can also ask the forum administrators to edit any of your messages.


    You can also change your screen name, which can help a little bit, too.