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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. Hi Barefut,


    I love to do microwave exercises, coffee or tea walks (while the pot is brewing), computer boot up stretches, and on-telephone-hold walking. I also like to just set the kitchen timer and walk around in circles through the house, or dance a bit if I need a pick-me-up.


    These are all little things, but they do add up. Although you can become completely exhausted if you end up on hold too long...so be careful with this approach.


    An ex-hubby should be the best motivator of all to start shakin' it up a bit. You want him to eat his heart out that he was a stupid fool to leave you, don't you? And later on, after you've mastered the "little-cizes", maybe you will feel like adding more challenges to your routine.


    I also use a very cheap (like $15) stretching program that pops up on my computer, whenever, and tells me what stretches to do -- and how to do them.

  6. Welcome, new members! This is a great thread to try out your first message to the forum. We'd love to know a bit about you. Just pop in and say a brief hi, or tell us about why you joined, where you are from, and/or what your interests or hobbies are.


    My name is Shelley, and I'm from Minnesota. It's rather chilly here today. I sewed a pillowcase this afternoon, and when I sign off, I'm going to sew a coverlet for my musical keyboard.


    See, it's as easy as that. Your turn!

  7. Hi Patty,


    This sounds like something that might actually require an appointment, to discuss the test results plus possible treatments. I am sure he would want to review all your meds for interactions plus explain any possible side effects to you.


    Why not make an appointment to see him next week? Then you will surely have his attention! And if you also need to discuss the pain med issue, you may need to make a separate appointment for that (or ask for a longer appointment when you are booking it.)


    He might be limiting your pain meds just for the very reason you mention...since if it says to take 1-2 a day, it does not mean that 3 is okay. In the first place, that might be dangerous, but it could also help you build up a tolerance that would make the lower doses less effective. If it is simply not enough at the prescribed dose, it might mean that the med just isn't working for you and that you should be switched to something, perhaps a med delivered by patch so that you are getting a steady stream of it, which would eliminate the periods of going without it completely.


    But of course, I'm not a doctor, I have no medical training at all (etc.). It's just that I would tend to approach these as two separate appointments, since they are a lot of ground to cover in just the few minutes they allow for an appointment.


    It can be a real eye opener to ask the appointment clerk how long the appointment is set for, too. Many clinics book five or ten minute appointments, so our doctor's teeth are setting on edge when the appointment runs over even by a few minutes, meanwhile we are merrily assuming we have a half hour or even an hour appointment, and wonder why their attitude has turned edgy or sour. Separating the issues out, keeping the discussion streamlined and focused on results (i.e. I am here to get a prescription for such-and-such), requesting longer appointment times when booking, and separating it out into several different visits can take stress off both the patient and the doctor.

  8. Hi Barefut,


    I'm also a firm believer in honesty -- but in digestible bits in the beginning of any relationship, and I would recommend steering away from the "life threatening disease" aspect. I've been married for a quarter of century, so my dating skills are rusty, but this is my third marriage so it's not like I'm entirely inexperienced in dating, either.


    On a first date, I might very briefly mention that I had "arthritis" or an "autoimmune disease" but that I am coping very well with it. And as soon as the subject was lightly touched upon, I would immediately change the subject or ask him a question.


    At every opportunity, I would downplay symptoms rather than emphasize them (which is a good general policy anyway, since most people don't care and even those who do may have poor coping skills.)


    Raynaud's can be laughed off with "cold hands, warm heart". Difficulty swallowing can usually be glossed over by pretending it was a cough or just that it "went down the wrong way."


    Most longlasting relationships begin slowly and build gradually, and don't entail a heavy dump on the first date. Saying "life threatening illness" or even "scleroderma" could be overload at that stage, when things are very tentative and the tendency for everyone is to bolt at the first sign of trouble on the horizon.


    Whereas, showing your humor and wearing your illness light heartedly will set the example that you aren't a worrywort and would be pleasant to live with, come what may for either of you.


    Believe me, there will be ample things that are important that he sure won't be telling you on a first date, either, so I don't think its hypocritcal. What you want to do is buy the emotional space to see what you have in common, completely apart from the illness, because you would be looking for a friend and a partner, not a nursemaid or a doctor.


    In short, trot your good humor and interest in him out to play on a first date! I would save all talk about "scleroderma" for a later time, and then only gradually introduce the subject. Otherwise, it runs the risk of thinking that he's only with you because of a pity trip. And you deserve someone who loves you, not someone who feels sorry for you, and who wants to be with you, not just take care of you.


    Even if he already knows you have scleroderma, I'd still stay away from the topic on a first date, because that is the point you are exploring things you have in common, and odds are fairly good that he does not also have scleroderma.


    Some people may reason to tell about it right up front and present it at its worst, then let the chips fall where they may regarding a second date. But I think that's about as sillly as confessing to any other unpleasantness, bad habit, or all the skeletons in the family closet.


    There's a time and place for that, later on, as the relationship becomes more solid and more able to absorb each other's quirks and burdens without being sunk by the sudden weight of it all.


    To approach him, just ask him if he'd like to have coffee with you some day this week. If he turns you down, it was only for a cup of coffee, and not for a lifelong commitment. Or do whatever else strikes your fancy!


    But I say go for it. If for any reason he doesn't leap at the chance, it only means that someone else even better for you is waiting just around the corner.

  9. Yes, and more to the point even -- please check with your doctor for any new or worsening symptom. If you feel like your hands are tightening for any reason, it would be time to see the doctor. They would be in the best position to say whether what you are noticing is normal, or not.


    I may be wrong (I often am!) but I think that sclerodactyly is more likely to begin with Raynaud's, and very swollen hands (like sausages) that begin to lose their wrinkles and then gradually begin pulling inward. And digital ulcers or calcinosis (or both) would likely appear around the same time.


    All I can say is that I think it is normal to have slight vertical wrinkles on the underside of fingers, but it is impossible to tell exactly what you are describing by email, and none of us are doctors, which would make an exam by your primary care doctor important, especially if you are experiencing cramping or tightening of your hands, for any reason.

  10. Dave, I apologize as I had assumed (we know what that means!) that you mean ASTIS instead of ASSIST, and had edited and linked your message accordingly.


    I have now added the Allogenic trial to our current clinical trials page, and included that link (hopefully correct now?) in your previous message. I hope this sorts it out, but if not, let me know and I will gladly make more revisions until we get it all straight.

  11. I apologize to everyone for trying a cute webmaster trick (called software upgrade) and neatly erasing the entire forum for a spell.


    We're back in business now. If you submitted a message within the last hour and it is not appearing in the forum, it's only due to my interesting learning experiences. Please resubmit it.


    I'm sorry for the inconvenience. I still need to perform the upgrade, but next time I'll try it at a later hour.

  12. Hi Krista,


    I also have bone spurs in both shoulders. My first cortizone shot didn't work, as they missed the spot. The second one I had done by a physiatrist, and she nabbed it perfectly.


    That reduced the swelling and inflammation enough to begin physical therapy, which did not involve exercising. It began with ultrasound treatments, hot/cold packs, and later on, very gentle stretching. Gradually I was able to do more stretches, but at no point did it devolve into exertional exercise or a vigorous round of racquetball.


    I was thrilled to be able to do simple things again, like lift a milk carton or put on a jacket without wincing or yeowching or having to bypass the activity altogether. I was also highly motivated to follow all of the PT advice, since they threatened me with surgery to remove the spurs if therapy didn't work.


    That was nearly 10 years ago, and I've been doing fine ever since. A few times it has acted up, but by promptly starting anti-inflammatories, using cool packs, and resting and stretching, it has rather quickly settled back down again. So don't avoid PT over fears of exercising. Usually PT is quite the opposite, with firm instructions to coddle the affected part until healing is sufficiently underway.


    I may be wrong (I often am!) but I'd say you need the PT and the most the rheumatologist could do is probably send you back to the PT. Sometimes it takes a little while for the cortizone shot to kick in, but in my experience, it quelled things just enough to begin PT, and certainly did not bring it back to anywhere near normal all by itself. The PT was priceless!

  13. Hi Gidget,

    That treatment plan sounds a bit unusual, since as I understand it, d-pen has largely fallen by the wayside for treatment of scleroderma. See:
    Ineffective Treatments: Penicillamine

    You may want to consult a scleroderma expert for a second opinion, if you haven't already. It's my impression that some scleroderma experts still use d-pen under certain conditions, but if it were me, I'd really think twice about accepting the idea from anyone else, and I would want to know the reason they are prescribing it and what research they are basing their ideas on. It's possible they just may not have discovered the most recent research, since for many years d-pen was "the" treatment for scleroderma.

    Also read our page on Cytoxan Clinical Trials for Scleroderma.

  14. Hi Michelle,


    I agree, you need to go to Urgent Care or ER immediately. We simply cannot replace the expertise they provide. Whenever any of us experience a new or worsening symptom, we should be calling or going to a medical provider immediately. Sometimes even the slightest delay can be dangerous.


    It could be something minor, like a little blood vessel rupturing due to the vomiting. Or it could be something more serious. Since none of us are doctors, you must consult one right away...and then let us know how it all turned out, okay?

  15. Dear Lynn,

    Unfortunately, no face cream will make a difference in stopping the process of skin hardening in the face. It is extremely important to see a scleroderma expert about this. They need to know about the progression of skin involvement and perhaps they will have some treatments that can allay the further development of fibrosis.

    There is a fabulous scleroderma expert center at Royal Free Hospital. See:
    Scleroderma Experts and also Prof. Carol Black .

    People may suggest brand names of face creams to you by clicking on the button for "Send Me a Private Message" which is in the lower left hand side of your message (since we try to avoid brand names in the main forum to discourage salespersons.) Just keep in mind that no ordinary face cream is going to make a difference in the disease process, and that you need to see your doctor about this development.

  16. Do you admire the photos next to people's messages in the forum, and wish you could have one of your own?


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    What are you waiting for? Today is a great day to play with avatars and to add some color and interest to your Sclero Forum posts. We dare dare double-dare you to get a new or revised avatar right now. ;)

  17. Unfortunately, scleroderma can also affect the voice.

    This is listed on our main site as Dysphonia (Hoarseness, Loss of Voice) in the Gastrointestinal section. Here is an excerpt:

    Scleroderma affects the larynx and causes the dysphonia. This could be due to the over production of the extracelular matrix and the oedematous stage of the disease. There is still a need of a large series to show the types of the laryngeal pathology. M. Tezer. FRI0326 EULAR 2004.

    In addition, heartburn can cause changes in the voice. That is treatable and should not be ignored, so be sure to consult your doctor or scleroderma expert for any new or worsening symptom. (Also see Symptoms of Scleroderma Main Page)

  18. Hi Louise,


    If people have a suggestion regarding a particular food or brand, they may send you a Private Message (using the button that says "Send Me a Private Message" in the lower left hand corner of your message), since we need to largely avoid brand names of commercial products on the board.


    It's also a bit of a slippery slope to get into discussing a lot of foods and their benefits. However, we do have a page on Scleroderma and Diet which mentions a few beneficial foods, particularly yogurt with active cultures, the Mediterranean Diet, and olive oil...plus even more importantly, foods to avoid for various scleroderma symptoms. Many foods can worsen Raynaud's or heartburn, for example, including some most of us would never even suspect.