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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Ann,


    If you are going to manage the trip at all, I'd recommend doing absolutely everything in your power to promote relaxation, every moment. Pack some nourishing foods in your carry-on (fresh vegetables, grapes, nuts, dried fruits, nutritional food bars, whatever) so you aren't stressed from hunger or junk food during flights or layovers. Drink lots of water to stay well-hydrated.


    Dress in layers for the Raynaud's, with one more layer than usual since it is usually colder in airports and airplanes. I use one carry-on for a foot rest (since I'm short, and it alleviates back aches). Do not have drinks with ice or cold pop cans (again, Raynaud's). Do try to get hot tea, it is relaxing. And warm! Take extra meds along. You'll probably need them.


    I'm also a big fan of the worst-possible scenario. Once you figure out how you'll deal with the absolute worst outcome, it is amazing how you can face other disasters with aplomb. After all, what is an extended layover or rough weather, next to an obliterating plane crash? Granted, that idea gets some people in an even worse tizzy, but for me it really quells any nervousness and helps me take things in stride.


    Try to picture yourself as being in the eye of the storm, where it is nice and peaceful, rather than on the erratic fringes. Let the storm go on around you but not in you. Tell yourself you will sleep like a baby. Have an absorbing book with you, even some puzzles.


    Do deep breathing and relaxation exercises at every opportunity. There is no such thing as a "terrible wait" if you have absorbing things to do in the meantime. Imagine that you are flying to Tahiti (or wherever) rather than into cold territory.


    I live in Minnesota. The secret to handling cold weather is to not handle it. Keep the thermostats cranked, wear warm clothes all the time, seek warm food and drink.


    In other words, plan like all get out for making it as easy on yourself as possible. Also plan for the fact that you will probably be "boots up" for at least awhile either during or after the trip...and make that time as pleasant for yourself as possible too. Such as, good movie, good book, even hobby or craft to work on.


    Ah, and mercilessly pace yourself even when you are there. Establish your boundaries! Tell your brothers you can handle, for example, 2 hours of in-person activity a day, that you will need to rest until noon and have the evenings free. Ask them what would be the very best use of your time. Save yourself for the most important things. Bypass all the unimportant things, or things that other people can handle.


    Whatever you do, don't march in there trying to pretend you are your old, healthy self. Nobody can take care of you, except you.


    And if I were you, if it was in the least bit possible, I think I'd postpone the trip altogether until dad was out of rehab (when I could see him more, and when he'd appreciate the extra help around the house) than right now, when your brothers are there to help, as well as the hospital staff.


    The weather would be nicer in a few months, and you could be there when everyone else seems to be evaporating, to help make that transition time easier. It's a thought, but if you are already set on going, GO -- and make the very best of it you possibly can!


    I nearly forgot -- earplugs and eyepads to keep out the extra noise and lights encountered during trips.

  2. Hi Margaret,


    That's a good question, and thank you for bringing it up. We already have our ISN toll free telephone number for people to call. So, for example, Janey's husband called me when she was admitted to ICU, and Janey called me when she felt a little better.


    However, we do not post information like that on the website or make it widely available to members because it jeopardizes their personal safety. For example, when people are in the hospital, their family is often there by their side -- leaving their home wide open to burglary.


    Unfortunately, many burglars take to the internet to find easy targets nowadays, and victims of illness are the easiest target of all -- especially because they might also have some good drugs (i.e. painkillers) around the house. Plus a working computer, too!


    We also do not publicize vacations, for the same reason. If people want to share that information with their friends or elsewhere on the Internet, that's fine. But we try to bypass revealing information like that on our board (as much as we can catch it.)


    Not that this is happening in any of our current situations at all, but sometimes people will "play" the message boards and create dire or urgent situations to have everyone sitting on the edge of their seats....and then disappear for awhile to have their (fake surgery, fake disaster) event, with even more harrowing tales upon their return. We've seen that happen many times in our scleroderma online community, mostly perpetrated by one very well-known faker, who uses many different screen names.


    So when people call our nonprofit hotline with news or updates on their health or that of family members, we specifically ask them who they want us to *privately* share the information with. Even if they ask, we will not post it on the message board if the person is in the hospital.


    People will say, yes, but, they announce the names of all the people in the hospital at our religious services each week. And we say yes, but those are people you know and perhaps people you have reason to trust. That is entirely different than the Internet, where mostly nobody really "knows" anybody, and where untrustworthy people can be present at all times -- sadly enough!


    So it is a very real issue, and we do care, and we really do want to know what happens to everyone. But we do not want any members exchanging phone numbers or addresses unless they are absolutely certain of who they are revealing it to. That is just a basic rule of internet safety...for adults and children, alike.


    Our toll-free number is 1-800-564-7099. For those outside of the U.S., it is a direct dial (at your expense) phone call to 1-952-831-6091. Or an email to [email protected] with instructions on what people you would like me to notify. It is fine to give our number to your friends and family to notify in case of emergency. (Many people do that, and we do appreciate it!)

  3. Hi Barefut,

    It's my understanding (and please correct me if I'm wrong!) that if it is a mild and fleeting thing, it may be nothing to worry about. If it is stronger or recurring, you will need to check with your doctor on it.

    Many people have palpitations without any underlying heart disease. Major culprits for that are coffee and stress. See our section: Arrhythmias, Palpitations, and Conduction Disturbances.

    Spasms in the esophagus (throat) can also give some interesting feelings, as can any fasciculations (tiny muscle spasms or tics or twitches). Fasciculations are usually harmless and often caused by things such as caffeine, stress, magnesium deficiency or even withdrawal from some medications.

    You may want to read up on palpitations and such, and of course, consult your doctor over any new or worsening symptoms (because I'm not a doctor, I have no medical training at all, and I could be wrong, I often am!).

  4. Hi Jennifer,


    There might not be much that can be done, if it is part of the disease process (which it very likely is.)


    See: Scleroderma Skin Involvement. And particularly this section:


    Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring. Tightening of the skin of the face may lead to microstomia - a small mouth. Facial and mouth exercises may help. "Disappearing lips" can be a very upsetting cosmetic problem and a reputable plastic surgeon may be able to perform an operation called a mucosal advancement. Royal Free Hospital (Also see: Dental Involvement)

    I'm sorry that's not very good news. On the positive side, it really is true people notice facial expression far more than they notice facial features. You may notice that smiling makes the grooves disappear or at least be less noticeable. Frowning, or lack of expression, makes them more prominent.


    So although it seems very trite, the best treatment for scleroderma lips is to smile! It is a good stretch for the tight skin, and it distracts people plus brightens up their day at the same time.


    Lip thinning can be covered up (a little) by using a lip liner the exact same shade as lip color to extend the lip area -- and the closer both of these are to your natural lip color, the better -- then if/when the lipstick wears off the lips, the liner will not be noticeable, and it looks as though the lips are larger and fuller.


    Telangiectasia can be covered up well with DermaBlend cosmetics, or with my personal favorite, which is a mineral (brush on) foundation. A properly matched mineral makeup looks virtually invisible and is extremely easy to brush on. Some brands are anti-inflammatory. Mine covers all sorts of my imperfections, including telangiectasias, rashes, freckles, moles, and even facial (and eye) psoriasis.


    Distraction is also one of the major ways to improve looks. If you don't want people looking at the cannula, wear a lively hat, or a bright scarf. My husband, Gene, wears the OxyView glasses, which deliver oxygen through tubing in the glasses, so he doesn't have a visible cannula.


    Also, wearing stronger eye makeup can draw the attention to the eyes. Lucky for nearly all of us, the eyes are the #1 feature for sexual attractiveness...and eyes brightened up by a glowing smile simply can't be beat!

  5. I just wanted to point out that Judith did not make a typo with "Scleredema" --


    Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke. This is a very rare disease. Up to 1965, only two hundred twenty-three cases of scleredema had been reported worldwide.


    Read Sue Ann's story for more information and an update on her son's progress.

  6. Hi HDHBCH,

    Welcome to Sclero Forums, I am glad you found us!

    Gidget makes an important point. Scleroderma is a very unusual and difficult illness to treat. Most doctors may see only one or two cases of it in their entire career (if that). Thus, odds are very good that they don't know how to manage and treat scleroderma. Some medications that are perfectly okay for other (or even similar) illnesses can backfire with scleroderma patients. (See our recent discussions about prednisone for an example.)

    There are a few dozen centers in the U.S. that specialize in scleroderma. The best thing you could do would be to consult a scleroderma expert. They can review your treatment plan and make sure you are on the very best medication(s) for your condition. See Scleroderma Experts.

  7. Janey, as you know, I am thrilled to pieces that you are back home and starting on the road to recovery. I really can't imagine all you've been through.


    I must say, you were adamantly optimistic through the whole ordeal, and I think your attitude had a lot to do with the fact that you pulled through, despite everything.


    It's great to have you back...even with very wobbly legs and in-home rehab!

  8. Hi Peanut,

    Sometimes prednisone might be unavoidable, but many doctors prescribe it readily, and they may not be aware of the especially adverse impact it can have on scleroderma patients.

    At the very least, I'd make sure the matter was thoroughly discussed and that your doctor is aware of the risks involved. Usually there are alternatives to steroids. (But of course, I'm not a doctor, I have no medical training at all.)

    See our Scleroderma Lung Treatments page for some ideas. And do the best you can, under trying circumstances.

  9. Jackie, I just couldn't resist....I gave you an "avatar gift" of shoes so we all have something to remember your good day with.


    For those who don't know about avatars yet -- they are the little picture underneath each member's name, next to their post. You can select an avatar from our large selection that has been custom designed by our ISN artists. There are hundreds to choose from, in many different categories.


    To set yours up, or to change it, click on the link for "My Controls" which is near the upper right hand corner of the page. Select the link for Avatar settings that you will see in the left column, down a ways. And follow the simple directions to pick (or change) your avatar.

  10. Hi MaryFanPhilly,

    Thank you for pointing out the issues that you are encountering with prednisone.

    I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be!

    Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Medications: Steroids.

    When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids.

  11. Hi Sakar,


    I'm sorry you are so sick. My advice would be just to call your local Urgent Care or Emergency Room. Or just go in. This is not normal. The color change might be caused by a medication, since they can do that.


    But in my humble (and my I'm-not-a-doctor) opinion, you seriously need to have your treatment plan reviewed and your g.i. problems further investigated.


    Most doctors are simply not set up to handle urgent problems or acute illness. You can call them if you want -- after you call the E.R. and ask for a triage nurse, who can tell you how urgent your symptoms are, and how soon you need to be seen.


    That can make the difference between knowing whether you have time for a shower before you go to ER, or whether you can mosey on in to your doctor's office in a few weeks.

  12. Hello Smac,


    I'm very glad that you have found us, but sorry it is because you have diffuse scleroderma. It's always such a catch upon being diagnosed -- on the one hand it is super to have answers, at long last. And on the other hand, it can be quite daunting at first.


    But we are here for you, and delighted that you have joined us.

  13. Hi Barefut,

    Well, as you know, we don't have any medical training at all, and this is an issue for your medical team. We can share bits and pieces, but nothing on earth can replace an in-person evaluation by a medical professional.

    My husband has lung disease, and his lung doctors ask him about ankle swelling and examine his ankles at every visit. Lung problems can affect the heart and the reduced circulation can cause swelling.

    As was already mentioned in this thread, kidney failure can cause swelling, too. Not to mention that scleroderma skin involvement typically starts as fluid retention in the affected area.

    Also, many medications -- including prednisone -- can cause swelling of the legs and feet. Thus, we need to send you back to the doctor again. Sorry! sad.gif

    To see the impressive list of nearly everything that can go wrong with the systemic types of scleroderma, many of which could cause fluid retention, see: Scleroderma Symptoms.

    Often, just reducing salt in the diet (particularly hidden salt, as found in processed foods) and increasing walking and activity levels can get many cases of fluid retention under control.

    I'm very glad that you've found some pain relief, and I really don't want to rain on your parade, as I know how precious even a few moments of relief can be! But most unfortunately, another thing to seriously discuss with your medical team is that prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Steroid Warnings for Scleroderma..

    It's a constant balancing act, isn't it? Please let us know what you find out.

  14. Hi Giorgigirl,


    Please keep in mind I have no medical training at all, but it sounds to me like sciatica. See your doctor for further info, and possibly for some physical therapy. It tends to be a chronic condition but there are many things that can be done to alleviate the pain.

  15. Just another reminder to please resend any emails to sclero.org that you sent us in the past week.


    Also, many threads dropped by the wayside because members were not receiving notification of posts (many people rely on receiving posts in their email, rather than visiting the board for messages.) So if you'd like some more response to any email thread, just post a message in it and it will start the ball rolling again.


    We apologize for the inconvenience we caused everyone from our email service being interrupted.

  16. Our sclero.org email system was down for the past 3 days or so, while we attempted to transition to a spam-free system. Technical issues were not able to be resolved, so we abandoned that project and are back to our old email system.


    This has affected all of the Sclero Forums emails, so members have not been receiving notification of posted messages or daily digests, or subscribed thread alerts.


    If you have begun or participated in a thread that seemed to fall by the wayside in the past few days, and you still would like input on the topic, please post another message to that thread in order to get the ball rolling again.


    Also, if you have sent any emails to anyone using their sclero.org email address, within the past 3 or 4 days, could you please resend it? Theoretically, we were supposed to not lose any mail permanently during this attempted transition -- but it looks like we might have lost everything. Either that, or there will be a huge server burp, delivering up over 4,000 waylaid spams for our viewing pleasure.


    Thank you for your patience and understanding -- and for your help in gettting things back on track. We really appreciate it!

  17. Hi Patty,


    I'm sorry you're experiencing more issues. If you are still in pain, please go to the hospital E.R. Most doctors offices aren't set up to handle acute illness. It seems they prefer to see us when we are perfectly healthy. :(


    It's my understanding the pancreas problems usually cause low blood pressure, but I may be wrong (I often am, and I have no medical training at all.)


    Anyway, steroids could be a cause of pancreas problems so you'd really want to get things sorted out as soon as possible.


    Perhaps you've had this before and know what you're up against, but if you are just guessing that its pancreas problems because of pain in that general area or similar symptoms to what is listed for it, please be sure to get examined right away.


    It's just way too easy for all of us to be wrong about pain and dysfunction in internal organs...and it is also too soon to just chalk it up to scleroderma, because everything else needs to be ruled out first.

  18. Mike, you were asking what the "best posts" were on this forum. I'd have to say this is my most favorite thread of all, where we've been able to get to know many of our new and old members.


    And it's the ideal thread for new (or old) members to try posting their first message. It can be about anything you want -- hobbies, pets, families, medical challenges, etc.


    Reading the forum guidelines can be helpful before posting. But they are a lot to remember, so it is okay to just post away and let our team of support specialists modify your message to fit all our peculiar guidelines.


    It can take anywhere from just a few minutes to a few hours (sometimes longer) for your message to be reviewed and posted, so don't despair if it doesn't show up right away, it doesn't mean you've done anything wrong. If you type something and then hit the "Send This Message" button, odds are very good it will get posted on the board sooner or later.


    So we invite all the newbies, or even oldies who haven't introduced themselves yet -- or who want to introduce themselves again or talk about another aspect of their lives -- to get yourself comfy and make yourself right at home in this thread.