Shelley Ensz

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Posts posted by Shelley Ensz


  1. 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.


  2. 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!


  3. 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.


  4. 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?


  5. 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.


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

     

    The photos by messages are called "Avatars", as opposed to "Profile Photos" that only appear on your forum profile page.

     

    You may upload a photo of yourself, or use one of our lovely avatar photos or drawings.

     

    Before using an identifiable photo of yourself, please read our Forum Guidelines, particularly:

     

    Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers...even many years later. Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and username, in keeping with our neutral zone policy.

     

    If you would like, our ISN artists can retouch your photo to make it personal but still unidentifiable, such as by adding an eye mask or humorous element. Simply email your photo to [email protected] with your request or any special instructions and we will create your avatar and upload it for you. We will also gladly do this upon request for anyone who already has an identifiable avatar posted.

     

    We also have a lovely collection of avatars that were designed by ISN Artists. There are hundreds to choose from in many categories, including Animals, Birds, Butterflies, Flowers, People, etc. To pick out your avatar:

     

    1. Go to My Controls, which is linked near the upper right hand corner of each page.

     

    2. Down in the left-hand column you will see Personal Profile. Click on Avatar Settings.

     

    3. On the avatar page, you will see a dropdown list of categories, starting with Animals. Select a category from the list and click the GO button.

     

    4. Click the radio button by the photo (avatar) of your choice and then click the Use Selected Avatar button. That's it! All your forum messages will now display with your lovely new avatar.

     

    5. You may need to hit REFRESH in your browser to see the changes on the forum pages.

     

    You may also upload an image from your computer for use as an avatar. They must be under 50KB in formats of GIF, JPG, JPEG, or PNG. The final size we actually use is 90 pixels wide, and usually about 4KB in size. You will get best results if you shrink your photo down to that size before uploading. A good free online graphics shrinking program is: http://www.shrinkpictures.com/ .

     

    If you don't know what that stuff means, just pick one of ours. You may change your avatar at any time.

     

    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. ;)


  7. 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)


  8. 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.


  9. Yes, Sherrill, the rich text editor setting will work only with IE6+, Mozilla or Firefox. So switching to Firefox would work dandy.

     

    Also, Heidi found that the forum worked better with Firefox than IE for her.

     

    I was going to just change everyone's default to rich text editing, but since that won't work for other browsers, I'll keep my hands off it and let people change their own preferences.


  10. Just to clarify the mentioning of medications, we allow the mention of any mainstream prescribed medication, except for those that are addictive, such as some sleeping medications and narcotic pain relievers, or things that can create a "high" if abused.

     

    We try to avoid mentioning those types of meds since drug addicts sometimes join illness message boards trying to find people they can befriend or burglarize to attain drugs illegally. It's a sorry thing that things like that can happen, but they do, and this guideline helps protect us all, and discourages those type of people from joining our forum in the first place.

     

    If you ever receive a private communication from someone on this forum who wants to know whether you use addictive or narcotic medications, please report it to the Forum Administrators right away. That should be between you and your doctor, and nobody else.

     

    On the forum, you can report narcotic pain medications as simply being "pain medications" or "sleep medications". There are a wide variety of them and not all of them are addictive or sought by drug abusers.

     

    We all have a right to privacy, too, so never feel obliged to answer if any of us ask about your particular medication use. Sometimes we ask just for the sake of conversation, and certainly, none of us are doctors and can't advise treatment, so it is largely beside the point. Even though it is a understandably a pretty popular topic of conversation around here. ;)


  11. Hi Louise,

     

    I have great news for you -- you will probably feel fabulous!

     

    Skin biopsies tend to be very easy and quite painless, not much worse than a mosquito bite or bee sting. The local anesthesia is just something to numb the skin in that area; it is not a pill or IV or anything that will have after effects.

     

    If you have Raynaud's, be sure to tell them so they can avoid using a vasoconstricting anesthetic, which can bring on an attack of Raynaud's.

     

    You might have a little bit of discomfort and about one stitch. But I'm sure you've had lots worse injuries and surgeries, and you will think of this (afterwards) as a walk in the park. The worst part of it is just thinking about it, beforehand!


  12. I'm not aware that Restylane has been tested/approved for use with scleroderma, though.

     

    "The safety of Restylane in patients with increased susceptibility to keloid formation and hypertrophic scarring has not been studied. Restylane should not be used in patients with known susceptibility to keloid formation or hypertrophic scarring."

     

    Scarring can be quite an issue with scleroderma patients, so it would be advisable for everyone to consult a scleroderma expert before attempting any sort of correction.

     

    Sometimes, distraction is the best treatment of all. For example, if you wear a purple hat with a large green feather, people will certainly notice and remember the hat or the feather, before noticing or remembering any other feature.

     

    Particularly, if you are a guy. :blink:

     

    Purple hats, anyone?


  13. Hi Sweet,

     

    That's a good question! We have a section on it at:

    http://www.sclero.org/scleroderma/symptoms/ski...z.html#collagen and here's an excerpt --

     

    "Patients with certain connective tissue diseases may have an increased risk of severe allergic reactions to collagen injections. These connective tissue diseases include, but are not limited to, rheumatoid arthritis, scleroderma, and juvenile rheumatoid arthritis. They also include polymyositis and dermatomyositis (PM/DM), which are chronic, progressive, and sometimes fatal inflammatory disorders.

     

    "Thus, collagen injections should be used with caution in people who have had these diseases. Some experts recommend that people who have had these diseases should either not be given collagen injections at all or should be given multiple skin tests before treatment.

     

    "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)"


  14. Hi Ron,

     

    Have you thought about trying to eliminate the possible causes? There are several factors that might be causing this reaction, including length of time standing up, the temperature of the water, the force of scrubbing, and the type of soap.

     

    You might want to consider reducing all the factors at once to see if it makes bathing more tolerable. Such as, using a shower bench to sit the entire time; keeping the water tepid (not warm and not cold, and certainly, not hot); using only the lightest possible scrubbing motion with hands (not rough washclothes); and using only baby soaps or shampoos or other nonallergenic products as prescribed by your doctor. Bear in mind that even a light toweling off might be the sort of irritation for your muscles, so try only very gently dabbing with a very soft towel, or simply wrapping yourself in an absorbent robe, or even air drying.

     

    Also, make it an absolute minimum time, like just a few minutes (set a timer) since just the length of the activity might be problematical for you right now.

     

    If you can survive a short shower like this, you may be able to take them more often and not need to use medication. You could gradually add back in one item (such as making the water temperature warmer) to see whether that is the thing that is causing the reaction or not.

     

    I'd suspect it would be a combination of everything that is defeating you -- the standing up, the water temperature, length of time, and vigorous scrubbing or drying off.


  15. Hi Judy,

     

    Welcome to Sclero Forums!

     

    I'm sorry to hear you have scleredema. We always have to be careful on our main website to not "correct" scleredema to scleroderma, since everyone always seems to think it is just a typo.

     

    Our section on scleredema is:

    http://www.sclero.org/scleroderma/symptoms/ass...html#scleredema

    It would be nice if you would submit your patient story to our main site, as we only have one story on scleredema so far, as it is very rare.

     

    You'll need to work closely with your medical team, and keep in mind that treatment and care for scleredema can be different than that for scleroderma. But our forum is for people who are interested in scleroderma and related illnesses and symptoms, so you are definitely in the right place.


  16. Another reason for posts that do not appear in the forum, or that are in the forum and disappear, is that they may have been deleted.

    Members are able to delete their own posts, which they might do if they had second thoughts about it or if they decide to post another version.

    Moderators are also able to delete any post, at any time, for any reason -- as part of a general clean-up, after moving the topic to another subforum, or because the post does not meet our guidelines and cannot easily be edited to fit them.

    Several of the most popular reasons for edited, unposted or deleted messages include brand names or links not mentioned on our main site, sales-oriented messages, and quoting from another author or source.

    The only quotes we allow must be from sources listed on our main site, that are very brief (less than 4 sentences) and that include a direct link to the full text by the original author. It is never okay to quote from another source without including quote marks and attribution, in an effort to bypass the copyright guidelines.

    However, it is fine to quote more extensively from our own website, www.sclero.org, but please include a link to the quoted page.

    Our Forum Guidelines explain that posts may be edited or deleted at any time, for any reason, and without explanation. We do not write and ask for revision requests anymore, like with the old forum.

    We also no longer explain the reason for the edit or deletion, other than to refer people to the Forum Guidelines again. This helps keep us focused on delivering general support for scleroderma, within the very limited scope of our mission.

    To be a contented member of this forum, expect to see some surprising edits of messages that you thought were fabulous (that happens to ALL of us!), and expect to have perhaps some of your most brilliant posts never see the light of day. Be sure to save a copy of such messages on your hard drive before you submit, lest your literary gems be lost forever. You might find another appropriate venue for them later on!

    Just because something isn't published here, or disappears, doesn't mean that the message was "bad", simply that it doesn't meet all of the intricate guidelines that are necessary to keep this forum running smoothly, legally, and basically on the general topic of scleroderma and related illnesses.

    Active participation in the forum means that inevitably many messages are edited or remain unposted. But chin up! Just shrug it off, and try again, with another topic, another post, another approach. Messages that do get posted may make a whole world of difference to someone in need, which makes the entire process very worthwhile.

    Submitting any message at all shows you care, and we all appreciate that! Go with the idea that it is better to submit a post and have it edited or deleted (and perhaps learn from it, which is optional) than never to submit a post at all.


  17. Yes, Steve, you got that right! I'm hankering for four squares, since I'm just on three now and you are nipping at my heels with two.

     

    I love your new avatar, by the way. In fact, I love all the avatars. They make the board seem so much more personal, and lively.

     

    I just noticed that the board assigns us Member numbers. (As in duh, where have I been, anyway?) All of the first 100 member numbers have been taken already.

     

    For those who have missed it, like me, the member number is to the left side of each post, underneath the avatar photo.


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

     

    The photos by messages are called "Avatars", as opposed to "Profile Photos" that only appear on your forum profile page.

     

    You may upload a photo of yourself, or use one of our lovely avatar photos or drawings.

     

    Before using an identifiable photo of yourself, please read our Forum Guidelines, particularly:

     

    Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers...even many years later. Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and username, in keeping with our neutral zone policy. Spammers also frequent our board to harvest email addresses, so we do not permit email addresses within messages. Members will still be able to reach you privately by accessing your profile page.

     

    If you would like, our ISN artists can retouch your photo to make it personal but still unidentifiable, such as by adding an eye mask or humorous element. Simply email your photo to [email protected] with your request or any special instructions and we will create your avatar and upload it for you. We will also gladly do this upon request for anyone who already has an identifiable avatar posted.

     

    We also have a lovely collection of avatars that were designed by ISN Artists. There are hundreds to choose from in many categories, including Animals, Birds, Butterflies, Flowers, People, etc. To pick out your avatar:

     

    1. Go to My Controls, which is linked near the upper right hand corner of each page.

     

    2. Down in the left-hand column you will see Personal Profile. Click on Avatar Settings.

     

    3. On the avatar page, you will see a dropdown list of categories, starting with Animals. Select a category from the list and click the GO button.

     

    4. Click the radio button by the photo (avatar) of your choice and then click the Use Selected Avatar button. That's it! All your forum messages will now display with your lovely new avatar.

     

    5. You may need to hit REFRESH in your browser to see the changes on the forum pages.

     

    You may also upload an image from your computer for use as an avatar. They must be under 50KB in formats of GIF, JPG, JPEG, or PNG. The final size we actually use is 90 pixels wide, and usually about 4KB in size. You will get best results if you shrink your photo down to that size before uploading. A good free online graphics shrinking program is: http://www.shrinkpictures.com/ .

     

    If you don't know what that stuff means, just pick one of ours. You may change your avatar at any time.

     

    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 an avatar right now. ;)