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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Visit With Gynocologist

    Hi Ann, We also have a section of our site devoted to sexuality and scleroderma. It is very common to encounter some sort of sexual difficulties with scleroderma, but equally important to find satisfactory ways to accomodate them. Just because some things may be more difficult (or occasionally, impossible) does not mean that the joy, love, warmth and caring of the relationship should be impaired because of it. There are many ways to show and express love and to satisfy our partner's physical and emotional needs, as well. It is easy for things to spin out of control with a chronic disease, and it is highly recommended for us to seek counseling if or when the illness is threatening one of our close relationships. Fear and frustration can quickly displace hope and acceptance! Although it sounds very trite, and is very difficult, try to look at things from your spouse's point of view, i.e. how he must feel threatened and insecure by the rapid changes brought about by your illness. He probably needs more education about how the illness is affecting you, and conversations about ways in which you can work together to enhance your love life. I know it seems the focus should be on us when we are the ones having the illness; and it should be; but that's usually not how it works in reality and it is not in the least bit uncommon for spouses to get their noses bent out of shape as each new problem with the illness develops. You will need to bring to bear all your coping skills not to just get through this, but to get through this with a stronger relationship. I know you can do it but I can't promise that it will be easy! Extra warm hugs to you. Please see this link for more in-depth information: http://www.sclero.org/scleroderma/support/emotional-adj/a-to-z.html#sex
  2. Shelley Ensz

    Getting To Know You - Archives

    Hi Satya, I'm delighted that you have joined Sclero Forums, but very sorry that it is because of your recent diagnosis. Way too many of us know what it is like to not have any acknowledgement or acceptance or understanding of our diagnosis from family, friends, co-workers, and even doctors. I was totally dismayed by it when I was first diagnosed. I think a huge reason for it is that people simply do not respond the way we think they should or would, when it comes to illness issues. Although another big factor is the lack of awareness of scleroderma. Most people have no clue what it is, how serious it can be, or anything. But most of us here know what it is like to be ill, and to encounter less-than-ideal responses. I know it hurts particularly bad when it comes to parents. Try to keep the focus on your own life and your wonderful activities and interests, since those who don't undertand will only serve to drag us down. And that is the last thing any of us need! Warm Hugs, Shelley
  3. Shelley Ensz

    Should I Try The Cynergy For My Red Dots?

    Hi Jennifer, If I had the money to gamble with it, I probably would, just because it's a little bothersome to have to be covering them up with makeup all the time. The thing is that sometimes telangiectasia caused by scleroderma are resistant to laser therapy, so they may return, or others may pop up. As long as you have the money for it, and you don't set your hopes too high, what do you have to lose? The worst that could possibly happen, I'd think, would be that you'd end up with the same complexion you have now. Please let us know if you have it, and whether (or how long) it lasts. Good Luck and Warm Hugs, Shelley
  4. Shelley Ensz

    A Little About Emmie

    Hi Emmie, It's so nice to hear your story. You set a wonderful example of adjusting and overcoming. And I did read all of it. So what is my prize? I'm thinking, maybe, maid service for a year, or a Rolls Royce? Ante up! All of us who read your story should get our pick of our own favorite prizes. Oh, wait, I don't need maid service, as I already have some robots. And I really don't want a Rolls Royce, come to think of it. It's a little uppity for my simplified rustic lifestyle. For my prize, I'll settle for just having you post some more, okay?
  5. Shelley Ensz

    Nan's Visit To Johns Hopkins

    Hi Nan, It sounds like you had a good visit at Johns Hopkins, but I'm sorry that you have to cope with watermelon stomach and damage from Raynaud's, too. I hope your PFT goes well. Thanks for updating us!
  6. Shelley Ensz

    Motivated By Desperation. Paralized By Fear

    Hi Barefut, I'm counting on the idea that once the meds kick in, you will find that you will be able to once more experience being motivated by dreams and leap into action with hope. I've been maritally recycled several times, and in retrospect, I really wish I hadn't gotten my pants in a bunch over any of it. What I thought was completely devasta ting and depressing at the time, I now look back on and totally rejoice that my life took that path to lead me where I am today, with a fabulous marriage of nearly 26 years. Now I always try to comfort and inspire myself by looking for the silver lining, whenever I see clouds, because every difficulty holds the seeds of an equal or greater opportunity. That means, Opportunity is knocking on your door! And if you meet her head on, just like you are doing right now, you will soon be a veritable happiness factory. After all -- you're not going to be divorced (yuk!) -- you're going to join the adventurous world of the maritally recycled with a whole new lease on life...after the meds kick in, that is. You can do it. And there are plenty of folks around here who can attest to the fact that happiness and friendships and romance knows no bounds, not even among those of us who are ill. Trust me, there really is a light at the end of the tunnel.
  7. Hi Lisa, I'm absolutely overjoyed with the tremendous success of your 2nd Annual Scoring for Scleroderma soccer tournament!!! It is fabulous the way you've involved the community, players, and businesses, and all of that also helps raise awareness for scleroderma, too, plus vital funds for us to continue delivering stellar research, support, education and awareness for scleroderma all around the world. We all truly appreciate your efforts -- and your fabulous enthusiasm, too!! Kudos on another event very well done and excellently managed by you, from start to finish.
  8. Shelley Ensz

    Digital Ulcers

    Hi Rachelle, A rule of thumb is, if it's not getting better within a month, it's not healing, it's getting worse! In which case, it is time to ask your doctor for a referal to a Wound Care Center, like the one Joe is attending. They use the latest techniques to heal difficult ulcers. Continue to consult your doctor every few weeks if an ulcer is not healing. Eventually everyone seems to find a technique that works for them, but in your case, it would be very important to seek expert advice to get it on the road to healing now.
  9. Shelley Ensz

    Doctor Information

    Hi Rachelle, There are only a few dozen scleroderma expert centers in the U.S. so many of us have to travel a long ways for one. However, there are three centers in Ohio. The Scleroderma Clinical Trials Consortium (SCTC)experts in Ohio are: Institution: Cleveland Clinic Foundation 9500 Euclid Avenue/Desk A50 Cleveland, OH 44195 Coordinating Investigator: Soumya Chatterjee, MD, MS, MRCP Other Local Participants: Jeffrey Chapman, MD Constance Jennings, MD Rula Hajj-Ali, MD Telephone Number: (216) 444-9945 Fax Number: (216) 445-7569 Email: [email protected] Institution: University of Cincinnati Medical 231 Albert Sabin Way, ML 0563 PO Box 670563 Cincinnati OH 45267 Coordinating Investigator: Khanna, Dinesh MD Phone Number: (513) 475-6453 Fax Number: (513) 487-6611 Institution: Medical College of Ohio 3000 Arlington Avenue Toledo, OH 43699 Coordinating Investigator: Kahaleh, Bashar, MD Professor, Chief of Rheumatology Other Local Participants: Santoro, Thomas, MD Telephone Number: (419) 381-5282 Fax Number: (419) 382-0354
  10. Shelley Ensz

    A Little Sadness In My Life

    I'm very sorry to hear that, Whirlaway. My thoughts will be with you.
  11. Shelley Ensz

    Hearing This Morning

    Good luck, Sam!!
  12. Shelley Ensz

    Frustrated With Insurance!

    Hi Erin, I'm sorry you couldn't get your infusion. It sure sounds like you have an interesting insurance company. I hope something works out so that you feel a little bit better soon.
  13. Shelley Ensz

    Head Sweating Profusely

    Hot flushes are a side effect of many medications and some supplements, so it can prove fruitful to do internet searches for side effects of your entire medication list (including supplements). And/or call your pharmacist and ask them to review your med list for hot flushes as a side effect. To the best of my knowledge (but, I'm not a doctor, and I don't have any medical training at all, so I may be wrong!) they aren't necessarily any sort of symptom of scleroderma.
  14. Shelley Ensz


    Hi Gizelle, I'm very glad to hear that your surgery went fine!
  15. Shelley Ensz

    New Treatment For Telangiactasias

    We have Dermablend makeup, and Jane Iredale (mineral makeup) listed on the main website. See Telangiectasia (Red Spots on Skin). Basically, look for the term "corrective cosmetics" when seeking coverage for telangiectasia or other inflammatory issues. Normal cosmetics are not intended to provide enough coverage, so they often need to be used very heavily, which usually doesn't look natural. If you are on a limited budget, consider springing for the foundation but use other (cheaper) products for blush, shadow, lipstick (etc.). It is the good foundation that hides 99% of the flaws.
  16. Shelley Ensz

    I'm Having Surgery

    Hi Gizelle, Good luck with your surgery! I am sure it will go well, and will be sending good thoughts your way. It sounds like something you'll be very glad to have done, once it is over with.
  17. Shelley Ensz

    Traumatic 24

    Hi Barbs, I have to confess, I started reading this thinking it was going to be another one of your ever-humorous postings. What a comeuppance I had! I'm very sorry that your mum and dad are both so ill and hospitalized. I'm curious whether you got your lively sense of humor from either or both of them? Shall we start placing bets now on which of you gets out of the hospital first? I am hoping it is you, as you have plenty enough to deal with already! And of course we will all be sending good thoughts your way, in hopes that things improve for your entire family.
  18. Shelley Ensz


    Hi Erin, I'm glad you finally got a diagnosis, although I'm sorry you have Ankylosing Spondylitis. Just a few months ago we carried an article that touched on it. With any luck, they will be figuring out how to diagnose people with it sooner. Scientists to unlock genes behind common serious illnesses. The biggest DNA analysis of whole human genomes will shed light on why some people are more at risk of developing a serious illness. They are examining 15,000 markers for genetic variations relating to another four diseases - breast cancer, autoimmune thyroid disease, multiple sclerosis, and ankylosing spondylitis. Guardian Unlimited. 04/14/07.
  19. Hi Nan, I'm thrilled that your anemia hospitalization was finally covered by insurance. Congratulations! But I'm sorry you will need treatment again. I hope the next time they have the good sense not to wrangle over the bill like that.
  20. Shelley Ensz

    Getting To Know You Thread Is Pinned...

    What a great idea, Carrie. Thank you!
  21. Shelley Ensz

    Rituximab Therapy For Scleroderma?

    Hi Mike, It's a fair enough question. At the moment, there is an FDA Health Advisory out for Rituximab, which we have posted in our main Medications: Rheumatic section. FDA has received reports of the death of two patients who were treated with Rituxan for systemic lupus erythematosus (SLE). Both patients developed a life-threatening viral infection of the brain. U.S. Food and Drug Administration 12/18/06. Part of the FDA warning says, "Rituxan is approved for use only in patients with certain types of cancer called non-Hodgkin’s lymphoma and for rheumatoid arthritis when other treatments have failed. Rituxan is not approved for the treatment of SLE."
  22. Shelley Ensz

    Getting To Know You - Archives

    Hi Timo and LoriAnn, It's a great pleasure to have both of you join Sclero Forums, and with such inspiring stories, too. I look forward to hearing more from both of you. Welcome!!
  23. Shelley Ensz

    Test Results

    Hi Celia, As I understand it, due to newer technology, they are picking up on more and more abnormalities that turn out to be nothing serious at all. I had a handful of different serious-sounding (to me) abnormalities on lung cat scan (besides my usual fibrosis), which they tracked sequentially for two years. The end result? Everything was still basically the same and nothing to worry about at the end of two years, including subpleural nodule, granulomas, and a "suspected thymic or bronchogenic cyst", pericardial fluid, fibrosis on both bases, etc. I just wish they had told me in the first place that the odds were great that all of this would be nothing at all. I hate to waste even five minutes of worry over something that turns out to be okay, and two years is a long time to have even little teensy snippets of worry, if you ask me. So, since my doctor didn't bother giving me any assurances at all, please take it from me, that it is very understandable to wonder about this, but try to relax and picture how superbly ridiculous you will feel two years from now when they finally issue a comparatively clean bill of health for your lungs. I felt like a total idiot for letting it bother me for even a second, not to mention passing doubts for two years. The old line, "Don't trouble trouble til trouble troubles you" is generally great, although the sneaky thing is that an abnormal cat scan may obviously make us think that trouble has already troubled us, whereas its mainly due to the oversensitivity of the tests today, picking up things that in prior years would have been completely overlooked. And if it really is trouble with a capital T, it will still take at least 6 months to 2 years to know that for sure. So then you would be glad you had saved up all your worry worts for Real Trouble, or perhaps even just a passing inconvenience, depending on their findings. I hope all of it turns out well. My hopes will be with you.
  24. Shelley Ensz

    Johns Hopkins Information Package

    Hi RTS, It is a series of excellent articles on scleroderma. Very easy to read and very informative, too. Thank you!
  25. Shelley Ensz

    Raising Scleroderma Awareness Now!

    Thank you for helping raise awareness, Barbara -- we all really appreciate it! And it also shows the difference each one of us can make as individuals, by simply wearing our awareness bracelets, giving out brochures (or setting them out or making them available to our doctors), and just talking it up, in general. That is definitely tackling scleroderma now...without any huge investment of either time or money.