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About Pokey

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    Bronze Member

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    Manitowoc, Wisconsin
  1. Hello!! Haven't been to the site for awhile as my sister (diagnosed with systemic a few years ago) is doing wonderful! Awhile back I read something about running for scleroderma and was wondering if it is a type of fundraiser, and when and where it is. Anybody with any answers? Would love to hear from you.
  2. Hello Bill, I just read your story and felt I needed to reply somehow. My heart goes out to you and your family. I can not even begin to imagine your whole past year. Please try and stay as positive as you possibly can. I will keep you and your family in my thoughts and hope you begin feeling better each day. Thank you for your story. It is always interesting to hear first hand everyones history about this awful, consuming disease. Stories like yours help me to cope and learn so again thank you for sharing. Peace and strength, Pokey
  3. How about a new electric toothbrush or a fuzzy steering wheel cover. Pokey
  4. Hello again, First of all, let me thank all of you who took the time to respond to my questions. I value everyones input and again hope I did not offend anyone by suggesting their cat or cat litter caused this awful disease. I am going down a road you all have been down before just looking for any answers. If anything has come out of this it is "awareness" and that is a good thing. I love my sis very much and would do anything to help her in anyway. Love to you all, Pokey
  5. Hello, it has been awhile since I was last here as my sister (diagnosed last year at this time) has been doing fairly well. It was not until recently that I have become concerned again. This is going to sound off the wall, but I think we all have our own thoughts as to what "triggered" scleroderma. I do not want to offend anyone by suggesting this. I feel silly just saying it but here goes. "Louise" had a cat for about 7 years. When the cat began getting sick Louise started with "symptoms", first one being what she thought was carpal tunnel. Symptoms progressed until bad enough to make an appointment where about 5 months later a definite diagnosis was found: systemic scleroderma. She has found a rheumatologist who sees her every 2-3 months and honestly has been feeling better. She is now starting to be able to golf again and enjoy some of the things she used to. Back to the cat. The cat died around the time she was diagnosed and I have always be "leary" of them. My question is has anyone out there read about felines as a possible trigger for scleroderma and of those of you who have scleroderma do you have a cat or ever have had a cat? Please, please forgive me for those of you who love your cat dearly. I am just probably going on a silly gut feeling. Anyway, the reason I have become concerned recently is that her daughter, who lives at college, recently got a cat. "Louise" now watches the cat from time to time and I am fearful of a decline. Not only that but the cat is not de-clawed and if she gets a scratch on her hands or arms that is not going to heal very fast, is it? Louise has no idea about my thoughts as she loved her cat very much. So again, does anyone else believe cats or even being exposed to cat litter may be a possible "trigger". I would appreciate any input on your thoughts. I will keep you posted as well. Thank you all for your time. Love and Peace, Pokey
  6. Hello Peanut, Blessings to you (and your good looking husband, too)! Keep up the good work! Pokey
  7. Hello, My sister was diagnosed with Diffuse Scleroderma in December of last year. Since then she has talked with a few people who also have this wicked disease. We are a little confused because somebody told her that a pulmonologist feels Ibuprofen should be avoided altogether and to only take acetaminophen. My sisters rheumatologist never advised she not take ibuprofen. She takes 400mg up to three times a day. I am aware that it can cause stomach problems however how do the lungs and ibuprofen relate? Can it be harmful to the lungs as well? We are all very new to all of this and would appreciate any input. This wonderful site has been truly priceless. So far there has been no lung, heart or kidney involvement and we all will continue to hope that our beautiful sister will be okay. She means the world to so many of us. Thank you for your time. Pokey
  8. TJ903, You may also find this helpful. On page 3 of the sclero forums there is a person by the name of "scragporter" whose wife underwent a stem cell which was 100% covered. Anyway if you read on page 3 the one called "undergoing stem cell transplant" the info he provides is invaluable. The whole thing itself is 3 pages long and all the "what to do's" is on his 3rd page, near the end. Hope this helps. His name as I remember was Craig and his wife is Sharon. Best of luck to you. I will keep you in my thoughts. My husband remembers a site he was on also that gave a lot of good stuff you need to know before approaching the insurance company. We will try and find it and let you know if we have any luck. Best wishes to you, Pokey
  9. Barefut, Here is the secret to a PERFECT peeling hard boiled egg that my husband discovered after experimenting. You will absolutely love it. The shell actually peels so easy that at times it comes off as one. Here goes. Place water in your kettle first and get it to boiling. Then once boiling place the eggs into the water and continue to boil for 5 minutes only. Then turn heat off, cover, and let be for 11 minutes. Then immediately run them under cold running water. You will not be disappointed. You will want to hard boil eggs all the time. Enjoy. Hope this helps all who reads this. Pokey
  10. Hello kellyA, I am sorry I don't have an answer for you but I do have some questions. First of all, does your friend have any of the symptoms? Next, I am not sure what the number 254 mean. My sister was diagnosed in early December so I am new to all of this. She is in her early 50's. I am 38 and have a little concern that I, too, could someday have scleroderma. I have no symptoms at this point but naturally it is on my mind. I wonder if you can have antibodies without having any symptoms. Good luck to both you and your friend as well. It is known as a dirty word in our family. Take care, Pokey
  11. Hello Sharon and Craig, I am brand new to all of this. My sister was diagnosed in the beginning of December with the diffuse type. I just want to say that you have given us hope. Hopefully, everything is still going okay and would just like to know how both of you are doing. Will be keeping you both in my thoughts. Len :)
  12. Hello, my thoughts will be with you. Try and stay positive. Keep your chin up. Len (ellen) :)
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