Scleroderma Information » Scleroderma » apology sent
Question:
I am a grandparent and I enjoy being with my grandchildren. However the younger ones wear me out. since I have lung involvement,I can’t chase after tehm and they make constant demands. It seems they love to make you run around. It is a very enoyable experience and I wouldn’t chang e aminute of it. Love……Gigi
Response:
Hi It is very rare for localized (Morphea/Linear) scleroderma to turn i to the systemic form. You can read more on localized scleroderma at this link. http://SclerodermaSupport.com/med-localized.html — We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://sclerodermagw.org "Together we can beat the odds!" PAUL KRYGIER <kryg…@worldnet.att.net> wrote in message
news:w96L2.1335$L6.130154@WReNphoon3… – Hide quoted text — Show quoted text -> I have been reading your messages and thought you might shed some light on > scleroderma for me. I have just gotten the results of a biopsy – sclerosis > – consistent with morphea. I thought that this was good news – but my > doctor said it could lead to scleroderma. He just said to look to > additional patches. Help – should I be concerned, is there something I can > do now? Any help would be greatly appreciated. > -**** Posted from remarQ, Discussions Start Here(tm) ****- > http://www.remarq.com/ – Host to the the World’s Discussions & Usenet
Response:
Thank you sincerely Cindy for accepting my apology. And yes, we are all very vulnerable putting our personal lives on display either on the net or in real life. This is not an easy obstacle we have been giving, but together, as a family of friends, we can overcome some of the pain, frustration and sometimes the anger and humility this diesease can inflict. If it was not for this support group and my other online families, I truely believe I could have just thrown in the towel and said to hell with it all. When I was pregnant w/Lucas, I started have all the sysmptoms my mom and aunt displayed. At that time however, there was not as much information out there as there is now. My doctors just attributed the changes and symptoms going on to my pregnancy.(When I 1st became pregnant w/Luke my drs. didnt think of pregnancy, get this…they thought I had a brain tumor and shot me up w/radoactive material for a cscan.) I had one person who is now blocked from my e-mail who was extremely misinformed about this autoimmune diesease and related sd as the like of having AIDS. So she decided if AIDS could be transmitted to the unborn so could sd. She knew she had sd when she became pregnant. She felt she had to terminate. Well I was as loving and supportive as I could be, tried to educate her and her boyfriend and family the best I could. I e-mailed a copy of every file I had on Scleroderma and Pregnancy and told her how to get on this ng too. The sad part of it is, her sd is only limited to skin affliction. Unfortunately, after several hours back and forth w/her, i came online to this ng i call Home and read your posting. Again I am so sorry to have blown up and so very thankful you and yours have accepted my apology. Please e-mail me anytime to talk,laugh or vent as I will always be there for yours and others support. Love and Hugs Colleen……….rschi…@gulftel.com – Hide quoted text — Show quoted text -stephen wrote: > Wow. I must say you definitely shocked me. I would give the world to have a > child. My point was my doctor has me on Cyclosporine for the next few years > until a better med is found, because they were fearful how quick the lungs > progressed. Because it is experimental for sd and toxic, they are unsure > what affect it may have on me short or long term. They say not to get > pregnant while on this drug and i am absolutely on birth control because > it’s mandatory right now and because i’ve been on it for a long time > nyway( we had been waiting until the time was right for our lives). My > doctors said depending on how my sd progresses and the drugs, that i should > try to come to terms with the possibility of not having kids naturally. That > was all i meant. They said they can’t guarantee it will be an option, but > the second they say i can try, of course we will want to (if they felt i was > not going to jeopardize my own health/life.) It’s great to hear you about > you guys who say you’ve had children. Thanks colleen for the apology, i’m > feeling very vulnerable putting my personal life on display. Cindy
Response:
I have been reading your messages and thought you might shed some light on scleroderma for me. I have just gotten the results of a biopsy – sclerosis – consistent with morphea. I thought that this was good news – but my doctor said it could lead to scleroderma. He just said to look to additional patches. Help – should I be concerned, is there something I can do now? Any help would be greatly appreciated. -**** Posted from remarQ, Discussions Start Here(tm) ****- http://www.remarq.com/ – Host to the the World’s Discussions & Usenet
Response:
Wow. I must say you definitely shocked me. I would give the world to have a child. My point was my doctor has me on Cyclosporine for the next few years until a better med is found, because they were fearful how quick the lungs progressed. Because it is experimental for sd and toxic, they are unsure what affect it may have on me short or long term. They say not to get pregnant while on this drug and i am absolutely on birth control because it’s mandatory right now and because i’ve been on it for a long time nyway( we had been waiting until the time was right for our lives). My doctors said depending on how my sd progresses and the drugs, that i should try to come to terms with the possibility of not having kids naturally. That was all i meant. They said they can’t guarantee it will be an option, but the second they say i can try, of course we will want to (if they felt i was not going to jeopardize my own health/life.) It’s great to hear you about you guys who say you’ve had children. Thanks colleen for the apology, i’m feeling very vulnerable putting my personal life on display. Cindy – Hide quoted text — Show quoted text –
Response:
Hi Paul, Welcome to our ng family. The best advice I can give you is to go to various sites on the net,(Sherry,Shelly and Amie all have excellent ones with a wealth of information) and educate yourself. Do you have symptoms of Raynauds? We all try to keep warm, qiut smoking, watch our diet and rest when we feel fatigued. We are all told to lower our stress levels which in this day in age it seems like a catch 22, but you can do it. Should you be concerned? If you feel like the answers you have been given leave you w/more questions, be concerned on asking till you get an answer even though you may not like what you hear. When anything happens to our bodies out of the ordinary, yes we should be concerned. Try however, not to live in fear. We fear what we do not understand so again I will reinerate, educate,educate,educate! Please feel free to e-mail me at rschi…@gulftel.com anytime and stay in touch with our ng. We care about you as a person and it is important to have support for no matter what illness or obstacles life may present before you. Love and Hugs Colleen – Hide quoted text — Show quoted text -PAUL KRYGIER wrote: > I have been reading your messages and thought you might shed some light on > scleroderma for me. I have just gotten the results of a biopsy – sclerosis > – consistent with morphea. I thought that this was good news – but my > doctor said it could lead to scleroderma. He just said to look to > additional patches. Help – should I be concerned, is there something I can > do now? Any help would be greatly appreciated. > -**** Posted from remarQ, Discussions Start Here(tm) ****- > http://www.remarq.com/ – Host to the the World’s Discussions & Usenet
Response:
loved the crest definition! I have a daughter, Raena(ray-na), who lives an hour away. For her it is tough because she understands that her mom cant come and see her all the time due to the irritable bowels and fatigue. When she does come home, she does all she can to help me by doing little things like going to the post office or bank or shopping. On the weekends, Richard, my loving fiance who i always talk about try to go out. When we do though, my butt is parked within 2 leaps from the ladies room. My son now lives with his father. When he comes to visit its hard to say no I cant go to a movie with you or the beach with you because I have a permenant case of diarhea or I hurt or I am tired. So I keep all my "nastys" to myself and push, push, push to let them know that I love them so much and enjoy being with them so much I will do and go through anything to ensure their happiness. Financially? DRAINING!!!!! I have learned to do with less, do less and I found out I didnt need half of everything I thought I did. I found out how to recycle items to give them a new purpose, shop more conservatively, make my jams,sauces,pastas with the items I grew including drying herbs, flowers,etc. My daughter is in pre-med on an academic scholarship but it doesnt cover books, dorm fees, living expenses and her schedule is too demanding at this point in time for her to work except during summer break. I dont want her to either. As long is there is a breath left in my body she will have all the financial support I can give so she can study without worry. Being a parent and having sd is not real easy, however, I am looking forward to being a grandparent sometime in the not so distant future( I hope! she has to finish med school 1st).So my question, any grandparents out there with sd and how is it for you? Love and Hugs Colleen – Hide quoted text — Show quoted text -Amie Yaussy wrote: > Thanks for hanging in there despite the misunderstanding, Cindy. This is a > very valid topic – c’mon, SD moms, what words of wisdom can you share with > Cindy and lurkers who may be concerned about pregnancy? And dads and moms, > let’s also not forget about that whole post-pregnancy thing (you know, those > 18 or more years!) – how do you make sure to give your kids enough time > despite illness/fatigue/hospitalization/etc? How about financial issues? > Relationship issues? > stephen wrote in message … > snipped > >I would give the world to have a > >child. My point was my doctor has me on Cyclosporine for the next few years > >until a better med is found, because they were fearful how quick the lungs > >progressed. Because it is experimental for sd and toxic, they are unsure > >what affect it may have on me short or long term. They say not to get > >pregnant while on this drug and i am absolutely on birth control because > >it’s mandatory right now and because i’ve been on it for a long time > >nyway( we had been waiting until the time was right for our lives). My > >doctors said depending on how my sd progresses and the drugs, that i should > >try to come to terms with the possibility of not having kids naturally. > That > >was all i meant. They said they can’t guarantee it will be an option, but > >the second they say i can try, of course we will want to (if they felt i > was > >not going to jeopardize my own health/life.) It’s great to hear you > about > >you guys who say you’ve had children. Thanks colleen for the apology, i’m > >feeling very vulnerable putting my personal life on display. Cindy
Response:
you are right i was totally out of line. i have had a real rough week and i have been dealing w/ a few idiots who think abortion is the solution online lately. not from this ng. cindy it is my sincerist wish that you will as well as all the others accept my humblest apology. i truely am a very nice lady who is extremely understanding and i welcome every one new to our family. i am here to offer support.not critisim we get enough of that. amies right, it was a cross over from other people. and i was so very out of line i cannot say i am sorry enough. please accept my apology and friendship…….colleen
Response:
Thanks for hanging in there despite the misunderstanding, Cindy. This is a very valid topic – c’mon, SD moms, what words of wisdom can you share with Cindy and lurkers who may be concerned about pregnancy? And dads and moms, let’s also not forget about that whole post-pregnancy thing (you know, those 18 or more years!) – how do you make sure to give your kids enough time despite illness/fatigue/hospitalization/etc? How about financial issues? Relationship issues? stephen wrote in message …
snipped – Hide quoted text — Show quoted text ->I would give the world to have a >child. My point was my doctor has me on Cyclosporine for the next few years >until a better med is found, because they were fearful how quick the lungs >progressed. Because it is experimental for sd and toxic, they are unsure >what affect it may have on me short or long term. They say not to get >pregnant while on this drug and i am absolutely on birth control because >it’s mandatory right now and because i’ve been on it for a long time >nyway( we had been waiting until the time was right for our lives). My >doctors said depending on how my sd progresses and the drugs, that i should >try to come to terms with the possibility of not having kids naturally. That >was all i meant. They said they can’t guarantee it will be an option, but >the second they say i can try, of course we will want to (if they felt i was >not going to jeopardize my own health/life.) It’s great to hear you about >you guys who say you’ve had children. Thanks colleen for the apology, i’m >feeling very vulnerable putting my personal life on display. Cindy
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