epasen

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About epasen

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  1. Hi you all, I've got to say that I actually have three tattoos today, and the day after tomorrow I will have five. I've taken them all when I haven't been on any medication and my sclero is pretty much stabilized: Slow progressing going on all the time. The first one, really small wasn't too easy to heal but it took only like a week. The second one that covers my right side from under arm to the hip healed very quickly and well, like the third one too. The second one actually tells about scleroderma. I love them and I've asked few doctors beforehand. They just said that it's my own decision and I could try. They just said that I shouldn't take them on sclero-areas of my body so I have them on sclero-free areas only. Emmi
  2. Hi Sacha, My name is Emmi and I'm not a mother myself, but I was only 6 years old when I was diagnozed with scleroderma. I'm now 20. I know this is a really complex disease for us "adults" to understand and I can assure you that it's even more complex when you've barely learned to read. If you want any advice I can only say that keep it simple and give answers when asked. :) If you have any questions at all this is the place to find people willing to help. So welcome and I hope you're having a great holiday and all the best for the year 2011 to you and to your family! Hugs, Emmi
  3. Hi Kelsie, Welcome to the forums. :) If you need any youth perspective on the matter feel free to hit me with a message or two. I've also had this condition since 1996 and I'm now 20. I can assure you've definitely come to the right place. Take care, Emmi
  4. Congratulations SusieQ! I know how extremely challenging losing weight can be, but you've apparently done a great job! :) Keep up the good work! Warm hugs, Emmi P.S. For fastening up your project, try joining an army. We lived the last month in a forest training and battling basically 24/7 and eating very poorly. I lost 5 kilos during that time! ;)
  5. Hello Vanessa, I, as well, am very sorry to hear about your diagnosis. But I'm also glad to notice that your family and friends are showing such a huge amount of support, that is the most valuable thing in life at this point, I guess. You showed your concern on how your skin would heal after surgery. I know a scleroderma patient with 90% of his skin being affected by sclero. His body sometimes developes ulcers by itself, which might stay open for years. However, whenever he had had a surgery or something outside from his body which has caused a wound to his scleroderma-skin, those wounds always heal properly. That is quite interesting I think as well as a bit weird, but after living with this for 14 years I've noticed that scleroderma is far away from normal anyway. Take care and good luck with your treatments, Emmi
  6. Hi Sheryl, Joelf, Sandy B and Margaret, So good to hear from you all! Thank you for you compliments, it's been quite an amazing year and I just hope that my health stays OK over this winter that's been promised to be the coldest in a century or something. I was actually quite amazed that after spending literally the whole November in a forest in a tent I didn't get my fingers amputated due Raynaud's. Thanks to Adalat I survived even though it was tough every now and then. Good thing that I won't have to go to another training camp for two months now I guess. Margaret, good to hear that Gareth is doing fine. :) What is he up to these days? And yeah, my Mediterranean trip was in 2008 so that was couple of years ago already! Time flies by so fast. Warm hugs, Emmi
  7. Hi all, I've been missing you guys! It feels like I've been away from this awesome forum for so long. But tonight I finally just sat down, took my sis' laptop and logged in. I'm not sure if you remember me and there are so many new people in here. But anyway, I'm Emmi, 20-year-old linear scleroderma patient from Finland. I've lived with this for 14 years now I guess and it's been a bumpy ride. A year ago I was still on methotrexate, but after talking to my dermatologist we both agreed that I was just medicating my medication. I dropped all pills that I could, started training more seriously again, and I've never felt better. Last year was really rough emotionally and health-wise as well. This year has been a lot different; It's been rough physically. Since July 2010 I've been serving my country in The Finnish Defence Forces. I'll be serving 362 days and I'll be a Corporal before Holiday's. Most likely I'll be a med Sergeant before getting back home. My boyfriend is also serving a year but he'll be a navy officer. We don't get to see each other a lot these days, but he's been extremely supportive over the phone, always asking me how am I doing and telling me how proud he is. Same as my family. That's pretty much it these days. I can only tell you that a year ago I couldn't have even imagined that I'll be this far now. It takes a lot of effort to get through these hard days and training in the army but still after every day it feels like it's all worth of it. And I'm still smiling as often as I used to. Just wanted to let you know how I'm doing and tell you that I really miss you guys! Now please let me know what's up with Your Lives? I hope everyone has been warm and healthy and will remain so. Take care, warm hugs, Emmi
  8. Hi Viviana, My name is Emmi. I'm 20-year-old girl from Finland with linear scleroderma. I've lived with this condition since I was 6 years and along the way I've got several other diagnoses as well such as Raynaud's phenomenon and reflux. For the first ten years my scleroderma was just great if you can say that about any illness. It progressed at first, and then went to remission. But then again when I was like 16 it started to spread again. At the same time I started taking birth control pills and it made things even worse. Someone once told me that estrogen can activate scleroderma and after dropping them it took only few months and things were better again. I don't know if this has any scientific basis, but that was my experience. It is scary to think that scleroderma might progress again and I dread that every day. But I'm still living my life to the fullest and try to make my dreams come true. People have told me so many times that because of this I can't do this and that but so far I've proved them all wrong. If you want to contact me for more youth perspective feel free to do so. :) Take care, Emmi
  9. Hi there Pawndy, Glad you made it here! I'm sure you'll find these wonderful ladies are great company. I'm Emmi, 20-year-old girl from Finland with linearic scleroderma since -96. I got here in the fall 2007 or 8 I think and I can assure you I've found all the help and answers I've needed from here. Take care, Emmi
  10. Hi there, Last summer when I participated EULAR Annual Congress of Rheumatology I learned one thing: Scleroderma itself has never affected anyone's brain. So probably this forgetting of things is something much easier to handle, and I know you wise ladies are not losing your minds. :) Hugs, Emmi
  11. Hi Erika, thank you for your comment. I just wish that everyone can cope with sclero the best way they can and hopefully will accept it after some time. This was just my story, just one case among many others, but I can assure you letting scleroderma be part of you will make your life a lot easier. All the best wishes, Emmi
  12. My dear ladies, I'm soon to be 20-year-old girl who has had scleroderma for about 14 years now, also during my teen years which are supposed to be worst time to suffer for cosmetic flaws. And here's my story: About 40% of the left side of my body is totally covered with scleroderma, and the pigmentation changes are very, very visible. It's like I'm having a really bad bruise or dark, dark tanning on my tummy, and all of my left leg is shiny and browner compared to the right one. Also on top of that the left leg is visibly smaller than the right one hence the lack of fat-tissue. And yes, people do stare at me on the beach when I'm wearing just bikinis. But it does not really bother anyone.. So why should it bother me? I'm considered as one of the prettiest girl in our town (among 37000 habitants) despite the scleroderma, and I think that in the end it is the self-esteem that really matters. I do wear bikinis whenever I have a chance; When I go clubbing I don't wear long pants very often. Basically, whenever I have the chance to wear small clothes, I take the opportunity. Too bad it's under +15°C in Finland most of the year. I don't really know how I got over this: It's a huge thing for a teen girl to look so different compared to the others, but I guess it was just me being so open about it. My friends are OK with it, and if people wonder what's that, I just simply explain this all to them briefly. This is probably the only thing I feel totally confident about in me - scleroderma. This topic kind of made me feel sad: Why should we cover up the changes? I might not understand how you guys feel about the changes that might happen more rapidly than in my case, but the conclusion is the same in any case. Some of YOU GUYS once said in here that "We are not ugly, scleroderma is." This has really made an impact on me: I don't think I'm ugly, I don't even think my scleroderma is. I'm just me, and if I'm confident about my appearance and my scleroderma, my shiny personality and smile will radiate from me shiner than scleroderma ever will. Love, Emmi
  13. Hi Stacey, It's good to hear that you have a positive attitude towards this, it's really helpful when you're dealing with scleroderma. I hope everything is going to turn better with you. I did get H1N1 vaccination since I'm on methotrexate which means I have to get it. It was like a month ago. I was pretty sick couple of days after the vaccination, a bit of temperature and a very sore arm but it passed pretty quickly. Take care, Emmi
  14. Hi dear, It is very depressing being 19 and sometimes feeling like you want to do something, but you just can't.. You don't have the energy, you're too much in pain or some symptom like this is on the way. The hardest part is probably the fact that I look very healthy, so it's kind of hard to explain to your friends why I don't do things like them, or why I don't do some things some days at all. This can happen on mornings, afternoons, evenings.. Especially in the evenings. Right now it's almost 6 pm here, and after a working day I feel like going out to jog or walk around, but I don't know if my ankles and knees will like that. If I could just get myself motivated enough to do that, I know I'd feel mentally much better though. So yeah, this feeling is very familiar. Take care, Emmi
  15. Hello Raecheal, I'm a girl who was diagnosed when I was about your daughter's age. That was more than 13 years ago, and I've been being able to continue my life almost normally. On the matter of health, there have been few ups and downs along the way, but it has grown me much stronger and more mature. You and your baby are in my thoughts, I'm wishing you all the best and hoping that everything will be fine in the future. If you have any questions or fear, this is the right address. Warm hugs, Emmi