nickisboi25

Members
  • Content count

    26
  • Joined

  • Last visited

About nickisboi25

  • Rank
    Bronze Member
  1. Hi all! Thank you for your replies. The day is almost here, flying out on Wednesday! I emailed my doctor who happens to have a couple of other patients who have various forms of Scleroderma (what are the chances) and as a result, knows some people at a scleroderma charity. I spoke with them also and this is the advice they both gave me; Apply factor 50 SPF regularly and it should be ok. There is a chance that the existing Morphea will darken. Hopefully as my tan fades after, the Morphea will fade back also. If it returns to the light brownish color it is now, that would be good. Thank you all again for taking the time out to reply to my post. I'll put an update on here some time after I get back to share my experience with sun exposure and Morphea. Hopefully it'll help someone else who might have similar questions. Take care, speak with you all soon :)
  2. Hi all. Haven't posted on here in a long time, hope you are all keeping well. As mentioned in my previous posts I have morphea and the last time I saw a dermatologist about it (maybe a year or so ago), I was told it was in the "burnout" stage. It hasn't really progressed since. Maybe it has just a little or maybe my mind is playing tricks on me because I'm so critical over it. It still doesn't give me pain or complications and I know, especially after reading some of the stories on here, that's ultimately the most important thing. So as of this moment in time it's still purely a cosmetic issue. I'm due to go on holiday in early February to Egypt for 10 nights. It's not going to be exceptionally hot at that time of year, but It's still sun exposure. I'm not particularly looking forward to it, in fact I don't actually want to go. The main reason I'm going is to force myself to go to the beach and hopefully build my confidence up a bit. I just don't know if sun exposure is even something I should be contemplating as someone who has morphea. I can't find any conclusive answers as to if it's bad or at the least non relevant for my condition. I honestly don't want it to get any worse and I'm worried the sun might not be a good idea. As much as I'm not wanting to go to the beach and expose a part of me I'm so uncomfortable with, I know I have to do it for the greater good. I'm so sick of being the person whose held back from living their life to the fullest because of a horrible condition that I'm unfortunate enough to have. Do any of you have any personal experience with sun exposure or any useful information that may help me? Many thanks for taking the time to read this and I welcome all replies
  3. Hi Barefut and Happy New Year! The advice on here is amazing, hopefully I can contribute with my own experiences. Last year was incredibly hard. I, like you, found myself very depressed and spent a good part of 2012 in counselling. As hard as it was (remember guys don't talk about their feelings and all that nonsense) it was the best thing I've ever done. Congratulations on seeing someone. :) As I'm sure you know, it's really an ongoing battle. Even now I have really bad days. Sometimes the smallest things help. Do something that means something to you, no matter how stupid, small or insignificant it may seem. Regarding hypnosis, I've never tried it but have you tried mindfulness techniques? I had CBT (Cognitive Behavioral Therapy) and the aim is to make you your own therapist so to speak. If you haven't tried mindfulness ask your counselor about it next time. It can help you to zone out and focus more in depth on a particular subject. All the best, we're all in this together!
  4. Thank you Joelf and Amanda ;) Amanda, as for monitoring the Morphea, I'll be taking pictures of myself every month to see what progress I'm making at the gym. So I guess I'll have no choice but to see the Morphea too and if it changes or grows. I know that I can see my hard work at the gym in those pictures and not just the marks on my skin;ie my positives aren't clouded by my big negative.
  5. I just wanted to take some time out to say a huge thank you to everyone on these forums. Before I found here, I felt like the only guy in the world going through my problems. You honestly don't understand how much it's helped just having people there that I can talk to and who actually understand what I'm going through. I don't feel so alone anymore. It's been a very difficult year with my personal problems and I've still got a really long way to go. In all honesty I still hate my morphea marks when I see them in the mirror and still long to be just like every other "normal" guy. I'm convinced they're getting worse but I actually don't know if I can trust what I see in my reflection anymore. I do honestly feel bad being so superficial when there are so many people on this forum who have to deal with more than me. But if I can't be honest on here, then where can I. I'd like to wish everyone a beautiful holiday season and if I don't post on here for a bit, a happy new year. I still haven't lost sight of my goals and one day I'll inspire someone the way so many of you have inspired me.
  6. Morphea patches on the right side of my abdomen.
  7. Hi Shelley, Thank you for the really thoughtful reply. Endorphin's! Hearing that word a lot from my friends. I'm sure once I get going I'm gonna love it...it's just getting going. I'd like to not use the makeup for the gym at all but maybe I'm just being too hard on myself and thinking I'm Superman. We'll see how I feel but like you said, the choice is all mine. Sometimes I forget that. It's so easy to feel like this disease takes all your choices away from you by being essentially, uncontrollable in itself, but you've hit on a very important point that some choices are still mine...and forever will be :) Forgot to add, I've posted a picture of my Morphea in the 'Skin Involvement' album ;)
  8. Hi all! Thank you for your replies. The gym induction went really well, seems like a nice place. That being said I got ready to go for a session on Wednesday then found myself having a mild panic attack at the thought of exposing my Morphea and the potential judgement that comes with something as normal as a guy taking his top off to get changed. My friend made an interesting comment, "there's no courage in the absence of fear". I'm gonna be courageous and get in that gym in the new year if I have to cry my eyes out and shake so bad I can't keep still! Regardless of anything my dreams are going to come true! I'd also like to extend the welcome to Achilles. My consultation for the makeup was arranged through my doctor. I live in the UK (London to be exact) so I don't know if that's any help to you based on where you live. I can send you a more detailed private message if you like with brand names and more information. Quite a lot of info in this thread in previous posts but still happy to help more if you wish.
  9. Hi RaganM, Welcome to the forums, trust me you'll find amazing support and even more amazing people. This is the first time I've commented on someone else's post but I hope I can help. I'm a 25 year old male with Morphea. I started developing darker patches on the right side of my abdomen when I was around your son's age. To this day I've been incredibly fortunate that they haven't really developed into anything more and have never given me pain. Now they just look like patches of darker skin that have a slightly waxy texture to them and are slightly indented. Everyone is different and I'm sure the uncertainty and rarity of this disease are some of your main concerns. They certainly are for me. I urge you to take advantage of any specialist treatment that is on offer to your son. I have an absolutely amazing doctor but a specialist Scleroderma facility is something I don't have. Also if you have any questions...ask, ask, ask! There's no such thing as a stupid question. Finally, as Miocean mentioned, try your hardest to make your son feel as normal as possible. I can relate to this SOOOOOO much! I'm not saying this to scare you but to be honest. Chances are your son will feel different and possibly unhappy at some point. Being a teenager is hard enough without Morphea. We live in a world where an unhealthy emphasis is placed on the superficial. I'm 12 years older than your son but I'm still in that age group the media loves to target with it's delusional ideals of beauty. I'm telling you now, don't think young guys don't feel pressure to "measure up". I really hope I could help. I've been through (and still going through) so many psychological factors because of my Morphea and I don't want that for your son. Keep us updated, all the best.
  10. Hi all, Thank you for your replies ;) The assessment went really well and I'm starting some work with them in January. New year, new start! Joelf, thank you for the links. I will definitely check them out. Miocean, I love that feeling of "this is who I am". That's definitely what I'm working towards. Shelley, I couldn't agree more. The best accessory is indeed a smile. Shame I'm so self conscious of my teeth, but that's another story! Some dental work will be my birthday present to myself next year :) I've also been fortunate enough to be given a place on a heavily subsidized exercise scheme with free personal training sessions. Going for my induction at the gym tomorrow. Getting changed and showing my Morphea to the world...another challenge I'm determined to rise to. Forget fear, it's my time now!
  11. Hi all, Sorry for the late reply. Been going through a rough patch recently but I'm back ;) Shelley trust me, that guy sat on the floor surrounded by books in the 'Body and Mind' section of the library...that's me! Might just go do that again soon, it's been a while. Montreal, I loved your story. That's the definition of taking ownership. That's one of my long term goals, to own my Morphea. To just be like, okay this is my thing, how do I own it and not let it own or define me. Thanks for sharing. Counselling assessment is tomorrow! Really excited. Like everything in life that's worth anything, it's uncomfortable to start but once I get going I know I'm going to love it. Just a totally random question I'm gonna throw out here. If Morphea is down to over production of collagen, does that mean I have more collagen than the average person or just on my Morphea patches?
  12. Hi all! Those of you following my posts will be aware I'm in counselling for some personal issues but that's coming to an end in early December. I recently went for a camouflage makeup consultation and while there I found out the same organization offers one to one counselling to. Got my follow up phone-call today and my assessment is on November 27th. As a self confessed therapy junkie this is really exciting! Talking to a stranger about your problems can be daunting but it's done me the world of good. These sessions are more closely targeted to how my Morphea impacts my life. I think counselling is such a valuable avenue that should be explored by many. As a lot of you know Scleroderma can be psychologically challenging as well as physically. So far I've been extremely fortunate with the physical side of things but believe me I've had my fair share of emotional upset. I might not have the years, life experience or Scleroderma experience for that matter as most of you but I know what it's like to feel like I've been beaten down by this disease. If this is my way of helping someone else I'll take it. Any counselling queries or questions about how it works (don't believe the movies, there's no white couch) please just ask.
  13. I didn't use it on my face but seeing as people are always advised to take makeup off before they go to sleep, you all might have a point. The skin on our faces is the most sensitive, most probably because it's constantly exposed to the elements. As to where to get hold of it, I only know that information for the UK (specifically London) sorry. I believe Shelley even posted a link to this site's camouflage makeup information on this thread, a couple posts back. Hope this helped a bit; sorry I couldn't do more. One last bit of advice is when you get to experience the makeup, do it with an open mind. Based on my personal experience it's really good but not perfect. I definitely think it's a good choice you're making to explore the makeup option and I hope you get to try it out soon :) any other questions, just ask.
  14. Hi Shelley, Its classed as camouflage makeup but made by a company that makes all types of "professional" makeup, so basically as you said the kind of makeup used for stage/films. That could be the reason it stays on so well if they've essentially used the same methods as their mainline professional makeup. I obtained mine through a doctor's referral to an organization that does, amongst other things, camouflage makeup consultations (I don't know if I'm allowed to mention the organization's name?). I'm more than happy to provide the names of the brand used to anyone who sends me a PM.
  15. Hi All! Thank you Joelf for the kind words, onwards and upwards indeed! Amanda I completely agree with you that progress is never a straight line and there will no doubt be bumps in the road and steps back. As long as I ultimately progress forward, I'm more than happy to take the bad with the good. Shelley distraction is a really good way of handling the things we aren't so keen on. My friends always tell me confidence and the way I view my Morphea is ultimately what will determine how other people view it. Another age old trick, "If I don't mind, they won't either". While this isn't always true, I'm starting to believe what my friends have been telling me for ages. The way I carry myself and the respect I give myself are fundamental parts of how I can live with my Morphea. I've taken your advice to hand and I'm indulging myself with patience. Patience to learn to love myself for who I am and patience to claim back the happiness, confidence and peace I deserve. The makeup I used was very thick in texture and can stay on for up to 4 days. The setting powder really worked well and no residue was left on my clothes. Its basically a case of finding your color match (you can mix colors to achieve a good match), letting it heat up on the back of your hand and then applying it to the area. A little goes a long way and subtle blending with your finger helps the result. As Shelley mentioned, its a case of layering it until your happy with it. The setting powder only takes a few minutes to dry and you're done! Bet you've never met a boy who knows so much about makeup lol I'd definitely recommend finding your local camouflage makeup service and seeing whats on offer. I'm still in two minds about how I feel "covering up" but it's always productive to explore all the options available to us. Hope this helped, any questions please just ask ;)