Need support

Replies

Gia June 8, 2012 at 9:37am

Hi Jessica,
This video has helped me:
http://m.youtube.com/watch?v=__3Hm14whUY

I like to think of myself as a calico kitty amongst a bunch of brown and white cats.
But really...meditation. The book Radical Acceptance by Tara Brock. The Body Positive organization (there was actually another woman with vitiligo at the workshop I attended). It focuses on accepting and loving your body(website may lead you to think it is only about weight, but it's not). Therapy. Asking my friends for help and using specifics like "call me and ask how I am doing with it today. It changes day to day". Doing the treatments and interrupting myself when I start to judge or become afraid.

Initially though...knowing that I am going through the grieving process and identifying the stages as I move through them. Trying to allow myself to grieve rather than judging or suppressing. Feeling my feelings about it add they come up and reminding myself that it's NORMAL. We grieve what or bodies used to look like. We grieve how we used to relate to ourselves and how others used to relate to us. You can learn to love yourself no matter what you look like and know you have innate worth that doesn't change with your appearance.
Asking for help.
Moving my body in a way that feels good to me (walks outdoors, yoga, dancing, etc.). It can reduce anxiety and elevate mood. Research shows that walking IN NATURE for an hour increases mood significantly. It is important to take pleasure in your self care. Don't let it become a "have to" or label it as good if you do and bad if you don't. That doesn't help. The more pleasure you take in your self care, the healthier you will be.

Pay attention to whether you feel depressed, anxious, our both. I had to seek out medication for depression it got so intense. It has "raised the bottom" so when I feel down it doesn't go as low as it did before. I may not need it long term, but it was important for me to seek help when it started interfering with my life (missing work, missing treatments, etc.). Vitiligo is a major stressor and you may be in crisis...and that's normal. Take care of yourself. It gets better. :)
- Gia > Gia June 8, 2012 at 9:52am
  
  Oh, and doing treatment. Mine is UVB light therapy 3 times a week and one month on, one month off cycles of corticosteroid cream. I just started freckling in my white patches.
  
  I also want to acknowledge you for finding this website and asking for help coping. You are taking care of yourself and it looks like you are in good hands :) This website helps a lot as well. Having others who have vitiligo or any disease that affects appearance to talk to REALLY HELPS. Take care and feel free to drop me a line anytime.
  - Gailene Bigart > Gia June 11, 2012 at 11:05am
    
    I'm so glad I also found this website. You are so positive and lately I've had the hardest time with my vitiligo as it has stressed me out. I used to have great skin and loved summer and now I just cringe as summer approaches each yr. I've started juicing and now will trry going vegan. Where do you get the UVB lighting? Any other suggestions with repigmenting? Also I have heard alcohol is not good for it
    - Gia > Gailene Bigart June 11, 2012 at 1:22pm
      
      I get uvb from kaiser. They have been amazing actually. The kaiser plan I have has been a life saver. I can only say what I have been doing is finally starting to work. Who knows if it will stick or continue. I take b12 and folic acid almost every day, eat fairly healthy, and the other supplements have fallen by the way side. I think I get enough vitamin d from the uvb treatments. It's like being in the sun. If I wasn't doing uvb, vitamin d would definitely be a part of my routine. Also, implementing strategies to reduce stress. There is a verifiable correlation between stress and vitiligo. Personally, I think even if you need anxiety meds to reduce stress temporarily until the vitiligo stops spreading...it would be worth it to me....as a treatment for vitiligo if not just for anxiety. Chronic illness is no joke. We all need emotional support and coping strategies. Meditation, exercise, therapy, time with friends, routine are all important. Tracking how I am sleeping, my mood, as well as quantifiable things such as how much work I am doing each day, school work, physical activity, and self care has really helped me to be present and seek help before things get too bad. I sooo understand and my heart goes out to you. We are all in this together.
    - Jessica Edinger > Gailene Bigart June 11, 2012 at 11:21am
      
      I know exactly how you feel. Is yours eaiser to hide in the winter?
      - Gailene Bigart > Jessica Edinger June 11, 2012 at 12:11pm
        
        Yes and in the summer I wear a uv long sleeve shirt and water gloves when I go to the lake or something. Iim going to give vegan a try and I just started juicing so hopefully I will start seeing results. It's a bummer but I keep thinking and telling myself that it could be worse and we are still healthy! ;)
  - Jessica Edinger > Gia June 8, 2012 at 12:26pm
    
    Thank you so much for all the information, I know that there will be better days ahead its just hard to wrap my brain around it. Congrats on the freckling thats sounds very promising :) Gia your kind words have helped me more thatn you know thanks again
  - Gareth dixon > Gia June 8, 2012 at 10:57am
    
    Yoga really seems to have keep me calm whenever i am down too, and lots of exercise. Keep on this board as well people are always here too help , and if you feel down in the dumps write down your thoughts that will help ease your anxieties im sure weve all thought what u have at some point !
    - Jessica Edinger > Gareth dixon June 8, 2012 at 12:28pm
      
      Thanks for the reply Gareth, I will remember to go for a jog when i start feeling afraid again. I will be on this website often so keep in thouch