MDJunction - People Helping People
 

Why wear a ribbon?

 
"For my wonderful father, who battles Parkinson's with patience and good humour d..." (desdemonad)

MDJunction to me

cinderella"MDJunction to me is a life saver... when i first was diagnosed with Scheuermann's Disease i wrote a message to a page i found on google, hoping that they could help me.... you'd never know it but that weird feeling (you know that one where it feels like someone actually cares) came over me when i opened my email next day to find that someone on the other side of the world (at the American Medical Library)had read my message while i was sleeping, and there low and behold was the address to MDJunction.... well it is everything to me, i live it breathe it and love it!!!!! I have found many people who are struggling with similar issues banding together to help each other. It is the best place in the world, and i couldn't think of another place to go to meet so many lovely people....

thanks MDJunction
" (cinderella)

more testimonials
Self Esteem & Positive Thinking Support Group
A community of patients, family members and friends dedicated to dealing with Positive Thinking, together.
Join This Group
Group Home   Forums   Articles   Members (1065)   Diaries   Videos   Leaders   Guidelines
Self Esteem Group RSS Feed
09/14/2010 10:56 AM
amtay311
amtay311
 
Posts: 1
Member

My name's Amanda and I've been diagnosed with such strange things that I couldn't find support groups focused on them on this site. I was diagnosed with madelung's deformity when I was 13 years old. Madelung's is (as defined by wikipedia):

"a deformity of the wrist which is produced by a growth disturbance in the inferior volar part of the epiphysial growth plate in the distal radius that results in the radius growing curved in the volar direction producing volar translation of the hand and wrist".

Basically my wrists are deformed and have a limited range of motion. I still play guitar, piano and paint, but my wrists are weak, tire easily, and sometimes suffer random severe pain. It doesn't effect my life too badly, but I often cover my wrists in sleeves due to embarrassment of my deformity.

I also have dermatillomania, which is a disorder in which I compulsively pick at every pore on my skin. It's really frustrating and hard to deal with. I'm covered from head to toe in scars and have even given myself staff infections. It's closely related to OCD. Picking my skin is like satisfying an uncomfortable itch and once i start, I can't help myself. It's weird and disgusting I know.

I suffered silently through high school, hiding my issues from everyone (including my closest friends) because I was insanely embarrassed and didn't want everyone to think I was gross or crazy. I'm in my second year of college now and less ashamed, but still could use encouragement and support. I think I'm attractive when I put on make-up, do my hair and dress well, but sometimes I look at myself and feel like a monster. I have to cake on makeup and cover my body to hide what I've done to my skin and hide my wrists in sleeves and under bracelets. Some days are better than others. I'm generally a happy person and don't consider myself depressed. My disorders are just so cosmetically unappealing that it's hard for me to feel pretty. And it's hard not having anyone to relate to with this. I feel really alone sometimes

Reply

09/16/2010 03:07 AM  Top
Clarita
Clarita
 
Posts: 10767
Group Leader

Amanda, A warm welcome here to this dynamic caring groupSmile! Pleased you have joined!

Even if there is not another individual here with your conditions, you are not alone as we are all challenged with a condition or more than one conidtion here which makes life a tough battle- we are wounded warriors, yet together we are stronger as we battle side by side.We are all on a quest too- a quest for greater self esteem as well as a quest for more positive thinking- we are all at different stages on this quest /journey yet we are all here to assist one another all the same. Together we are all stronger.

My challenges/conditions are fibromyalgia, a scoliosis( slight curvature of the upper spine) that causes much back aches as well as trapped nerves, poor circulation and migraines. Mobility is very limited too, yet, my imagination is not or is my sense of humour!

You will receive much support here- can guarantee you of this as there are some amazing individuals in this group especially our very own wonder woman GL April, Natalia/Natty, Jeni, Faith, Erin/Irish Angel, Rachele, Spencer, Shelley- to name just a few!

Fantastic that you are in your second year of college. Are there any counselors at college so you can get some support?

Check out the articles here.

Warmest wishes from Devon in SW England UK to You.

Take most excellent care of You.(i) Angels look after You, too(i)!

Giant gentle hugs, love bat girl ClaritaSmileSilly birds welcome


09/20/2010 03:40 PM  Top
jenigood1
jenigood1
 
Posts: 3313
Senior Member

Hi, Amanda, welcome!

Jeni

Lamictal
Abilify
Cymbalta
Trazodone
Vyvanse

"Remember - when you fall on your face, you're still moving forward!"
My advice is free, completely anecdotal, and comes from my own experience. Always talk to your doctor before you change anything.
Reply

Share this discussion with your friends:
Members who viewed this page also read:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved