What I Would Tell My 23 Year-Old Self, Newly Diagnosed with Sclerodema, Part 2

Talk to someone.  I’m not saying sign up for complicated psycho-analysis.  Just talk to someone.


You have a lot of things going on, it doesn’t matter what stage of life; something will always be happening.  People would tell me, “Oh and you’re so young to have scleroderma.”  Look, even at 43, I have a lot going on, and it would still be a shock to my life.  Now is no different from 23 for me.  Sure, I was in college, but the busy I have now, is just as busy, without all the partying.  And without all of this partying, one would think I have a lot more time, but no.  Now, I make time for something called resting.  Resting is nice and all, but it’s not fun for me.  So, I watch TV, I write, I go out and have body parts waxed.  I need to have activity.  The worst part is, the activity I would like to do, isn’t always possible.


I need to take consider weather conditions, how my shoes fit and I hpw I feel about not wearing fun shoes.  Okay, shoes is a very shallow example, but this is a blog and some things are too personal for me to share, so I’m going to use how I feel about shoes as an example, and you’re all going to have to live with it.

I would really, really like to be able to wear a sundress with cute heels.  Okay, I would really like to wear heals with anything, but if I’m going to wear a dress, I usually wear boots because I can get away with wearing flat boots and not look like I’m wearing orthopedic shoes my doctor prescribed.  There is only one problem with that:  I cant wear boots in the summer.    Sometimes, I will shop for cute shoes, but because of the changes scleroderma has done to my body, I can’t just throw on a cute pair of flat sandals, because they need to have padding- not just thick soles, they need to have effective

My sister & me the night I passed my EMT 1-A certification in 1994. We were not drunk in this picture.  Not at all. 

cushioning and support.  No one got the memo in cute shoes, that they should have some orthotic advantages.  See the similarity between bathing suit shopping and this?  Good.


So why can’t I just find some comfortable sandals, and get on with my day?  Because comfortable sandals that “look” like comfortable sandals, make me feel like I am letting scleroderma win.  So, I’ll wear jeans instead, and wear some converse sneakers.  And I have just decided to wear converse sneakers with my sundresses this summer, which is not all that cusion-ey, but I can fit my orthotic inserts in them and no one can see them, I can wear socks so my feet won’t stink and I get to be comfortable.


My point?  Eventually, we all find a way to adapt, but sometimes, I need a little guidance from someone who is not trying to make me fee better, but providing objectivity.  Someone who’s going to ask the questions like: Is this really that important?  Aren’t you over-reactiong, and not going to tell me to get more rest.  Family usually doesn’t do this.  Not because they’re evil, but because they want to help, and I usually don’t listen to them.  I would tell my 23 year-old self to get some counseling.  Scleroderma involves a physical battle as well as a a psychological battle that can effect health.  Find an outlet.  Get to know a counselor or someone who will listen when things get crazy.  you will be glad you did.  Because you are not crazy, you are just coping.