Finally heard of another person having scleroderma. Unfortunately, she's not living due to the disease. It would have been good to meet someone with my disease (because it's so rare) so that I could get some info and insight with dealing with it.
People think that by ignoring it (acting like I'm normal still) or by 'giving me space' about it, that their actually helping me through this. Well...their wrong! I'm not going to talk about it or bring it up because that's just how I am but for my friends and family (not everyone, you know who you are) to disregard this disease like a case of freakin eczema is slightly eff'd up!
This disease is real and there is a GREAT possibility I will DIE sooner than we all think. Now, don't get me wrong, I believe in GOD, in the power of the TONGUE, the LAW of ATTRACTION and hell everything else that involves positive thinking toward a positive outcome. But the reality is this DISEASE is REAL, not a figment of mine nor anyone else's imagination.
So being that it is real and IM the only one that has to deal with this reality DAY to DAY, it gets real HEAVY. VERY HEAVY to be exact.
If you truly know me, you know I'm always planning to do this or planning to do that. Sometimes I never follow through with those plans cause in the back of my mind, I knew whatever it was I was planning for wasn't going anywhere and I'd have another chance to plan for it again.
All that has changed. I'm at the point that I have to live day to day FOR REAL (not for fake or just to say this cliche). I'm no longer living for tomorrow. I have to make the best of each day (even if its just making sure I can catch my favorite show THE COMMUNITY and watch it uninterrupted)! I also resolved that I'm not be a service nor helpful to others when I'm not completely BEING MYSELF. That means speaking my mind (respectfully) being upfront, honest and sincere each and every time I'm interacting with people. Most people think I'm very blunt or whatever word you would choose to use to describe me when were interacting but I'm actually very passive.
So here comes the rudeness (some people have already been getting it-west philly). I Love you all but I love myself MORE and I want to make however long I'm still on this earth, the best years of MY LIFE, not yours.
Can I Live??? (~compliments of Ashy bka Ashley Henderson)
Peace, Love & LIVE LIFE!
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I have read (yes, I cared enough to read about this to be a little more informed) that this disease is sometimes hereditary. Does/has anyone else in your family have this illness? What would be your advice to other women your age who are just now being diagnosed with an autoimmune disease?
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