January 30, 2018

It’s cold and sort of dreary on this quiet January morning. This is the time of year I usually don’t like at all; it’s boring and seems to last forever! And I’m now at the point where I want the cold to just go away! But I have to remind myself that there is a purpose for EVERY season and God has made everything beautiful in it’s time. Even me...

Over the past couple of years, my physical appearance has undergone so many changes. The most obvious one and the one I get the most questions about is my weight. I actually find it a little shocking to see myself in the mirror after showering! I have to turn away quickly but not before I’ve compared myself to one of those starving, emaciated people you see on television from poor countries! No, it’s not quite THAT bad, but bad enough. I’ve also got the “Scleraderma face”. I started to say I won’t go into detail about that, but If you are reading this, then you probably care and may WANT to know what that means. 

The Scleraderma face has very tight skin. Our eyes are smaller... not opening as much as they used to and they are also very, very dry. Skin discolorations (dark patches) are common and I have several. My skin is also dry and itchy. The tightening of my facial skin has caused my mouth and lips to shrink. My mouth opening is very small. I have issues eating... and I must be very careful about what size bites to take. (I spill a lot!). I have to really smash any sandwiches or burgers I eat! I cut up most of my food to make it easier to get into my mouth. I have dental problems but, thanks to a dear friend who is a pharmacist, I’m now taking Lysine twice a day and it has dramatically improved the issues with the mouth sores I used to get very often. They were SO painful! The tightening has pulled my lips against my teeth and I have indentations from them on the inside of my lip. That is just how tight my skin is! It is VERY uncomfortable at times and my facial skin has even split from time to time. That hurts! 

Sometimes I have to admit to being vain... Too much so, I guess, because I allow the changes in my physical appearance to affect me emotionally. I have lost a lot.. most...of my self esteem and confidence and there are days when I get pretty depressed, especially when I’m also dealing with sickness.

Before you allow yourself to think that I’m over-dramatizing things or whatever, please don’t be judgmental. I’m basically a strong person and most days NOBODY can tell I’m either dealing with a flare up of the sickness OR that I’m having a bout of depression. I am really good at hiding my emotions. Sometimes Ricky can tell when I’m not my best self, but even he doesn’t see what I hide on the inside ALL the time. 

But GOD sees and knows all. I only make it, day by day, hour by hour and minute by minute with Him giving me strength. On the days when I feel overwhelmed by things, that is when I’ve let go of His strong and loving hand. I’ve allowed myself to wallow in my emotions and self pity, and like a child, I have to run to Him to be cleaned up and set back on my feet. He ALWAYS makes me feel special and beautiful and He whispers complete and utter love for me, His daughter... His Princess. 

Psalm 139:14

I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. 

I have appointments with the specialists next week in Lexington and I will update about them when I can. 

Love and blessings to you this day, tomorrow and forever! 

P.S. I know I don’t HAVE to share this because if you are reading this, you care and you wouldn’t think bad of me, but I don’t share the things I do about the disease in order to gain pity. All I really desire is your understanding and especially your prayers. And I started this blog as a means of “therapy” for myself. It truly helps me to “open up” about my feelings, good OR bad. I thank you for taking the time to read it. I thank you for caring.