Changes

March 1, 2019

Describing the battle scars

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I have just reached my 57th birthday. The passing years have really begun to show in my face and I'm struggling to keep my dignity intact. Or maybe it's my "vanity" that has taken a hit.

The foe of the disease has contributed to my rapidly changing looks and my "old ladyish" ways also, I suppose. The signs of most Scleraderma victims are tightening skin all over the body, but it really shows in the face. What DOESN'T show is what it does to the inside of my mouth. Since my facial skin has tightened, my lips are being pulled inwards and my teeth are pressing into the inside of my lips and jaws. This creates soreness, sometimes bleeding. This makes eating a challenge. My tongue is also affected and often feels as if I've just took a drink of scalding hot coffee or something and burnt it. So, yeah, these things aren't conducive to enjoying ANY meal!

The lines around my mouth have deepened drastically and my lips themselves have shrunk. My mouth opening has shrunk SO much! That also makes taking bites a little tricky, so if I'm eating a sandwich or burger, it must be flattened as much as I can get it. I usually try to cut my food into bite-sized pieces... like Momma used to have to do for me when I was a baby!

My eyes have also changed as the skin around them has tightened. I cannot open them as wide and I have trouble with them being very dry.

Patches of skin around my forehead and cheeks have become discolored and dry. I haven't found a cream or makeup yet to help either.

I KNOW the outward signs should not affect me as they sometimes do, but it's kind of depressing to look in the mirror and see so many unflattering changes. I know I'm not young, but in my heart I am! I, like most other women, want to look and especially FEEL pretty. That's just the way we women are!

I'm praying for God to help me find peace and to accept with dignity the marks that the enemy is placing on my body. I've ALWAYS strived to look my very best, no matter if I was going to the dollar store or out to a 4-star restaurant for a fancy meal! Call me "vain", but I want every hair in place, makeup applied with perfection and my clothes clean, stylish and flattering. I STILL want those things, but some days I feel like it's just useless.

And the fact that I am, as everyone tells me, "skin and bones" doesn't help me with my vanity issues. Years ago, I went on a little diet to lose some weight. I had gained a few pounds and just didn't feel good. I have now found out that it is MUCH easier to lose weight than it is to gain weight, at least FOR ME! My goal is 130 lbs. That was always my "comfortable" weight. I now weigh 102.

I know God created my body to house my soul and my soul... the essence of WHO I REALLY AM...is the same. The me that I've been all of my life still lives within.

I just need to realize that looks don't matter because God sees my heart, and so do those that really care. I'm not my looks, or my clothes. And another thing, I REFUSE TO LET SCLERADERMA DEFINE WHO I AM.

Today my sister, Sue, and I leave for a two day stay in Lexington where I will be seeing new and highly rated specialists in the fields of Rheumatology and Gastroenterology. I've seen other specialists before and none have been able to determine what is going on with me and they have not known what to do to help me. I've been shuffled around between so many medical people and hospitals and had so many procedures done to me that it makes my head spin to think about it! Yet, here I am a year into being sick, sicker and sickest and looking and feeling like something the cat drug in after he chased it, chewed on it, threw it around, tortured it, and then decided to try to swallow it, but spit it back out!!

So this trip is very important and has been my glimmer of hope for God to touch man in the form of these doctors who will see me and, Lord, please, grant them the skill and knowledge to know what to do to help me reach the shore and leave this storm behind. Amen