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barefut impressions


I Want My Lips Back

Posted by barefut , 20 November 2007 · 1,027 views

In looking in the mirror today a couple of things came to mind. One, it's going to be a bad hair day again so just forget about it. Two, I want my lips back.

I had small lips to begin with and when my face started tightening, my upper lip disappeared rather quickly and quietly. It doesn't help to smile because that only makes it fold under as if I have tucked it up into my gum and am trying to show off my teeth. I look like a donkey.

Then I started wondering what men with scleroderma think when they look in the mirror. Do they even pay as much attention to their face as we women do? Do they even get the T-spots and the hairloss and the face tightening and the small mouth the same as us women? I imagine they do but I have never heard one of them come on the message board and say they thought they looked like a donkey when they smiled.

I don't know what point I am trying to make, if any. I was just missing my upper lip and wondering if men ever cared about such things.


A Slice Of Sclerolife

Posted by barefut , 16 November 2007 · 1,141 views

I sat in my suburban in the grocery store parking lot, once again not sure if my bowels were going to let me go in and not sure if I wanted to anyway with it blowing rain horizontally. My fingers were already white and on their way to blue, even in my fleece gloves. I turned on the motor and warmed them up with the heater. I wondered how much extra gas I had gone through doing this all the time.

How much did I need the things on my list right now anyway? Could I just come back tomorrow? I was always coming back tomorrow. Talk about going through the gas. I wished that I had a nice, used, economical, little car. I love "Betsy Big Rig" for camping, hauling my kids (and half the neighborhood kids) and all their sports accessories to the BMX track, the park, the pool, the beach, the Rec. Center, the library....but she sure is expensive these days!

Back to my grocery dilemma. My prescription can wait. Coffee filters - totally out, but no biggie; even decaf is starting to mess with me. Bread - gotta have it. Fruit - totally out, need it. Something easy for dinner; there wasn't much in the house to conjure up a dinner with and it would have to be a quick and easy one tonight because the kids' school open houses started at 6pm.

The sharp pains in my gut persisted and so did the wind and rain but I decided to go in. I'd be quick. I hoped I didn't run into anyone I knew in this small town and end up having to engage in endless polite conversation whilst my gut rumbled impatiently.

I moved Betsy Big Rig to an open parking space closest to the door that was designated, "For your convenience, 15 minute parking for coffee customers" (Give me a break!). Then it really started to pour down rain. Was the universe trying to tell me something? If it was, I didn't listen. I pulled on my gloves, threw up my hood and ran into the store.

I was on a mission. My assignment: grocery shopping. My tactics: map out target supplies, commandeer shopping cart, remain covert, get in and out of there fast.

Inside, people must have thought I was in a timed shopping contest by the way I was racing through the store. I saw people see me coming and get out of my way halfway down the aisle (so much for covert). I might as well have had, "Get out of my way!" tattooed on my forehead (and a "Racing my bowels" sign taped to my back).

In the 'end' :rolleyes: everything turned out okay. I got what I needed, didn't see anyone I knew and got home without incident or accident. Mission accomplished.

Now, to get through 2 school open houses...


It's Only Hair But I Wish I Had Some....vanity?

Posted by barefut , 14 November 2007 · 1,010 views

Okay, yes. I do have some. But the headlight above my forehead that I call my scalp is starting to look like it has its high beam on. In the grand scheme of things I pretend not to care. I mean, it's only hair. But when all other body parts are behaving and not giving me grief, I tend to turn my attention to one of the more frivolous aspects of my appearance, my hair. It's bad enough to be going gray and having to deal with these wiry critters with a mind of their own, but to be going bald too is really adding insult to injury.

I've never really been vain about the way I look, just insecure. I don't know which is worse. Insecurities are hard to overcome. Vanity is an unhealthy preoccupation with one's own appearance. Nobody wants to be considered vain, either in our own minds or especially to others. Vanity suggests self-centeredness; self-centeredness suggests conceit; conceit suggests snobbery and snobbery suggests, well all kinds of unpleasantries. No matter how you look at it, vanity isn't pretty.

Since the subject of vanity has come up more than once here in the ISN forums, whether it be regarding telangiectasia (T-spots) or hairloss, I thought I'd give my impressions on the subject with the hope of maybe putting people's minds at ease. Some worry that fretting about the changes scleroderma makes to our appearance is somehow shameful or disrespectful to those with more serious symptoms of scleroderma.

It is not. It is simply a normal response to an abnormal body. Vanity does not apply here. Nor is it necessary to feel shameful or disrespectful for caring about your appearance. Even those of us with more serious symptoms flaring, care about our appearance. It just isn't a priority when we're feeling bad and/or need to concentrate on getting well. So, if you are feeling well and have the time and inclination to spend on your appearance then that is a good thing! And keep up the good work!

It's okay to share your insecurities about the changes sclero has made to your body and it is also okay, necessary even, to grieve over the loss of our "prettier" days. Scleroderma involves a lot of grieveing. You have to let yourself feel it to get through it and be able to deal with it. But that's a whole 'nother blog entry.

My American Heritage Dictionary says, "vain - showing undue preoccupation with or pride in one's own appearance or accomplishments; conceited. Now we have to look at the word "undue - exceeding what is appropriate or normal; excessive."

Scleroderma itself is not "normal". Therefore an appropriate, normal response to the changes scleroderma makes to our physical appearance is obviously concern over what those changes entail. There is nothing obsessive or excessive about concern.

I think we can put our anxieties over being vain to rest. We are having to adjust to what scleroderma is doing to our bodies both internally and externally, and that is anxiety provoking enough without worrying if we are being vain, shameful or disrespectful.

And by the way, relax -- we are not ugly, scleroderma is.


Gratitude, Acceptance, Peace

Posted by barefut , 13 November 2007 · 914 views

It's ironic how I never considered myself lucky until after I was diagnosed with scleroderma. Yep, there's nothing like a devastating, chronic illness to help you put things into perspective.

I remember coming home from an appointment with my counselor not long after I was diagnosed. I was still in the "shock/freaked out" stage and was fully expecting to not make it another 5 years. I stopped at the grocery store on the way home just as it started to pour down rain. People were jockeying for a parking spot close to the door. I parked as far away from the door as I could and savored every delicious raindrop that fell upon my grateful head as I walked slowly into the store. I was tickled pink to be able to do my own grocery shopping, even in....no, especially in the pouring down rain. For a time, the sun shone brighter, the air smelled fresher, the rain tasted sweeter and the birds sang just for me.

I have to be honest; I haven't managed to maintain that level of gratitude for the past (almost) 2 years but I do keep finding more things to be grateful for everyday. I find myself saying, "Things could be worse," a lot. That helps to put things into perspective and gratitude falls naturally into place.

I have found that counting my blessings has made me a better person in many ways. Gratitude makes me a more positive person. Instead of focusing on the negative, or on things I don't have, or wish I had, I see all that I do have and appreciate it more. Being grateful for what I do have helps me to focus on the positive. (I still wish I had a jacuzzi on the patio though, strictly for health reasons of course! ;) )

I have come to accept scleroderma as a part of my life - a part of my life, not consuming my life. No matter how much more this disease may progress in me, I will never let it consume me or my life. I am more than scleroderma is or could ever do to me. Scleroderma may someday take more of my body but it will never take my spirit. That sounds all good but it's something I could never do without the help of friends and family.

Since my diagnosis I have slowed down a lot. You can't help it not to stop and smell the roses. So many wonderful little things become big when you pay attention. When you slow down, you can become a better listener, have more patience, see all the things you have to be grateful for and you will become a calmer, more peaceful person in the process.

In a way, sclero has brought me many blessings that I am grateful for and a lot of them are my friends here at ISN.


Diagnosis: Diffuse Systemic Scleroderma

Posted by barefut , 04 November 2007 · 1,212 views

For six years I had a "probable lupus" diagnosis. I never could get used to the word lupus. I just don't like the way it sounds: Looo Pus. Lew pus. So I just never used it. Then, good news! I found out I didn't have lupus! Bad news. I had diffuse systemic scleroderma. Slcero-what? Sounds yukky and contagious. Ten times worse sounding than lupus. And the diffuse, systemic part didn't sound so great either. You know, the more words they add to your disease, the worse it is.

My diagnosis came on January 2, 2006. Funny how I remember the exact date like it was the day of some kind of disaster.

It took me over a year to own scleroderma. I couldn't even say out loud, "I have scleroderma." It sounded so definite and final. I tried it backwards, "Scleroderma has me." The best I could do was, "I have been diagnosed with scleroderma," as if maybe there was a chance that the doctors and lab techs made a mistake. After all, my lupus diagnosis was a mistake.

There was no mistake. Turns out my lupus diagnosis was just scleroderma in progress. Now how was I going to deal with this? First, educate myself, right? Wrong! Everything I read scared me to......pieces. I felt I was given a death sentence and I could have 3-5, maybe 10 years and there was no way to know.

Here I was, a stay-at-home mom to my two precious boys; in a bad marriage that I was gearing up to end; and in the process of applying to graduate school to earn my masters in Early Childhood Education. I was optimistic about my future for the first time in almost 10 years. I was ready to begin a new, happy, stress-free life full of promise. Then the rug was yanked out from under me and I landed in a broken heap.

My mind raced with, "What am I going to do?!" My first concern was for my boys. Who would take care of them? What would their little lives be like without their mommy? What kind of people would they turn out to be without proper moral guidance?

Then I felt like I had to scramble to get my affairs in order. I had no life insurance. How would I get any now?! Where were my old journals? Was there anything in them I didn't want left behind?

I threw out my completed financial aid and graduate school applications. How could I possibly think about that now?

I became hyper-sensitive, superstitious even, to silly, meaningless things. I could no longer watch my favorite hospital show on TV because people were dying. In one episode, a little boy lost his mom. I couldn't bear it.

Thankfully, I found the International Scleroderma Network Forums and was able to communicate with real people living with various stages, degrees and types of scleroderma and I slowly began to see that, even as serious as diffuse systemic scleroderma is, it is not a death sentence. People were living happy, productive lives in spite of this ugly disease. I learned that there have been great advances in treatments in just the past few years that have given many people new hope.

I have made many new friends on the ISN message board. I wish that I had come here first in trying to educate myself and maybe I could have saved myself a lot of anxiety and grief. With the knowledge and support of all the wonderful people I have met on the sclero forums, I realized that I was still going to have a new, happy life full of promise (notice I left out stress-free) -- it just wasn't going to be the one I had planned.

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