The Extended Sort of Hope

I can’t believe it’s actually come to this.

I’ve got to spell things out for people.

Senseless tragedy in the world and people in this small little town have nothing better to do than speculate as to how much I’ve paid for my recent treat to myself.(answer a whole lot less than you can possibly imagine~!) I drive a 20 year old car and people are bent out of shape because I went and did something to make myself feel better. I have some nerve!

I wish I was as curiously involved in one tiny little modicum of other peoples’ lives as much as people seem to be ingrained in the daily happenings of mine. Over what I am wearing, what I am doing, what I’ve purchased recently. ( which is not much, actually).

It’s so odd to me that people think that once they’ve held a fundraiser to assist with your medical bills that it somehow now gives them carte blanche to judge everything and anything that you do for the rest of your life. I swear I don’t understand people. As if I make no other income, only what I gathered at the fundraiser. As if I should never do anything else again.


I’ve gotten static about the photos I’ve posted. About how much I payed Soul Imagery to take my photos… and not that it’s anyone’s business but I will answer this…I met Kevin in a photography group. I model for him. Kevin is my friend that does photography. I’m very proud of his work and I simply love to play dress up. We work very well together. He has taught me an awful lot.

Soul Imagery Website

Playing dress up affords me a few hours of escaping my reality.Reality with a chronic disease can sometimes really suck. It’s a reality that consists of a disease that is rated higher on the pain scale than any other disease known to man. A reality that consists of intense muscle spasms that render some of my body parts useless from time to time. A reality that makes eating difficult and digestion sometimes near to impossible. A reality that makes it too painful to sleep on my ears or to stay in one position for any length of time. The realities of my disease are too numerous to list and too upsetting for most people to read or comprehend let alone for me to even mention, so I usually don’t. And unless you are my husband, or my family or a very close friend, you won’t hear me complain, either.  But because I go out of my way to look good when I leave this house, people fail to see me as sick. Let alone grasp my reality. Hope

Because I go out of my way to appear as “normal” as possible, people just don’t understand. I honestly think that some people would prefer to see me looking like death, hunched over in wheelchair, swollen, discolored and writhing in pain. To them, then I would actually *be* sick.  They only see the “best” of me because that is all I allow people to see. I don’t allow people to see me at my worst.

I allow people to see me taking photographs at my childrens’ sporting events. I don’t allow people to see me the 2 or 3 days afterward that it takes for me to be able to use my hands again properly. I allow them to see me in photos but I don’t allow them to see what I look like on days I am really sick.

This week I decided I needed a change. I haven’t been feeling my best. So, because I have access to a full compliment of womanly wishes (with wonderful employee rates) where I work part time, ( it’s a hair salon),  I decided I’d see if I could stand extensions. We were afraid they’d hurt or I wouldn’t be able to stand them for long, but it’s been almost a week and so far so good. Except they itch. A lot. So they may end up being short lived. Which is a shame, because I really like them, and I’d love to play dress up while I still have them.

natural light + new hair

I don’t think I will ever stop people from being in my business and I’m not sure why they feel that it’s ok to be so nosy and so judgmental.  Some of my close friends think I should feel flattered that people find me that interesting. I’m not flattered. I feel sad for those nosy judgmental people.  Sad because I can’t imagine what they must be lacking to be so concerned with what others are doing.  Sad because if they are so interested in me, they must lead very boring lives. People like that usually only want to feel superior to you for one reason or another, be it jealousy or be it a quality that you possess that  they can’t seem to cultivate. They will sit on their self made throne and judge you,  but in reality you know that they are only judging you for some inadequacy they have found within themselves.

I simply have no room in my reality for people like that any more.

The working sort of Hope

When I decided I was feeling “well enough” to attempt to return to work, a dear friend who is salon owner afforded me the opportunity to test the waters by working very very part time as a receptionist for her Salon. She has been a true gem about working with my limitations. I love my job. I get to get dressed and hang out with grown ups. It’s not too stressful and I get to try to make people smile. I get to see people made beautiful by the talented people who work in our salon and I get to see how excited and happy it makes them feel when the staff is finished working their magic. It’s such a great feeling even though I had little to nothing to do with it. I admit working there is sometimes difficult.. it’s loud in our salon. Dryers are noisy. Phones ring constantly. But working in a salon sure does have it’s perks.  I get to “look good” even when I don’t “feel good”. My nails are almost always painted ( red. always a shade of red.) and that includes my toes. My hair is coiffed 99.9 % of the time.  I’m one of “those women” who pretty much never leaves the house without ‘being polished’.

I get dressed for me. I get dressed to make myself feel better. I’ve found that the worse I look each day, the worse I tend to feel. Conversely, the better I look, sometimes the better it makes me feel. Plus, I will admit, I am very vain. ( ask my best friend, she loves to tease me about this.)

Just got myself some new for fall red hair. My sister Holly is quite talented. Feel so lucky to have her. Even luckier that I get to work with her even though it’s on that very very part time basis. She works in the salon with me. Working in a salon and having a sister who performs miracles on me is a huge money saver for me.

I’m really spoiled, though.  I barely know how to get ready for special functions without the assistance of my sister! I will, however, tell you that I’ve had 2 professional manicures in my life (for my wedding and for my dear friend Sherry’s) and never ever have I had a pedicure.  My daughter seems to be holding the market on “pampering thyself ” in this family, which is fine with me, I suppose. Someone else can try to support her habits some day.

Being at the desk enables me to see everything when it comes in. I get to check out all the new polishes too! I am currently addicted to Big Apple Red from OPI even though it’s an older shade. I’ve got a cabinet full of OPI reds- plus one Chanel red. (it was a gift- Red Passion #5.) One of my dream jobs is to be the person who names the polishes for OPI.

Right now I am enamored of the Americana Collection- they’ve got a brilliant shade of red called “Hussy”. I just want to tell people I’m wearing “Hussy”.

It’s my hope to be able to return to a more part time position some day. For now , I’ll just keep enjoying my little salon job with my big sister.