365 Challenge – Day Feb #3- Bedside

Feb 3- BEDSIDE

Confession:  I cheated on this one. I knew that I had already taken a photo (with my Droid) that means more to me than any new one I could possibly take. It is one I had taken last year for no particular reason on January 12, 2012 .  This is the lamp next to my bed.  It is “adorned”, if you will, with all of these necklaces, which were all given to me by one friend or another at some time during my 12 year RSD journey. They all mean something to me and they are usually the last thing I see before turning out my light at night and the first thing I see when I open my eyes in the morning. Each are a symbol to me that I do not fight this battle alone. They give me strength, and they encourage me. Though I know they would be better preserved tucked away in my jewelry box, I will always leave these particular necklaces hang on my lamp, by my BEDSIDE, so that I know that no matter how hard it gets, I am never alone!

Day Feb #3- BEDSIDE.

The Sort of Hope Who $u<k$ Less At Basketball (than I did just a few months ago! :)

Nothing will work unless you do.

 John Wooden

And working I have been! (at my photography, any way.)

I didn’t want my poor neglected blog ‘s friends to think that I’ve just been sitting around eating bon bon’s waiting to not fulfill my commitment to the pictures for the 365 Challenge. Au Contraire!

I’ve been quite the busy little sick gal. I’ve been working so diligently at trying to get better at my basketball shots. Photos that is. A Michael Jordan I will never be. Just as I’ve been working hard, so have our basketball teams. Our boys and girls have both made County play offs – So proud of them!

Which means that I will even get the opportunity for extended practice this season. I didn’t want to bore you all with shots every time I took some , but here are a few that I just decided were post -worthy.

If I were a bit more clever, and had a bit more time, and hand strength left, I’d set it to some really balling music and video up for your viewing pleasure. But I’m not feeling very clever, I don’t have the time and my hands are a lost cause this close to treatment.

Hope you enjoy viewing them as much as I have enjoyed taking them nonetheless!

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365 Challenge – #6 Feb ~Saved (Up)

My poor little neglected blog. How I’ve missed you!

My apologies… I started a corresponding facebook page! ~ https://www.facebook.com/Allsortsofhopecom?ref=hl

My new FB page!~ Go ahead, check it out.

Then I went  to about five trillion basketball games, a few gymnastic competitions and tried to recover from all that stuff. Having some trouble with my hands, too. Trying to keep the keyboarding/ processing to a minimum.

SAVED (UP).

In this photo, I am wearing pants that I , Hope the clothing hoarder, had SAVED from, no kidding, the early 90’s. I had also taken this photo using a Minolta lens with a Nikon adapter that a friend had recently given me that he had SAVED from years gone by.  In addition, the lovely silver necklace that I wear proudly around my neck  has a silver ribbon with the word HOPE engraved on it. It was a gift from a woman who had SAVED it for a while til she remembered to give it to me.  I waited quite a few hours to get my knuckles un-swollen enough to be able to type even just this pathetic little paragraph. So in essence you could say that  all these things had been SAVED UP for- just to make this photo.   (kinda? sort of?) .

It’s a stretch at best. But right now, I’m saving up for so many things the best thing I could think of  for “Saved up ” was my actually my new ( old) car that I finally went out and purchased after months and months of not having. However, when it came time for my car to make it’s photographic debut, it wasn’t home because my son is now driving it as his was just hit while being parked outside of our home. You see, that’s how we seem to be doing things in this house lately. One step forward, two steps back. It’s a good thing that I saved up for it, though, or we wouldn’t have anything to drive.

I’m also trying to save up every last bit of energy and strength I have. My vision is starting to play tricks on me too. I’m getting anxious. I’ve got a treatment in just 21 days! And that’s the big winner for SAVED UP, I suppose…. the strength and energy it took me just to do this whole thing. I pray no one ever truly understands what I mean by that.  Sadly, I know that there are far too many of you who do.

Day #6 of Feb- Saved Up

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The Sort of Hope Who Played on the Tracks

I finally got to do something nice for a young lady who is part of a family who has been so very nice to me over the years. Taught myself 2 new editing techniques, too!  ( … if only I could get paid to do nothing but take pictures and edit *sighs dreamily*) Cold weather is challenging for healthy people. Cold weather can be all but deadly for some people with RSD/CRPS. (our nervous systems don’t adjust well to temperature changes, so once we start to shiver, or get cold, it is sometimes near to impossible to get our body’s core temperature back again. ) But Teryn was tough, so I had to be too. She’s a seasoned competitive athlete-a real gamer. I figured if she could stand up on the top of a train in what she was wearing, I could be brave and all bundled up down below. ( and believe me, I *was* as bundled as movement would allow for.)

Beautiful girl and a fun day.

Some days it really is good to be me.

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The Sort of Hope Who Has Time

Hooray for 2013.

I’m beyond excited. I was invited to join a tiny little group of very talented female photographers called “365 days of learning and growing .”  It was started by a woman whom I both admire and respect.

I can’t wait to learn and grow with them. I tend to be an over- editor so I know that over -editing will be an all to familiar critique for me by the end of the year. But what a great journey. What a neat way to ‘perfect one’s craft!’.

Right from the start I know that I will never make it to actually posting a photo a day, my process is too cumbersome and my health isn’t always cooperative,  but I am certainly going to try. Maybe a 7 photos a week?

Today our photo was “Resolutions”. I took the literal/New Year’s  way out.  Not the photographic Resolution interpretation.

I can’t remember ever making a resolution but I figure now’s as good a time as any to start…

and speaking of TIME…

My resolution.

TIME. ~to appreciate it more, to forget it about it more often, to use it more wisely, to remember to cherish every moment of it that I have been given and to be thankful for it. To enjoy the TIME I get to spend doing what I enjoy, to not complain when it’s TIME I have to spend doing things I don’t love.  TIME to spend doing things for others and to remember to spend TIME  doing things for myself. TIME to cherish the TIME I have left.

TIME to stop worrying and TIME to just let life happen.

TIME to forgive. TIME to forget.

TIME to live. TIME to love.

TIME to hope.

TIME to stop watching the clock.

The Rudolph Sort of Hope

My least favorite Christmas gift this year… a cold.

Can’t return it. Can’t exchange it. Can’t re-gift if. ( wouldn’t if I could.) Can’t seem to shake it, either.

When you have a chronic condition like I do, simple little things like the common cold are anything but simple. Plus, we RSD’ers seem to do everything on a grand scale.  With immune systems that are already functioning out of whack , fighting a common cold can really tax our bodies. Sometimes that taxing causes our disease to “flare up” = not so much fun.

Who knows, maybe they’ll let *me* join in some reindeer games !?

( if I’m up to it. )

 

 

The Ever Evolving Sort of Hope

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.”
― William Arthur Ward

Imagine my surprise when I finally had a moment to log on to my treasured blog and discover that I’ve not only reached 100 followers but have also been given the gift of 2 very lovely blog awards by 2 wonderful fellow bloggers!!!

 

The Leibster Award  from Anita’s Blog ~ Noted In Nashville –

Anita shares her music and makes me hungry when she shares her favorite foods. She is a singer and songwriter and also loves food ( did I mention that food part? 😀 )

and from another woman I read every chance I get,~ RARASAUR  came the ” Very Inspiring Blogger Award”  which she gave me for ” inspiring and encouraging the unexpected”  ( Which made me cry). This woman oozes writing talent and humor. I am honored beyond words. She is who I aspire my writing to be when my writing grows up.

When I get a whole uninterrupted minute and finish my chores, I plan on responding properly to these wonderful nominations. Thank you ladies for making this small town girl feel pretty darn big.

I only started blogging to hopefully raise some awareness about this thing called RSD. To maybe ease some of the pain of this dreadful disease and also to not feel quite as isolated. Getting 100 followers was something I never really thought about. I didn’t know if people would “get me” or understand my peculiar sense of humor. I didn’t think people would like to look at “one more photo that Hope posted”.  But you’ve all proved me wrong.

Who knows, maybe you don’t look at all the pics.. wait, we’ve had this conversation, haven’t we?~ “the sort of hope who knows you’re visual”

Anyway, I thank you for stopping by, for whatever reason.

And I thank you for continuing to inspire ME to go on.

“Unexpected” ~ that’s one word that has never been used when describing me before.

Guess that’s the ever evolving part. 😀

allsortsofhope.com~ the musing of a frustrated, modern day, red headed housewife , ever evolving mamarazzi of two teen athletes.

 

 

The Jolly Sort of Hope pt 1.

Ever since I started dating my husband, the last Sunday before Christmas was always one of my favorite days. His mom and step father host a party that is filled with family and food and children. Santa even comes to personally give all the little children their “early drop-offs.” Everyone gets a chance to sit on Santa’s lap and tell him what they wish for and/or have their photo taken. For as long as I have been married ( 16years) there has never ever been a shortage of small children in this family. They are the joy of Christmas for me. How wonderful it must feel to be able to host such an event! Sadly this year, for the first time in my life with my husband, I couldn’t even make it to the end of the night. Thank you RSD.

Normally we arrive way before everyone else and stay way past everyone else. It’s time we don’t often get to spend with some of the people at the party. Plus I always felt like I needed to help my MIL as much as I or my family could that day. It’s a huge undertaking for one person. But I’m sure worth every moment once you see the smiles on the children’s faces as they see Santa come down the stairs. Last year I positioned myself perfectly to take pictures of just that. The little children as Santa arrived. Sheer Christmas magic!!

This year I photographed the event with my broken 18-105mm lens. The focus doesn’t always focus and the zoom doesn’t always zoom.  Challenging at best. Like many of my mentors, I don’t shoot with flash. Indoor lighting and I are not the best of friends. That being said, I’m not too terribly disappointed with the results. It can sometimes be like a mini press conference when the children hop on Santa’s lap. But I did get most of the kids as they sat on the guy in the red suit’s lap. Some didn’t stay long enough for my fickle lens. Some did. Some families looked at other people who said “say Cheese” and  sadly you can’t go back and get a do-over.

So as my BFF has been heard to say to her 2 boys ” you get what you get and you don’t get upset.” ~ In any event, I hope no one get’s upset. My in law’s Christmas party never fails to help make me jolly. Holidays are about families and love.

Merry (after) Christmas!

La famiglia~

*do not try this at home*

HOPE and her boy

My MIL and some of the little girls

If everyone is talking, who is listening?

Santa’s helpers: Natalia and Bri

Santa’s Sack (made me giggle~ still a teen I guess)

Mike’s Mom and Step Father

My Mom and Dad. aka The Gump and Gma

The Sort of Hope Who Helped Make Spirits Bright

Hello Blog world friends

I haven’t been able to blog much since the happenings in Newton CT last week. Haven’t been myself. Haven’t felt joy, or love, or even much  ‘hope’. Until just these past few days.

However, I’m beginning to feel  a tad bit better. I’ve witnessed at least 4 things that I’ve found noteworthy that have helped to change my opinion of our world. Things that I felt were worth sharing.

• Unbeknownst to me, I had a high school classmate who teaches in that very school district. Her name is Bonny. After the tragedy, Bonny began something called “The Snowflake Project”. She posted on FB that she wanted all of her friends help in making snowflakes to hang in the hallways of the new school (which was an old, no longer used school) where all the children would now be attending.  Thanks to the power of social media, Bonny’s project took on a life of it’s own. Everyone shared her status, myself included. My friends who don’t even know Bonny went on to share and act on Bonny’s project! It went completely viral. We were even making snowflakes here in the elementary school in little Oley, PA.

That made me feel a little bit better. Gave me a little hope back.

• I have a younger cousin who lives in all the way in CA. She had twins a couple of years ag0- one of each flavor.( I was so jealous! )She is also a lawyer who is married to a banker. Very successful. So proud of her.  She is my Godmother’s daughter. My Godmother was a wonderful woman who was taken from this Earth far before her time. She sent me an incredibly generous gift. A new lens. It’s a size that I had but it functions better than mine *and* it does Macro. It’s smarter than me right now, but have no fear, I’ll get there. When I sat down to edit some photos I took yesterday, I had to do little to no post processing. It was amazing- what a hand saver!! But what meant more to me than her benevolence, was the letter that she also sent to me. Her words. I actually contemplated sharing them, but just couldn’t. They are too personal for me. Too special. But I hope she knows how very much they will always mean to me.

More hope restored. People who do things for no reason.

• Then for the second year in a row now, I was lucky enough to be involved in something called “The Cups of Compassion” in downtown Reading, PA.An event that feeds the needy, the homeless in our area.

Got involved with it last year through Nick’s baseball organization. Due to a rainy fall season, and one fall snow-out, we had a bunch of left over food that we decided needed to be donated somewhere. Long story short- we found the somewhere.

I submit to you the letter that the President of Berkshire Baseball wrote which summed up yesterday so beautifully I couldn’t even begin to write another myself:

So today was my Christmas Day, my wife sometimes tells me that I am a scrooge, but that really isn’t a true statement. I really do love Christmas, I just hate the commercialization of Christmas that we experience in 2012 and really for most of my lifetime. Christmas isn’t about trees and lights and presents and gift cards and crazy crowds at the mall fighting over the latest video game or camping out to buy a $180 pair of sneakers.Christmas is about peace, love and joy. Christmas is about true giving. Not the giving of material things, but the giving of real things. Giving a hug. Giving a smile. Giving your time. Giving a meal. Giving to those in need. Giving because you as the “giver” receives as much joy from seeing the true joy that your gift brought to someone else. Whether that someone is a friend or stranger, you can touch someone’s life without running up your credit card debt.Today I was honored to be part of a community that has been labeled as the “poorest in the U.S.” and if a stranger stopped at 5th & Penn today, they would have sworn that we were the richest city in the union. There was no wrapping paper, no gift receipts, no disappointment in what we received. There was no pushing in line, there was no complaining.What there was, was love, joy, peace and giving. There were hugs, there were smiles, there was spirit. There was patience and understanding. There were burgers and dogs and soups and fresh fruit and cookies and coffee and hot cocoa and blankets and hats and even ice cream. There was black and there was white and there was music and it all blended together to make a perfect harmony and a beautiful sound.For about four hours today in this great city, we were all one. The size of our bank account didn’t matter, what we drove didn’t matter, the size of our house didn’t matter, the color of our skin didn’t matter.The only thing that mattered was that we were all there, together. Helping each other with what we had to share. Some gave time, some gave food, some gave money, some gave talents and all gave smiles.For two years in a row now, the true spirit of Christmas came to this city. For two years in a row, I have been able to celebrate my style of Christmas.I am humbled and grateful to be a small part of a great event with such wonderful and caring people.I showed up this morning to give what I could and again walked away this afternoon feeling as though I had received.Thank you to everyone who helped again to make “Cups of Compassion” reflect the true spirit of this city and this season. ~ Dan Clouser, President Berkshire Baseball

I am so lucky to be a part of an organization like Berkshire Baseball that fosters an environment of  compassion and community spirit. More hope restored. People who do things just because.

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And finally,

• Today at work, an elderly lady was telling me when she checked out that she couldn’t keep her next few appts to get her hair shampooed and set because she was behind in her doctor bills. She went on to explain that her insurance didn’t cover regular doctor visits and it cost her $200 every time she got checked. She wanted to make her appointments just for a set ( which is cheaper). We talked for a while longer. I listened and I als0 told her I understood completely because of my condition and the treatments I am currently undergoing. When she left, I shared her story with my boss. Without hesitation my boss said we were going to make her regular appointments happen for her even though she can’t afford them. In fact, she said, we were going to take it one step further and send her a Christmas Card informing her that she had won our drawing for 6 months of free shampoos and sets!

We are just a small salon. Things like that can’t be easy for my boss to decide to do. But she does. All the time. Without hesitation. And she never turns anyone away it seems. I am so lucky to be a part of that environment. More hope restored. People who do things just because. Difference makers.

~”why can’t every day be like Christmas?”

my apologies.. I’m getting past my limit physically right now and sometimes my mind struggles with coherent thoughts when my physical self reaches it’s max. It’s a constant battle between what I want to do and what I can do. 😦

http://readingeagle.com/article.aspx?id=438336

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. 

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.

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.