365 Challenge – #6 Feb ~Saved (Up)

hopenecklace1

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

365 Challenge- Day #21 Dream

 

“So, if I dream I have you, I have you,
For all our joys are but fantastical…”

Elegy X: The Dream,  John Donne

 

my dream

365 Challenge Day #11- Signature

Day #11- Signature.

“Red hair, sir, in my opinion, is dangerous.”

― P.G. WodehouseVery Good, Jeeves!

I ‘ve pretty much always had red hair. When I was younger it was a beautiful dark auburn red. Of course, as we age, things change and like it or not, if we wish to keep living, we must change with them. I decided very early that even though my red hair was being taken from me, I would do whatever it took to keep it red. (Thankfully my sister is a hair dresser!) Though I have often envied women who have gone from blonde to brunette and back again, I really never wanted to be one of them.

I. am. a. redhead.

My children tease me that if I ever stopped being a redhead they would never be able to find me anywhere again. My red hair definitely suits my personality, too. I am temperamental, moody and bitchy beyond belief. I am stubborn, strong- willed and “spirited”, passionate (in all senses of the word.) I have a friend from years ago who told me once that I’ve got “moxie” . (made me giggle.) and I suppose he’s right. I’m pretty mellow until you push me too far. My personality, just like my hair color, is high maintenance, too.

signature

Naturally, given the “challenge” of thinking of  “Signature” , the very first thing that came to my head ( haha) was my red hair. It is undoubtedly my signature.

Redheads banned from Donating Sperm! (6 fiery facts about Redheads)

4 Surprising Facts About The Color Red

all about red

#YOU_TODAY~ 365 Challenge

#YOU_TODAY

 

That’s me today.

I’m shocked! ~my son is turning 17 in just a few short days.

I’m baffled, I’m electrified. I’m energized. I’m in a whirlwind. I’m in a state of denial and disbelief.

I’m in a frenzy to get rid of Christmas and get ready to make a birthday celebration!

In less than 2 years he’ll be gone. College bound ( I hope!)

I’m a birthday fairy. I believe that just about everything in life should be celebrated. ( I know I blogged about this before…)

I decorate the house for birthdays. I allow the birthday child to pick their favorite foods for at least a week. I spoil them as rotten as I can and as much as they will allow.

So today that’s me.^ In disbelief. Spinning. Shocked..

If I could give some advice to all my friends who are still lucky enough to have those tiny voices and tiny hands at home it would be to slow it down. To not wish it away. Though I know there are days that you feel drag on forever, realize that they, too will be gone before you know it.

Wondering about his future. Incredibly grateful for our past together.

And so very happy that he came into my life. (*not pictured)

The Sort of Hope that “Says Watt?”

out of ideas

out of ideas

Remember.. effective 2013 we will stop selling the 75 watt light bulb as we know it.

2014 will see the end of all other traditional light bulbs as well.

Fluorescent-socialism

How will we ever know when someone has an idea again? 

 

(~better grab your share lest you run out of ideas!)

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.

Hope

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 Sort of Hope Who Went Out On A Limb

*15 Days until treatment!*

Today I got to thinking about all the things I was told I would probably never be do again as my condition progressed.

Then I realized that even though sometimes some things may seem impossible at first, or even at all, maybe it’s just the way that I am looking at them. Maybe I just need to change my perspective and put a little bit of a different spin on it and then, perhaps, the sky is the limit.

So today I “climbed a tree”.

~~~~~~~~~~~~~~~~

Hey, everything is really all in how you look at it, right?

and maybe, just maybe, everything is not always what it seems, is it?

I turned around and saw the tree’s reflection also in our pool and thought it was too pretty not to photograph.

The Sort of Hope Who Gets Flushed

Welcome to November~November happens to be RSD Awareness Month! I kicked off awareness month by getting flushed.

 

For those new to my blog, I am sick.  For 12 years I have had a disease called RSD. (reflex sympathetic dystrophy). I am currently receiving regular treatments through an amazing Dr in Philadelphia. This treatment requires regular access to my veins. It is kinda/sorta like chemotherapy but only for what I have.  ( I do not have cancer most people associate ports with cancer so I always feel the need to over clarify this. )  RSD is a disease that affects the central nervous system. It changes the way my body works. It is different in almost everyone who develops it. It predominately affects skin, joints, muscles, bones and sometimes impacts the way the internal organs function( like it has with me). It’s most common trait is severe burning pain. Constant relentless burning.

My port is to make my life just a little easier. A little less painful. My port requires routine maintenance to keep it functioning properly. The maintenance of this port is referred to as a “flush”. It always makes me giggle.  (what it’s called, certainly not the flushing itself, as it involves the insertion of a needle and as far as I am concerned, that is *never* funny.) I go to the Infusion Suite at the local hospital since they have been kind enough to save me the 55 miles that I normally travel to my doctor  just for this literally 2 minute procedure. The nurses and staff at the Infusion Suite are probably some of the greatest , kindest people I have ever had the pleasure to deal with. I always feel badly about taking them away from the very sick people there and they never make me feel like the inconvenience I go there feeling like. My Dr and  I decided I needed a port because my veins kept blowing. Also because IV’s are painful and every time a person with RSD gets a stick somewhere, it is a possibility that their condition can spread or at the very least, cause the condition to flare up. Getting a port was probably one of the best decisions I have made for my own healthcare to date. I had my port inserted right before my first 7 day inpatient Ketamine Coma over 2 years ago which was another great move because I wasn’t really awake to feel any post surgical pain until over a week later.

Most of the time I forget I even have a port. Until I see it. Or feel it. Or bump it. My daughter is somewhat fascinated by my port. She is one of the only ones who seems to ‘like’ to touch it. She likes to feel the “straw” that is inserted up into the main artery into my neck. She’s an odd child.

My port is not without it’s own issues, though. Somehow, out of all the port insertions, in all the operating rooms, mine falls a little short. Literally. Because of that, it has trouble giving returns. The “straw” ( catheter) that is supposed to go into the main part of my heart is just a fraction too short. So while it works to give me my treatments, ( put things into me) it doesn’t often work for blood return, as the catheter sometimes randomly floats between the main ( big) vein              ( artery? ) vein, (I think) and the smaller one right next to it. I can’t really think about it or it freaks me out. Something is randomly floating inside my heart. Ya, cool.

I had a port buddy. His name was Kerry. He used to tease me that his “3rd nipple” was better than mine because it had more holes. ( he had a fancier sort of port). Sadly, the world lost him a few months ago after his valiant fight with cancer. We used to talk about being sick together all the time. He was one of the few people who I ever actually truly talked about being sick with. We discussed how we hated it, our constant struggles, how we hated what it did to our families and how much fighting we did with ourselves. He truly “got it” . I miss him. He was feisty. I loved that about him.

I both love and hate my port. It has saved me countless sticks. But when I do see it, or bump it, it serves as a reminder that I am not who I once was, I am now RSD Hope. And RSD Hope has to get flushed.

The Pensive Sort of Hope

“It makes me wonder, Do we spend most of our days trying to remember or forget things? Do we spend most of our time running towards or away from our lives? I don’t know.”
― Markus ZusakFighting Ruben Wolfe

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More Self Portraits:  http://wp.me/p2HWK6-j   OR Mood of the Moment Blog Entry~ Give me your thoughts…