Dark Side of the Moon

I've been unusually interested in loss this last week. I come from a fairly - well actually, a very large family. My mother is the oldest of 18 children who all have their own children, grandchildren and some even have great grandchildren. My mother's father was one of 14 children which means, I therefore have a roughly half a million relatives on her side of the family alone. Interestingly enough we have lost very few of them and when they do pass it is either following a long illness or they are well into their 90's. I know it makes us a very blessed family but sometimes I think lack of experience makes it even more heartbreaking when someone is gone.

I've never been a fan of the Fall. As a Spring Baby, I've always equated Fall with death and endings. Oddly, the relatives I have lost all seem to pass in the Fall. The pets I've had and lost...all passed in the Fall. Did I mention I was not a big fan of the Fall?

Labor Day weekend I came home to a lethargic, slow moving dog. My high energy pup never knew the word for lethargic. I figured it was the heat causing her age to finally catch up with her. She was 9 years old after all. After watching her through the next day I decided medical attention was necessary. After two days in the doggie ER the vet diagnosed her with an autoimmune disorder. Having lived with one of those for nearly 30 years, I said, alrighty then and started her medications. Prednisone, Immuno-suppressants, and antibiotics just in case. Oh and the pills to coat her stomach so all this mess doesn't create an ulcer. I knew the drill. I live the drill. It took a few weeks for me to realize none of this was working and my dog wasn't going to survive this illness. Two days later they were telling me that it was actually a tumor on her spleen and that this was the end for her. It was heartbreaking. The next day the mystery of the lost dog was solved as well. A dog I had adopted at the end of August had gone missing for several weeks. The Saturday after losing my 9 yr old, a woman contacted me about a deceased dog they had found in their yard that looked like the pictures I had posted for the lost dog. Last year this same time I lost my other dog and my first pet ever passed in October several years ago. I can't really blame the season, right? Yeah, well I'm not a fan of the Fall.

Then there are the people. My Grandmother was buried in August. My Great-Aunt passed in September and my Aunt in October. This year after burying the dogs I packed my things to head home for my Great-Uncle's funeral. Yesterday, I missed the funeral of my Uncle's ex-wife who has remained connected to our family.

I also notoriously feel awful in the Fall. Something about the change in temps and the dampness in the air. This year it started early. I've been doing well all summer. I've been to Cayman Island and back with little discomfort. This last month I've been struggling to get to the office and back. I'm worried I've pulled something that I needed. Scared I'm losing function. Scared the Fall is robing me again! With that I stumbled on Gitzen Girl's Blog. Gitzen Girl is written by Sara a woman with Ankylosing Spondylitis. She passed yesterday from AS complications. I've spent the week knee deep in her blogs. For the past few years she has been home bound and blogging. The interesting thing about her blog, once I let go of the fear that I was reading my future, I learned a thing or two. Her blogs are mostly about her faith and her daily decision to choose joy. I have to say, that's a lot harder then you would think. Well maybe the world knows it is a hard decision to make. Maybe it's just me who thinks that should be easy but can't always manage to make that choice. Pain and loss, death, and endings, yet still deciding to choose joy is very difficult. Tomorrow morning, up and out and choosing joy. Gosh, I hope I'm not defeated by the Fall.

Soaring With The Eagles

How does that saying go about soaring with Eagles? Something about how going it alone is sometimes best instead of running around with chickens. I should look that up. Seriously, I don't remember how it goes but it's not really relevant I just like the wood carved Eagle. Whoever did this was most definitely soaring.

I spent the weekend with my friends. Most of them are Eagles, I promise, but we weren't soaring so much as just enjoying our time here. I caught three live bands. Three fabulous live bands. I think I lost about 5lbs in sweat from the humidity and put it back on from food, snacks and drinks! I danced all of Saturday night at three different events until 3:30am!! I sat out the dancing on Sun but still grooved with the band. I took pictures, laughed, ate, drank and was able to visit a couple of local spots I had never been too before. I had a great time. Today I slept. I'm going to be up a little later then I would like to prepare for work for tomorrow but I tell you it was all worth it...and there isn't a spoon left in the drawer. I'll worry about restocking tomorrow!

Laughin', Lovin', Livin'.

World AS Awareness Day

So today is World Ankylosing Spondylitis Awareness Day, we call it AS for short. AS is an autoimmune disorder. It mostly manifests as inflammation of the spine and joints and is a form of arthritis. The two words together mean fusion of the spine. It's a pain in the neck - literally.

AS is something that has been a part of my world and a part of my vocabulary for the last 20 something years. It has been both enabling and disabling through out the years. With time I have several joints that are completely fused. That means they don't move, twist, turn, or bend. There is no cure for AS. For years treatment only addressed the pain and not the progress of the disease. In the last decade treatment options have majority improved treating the progression of the disease by counteracting that over acting immune system. The progressive treatment does nothing for already fused joints. So there are things I can't do and will not ever be able to do again. There is constant pain and a fatigue that slows me down more then I would like. That's the disabling part.

The enabling part is harder to specifically state in a way folks can understand but let me see if I can give it a try. AS gives me a power and strength that I don't think I would otherwise have. The things I have survived and walked away from would have broken a weaker woman! Imagine all the stress of everyday life. The universal things that everyone deals with such as finances, relationships, work, school, etc. Add to that chronic pain, medications, doctors, crazy attitudes of people who don't understand, and constant self checks to see if I can physically do the little things everyday things we all have to do. There is a feeling of accomplishment I get to feel when I realized I pulled off a minor miracle! Getting through the work week, adding in a travel trip and juggling all the tasks of a multi task job by the way is in fact pulling off a minor miracle. In my spare time, by the way, I try to volunteer my time and/or money. I believe everyone has something to give.

AS has also enabled me to shift through the BS and find people in my life who are both open minded and supportive. I've found in life there are people that get caught up in the mundane content  of everyday life. I don't have a lot of time to stress about little things or time to worry about what others think. Having a disabling condition automatically puts you on the fringe in our society. Being on the fringe has a lot of freedom. If you think less of me or not at all I get to comfortably live my life without having to wait for your approval. I get to date the man who likes me for me not the shallow one only in it for what I can give him. My friends are true friends who recognize that love and friendship can't be bought or sold. Don't get me wrong I can and do believe in bringing the cuteness and I still whine when I have the flu. I know, however, it takes a hell of a lot more than a bad hair day or the sniffles to break me. How enabling is that?!

Picture Perfect

I still believe in magic and miracles. I believe that if I want it bad enough and wish hard enough it will happen. I still make a wish before I blow out my birthday cake candles. Sometimes, in the early evening you can catch me out wishing on a star. Star light. Star bright. First star I see tonight. I wish I may. I wish I might have this wish. I wish tonight.

Photography represents magic for me. If you've ever been in a dark room you know what I mean. You mix and mingle and get the chemicals just right. You set your negatives. You change the lighting, focus and burn the image. You bathe the paper, sliding it out of the wash and watch as slowly the image appears. It's magic. Pure magic.

After my first class I was hooked. I just knew that when I bought a house I was going to get an extra bathroom so I could make it into a darkroom. I needed to make magic on a regular basis but by the time I bought a house the world had gone digital. Thank goodness. While I still believe in magic a chemist I am not, nor is math my strong suit. In that class I never, ever managed to get the measurements right - in the dark!

I still think there is something magical about photography. Is there any other way to make time stand still? Any other way to truly capture a moment? Forever, until the end of time this Sea Gull will be chatting with me as I'm lounging on Cocoa Beach.

Years later I'll still remember the beauty of the roses from the rose bush long since plowed under by a careless lawn mower.







Or the bloom of the Hibiscus tree while it was still healthy and green before I left it in the cold a bit too late one fall.

And the day I caught someone sleeping in my bed still gives me a chuckle. Soon she'll have a hard time getting her achy legs to lift her up that high as she has more and more gray hair everyday and as she has been showing those tell-tell signs of an aging dog. Here for a moment she's just a sleepy-head who has decided that in my absence she's find right here in my bed. Here she has made the independent decision that my directive to stay off the furniture doesn't really count when you are extra tired and no one is around to tell you no.

It's still magic to me. So the pictures in my blog are mine. They aren't always picture perfect and they are usually shot on my no frills Cannon Powershot. They are usually, from my travels (my other true love). Not only do I find that the picture itself stops time, but the process of picture taking often slows my heart beat. It makes me notice my surroundings. It allows me to capture the moment and save it for later. Sometimes, although not usually, but sometimes it isn't even about the picture that comes out so much as the process of taking the picture. Admiring the beauty that surrounds me every day.

Searching for the Good

Wanna know my favorite part of pain? I know you are shaking your head about now, saying to yourself that I've lost my mind, who has a favorite part of pain. Well I do!  It's that part when you realize something that hurt either doesn't hurt any more or hurts a lot less. You know, like when you stub your toe. First it hurts like nobody's business, then the throbbing sets in, then as you are going about your day at some point in time it stops. At some point in time you think to yourself - hey my toe isn't hurting anymore. That point! That point where you say - hey my toe isn't hurting anymore - that's my favorite. It's like sunshine after a rain. I make an effort to notice that moment. It's like searching for the good. 


So often I read about people with chronic illnesses, health issues, or disabilities talking about their pain, their illness, the disability as if it is central to who they are and what they do. Kind of like living inside the pain. The pain can be overwhelming, trust me this I know! If you are not able to see the good, however,  you'll never move up off that street. Never change addresses and always live inside the pain. Surely, no one wants that to happen. So what good has happened today?

I read a post online that said people with chronic illnesses should tell people how they are "really" doing when someone asks how they are today. Having lived with a fair amount of severe pain when you ask me how I'm doing I say - "I'm good" or an occasional "I'm okay". Is that an honest answer when my knee is swollen, I have a bruise from my monthly medicine, and I have an x-ray order riding around in my purse? Heck yes!! I live alone. If you are talking to me it means I'm out of my house. I'm out of my bed. I'm dressed the dog has been walked and I drove to where ever it is we are talking. I AM GOOD! Heck I might even be great!!