Picture This!

One of the my fellow spondys posted a link to Gitzen Girl's Blog. Gitz's stories were inspirational and her faith was unshakable straight through to the end. If you have not read her blogs be sure to check them out. One of the things I enjoyed the most about her blogs were her week in pictures. These are actually last week's photos but I thought I would carry on. I think they are connected to Project Tuesday for Mom's. Not being a Mom (of a human baby) I'm just posting pictures of my week.

Monday, Oct. 10th: I am a pet Mom and have given my heart to many furry creatures. Only thing is the average life span of a pet is much, much too short. I have loved and lost and do sincerely believe that giving my heart was worth the pain at the end. In the time I have lived in this town I have watched four pets grow old and pass. I seemed to have collected a house full of pet ashes. So on Monday I decided it was time to let go.

Letting Go

Newness & Light

I was a little worried that I wouldn't physically be able to do this but I was shocked to find that not only was I able to complete the task but it was fairly easy and very therapeutic. I dug a hole, put in all the pet ashes and planted a butterfly bush. Hopefully, the ashes will help to make the flowers bloom.


Tuesday, Oct. 11th: It was an absolutely beautiful day so I went out the Spillway to take photos. Just to take photos. Another physical challenge that turned out better then I had expected.

Ain't Wish' Gone Fishin'

Hard At Work

Wednesday, Oct. 12th: I've been taking pictures for my church. I take so many pictures without thinking twice. I love pictures from both sides of the camera (sad but true). I sometimes forget that everyone isn't as camera friendly as I am. I was quickly reminded. He's a cutie but I suppose he's allowed to not want a strange woman randomly taking his picture.












Saturday, Oct. 15th: I think I was busy with work on Thurs and Fri but the camera was out by Saturday for the church concert!

Oh Happy Day

A good time was had by all! I'm off to take photos for this week. Talk to you later.

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'.

Still Here

Still Here

been scared and battered.

My hopes the wind done scattered.

Snow has friz me,

Sun has baked me,

Looks like between 'em they done

Tried to make me

Stop laughin', stop lovin', stop livin'--

But I don't care!
I'm still here!

~Langston Hughes 

There is something about this poem that speaks to me. I'm still here!! Can't get rid of me that easily! I'm still here! Through the pain. Through the humidity and the rain. I'm still here! Still here, waiting to see what tomorrow has to bring.

As far as days go, I have had easier ones. If I thought I could have stayed in bed all day I would have. I dragged through the whole day. I'm not complaining, well with the exception of the fact that I couldn't skip work and stay in bed. I'm not, otherwise, complaining because 1. I had a pretty good - drag butt day and 2. I'm tired because I spent last night, talkin, laughin, and livin with my friends. If I'm going to feel miserable on Thurs I like knowing it's because I was kicking it out late on Wed!

The thing about Langston Hughes poems is that he points out the difficulties, while bringing hope and a strong sense of resilience.  I think my day might be a little bit like a Langston Hughes poem - difficult but hopeful.

S.

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?!

Going Through Changes

Putting all humility aside for a second, I've always thought of myself as cute. Not stunning or beautiful but cute. I could have never been a model but I could always hold my own amongst the pretty girls - at least in my mind. I've done alright, I think, with the opposite sex and gotten compliments here and there, now and again. Yes, I know how that sounds but bare with me because here's the problem. In 21 days I'm going to be middle aged! I have held out as long as I could on using the term 'middle-aged' because my family does live well into their 90's. Even with that 45 is half of 90!

At 45 I'm not the cute girl in the room anymore. I have to work, HARD, to maintain...well to maintain everything, really. I keep looking in the mirror asking myself what is that sparkling only to realize it's the light hitting my gray hair. The good thing about that one, however, is that my eyesight is just crazy bad. I can't really see the gray hair unless I put on my reading glasses and stand real close to the mirror.

My body keeps changing as well. I was the same size for several decades. It's only been in the last few years that I have had to buy the three completely different sizes of clothes. An entire wardrobe in three different sizes! I can go up a size in a matter of two weeks (if only I would lay off the cake, I know). With some serious work I'm still able to come back down in size but then I can't wear those cute blue pants because they are too big and that cute striped shirt cause it's too small.

Then there is the AS, kicking my AS! As I've gone through physical changes with this disease, I've still maintained my belief in my cuteness. I always figured it is why people stop and stare at me as I walk by them (side note: if you are one of those people, staring won't ever really answer the questions you have. It just makes us both uncomfortable when I catch you). There are days, however, where my belief in my cuteness starts to wane. It's hard to catch the eye of the cute young thing when you can't turn your head to bat your eyes and just the idea of flipping your (gray) hair hurts. Then there are the days when I want to give in and slouchy walk as my achy body would like, in order to relieve the pain. I know I can't do the slouchy walk if I even hope to maintain a decent posture, but man some days, cute isn't even on the radar.

Sometimes I sit and watch the cute girls of today and wonder if they realize how easy they have it? I admittedly have fond memories of those days when things happened just because you were a cute girl. A friend of mine refers to it as playing your 'girl card'. You know, when you needed something fixed or a tire changed, you go all out cute girl until some knight in shining ArmorAll comes and fixes it for you. At this point, with a stiff neck, a slight limp, gray hair, bad eyesight and my too big/too small outfit I think I'm just going to pay the automotive guy. It's so much easier, no flirting necessary, just a AAA card!

Long and Winding Road

I think my personal story with Ankylosing Spondylitis is a lot like that long and winding road. In retrospect I’d say I started having back pains when I was 16 or 17 years old. I remember a time in high school gym when my hips hurt so much I couldn’t run the relays we were supposed to be running. I sat it out and when I felt better the next day I didn’t say anything. I do distinctly remember one of my classmates repeatedly telling me that I walked funny. It was high school. It was the 80’s. We all looked, sounded or walked funny. That’s the definition of high school!

Our first clue that there was something more serious than growing pains came my senior year in high school. I got what everyone thought to be pink eye. After weeks on antibiotics the doctors at the Air Force base clinic started checking for other causes for the redness, pain and headaches. In looking into my eye the doctor informed me that the inside of my eye looked like a dirty fish tank and that I had what was called Iritis. The military doctors were very pleasant but also very perplexed as to why this young seemingly health woman was in with inflammation in her eye. I believe, although I do not recall, that they tested me for every reason they could think of at the time to figure out why I was running around looking through this dirty fish tank.

The answer to the mystery came my freshman year in college. Before I tell the story of my diagnosis you should probably know a little about me. I’m the youngest of four, African American who comes from a big extended family where I am one of about 50 something grand kids and my father was career military so I’m an Air Force Brat. I don’t know if it is one or all of these facts that directly relates to the fact that in life I have learned to adjust and accommodate with little fuss. With so many others around and with the strict rules of being a military brat you learn to get in where you fit in and to make it work. So apparently, I adjusted and accommodated for some discomfort and/or pain for years without realizing that was what I had done. When I returned home from college, at semester break my Dad told my Mom to take me to the doctor to see why I was walking funny. The military doctors took x-rays, ran tests and quickly returned with a diagnosis and a report that I had hips of an 80 year old.  Almost thirty years later I don’t remember a lot about those doctors but I can tell you two things. One I’m glad that they were interested in solving my mystery quickly and accurately and I am grateful that they spoke in terms I could clearly understand at 17 and 18 years old.

I’ll be turning 45 years old on my upcoming birthday. In the time between 17 years old and 45, I’ve had various highs and lows. I had both hips replaced in the late eighties. Oddly enough they are still going strong. My left shoulder fused in the mid-nineties but I’m not particularly interested in more surgeries. I have moderate damage to my left knee and have fused in a whole host of other joints some more important to stable walking than others. I started on the TNFa blockers almost 10 years ago before Remicade was even approved for AS. This of course, for me was some time after suffering damage and fusion that is not reversible. I’m currently on Simponi with moderate results and experiencing serious concerns about the fusing of the joints in my neck. Over the years I have experienced almost all of the possible symptoms of AS from joint fusion to inflammation in my eyes and intestines and issues with psoriasis. It’s all a pain but the medicine helps some and my crazy hectic, stressful schedule makes it all a bit worse. Yet, I maintain some sort of normalcy by maintaining a crazy, hectic, stressful work schedule.

I have had some absolutely wonderful doctors and a whole host of doctors without a simple clue as to what they are talking about. I find that I am best with a doctor I can work with to determine my best care. The ones that dictate and try to experiment with my health are replaced quickly. I still run into doctors who do not believe that I have AS because I’m African American and female. They often sit and or speak in a condescending manner as if either I’m making it up or as if every doctor I’ve ever spoken to before them is wrong. They do this for about 10 minutes until they actually read my history, look at my x-rays or talk to me about the family history I have of AS. In my immediate family three of the four of us have AS related problems. My Mother has had AS problems since her mid-twenties and my Great-Aunt used to tell me stories of how she remembers being in so much pain that she had to crawl around the house as a teenager.

Currently, I work in efforts to make this world a little bit of a better place for people with various disabilities. I have found in life we all have something. I have friends with severe disabilities such as Muscular Dystrophy, Cerebral Palsy and Spinal Cord Injuries. I have worked with people with every mental health diagnosis from minor adjustment disorders to major psychiatric disabilities. I have met people whose lives would be better off if they could disconnect from highly destructive and or abusive relationships. I have worked with people with addictions and people who have to deal with the addictions of family members and loved ones. I’ve met folks who have never had any connection to their family of origin and find themselves navigating this world on their own. I know people who are either unmotivated or simply unable to be an active participant in their own lives. Between travels, work and just life in general I have had the pleasure of meeting people from all walks of life and the one thing I truly know is that we all have something. That’s why I really like the quote that we all should play the hand we are dealt and play it to the best of our ability because the rest is irrelevant. AS is my something. AS was included in my deck of cards. While I have few card playing skills I’m pretty good at bluffing and talking trash so in the end I expect that I’ll win this hand sooner or later.


*Today's blog was also submitted as part of a contest to raise Ankylosing #Spondylitis awareness leading toward #WorldASDay. Details can be found here: http://bit.ly/icYcx5 

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.

Words have POWER

First I need to start with the fact that I spent the day minding my own business. Just like the water. I even redirected a student to the person who could and should help her. The person who has the power to address the issue.

Oh the fun thing for today...I was interviewed by a group of five year olds. Along with knowing about my job and what I do to uplift my community they also know my favorite color is purple, I lived on an island growing up, I love shoe shopping and my dog's name is Maya. It was a very nice change of pace for my week. They are using the information to write a poem. I'll be sure to share the poem. I'm a little nervous.

Now on to today's topic....

Yesterday, I was sitting in a meeting in front of an English professor. She asked the speaker to answer a question on a word the speaker had used. The professor admitted that her question might be a matter of semantics but she needed to make sure there wasn't any subtext. Meanwhile, I'm thinking..."because words have power". 

One of the things I've been doing for years is training folks with disabilities and/or training folks to work with people with disabilities. As I move my soap box into place, let me tell you, I just cringe inside when I hear certain words in reference to disabilities. Some of them are as hurtful to me as a racial slur. Suffer, Afflicted, Arthritic, and Patient are four of my least favorite words. My doctor is over across town. I see him maybe three times a year. Him and his nurse are the only people who can call me a patient just because I have an autoimmune disorder. I'm a woman. A dog owner. An educator. A bad singer (who sings ALL the time). A clown. A blogger (as of this week). Some days a Princess even but not a patient! Unless, of course, you happen to catch me in a robe with my butt hanging out.

I'm also not afflicted with anything. I have an autoimmune disorder. If you don't know why that one is offense, here's a quick definition: "To inflict grievous physical or mental suffering on".  Most days I'm not "suffering".  In fact if you catch me "suffering" it's more so because I'm spoiled, I like getting my way, and I might be a little over dramatic. Let me miss a meal and I'll be sure to tell you I'm suffering and blame you if you are between me and my next meal. As a person with arthritis I have good days and bad days and to imply I'm suffering negates all the wonderful things in my life. All the wonderful ways that I would much rather describe myself. This week I'm going with Rock Star!

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!!