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.

We Remember

I had finished my graduate school course work the semester before and had moved to Illinois to do my internship and to complete my dissertation. I hadn't been here more than 6 weeks but I had already let them know that I wasn't a morning person. My supervisor gladly allowed me to work from 9am - 6pm instead of the usual 8-5pm. I was more than happy with that schedule. In my twenty something years of working I had never worked a regular 9-5.

My schedule also allowed me to catch the morning shows as I got ready for work. This particular day I was moving slow, real slow and was actually laying on the sofa watching Good Morning America. I remember the first plane hitting and thinking it was an awful accident. What was wrong with the pilot? How did he not see that huge building? Then the second plane hit and I knew - this was not an accident. I remember listening to the news reporters - I think it was Charlie Gibson at that time - as they went through the same thought process. No one really knew what to think. Were we under attack?

When I arrived at work the people were in a frantic state. Most people were out of their offices and a television was set up in the main conference room. In our brick building with no cable the feed wasn't clear but we still could make out the rest of the story regarding the Pentagon, the collapse of the towers, and the speculations as to what was happening. At the time I remember thinking it was directly connected to our government's foreign policies. For the life of me I could not understand how so many people would be killed in retaliation for government decisions. Hundreds of innocent lives lost - many of which who may not have even known our foreign policies. I was perplexed.

Although, I had many of my own feelings to process, my job was to aid others in their process. Our training director who works wonderfully in a crisis, immediately worked to set up make shift crisis counseling stations throughout campus. I don't remember how many people were directly affected by concerns for family and friends in the New York area.  There were at least a handful that came through to get support as they tried to reach relatives flying that day or working in the World Trade Center. Mostly, the people that came through our stations were people worried and frightened for our safety as a nation. Several hundred miles away from ground zero and we were all greatly affected. We were all affected throughout the entire year and years to come, from those who lost friends and family members to those who were deployed to the subsequent wars. Young men and women, putting aside their education, their future, their relationships and their families to check for weapons of mass destruction, to fight a war that many of us didn't understand.

So today I'm sitting and watching 9/11: Ten Years Later. It is the raw footage of the day as it happened through the eyes of a camera man. It is both heartbreaking and heartwarming at the same time. It's a little overwhelming but I sit and watch because it's the least I can do. Too many people  have lost their lives in this 10 years so that we can remain free and safe. We Remember.

Walking in the Sand

Today I pulled my sandals out, slipped my feet in and found that there was still sand from Cozumel inside my shoes. What a pleasant surprise.

I Know My Ship Is Coming In

I took a vacation. I don't remember the last actual vacation. I started traveling so much for work a vacation was staying home and enjoying my own shower.  This year, upon the urging of my family,  we went on vacation and it was fabulous! 

Today's blog is dedicated to a small number of the 400 some odd pictures that I took from here to Cozumel, Mexico. Did I mention the vacation was fabulous?

Jamaica

Dr. Cove Beach. Montego Bay, Jamaica

Rose that Grew From Concrete

Did you hear about the rose that grew
from a crack in the concrete?
Proving nature's law is wrong it
learned to walk with out having feet.
Funny it seems, but by keeping its dreams,
it learned to breathe fresh air.
Long live the rose that grew from concrete
when no one else ever cared.

There is something spectacular about something showing up where you least expect it to be living, breathing, and surviving. The rose that grew in the middle of the concrete. The duck taking a leisurely swim in the middle of Lake Michigan only a handful of blocks from the hustle and bustle of the city. Spectacular.  

 

It has been a very draining week. I keep getting messages from the universe that I need to make a decision about my future. I've been running around, minding my business and folks keep telling me things that imply it's time for something new - something different. It's a feeling I've had for a little while. That feeling you get when your pants seem at least one size too small but I've been ignoring the people and the squeezing. I'm comfortable in my discomfort. I'd like to say I'm the duck cruising happily through the lake or the rose growing despite all odds against it's survival. I'm not. Truth is, I'm just comfortable in my discomfort but it's time to figure something out. It's time to be still and think. Time to sit quietly and listen for that still small voice. The one that knows our purpose and place. 

The poem is Tupac Shakur. His birthday was today.  His poetry and some of the lyrics to his rap songs are also that little bit of spectacular. The man was a walking contradiction but it was obvious he was a great thinker. I always wonder what people would be like if they had similar opportunities.  It always seemed to me that the kid living in poverty, filled with anger has the same potential for greatness as the kid living in peace on the upper east side. Tupac seemed to think that as well. In this world he was more like a rose that grew from concrete against all odds.

Funny it seems, but by keeping its dreams, it learned to breathe fresh air.

Two Piece Suit

I usually have no idea what I'm going to write about on this thing until right before I sit down and write. This one entry has been walking around in my head for weeks. Weeks! It made me anxious just thinking about it. You'll see how crazy that is in a second.

I was raised by two rather conservative parents. I only have sisters, no brothers. My running joke as of late is that I don't know if my father was crazy before he had all girls or if is crazy because he had all girls. He's over protective and a bit controlling to say the least. Add to that his conservativeness when it comes to his daughters. I look around at the things girls and young women do, say, and wear and think I could have never did that - I have a Daddy. Just the other day I was explaining how we didn't stay out later than we were told, we didn't sneak out windows and I didn't bring a boy home until I was grown. He wasn't having it in his house. Even as a grown woman for years he acted as if he was even supposed to have some say over what went on in my house! That's my Daddy. He has his wild side but apparently we weren't supposed to inherit that that side of him. *Side note: he is a loving man with a wonderful sense of humor. He's just old school and had some specific ideas on how to protect his children*

My Mother wasn't much different in some ways. She is the daughter of a preacher and was raised in a church. She married my father when she was pretty young and was a stay at home Mother for years. She was pretty strict about some things although a little more lenient than my Dad. Oh and when she didn't want to deal with it or just didn't want to be the bad guy she would send us to ask our Dad. I'm pretty sure she knew he would say no. I was grown before I picked up on that little trick. As kids we were pretty sheltered. Similar to her parents she also raised us in a church. House rules were if you went to sleep in her house on Saturday you went to church on Sunday.

My parents are the first factor in this tale. The second factor is the Ankylosing spondylitis. The AS showed up right after high school. Over twenty years with AS and there has been some disfigurement and two major surgeries. The disfigurement is enough that strangers know that something is different and the surgery scars are pretty long. I would say that conservative, religious parents and a disfiguring disability that showed up during identify development has restricted me.

Oh there is a third factor in this issue, I was pretty skinny as a teenager. It isn't a problem, I know! But it made me self conscious of showing too much skin. So take my three factors and I have never, never ever, I mean never wore a two piece swimsuit. The closest I have ever come is a tankini. Being 5'2" a tankini looks like a one piece but it felt daring so I own two of them. Not an inch of skin shows that doesn't show in a one piece. I guess I was thinking that it technically is two pieces.

Last summer I bought my first two piece suit. I can't call it a bikini because the bottom is a skirted but it has a halter top and there is exposed skin. A whole belly of exposed skin.

Note that I said I bought this suit last year. Then while we are reviewing, also note that I said that writing about  it makes me anxious. No, what I really said was that the thought of writing about it makes me anxious. So I've been looking at it and talking about for almost a year. This summer I'm wearing that suit! I've been on my exercise bike almost every day since December looking for my abdominal muscles. Last year a friend suggested I wear it around my hotel room (since I took it on a trip yet never took it out of the suitcase). This year a different friend suggested I wear it around the house (since I moved it from the suitcase to the drawer where it lived the rest of the summer). I haven't done either of these suggestions, although I did move it to another suitcase last week.

I pride myself in being daring and adventurous. I like to think that I live outside of the box. I color outside of the lines. I believe rules were made to be broken and things like speed limits are just mere suggestions. Yet, I'm scared of a two piece swimsuit. I have no idea what I think will happen. The whole world will point and laugh? My Dad will drive three hours to tell me to cover up? Like anyone really cares. At my age I don't think my father even cares. So why do  I? This summer I'm wearing that suit! This summer I'm wearing that suit. This summer I'm wearing that suit.



Maybe.

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.

I Hope You Dance

 The Lee Ann Womack song I Hope You Dance is such a great song. Every line is filled with great life advice, stay hungry, stay humble, lose the fear, fall in love and most importantly whenever you have a chance ... dance!

I promise you I have no rhythm. I watched my Dad dancing a little bit the other day. Let me tell you what, I come by my bad dancing honestly! Most people would probably pay me not to dance.  Except for my dog. She loves my dancing. It means I'm in a great mood and feeling groovy.

I hope you dance
(Time is a wheel in constant motion always)
I hope you dance
(Rolling us along)
I hope you dance
(Tell me who wants to look back on their years and wonder)
I hope you dance
(Where those years have gone)

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!

Come Hell or High Water

In my little town we are currently experiencing the great flood of 2011. It's been raining for days. We've had back to back thunderstorms and threats of tornadoes. Unlike other places the tornadoes have mostly passed over our area. There has been some wind damage and fallen trees, a few dark nights with no electricity and a whole lot of rain. A whole lot of rain. In this area we are surrounded by rivers so all the rain has raised the rivers up and out of their beds, flooding the area. 

Gone Fishin'

As a girl who loves a picture I've been driving over the bridges and around the closed roads, watching the water rise and thinking I needed photos. Today I finally got out with my camera. My heart goes out to the people hardest hit but I'm going to tell you what....my people are resourceful. Churches shut down, houses sandbaged, roads and schools closed but I found this man fishing in the middle of what used to be an intersection. How's that for resourceful? We could all sit stagnant and worry and fret about our lot in life, or get out, sandbag the house, catch some fish, make some dinner and move on with our day.

This is probably one of the busiest periods for me at work. Everything I've done or have had to do since January culminates in the next couple of weeks. I've gone from being stressed to be being overwhelmed to just shutting down and vegging out on the sofa. None of these activities are getting the work done which makes me feel worse because now I'm overwhelmed, behind, and feeling stagnant! After going out and taking pictures my stagnation seems silly. My house is warm and dry and regardless of whether or not the reports get written life goes on.  I think the pictures helped. I need to remember there are worse things in life and better ways of handling it all. Life goes on come hell or high water.

 

 

Time

Lately, I'm finding time to be a very nefarious little character. There have been points in my life where it felt like I had ALL the time in the world. Time to be and do all the things I wanted to be and all the things I wanted to do. Right now, however, it feels like the hands on the clock are spinning wildly around the circle. This may be my sleep deprivation talking or it could be a reaction to my myriad of April/May deadlines. It could even be the melancholy that sets in as my birthday approaches. Of course it probably is (D) All Of The Above.

Ground Zero - December 2010

Don't get me wrong, I love birthdays and sometimes I don't mind the fast pace of racing to the finish line with regards to deadlines. I'm not exactly sure how to express it only to say time has gotten away from me today. Maybe I'll try catching up with him again tomorrow.

Change your words. Change your world.

I was going to write about something totally different tonight but I came across this while waiting for my software to update. It seems the difference in life sometimes truly is just a matter of the perspective that you take on what is going on around you. I've been in a bit of a funk lately. Well, I should call it what it is...I'm cranky. It's a stressful time of year at work and as much as I love traveling I have to say that trip took a bit of a toll on me. The trip, however, exposed me to a man named Urban Miyares. Urban Miyares is a disabled vet who is blind, has hearing loss, is considered a walking paraplegic and has a host of other disabilities. 

I personally, don't like doing that comparison shopping thing that people sometimes do....the "wow my life must be great because I don't have all of that" kind of comparing. I do get caught up in the other end of the comparison shopping though. Urban Miyares is a retired millionaire based on life choices he made and things he did following the Vietnam War - which would be AFTER the acquiring the disabilities. He now works as to promote people with disabilities to live to their fullest potential. He continues to make choices that put him way ahead of the game. My comparison isn't a he has a disability isn't it remarkable what's he has done. Mine is just, isn't it REMARKABLE what he has done?! What the heck am I doing?! A friend of mine keeps recommending that I read the book Crush It! by Gary Vaynerchuk. Based on his story of how he acquired his millions I think that Gary would be very proud of Urban Miyares. He certainly Crushed it!!

Today I told someone to stop whining and figure it out! I'm just horrible with the advice, or at least that's what the person I told that to is staying to himself about now. Seriously, though I think I could use some of my own advice. I've been a minute from being whiny myself all week. Sometimes I get so tired of having to hold it all together. Then other times I figure I'm one of the lucky ones. I have nine hundred things I want to do in this world and I think I have the potential to get most of these things done. Apparently, I can take this week to whine about not having things go my way or I can figure out how to change my words and change my world (although I still don't have the energy to Crush It!).

I found the video clip, by the way, on Urban Miyares' Facebook page. He's also on Twitter - although I suspect, based on his schedule, he has PR people helping with his online media presence. He is the ultimate Entrepreneur after all.

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 

Giving Faith a Fighting Chance

I love traveling. I spent this last week out in California. Standing by the ocean I kept singing that Lee Ann Womack song, I Hope You Dance. There is truly something about standing by the ocean that makes you feel small and slightly insignificant, but not in a bad way. You feel small and insignificant in a what a great and vast world this is, kind of way. You can travel from coast to coast and never see it all. I think I'm going to try, however. I love traveling.

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.

Drawing A Blank

Today has been the most unproductive day! I wouldn't normally have a problem with unproductively. In fact I rather like it. Only this day wasn't supposed to be one of those kick back, take a nap, enjoy the sun kind of days. I only have two days at work this week so I needed to get a few work things completed and a bit done around the house. Instead I hung out on the sofa the better part of the day. Now I'm wondering how everything will get done before Wednesday. Maybe, if I'm lucky, the shoe cobblers that sneak around making shoes at night will sneak in my house and finish my laundry. Hopefully, they will come and hopefully the dog won't bite them. She's not too keen on intruders.

Rethinking Possible

This evening, at the event I attended, one of the speakers was talking about surviving instead of being defeated. Using the AT&T commercial he suggested that we "rethink possible".  His point was that things come along to get us down every day. Every single day there is an opportunity to either be defeated or to survive.

Years ago my sister bought us these cards with sayings on them written by Maya Angelou. The are called Life Mosaic. I have my set in the bathroom, by the mirror so I can read one of the cards every day as I'm doing my hair. They would probably be best described as affirmations. With regards to living and surviving Maya Angelou says...

Surviving is important. Thriving is elegant.

The discussion spoke to me as someone with a chronic illness. I think the reason I can be positive most days is because I know what I've been through over the years. There have been days when I'm barely able to get from the bed to the bathroom. Other times when people are disrespectful of me because they consider me different or unable because of the chronic illness. I find that attitudes bug me just as much as physical pain sometimes. Days when either my body is betraying me or I'm losing faith in mankind are days in which I struggle the most. Then there are other days when everything is as fine as rain. When the sun is shinning, the flowers are blooming, every song being sung is in tune, I'm happy to let the dog drag me down the street (she calls it a walk) and the fish are all swimming upstream. Remembering that those days are just around the corner helps me to get through the rough patches. During the rough days I find a comfortable position, take my meds, apply heat and think about the possibilities of tomorrow.

Today, by the way....all the fishes are swimming upstream! 

Playing the Spoons

Yesterday I ran out of spoons before I could get a blog written and posted. I was at work until after 8pm full of energy. The short drive home, a snack, medicine for both me and the cat (which was a wrestling match), I crawled in bed and was out like a light. I was spoonless! For all the spooonies who may stumble across my page I know you know what I mean! Exhausted past the point of exhaustion. Seriously, I was a worried I had dipped into today's supply of sppons. Luckily when I woke up this morning,  today's supply was intact. I was even able to grab of couple extras out of the draw by actually exercising like I know that I should. Whoo hooo! (As a bit of a side note, please rest assured that I haven't wasted a single spoon on housekeeping this week).

For those of you who don't know the spoon theory, you should check it out. It is one of the best theories or explanations of life as a person with a chronic illness. I'd try to explain it but the condensed version does it no justice. You have to read it for yourself.

TheSpoonTheory by Christine Miserandino www.butyoudontlooksick.com

Over all these years I've discovered that rest and exercise replenish my spoons. I also found out that the healthier I eat the better I feel. In that vein I tried the No Starch Diet. I'm not sure I believe the premise but I figured it's just food it's not going to hurt to try it. Well when your number one vice is breads and cake it does hurt a little bit. Okay, it hurts a LOT. I learned some things the summer I tried it, however.  The number one thing I learned was that I did feel better when I decreased my starch intake.

Mostly, for me, I have problems with complex sugars. I already knew that Lactose and High Fructose Corn Syrup do not agree with me. I have a major intolerance to both. With the No Starch Diet I did a lot of investigating and found out that starch is just a complex sugar similar to the others. Sadly during my investigation I also discovered that most of the foods I eat are starchy. Not just the obvious ones like my love-love relationship with potato chips but also the ones I thought were somewhat healthy, like my cashews, the light green just turned yellow days of the bananas, and even some of my favorite "vegetables" like corn. I did it though. For one summer I gave up starchy foods. I gave up breads, potatoes, rice, pasta, cashews, and even my beloved Sweet Corn. To do this I had to double check all the food labels for any form of starch. Did you know that some lunch meats have modified food starch in the ingredients? Why does turkey have ingredients other than turkey?

If you ever decide to try the No Starch Diet might I suggest you try it during the summer. I lucked out, thinking summer would be easier because my schedule is more flexible. As it turns out summer is the time to do it because of the fresh vegetables available. I ended up cooking things I had never cooked before the diet. I made soups and salads. I grilled up vegetables and made various side dishes. Cooked up meats in the crockpot and generally had myself a time. A starch free good time. In my area, fresh vegetables are almost impossible to find during the winter but in the summer Farmer's Markets sprout up like spring flowers. I spent every Saturday finding new fresh fruits and vegetables to try during the week. All during that one summer.

You'll notice, however, this is all about that ONE summer. I personally can't maintain that diet. No way. No how! I am such an immediate gratification girl. First off I have not met a cake I do not like. Secondly, eating the cake in the immediate wins over the thought that I might feel better tomorrow if I don't eat the cake today. Also a year or so later when my TNFa blocker stopped working, I discovered that no diet of any kind was making enough difference that I could go off of medicine. That's when I figured, forget it I'm eating the cake! I did make some permanent changes after that summer. I kept the vegetables, the label reading, and the healthy all natural food choices. I still don't believe that anything good comes from modified food starch, I don't buy processed meats with long lists of ingredients, and making meals myself helps me to make better food choices.

All that being said.... I mostly wrote this trying to talk myself out of having egg rolls for dinner. The egg rolls won out. Guess I'll use some of tomorrow's spoons doing the dishes so I can cook up a better food choice. First, I literately need to clean some spoons.

Emotional Roller Coaster

Today has been an emotional roller coaster.  I think I'm having one of those please remind yourself what you can control kind of days. I seem to think I'm in charge of something and that my stressing and worrying will make a difference. I woke up this morning in a total cranky, crabby funk. I couldn't move for the heavy cloud I was carrying around. I put some music on and actually felt better by the time I hit the shower.  For someone with no musical talent I live and breathe music. I celebrate to it, cry with it, dance to it, love to it, and sing with music. I find that I can completely change my mood with the right song. There are songs in my collection that take me directly back to a specific mood. There are good songs I can't play because of the feelings attached to it and really bad songs I jam to because of the memories they bring.  So today, a little gospel got me out of bed and remembering to be thankful for what I have. I ended up having a fairly productive day, writing, meetings and vet appointments.

Zena

Beside the stressors that come up when you work as a state employee for a state in the midst of a huge budget crisis, my kitty warrior princess seems to be sick.  After I spent the last few days nearly worrying myself sick it turns out to be nothing a few days on antibiotics won't clear up. That being said, I spent the last half of the day sitting in a vet's office listening, waiting and worrying. I can't control the state budget. I can't control the cat's health (apparently). I can't even control that man who was in the vet's office before me asking the same question three times - although I tell you I really wanted to get back that half an hour we all spent waiting for him to process what the vet-tech said to him (three times). What can I control? Not half as much as I would like but I sure as heck can control what song comes up next on my iPod!

This is fabulous. Next time I'm having one of these days I'm pulling up this website. How to Accept The things We Cannot Change