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.