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.

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.

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!

Today's Lesson Brought To You By Life!

Today's lesson is for me. Don't do other people's work for them and stay out of their business if you don't want to be invited into their world.

Okay, it's probably safe to say I'm a bit of a busy body. I don't mean to be just two things...1.) I hate watching people flounder when I know the answer and 2.) I hate not knowing the answers. Ugh! I will tell you this, however, from a disability perspective my colleagues never say oh that poor woman she has a chronic illness - poo poo. They are too busy passing their work off on me instead of doing it themselves! So today I helped with the company brochures, provided feedback to a student who isn't mine and I didn't even speak to (just spoke to the person who was SUPPOSED to talk to him) and put time in on a political campaign. Okay, that isn't fair I did agree to do that last one but please know none of these are my job. I do not get paid or promoted or even thanked for any of the above. Now I'm stressed and achy and whiny. So what's my lesson. Mind Your Business, girl!

I'm mixing my religions I know but one of the things that stand out for me about this day are the Taoism quote I sent to a friend. I admittedly was clowning him 'cause that's what I do, but I probably could stand to read and remember some of Taoism at the end of this day.

Water is fluid, soft, and yielding. But water will wear away rock, which is rigid and cannot yield. As a rule, whatever is fluid, soft, and yielding will overcome whatever is rigid and hard. This is another paradox: what is soft is strong.

So instead of sending a scathing email to the co-worker who probably forwarded my email instead of actually talking to HIS student....

Instead of getting into an argument with the chick about the print on the brochures (which really is hard to read)....

and

Instead of even telling you what I really think about the rest of those yahoos, I'm going to remember that none of this was even my business until I made it so. I'm going to be soft and yielding. Okay, maybe I'll just settle for being a little less of a busy body.

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!!
 

Power and Privilege

I talked to my students today about power and privilege. While they were quick to condemn the wealthy for not being aware of their privileges, my students struggled for an hour and a half to list their own privileges. And even then they listed privileges as they felt they were slighted out of by the truly privileged.

It's a tough task to know what privileges are handed to you based on your gender, social economic status, sexual orientation, religion, able-body, or other identity statuses. We all have them and half of us think we earned them as "rights" not privileges.  From the little things you don't think about like being able to watch a movie with characters that look similar to you or being able to kiss your husband in public. To the much larger things you might realize like being able to sleep soundly in a warm bed, in a warm house, without any real fear of a bomb hitting your house. There are people in this world that worked just as hard, saved just as much, and did all the "right" things who aren't enjoying your privileges.

One of our readings for today was Peggy McIntosh's paper on White Privilege: Unpacking the Invisible Knapsack. It's a very interesting read. It can be found here: White Privilege: Unpacking the Invisible Knapsack

Another interesting read is by Linda Black and David Stone called "Expanding the Definition of Privilege: The Concept of Social Privilege". If you can get your hands on the article it's in the Journal of Multicultural Counseling and Development, volume 33. Black and Stone discuss the idea that we all have some privileges and that these privileges are based on our many social identities (gender, sexual orientation, religion, etc.).

A very interesting and long night!

Affordable Health Care

The White House blog  has published information on the Affordable Care Act today. This week marks the first year anniversary of this act. I guess that means people have been fighting against the act itself for a little over a year.

http://www.whitehouse.gov/blog/2011/03/21/better-benefits-better-health-small-businesses

I know everyone has their own opinion on the administration (we always do). And this act does require an out of pocket expense for someone....or some businesses as the case may be. I can’t be against it though, I have a pre-existing condition.

I currently have health care. I have a pretty good plan. Oh, hell, I have a great plan I work for the state. My plan is so great it pays for doctor’s visits, medication, preventative care, emergency care, surgeries, etc., etc. I even have choices when picking a plan. I can do a strict HMO, a PPO or one of those ones where you pay less up front because you are the middle man working out your own reimbursements. I went with the one that was most affordable and had the most flexibility (but I pay for a middle man thank you very much). I travel at least a couple of times per year and I didn’t want a hassle if I went off network to a doctor in say....I don’t know...Nevada. ...and honestly, I never know what flare up might happen when.

My personal flexibility ends with the plan and it’s coverage.  I do LOVE my insurance coverage. I really do. But...and yes there is a but... I worry about the fact that I have to LOVE my job as well. Somedays my job comes in with a small, teeny, tiny l-o-v-e. This poses a problem.

A little bit about me....I have a graduate degree. A terminal degree, highest I can get in my field. Did all I could do to prepare myself to be a good upstanding taxpaying citizen.  I got my degree in a field that gave me options. I went back to school several years after being diagnosed with an autoimmune disorder so I knew I needed options - because honestly I LIKE working and figured on doing it until retirement age if health permits. With options health can permit a whole lot I presume in my field. But here’s the kicker....I’m restricted if insurance companies are allowed to hold onto those pre-existing conditions standards. Very restricted. I can’t go months without insurance. I have medications where out of pocket costs would be about the same as a car note. A big, luxury car note!

Last summer I had an interesting conversation with my cousin when I was out in Vegas. She works for herself. I think I had told her about a friend of mine who also lives out there and works for himself. My cousin’s father (my Uncle - of course) ALSO has his own business and instilled that entrepreneurial spirit into his kids. So over coffee, knowing that my degree prepares me for private practice (among my options), my cousin looks me in the eyes and says “so why don’t you start your own private practice”. I looked her dead in the eyes and said in reply, “because I need health insurance”.

This video is from the White House, so I realize it is slanted a bit... but it speaks to me....If I were self employed could I survive? If I just decided I was done living inland and moved to the coast, could I? If offered a job some where fabulous making a ton of cash, would they hire me after I spent 30 minutes going over their health plan to make sure I’d be covered from day one? 

Jumping Right In!

So I’m jumping right into this online blogging thing. I have a facebook page, a couple of twitter accounts (don’t even ask) but for some reason I have totally avoided blogging. It seems like such a commitment. But I’m inspired so here I go......

I hope you come along with me on my journey while I try to figure out how to make this work for me. How to get the ideas out of my head and into the real world. How to represent myself and my friends in such a light that others may be inspired as well. 

Come on in! The water is fine.