Well, Do You?

Do you ever feel like you are running as fast as the wind, but you can’t seem to move more than a few steps? That you are stuck in quick sand and you are sinking more and more with each step you take?

Do you ever feel like you are all alone, even though your house is full of people?  Even though you have friends who love you, family who care, but no matter how much they do in fact care, they wont ever truly know?

Do you ever feel like you are on the outside looking in on your life, watching it like it is a nightmare?  Like there is no way THIS is your life?

Do you ever wonder what life would be like had you not gotten sick?

Do you ever think you deserve to be sick?  But then think about all those innocent people who get sick, like babies, and infants, and know that they didn’t deserve their fate, so how could you?

Do you ever want to just scream as loud and for as long as you want in hopes that someone, anyone will hear the misery in your voice and be compelled to make things better?

Do you ever let yourself imagine what it would be like to have a cure?

Do you ever wonder if the medical community really cares, or if they are just like everyone else, just doing their jobs so they can get a paycheck?

Do you ever just want to give up?  Because no matter how hard we try, it hurts, we hurt, and nothing is ever going to make the hurt go away?

Do you ever wonder what your life would be like if you didn’t have to worry about things like pain, stiffness, fatigue, doctors appointments, injections, medications, and illness?

Do you ever hope that you are ENOUGH?  That somehow, your broken body and your hurt spirit are enough to those around you?

Do you ever wish on a star?  Make wishes that you would never repeat out loud because they are so real, and you want them so bad that no one can hear them other than the stars?

Do you ever just want to get in bed and sleep all day long??  And maybe all day tomorrow too?  But then feel bad about it for being lazy?

Do you ever wonder why people in this world are so cruel?  Why it seems like evil seeps into almost every person alive, and why most of them dont even bother to hide it?

DO you ever want to quit all your responsibilities and go and do whatever you want, because by the time you don’t have responsibilities anymore you may not get the chance to do what you want?

Do you ever just cry?  Cry and weep so loud that your body shakes, your nose is a faucet, and your eyes are red and puffy because it makes you feel better?

Do you ever wonder why this world is so harsh, and why life is so unfair?

Do you ever pray to God?  Ask Him to take away all the pain and suffering of everyone in this world, because you know how much it hurts and you don’t want anyone else to hurt that bad?

Well, do you?

Sleep Is Overrated

I am tired.  So tired.  In the morning, at noon, around dinnertime, and at night. I am even tired in between all those times.  This type of exhaustion I live with is called Chronic Fatigue, and it is a symptom of the disease I am afflicted with, called Ankylosing Spondylitis.  Let me elaborate on that, I am not afflicted with AS.  I am consumed by it.  I am overwhelmed by it.  Sometimes I am defined by it.  Other people may wonder if this kind of fatigue is even possible…that I may be exaggerating.   I wish I was…that it was all just a nightmare, or imagined.  Maybe one day I will wake up and realize I was the victim of some cruel joke, and everything, the pain, the stiffness, and the tiredness are all gone.  But until that day comes, this is my life.

Have you ever had the flu?  Not the 24 hour kind..but the kind that lasts for a week or longer…the kind where you can’t drag yourself out of bed, even if you want to. The only time you do manage to drag yourself out of bed is when you have to rush to the bathroom for unmentionable things to come out of your mouth, and that other not so nice body part.  After you are able to climb back into bed after visiting the porcelain gods, your body is so stiff, so broken that you are already asleep before your body has relaxed.  Then you manage to sleep, but even the sleep is uncomfortable, it is painful.  Every body part aches, the muscles twitch from the spasms and you even get some numbing and tingling in your extremities.  By the third day of this assault on your body, you come to the point that you wish it would end, and you don’t care how, even if it means YOU end with it.  Misery is the only way to describe it…pure misery.  That is what my life is like.  Every single day, 24/7, with no end in sight.  How does your mind even wrap around that?  How do you continue on knowing this is your future?  The icing on the cake is that when you have the flu, everyone knows you have it, if you are lucky you have a mom or significant other who will make you homemade chicken noodle soup, and hold your hair back while you are paying your porcelain dues.  However, when you have AS, you are invisible.  No one can see the pain, stiffness or fatigue.  In order for others to know about what I am feeling, I have to vocalize how I feel.  If I do tell those around me just how horrible I feel, I then get labeled as a complainer or hypochondriac.  No one wants those titles.

So how do I balance a normal life when I am anything but normal?  The answer is, I simply do not know.  I would love to say that I am strong and I can ignore the pain and the fatigue and push it aside long enough for me to simply do the things I grew up wishing for.  Sadly, it is hard, and some thing, no, a LOT of things have to give.  This is the life of a person with AS.  We are professional sufferers.  I have learned that not everything is going to get done, not everyone is going to understand or help, and I will NEVER get used to it.  I will, however, fight this beast tooth and nail, I will show my body who is boss, and on some days I will indulge in a four hour-nap without feeling guilty.  

2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 21,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 8 sold-out performances for that many people to see it.

Click here to see the complete report.

What Makes The World Go Round?

What makes everyone tick?  What motivates each person to do what they do, to say what they say, to act the way they act??  I think it is safe to say it is different for each person and for each circumstance.  I cannot predict how anyone else will act, or feel, but I can share with you how I act and how I feel.  I can tell you what motivates me to do.

In life I have always been feisty, a go getter, but also someone who was fun to be around, who loved to learn about new things, different cultures, who loved to debate, and have others swayed to my point of view, and to have others sway me with convincing arguments.  I have always known what I wanted in life.  A man by my side that loved me and that I loved.  Children to raise and care for, a rewarding job.  When I was diagnosed with AS I didn’t change, but the plan of my life did.  Suddenly a dilemma was placed in front of me.  I was diagnosed with this disabling disease that had a funny name, and that no one knew anything about.  I thought it was really unfair that not only was I striken down with a chronic illness at the age of 29, but it was an illness that was cruel, and unknown.  I knew this was a problem, and I thought I could help play a role in fixing it.  I thought that if I felt alone with this disease, others with it must also feel alone, and why shouldn’t I do something about it?  SO I did what I thought I could.  I gathered up as many ASers as I could find, I befriended them, and then I created  a group for them to visit on Facebook.  The goal was to give everyone with this disease a place to call home, a place where new faces could show up, where a family could form, where we could pour efforts into raising awareness.  Never in my wildest imagination would I have thought that group would now have over 4000 members in it.  Nor did I think that I would have more than 500 friends with AS on Facebook, who sometimes look to me for guidance, and help.  However, with this newfound AS family has come some problems.

As I said in the beginning, when I see a problem, I try to fix it.  I know I cannot fix every wrong, every sin, but in my life I can try to fix the ones I have some control over.  So, when I see something I KNOW is not right, I do what ever I can to get it fixed.  Many times this means a news-reporter has done a story on AS, but reported misleading or flat-out false “facts” about this disease.  Since I consider myself an AS activist, I feel it is my duty to work to get falsities of my disease changed…who else is going to do it?  (And if there are others doing it, good, there is power in numbers!)  If I see a fellow friend and AS sufferer is hurting, i try to lend them my ear, shoulder, whatever I can to help them.  I hated feeling so alone, so isolated in my pain and illness.  However, lately my actions have been judged, and wrongly I might add.  I am not a self-centered person.  I did not create ASAP for myself…having said that, I am proud of it.  I don’t need constant praise, nor do I need people to put me on a pedastal…there is no reason for that.  All i need is friends.  Real friends, people who will pray for me, people who will love me when I am at my best, but who will stand next to me and help me when I am at my worst as well.  I need friends that will laugh and cry with me.  I need those that will take my secrets to their grave, and who will honor my right to stand up for and fight for what I believe is right.

I thought I had many friends that fit this bill.  Lately though, I am not so sure.  Lately, there have been rumors flying about me.  Instead of my “friends” coming to me and asking me about them, they have either un friended me, or passed judgements on me without talking to me about it at all.  If someone gossiped about you, wouldn’t you like the opportunity to defend yourself?  Lately there have been a few times when I have been attacked in public.  I took care of myself, but it was hard to hold my tongue when I was being unfairly treated.  I did not once ask any of my “friends” to come to my rescue, to defend me, or to take my side.  Yet those same “friends” have shamed me and said I had no right to defend myself publicly, no right to state my side of the coin.  Even when others had their concerns too.  I have even had “friends” tell me they are sick of my woe is me attitude as of late, and to let things slide off my back.  What happened to “do what you need to do, we will be here to help.”  What I am trying to say is, you do not have to fight my fights with me, you do not have to do anything I do. But please respect that I HAVE to do what I FEEL is right.  That is just the way I am.  I cannot stand high school drama, gossip, rumors, or anything of the like, yet lately I have been the center of them all.  I have been trying to leave Facebook for this very reason.  However, if I leave, ASAP disappears too.

So, I am telling this to you because I will not disappoint over 4000 people who live a life full of hurt already.  Instead I will take everything said publicly, privately, to me, to others with a grain of salt.  I will tell you all to be very careful with what you think is the truth, unless you asked me personally, and if you do ask me, know that I will tell you the TRUTH.  I do NEED my friends.  I do NEED my AS family.  But I will not let anyone stab me in the back, I will not let anyone treat me poorly because of what someone else said.  Ask me before you jump to conclusions.  If after I explain myself you still are upset, then do as you please.  I have given my all to this community since December 2009.  Every single day devoted to the AS community.  Today I wanted to give it all up, because it hurts to see so many leave me with out so much as a goodbye.  It hurts to know that the same people I would fight for could not care less, and are the same ones spreading lies.  My mama taught me to do unto others as I would like them to do unto me…that is how I try to live my life.  Now, I am NOT perfect, not even close.  But I do try my hardest to be a GOOD person.  To fight for what is RIGHT.  To LOVE to my fullest capabilities.  Sometimes I will be nothing but happy, other times I will be sad.  Still others I will be mad, or just plain tired.  You see, I am a human being. I have feelings.  So if I am doing something or saying something that troubles you, tell me, or ignore me.  I will NOT stop being me however.  So please do not ask me to stop caring, or to change.  This life is hard enough simply by having to live with AS.  I just wish the rest could be easy, and worthwhile.  Is that too much to ask?

On a Personal Note…..to the AS community.

I saw some comments on GASP and I wanted to address them. First of all, none of this is about ego, at least not on my end. I saw mistakes in that article and saw an opportunity to have a healthy and much needed discussion about important issues in the AS community. When I was “attacked” whether directly or not I defended myself. I have never asked anyone in this community to take any sides, to defend me or even to like me. I do what I do because I want things to change for ASers; that has been my reason from day one. If I start a discussion wanting to change things, I cannot help it if someone attacks me publicly all I can do is defend myself and my actions. My goals are not to make anyone uncomfortable, nor do I ask anyone to take sides. I have threatened to leave facebook, and hand ASAP over to someone else because I cannot stand being attacked or treated like I am an enemy of this community. Before a certain person arrived on the scene there was no disconnect, there was no discontent. Sadly there is now. When I post in private groups and on my wall that I am thinking of leaving that I am hurting it is because I need a shoulder, I need advice. It is because I am a human being with feelings and it hurts to be betrayed. It hurts to know that something I started with pure intentions has now turned into something scarred. Before May there was not one single bad thing in the AS community. Everyone got along, everyone worked as a team towards the same goal. That all changed after May, and since then I have felt abandoned, alone, and like I am an enemy to those I consider friends. I have not come forth with the events that happened because I do not want to divide the community any more than it is already. So instead I focus on making wrongs right, raising funds and awareness and supporting those with the disease. Which is why I posted on that article. It is NOT right for anyone to still refer to AS as a mans disease, and I will fight to change that even if it means I lose friends. Because if that causes me to lose friends then they were not friends to begin with. To be honest I am surprised at how harsh certain friends words have been. In the AS community any and ALL work towards awareness is GOOD. All of it. We all fight for the same goal. Which means we are all on the same team. No one has to take sides, because we are all on the same side. Fight AS. Period. I would hope that if anyone else were bullied or attacked anywhere, facebook, internet, real life, that you would defend yourself. And as a friend I would come to your aid. But that is besides the point. When my posts were taken the wrong way I defended myself. I don’t see why me defending myself makes anyone feel like they must take sides. I also don’t understand why anyone thinks I should cower or ignore hurtful words and accusations. But that is their right. Just as it is my right to defend myself. If I had poor/bad/evil intentions or if I was working with a big ego, back in May I would have gone public with all that happened, then begged all my friends to take my side and to un friend my “enemy”. But I didn’t do that. I havent asked a single person to not support the other person, or unfriend her, not even my best friend, because the other person is on my team. She is fighting for AS too. And I would never ever tell another who they can or can’t be friends with. So I would like to ask everyone involved to take a moment to listen to what I am trying to say, and know that I could have acted and done things very differently, even to the point of jeopardizing certain people. But I did not. And I will not. However, if I am talked down to, or attacked, I will do my best to defend myself. To all my friends and the AS community. I am just a person. One person who is determined to make a difference in the AS world. I do not need acknowledgment, not even support. But I am thankful for it when it is freely given. I know not every one of you will agree with me 100% of the time. I will probably not agree with you 100% of the time, but that is what makes us individuals. I will not apologize for being me, and I can tell you I am stubborn, determined, passionate, scared, and ready to fight to make a difference. Even if it means I do it alone. And while it hurts to have someone tell me “Shame on you” I can take it. I don’t know why I have been shamed, but it doesn’t matter. All that matters is that I stay true to myself and those I love, and that I do all in my power to help the AS community. I hope you all understand this, as I respect you all, admire you all and am proud to call you my friends. I have NEVER asked anyone to chose me over another, and I never will. If you have a problem with me, please come to me. If you are mad at me, please come to me. If you have a question, or do not understand why I did something or why I said something, then come to me. I am nothing if I am not real. May you have a wonderful weekend. Thank you for your time, Kelly

Bump in the road

I applied for a teaching position, and fell in love with it before it became mine.  Don’t do that to yourself, it really is bad for self-preservation.  I did not get the job, but was assured I was the second choice.  Does it matter that I told myself that if I was meant to work again then I would for sure be offered this job?  And since I wasnt offered this job then that must mean I am not meant to work again?  Yeah that’s doing a number on my brain, and my heart.  It hurts, I wont lie, I really really wanted that job.  Even I was questioning myself.  Could I really do the best job in that position?  Now that I know I will never have that job I know that the answer to that question is YES.  If I scream it at the top of my lungs will they change their minds?  YES I CAN DO THE BEST JOB!!!!!

 

I didn’t think it would matter that I found my confidence after my chances had been turned to a big fat zero.  I know for sure I want to teach again.  I need to teach again.  I need it to keep me busy, so I can stay active.  So, I will continue to look for that perfect position, you know the one in which I get hired and I am not choice number two, but first choice.  Thank you to everyone who prayed and crossed their fingers and even glued wings on a couple pigs.  Its not you its me..I dont want you all to think you didn’t do a great job of wishing for me, you did really.  Thank you so much for believing in me when no one else did.  For now I will continue to play the role of Patient Activist and hope another position opens up.  And if one doesn’t?  Well, whats meant to be is, isn’t it?

Divorce Wanted

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ankylosing spondylitis, Arthritis, Conditions and Diseases, Divorce, Health, marriage, Musculoskeletal Disorders, Relationships

That’s right I want a divorce.  I never asked for a relationship like this.  I have only wanted happiness and good times.  I never asked to be punished like this, to have to suffer because of someone or something else.  Yet here I am in the prime of my life constantly fighting to be me.  I want a divorce from my disease, Ankylosing Spondylitis.  I know I will always have it, I will never be cured of this disease, but do you think I might be able to cut ties, to claim my body as my own and live again?

It is so hard waking up each day in physical pain.  Each and every day if I am lucky enough to sleep, my first waking breath is wasted on wincing, ouching or muffled cries from the stiffness and pain that attacked under the cover of night.  It took me a while to convince my heart that starting my day on the wrong foot may not be so bad.  At least it meant the day could only get better….so I want a divorce from my disease.  I have pledged to wake each day acknowledging this wretched illness, then to bid it ado and make the most of it.  When that realization hit another came with it; I wanted to teach again. I was an elementary school teacher up until I became pregnant with my daughter in 2005.  Then, when she was 15 months old my son was born, and when he turned a year old I was diagnosed with AS.  I never imagined I would go back, or that I even could.  I can’t imagine what it would be like to have so many important responsibilities, to have to get out of bed by the alarm, and not be able to return until the sun has set again.  Not when I have two kids, and AS.  Let me rephrase that, not when I have AS.  Can I do it?  Am I strong enough?

The answers to those questions aren’t easy ones.  By deciding to apply and interview for full-time teaching positions I choose divorce.  I am going to be me again, no matter what the cost.  If I am lucky enough to get a job, I will sign the contract and be committed heart and soul to teaching again.  To be honest, the person who will learn the most is me.  By going back to work and leaving my disease behind I will learn what I am made of, how strong I really am, what my character is and just how strong my fused backbone is.  I will not hide my disease, just like I wouldn’t hide a relationship.  I will still raise awareness, and stand tall.  I think I will be standing even taller.  Just knowing there is a possibility for me to be standing in my own classroom in front of my own students again, while my own children are merely doors down in their own classrooms, my heart will swell bigger than it has in years.  Pride and self-worth do good things for us, and for me it may just be the best medication yet.

10 Acts of Kindness For A Sick Friend

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Do you have a friend who suffers with an illness?  Have you ever wondered what you can do to help?  Well, here are ten ideas to start with, and I promise you will be well on your way to becoming BFF’s if you do any of the following.  But that’s what friends and family are for, right?

1. Ask us how we are, and truly listen to the answer like you care.   

2. Make a meal for us to put in the freezer, or bring over take out when you know the day has been rough physically.

3. Offer to pick up items at the store when you know you will already be there. A trip to the store can be enough to exhaust a person with a chronic condition, so going for them would be greatly appreciated.

4. Introduce us to new people, potential friends who we can trust. Being sick can be isolating and lonely.

5. Go on a nightly walk with your friend. Give them the opportunity to get some fresh air, and some much needed exercise.

6. Entertain the Kids so mom or dad can have a break. Even showers can be daunting to those with a chronic illness, so offer to babysit while they soak the days pains away.

7. Offer a massage, or better yet, go with your friend and get a double massage at the spa or massage school. A good massage can allow some patients to cut back on  medications for a while, which is a great excuse for needing one!

8. Give them a ride.  Driving can sometimes be difficult with medications, fatigue and feeling ill.  So be a chauffeur for a few hours, and make sure your friend is safe.

9. Be willing to go to dr appointments to act as an advocate, or to hold hands during chemotherapy infusions. Many need help giving themselves injections. If you aren’t squeamish, offer to do the deed for them.

10. Always make sure you have a shoulder for others to cry on, an ear to hear their gripes, or simply being there for support that is unconditional. Being sick can make the most popular girl feel like no one understands.

Lonely?

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Do you ever feel alone? It is pretty impressive to think that anyone could feel isolated in a world of almost 7 billion people.  Yet, somehow this disease has a way of assuring me that I have been abandoned by society. I often feel like I am the only person in this world having to live in this terrible pain, dealing with unrelenting fatigue, and then also having to live a regular life, having to hold up the appearance that nothing is wrong, and everything is right in the world.  Sadly, my life isn’t always pretty, in fact it rarely is the piece of cake others would like you to believe.

My brain tells me I am not as desolate as I feel sometimes, and in many ways I have proof that I do in fact have companions.  My husband of 13 years is the first person that comes to mind, and then my sweet kiddos….however, I can’t let my kids see my pain, I could never do that to them.  What kind of wife would I be if I confided in my husband how alone I truly feel?  He is so amazing, he takes such good care of me, his entire life is devoted to me.  Yet, this loneliness still overwhelms, but why??  How can I be surrounded by people that love me and still be scared?  This disease has taken so much from me, but most of all it has taken away my security.  I have said this before, but I will say it again, unless you live with Spondylitis, you will never completely understand the punishment that it is to those of us afflicted.  My body doesn’t just hurt, my soul aches to be me again.  I want to be able to make plans at a moments notice and not have to worry about how I might feel.  I want to be able to take my kids to the park, and not worry about how the heat will affect me.  I want to be able to hang out with my friends, to gossip and have a drink.  None of those things can happen anymore, because I cannot depend on my own body.  This body has become a holding cell for my soul, its been given a life sentence.  I will never be free from its confines.  So how does a person escape their own body?  And if you are sentenced to a body that doesn’t work and only causes pain, how do you relate to others enough so that you don’t become some desolate island looking for inhabitants?

I think the answer lies within me.  If I ever want to be free, I need to have hope.  Hope that I can control my body enough to be able to live.  I might need to plan ahead, but at least I can make those plans with enough preparation.  I might not know any other Spondy’s in real life, but I know a whole lot online, and they fill me with warmth, encouragement and optimism.  I have realized that for every negative there are ten positives…its all a matter of how you look at it.  We are all united, in our passions and dreams, we are all hurting but hopeful.  So if you ever feel like I feel, alone and scared, just look around you and remember how much power you have inside.  Within you lies the key to happiness.  All you have to do to find your happiness is to use your mind over matter.  Think positive, and be hopeful.

Reality Check

I have been in pain for almost 5 years now…and I am sad to report that it hasn’t gotten any easier.  This pain is so well hidden within me, that I feel like I must tell my husband over and over that I do indeed hurt each day.  He kindly reminds me that he knows, and I don’t have to tell him 500 times how much my back hurts.  Lucky for me he puts up with my complaints.  For some reason it makes me feel better to voice how I feel physically.  I mean, no one can see my pain…it is every where, in every joint, making me feel like I am 100 years old when in fact I am 32.  If you have AS I am sure you would be able to notice the signs, my hunched shoulders, that hurt too bad to force into good posture, or my hands that automatically form fists because of how much they hurt, or even the way I walk, shuffling my feet to keep myself from falling.  But if you are a healthy person you would have no reason to believe that I am really crumbling from the inside out.  You might in fact call me a liar, because I am pretty good at holding up the illusion that I am normal.  The question then becomes, why would I want to PRETEND to be anyone other than who I really am: a patient suffering with ankylosing spondylitis.

This is not the best life, but it is mine, and I will hold my head high and always promise to be me.  I wont smile any fake smiles, or shove sunshine up your ass by way of false happiness.  No, I prefer to be honest, and real.  It makes me want to barf when I see people faking happiness…I am all for being positive and trying to look at the bright side of things, but to go as far as to lie and hide the real you, forget about it.  This disease is no where on the happy trail….no it veers way off the side of a mountain down a 2000 ft drop off.  Many aspects of it are not fun, or easy, or even pleasant to talk about.  But then again, who ever said life was easy?  It is safe to say that I will never ever lie about how I feel, nor will I ever sugar coat things for anyone.  If you want to know how I am, be prepared for the truth and nothing but the truth.

The reasons for my brutal honesty are pretty clear.  When things are bad, yeah they are downright awful.  But when things are good, I am able to appreciate them even more than those who fake their joy all the time.  Most my life I have been the poster child for the slogan”life’s not fair”.  I lost my mother when I was 21, she was 45.  I was married at the time, and after that our lives seemed to spiral out of control.  My husband lost his grandmother, then my grandmother passed, a month later.  Then I gave birth to our first child after having to do in vitro fertilization to get pregnant due to unexplained infertility.  The day we brought our daughter home from the NICU, my husband got the call that his father had died in his sleep, at the age of 55.  He never even knew that his first granddaughter had been born. Sadly, just two years later my husbands mother also passed, she was also 55.  The same year my husband became an orphan, I was diagnosed with AS.  Just when we thought our lives couldn’t get any worse my body decided to become a prison, I am trapped in it forever, and it likes to torture me.  So I have learned how to enjoy the little things in life, to cherish the happy times.  I know who I am, I know my mission in life, I have a purpose and a plan, all because of AS.  I am not happy to be sick, but I am better than before.  I am me, real and honest.