Body By Crohn's

          It's been almost two years since I first did a photo shoot entitled "Body Image" with photos taken by Anthony Lanza of Lanza Photography and posted it here for the world to see.  It got a lot of feedback.  Some positive, some negative, but mostly positive.  It has been a long and hard two years since then.  Many things have changed, even more pieces of me are gone, and the journey is no where near at an end.  I think this latest shoot, a collaboration with Jake Rains of Jake Rains Photography entitled "Body by Crohn's" shows me a little worse for wear.  I believe that to be accurate.  I've been fighting hard for over three years to survive what this disease does.  I have a long way to go and I know there are many out there who have a fight even harder than mine.  This disease takes not only a physical toll, but an emotional and psychological one as well.  I've been to the darkest side of myself many times, but have always been able to return, however each journey there and back chips away at your very existence.  I hope that these pictures have captured that and can speak to others that even the strongest among us carry battle scars and they are a heavy burden.  Together we can share the load.

Girl, Interrupted

     

       Well, I'm back.  At least for this post.  I can never say that I'll keep a regular schedule with this blog.  With this disease you never know what the future holds.  Anyway, it has been a hell of a year.  2014 was the hardest year of my life with all the hospitalizations, setbacks, and losing my Dad.  2015 has been a little better, but that is a pretty easy feat to accomplish by comparison.  I finally decided to bite the bullet and do the surgery they have suggested for the past 2 1/2 years.  They wanted to take my entire colon and put in a permanent ostomy, but I'm too stubborn for that shit.  I let them take a few feet and put in a temporary ostomy.  I would be lying if I said it's been a breeze and agree with so many who say it was the best thing that they ever did.  I admit I struggle with it every day.  I'm not looking to have a pity party, but when you are already close to the edge it doesn't take much to push you over into the abyss.  I'm not completely hopeless and depressed so don't start calling 1-800 numbers, it's just been hard.

         I find myself angry a lot, and for no specific reason.  I try not to be, especially around my loved ones, but it still creeps out.  And don't get me wrong, i'm a tough little bitch that doesn't back down easy and I also know how to stay positive even when things are anything but, however, no one can pull that off 24/7.  No one.  What i'm getting at is, be mad, be sad, be however you feel.  It's ok.  We don't always have to be that shining example of mind over matter.  We are still human after all.  I'm trying.  I'm trying hard to get back but it is a long road and there are many dangers.  I hope to see you all at journey's end.

         In the meantime, I will do my best to still be an advocate and voice for those that do not have one.  This past week, December 1-7 was Crohn's and Colitis Awareness week.  I was able to get the local media out to my house to do a story.  So far I have had a lot of positive feedback about it.  I'll put the link below if you have not seen it yet.  Until next time (whenever that is), keep fighting Rangers.




Click here for news story

Gone Girl

          I've put off writing this for about as long as I can. I have been avoiding you on purpose.  I've been gone. I didn't want to tell you, and frankly, you people have been about the last thing on my mind the past few weeks.  Do not take this news as heartless or cold.  My mind has been fixed elsewhere and that elsewhere has flung me to the pits of human despair. My father died fourteen days ago. Of cancer. My father died of cancer and I'm pretty fucking un-ok with that.

          This is the part where I'm supposed to go into detail about what he meant to me and all that he did for me, but those sentiments would fill a fucking epic novel and are too personal (if there is such a thing) for a sloppily and infrequently kept blog by a frustrated, chronic-disease riddled English major with a penchant for ten dollar words and melodramatics. I apologize for the literary vomit being spewed your way. This wasn't your fault. In fact, that's what's so frustrating. There is no one to blame. No one I can point a finger at and say, hey you motherfucker. How do you punch cancer in the balls? This frustration has been felt with my own health troubles and I can't help but think that there has to be a better way. An easy way. But I don't think there is. I don't need to be ok with this. No one has to be ok with our loved ones suffering and dying of these diseases. IT IS NOT OK.

Don't cope. Don't find closure. Fight back. Tell people it's not ok. Fight the cause, not the symptom.

Ranger, out.

The Glass Has Water In It

       

          Things have been going..........better. I've kicked my pain meds, got a little part-time job, and actually have some energy. It's been a hard transition though. When sick is your normal, normality is abnormal. My body is coping, but the mind takes longer to catch up.
          A Crohn's patient should always stay positive and think positive, but sometimes that's when the rug gets pulled out from underneath you. Yes, I'm feeling better and on the road to health, however I'm not out of the woods yet. It's been only six weeks since my last hospitalization and that isn't the longest stretch I've done between admissions. The fistulas are still open, the abscesses could come back, something worse could pop up. The list of what ifs goes on and on. So what do I do? Ignore what could happen and blast forward full speed ahead? Wallow in the fear of possible maladies and more hospitalizations? It comes down to outlook. What kind of person am I?: glass half full or glass half empty? Right now all I can say is that there is water in the glass. I'm not looking forward and I'm not looking back. Every day that I feel well and have energy I will take advantage.
          Remember that. There are days when we don't know which way is up, how to feel, or how to plan for the future. Just remember that half-full or half-empty, there is water in the glass. Drink it up.

Body Image

         

          Many of you know that this year has been especially rough on me when it comes to my Crohn's Disease.  I've been hospitalized four times already, had a drainage tube for three months, and I currently have at least two fistulas.  I am in pain all of the time and am unable to work.  All of this has taken a toll on my mind and my body.  I have been hinting over the past few months about a Crohn's Disease inspired photo shoot.  Well, I am finally posting it.  I don't know why I waited so long.  Fear?  Maybe.  We can't all pose in bikini's on the Mexican beach.  I wanted to show the reality of Crohn's disease and what it does to your body.  I didn't want to look pretty.  These pictures were taken in January of this year, at the height of my most recent flare.  I was down 20 lbs., had not bathed in 2 days, had no make-up on, and my hair was greasy and unbrushed.  I'm sharing these photos to spread awareness about Crohn's Disease and how it affects those who suffer from it.  I want to thank my husband for encouraging me to do this.  I also want to thank photographer Anthony Lanza for understanding my goal, taking wonderful pictures, and stepping outside his comfort zone.

If you look closely you can see the bruises on my arms from I.V.'s and blood draws

The dark spots on my legs are a symptom of Crohn's.  They last for weeks and make it painful to walk.

At the time I was on about a dozen different medications

I dropped in weight to under 100lbs

I had to use a cheat sheet to remember when and how many of each medication I needed to take.

Scars on my chest from implanted port-a-caths

My biggest supporter.  I would not be able to get through this without my husband, Jeremy.  This photo symbolizes the love and support he gives me in dealing with this disease.

This photo really shows the weight loss.  You could see every vertebrae in my back.

In this photo I tried to convey through my eyes 15 years of sickness.

          Please share these photos with anyone and everyone you know that is affected by or know's someone with Crohn's Disease.  I have bounced back a little from the time that these pictures were taken, but the fight is still on going.  I hope this helps some of you realize that you are not alone and you do not have to be alone.  Share your struggles, share your fight.  It helps you and it helps others.  We are joined in our battle and one day we will win this war.  Keep fighting rangers!!!!!

What Am I Getting Myself Into?

          Well, after two hospitalizations in the last two months, my doctor and I have decided to change my primary medication from Humira to Tysabri.  Some of you may be familiar with this drug, but for those who are not, I shall enlighten you.  This drug has a very scary possible side effect to it that caused it to be taken off of the market a few years ago.  It is now back with stricter prescribing guidelines, but still has that nasty scary possible side-effect.  What is this possible nasty scary side-effect you ask?  Well, it comes in the form of a nasty scary incurable virus that can cause neurological damage and a host of other things.  If you follow this link it will tell you all the nasty sordid details that I don't have the energy to type out. Tysabri Information

          I have been tested for the antibodies of this J-Virus and I do not have them, so I have passed the first hurdle in avoiding this side-effect.  Still, I would be lying if I said that I wasn't scared shitless by this possibility.  We all have to take medications that have crazy side-effects that make us question whether or not the medication itself is actually worth it, but a majority of them come down to a nuisance rather than a life-threatening event.  As I sit here typing this through a pain-med induced haze I can't help but question if it is worth it.  But then I have to think of what the alternative is.  Do I even have an alternative at this point?  Perhaps I'm just psyching myself out.  The first time I had Humira I was a nervous wreck, but that was because I was scared it wasn't going to work.  Hopefully that is all that I'm going through now.  Just some treatment based cold feet.

          We are still waiting on insurance approval for this so all my fretting may be for naught.  Only time will tell.  I'll make sure to keep everyone informed as I strike out on this new medication adventure, and anyone out there who has experience with this med, please feel free to either put my mind at ease or send me screaming into the night.  Besides, with all the shit us Chronies go through on a regular basis, they have to expect us to go a little mad sometimes.  Best wishes, rangers.  Keep on fighting, and pray for my sanity to hold at least through the first infusion.  Peace.

The Society of Sickness

          There are numerous social media sites and groups aimed to help bring together people suffering from Crohn's Disease.  I myself am a member of several of these on Facebook alone.  These groups are meant to bring Crohnies from all over the world to one place where they can share stories, vent, commiserate, and express their joys as well as frustrations in their journey with Crohn's.  As I was perusing Facebook today I saw a young girl post about her happiness and joy with her current Crohn's situation.  She was feeling great and wanted to share it with others so that perhaps that joy would give them something to feel joyful about.  Many understood her post as an attempt to be uplifting to those that may not feel so lifted during difficult times.  Others, however, chastised her for posting what they saw as some kind of lecture from a young girl that hadn't had Crohn's for very long and evidently hadn't suffered enough to be worthy of their respect.This pisses me off.

          I may make enemies by this post, but I really don't give a shit.  When people turn a public forum designed to help people with a similar affliction into a pissing contest, it makes me want to punch my computer screen.  What the hell, people?  It is hard enough to try and get someone who does not have this disease to understand what we are going through, but to attack one of our own for what seemed to be veiled jealousy, is sickening.  Yes, what works for one of us isn't going to work for all of us, but that doesn't mean we should collectively shit all over what HAS worked for one of us. Don't be dismissive and arrogant.  Be happy for God's sake that one of us has found relief.  Too many of us are stuck in what I like to call "The Society of Sickness."  Don't worry, I shall explain.

          Being stuck in The Society of Sickness means that you are consumed by your illness and everything and every action you do is influenced and affected by said illness in a negative way.  It is a vicious cycle that we have all fallen into at least once on our journey with Crohn's and many of us struggle to break free of.  We get sick we feel down, which makes us feel even sicker.  Also, we feel sick for so long, that feeling sick is now our new normal.  This behavior isolates us a human beings and severely robs us of having any kind of quality of life.  These public forums are designed to help break this cycle.  And, that is why it is so important for us to always be encouraging and helpful no matter if a post is positive or negative.

          Yes, we all have to live with Crohn's for, as of the writing of this post, the rest of our lives.  That doesn't mean that Crohn's is our whole life.  I don't know about you, but I have given too much time to this disease already to be giving it any more by sitting around and constantly thinking about how sick I am, or what this disease has done to me, or what it will do to me in the future.  SNAP OUT OF IT.  I know many of you are more sick than I am right now and I'm not saying that you will be cured if you just think happy thoughts, I'm saying that Crohn's does not dictate the outcome of your overall quality of life.  And by quality of life I mean your general outlook on life.  Take pleasure in the simplest of things, anything that can bring a smile to your face.  If you are stuck in a bed somewhere, the internet has a vast plethora of amusing entertainment waiting at your fingertips that I guarantee will make the poopiest of us crack a smile.

          So break free of the Society of Sickness and cheer up godammit.  There are so many beautiful and amazing things in this world, and never forget that you are one of them.  And for fuck's sake, laugh every now and then.  It is the best medicine.