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.