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.

Show me the money!

       

          I have been unemployed for four out of the past six months.  My husband makes a decent living, but money is still very tight.  It has only been in the last month that I have been able to find employment.  I work two part-time jobs and am on the hunt for a third one.  I wouldn't need a third if it weren't for the medical expenses that the insurance company does not cover.  This brings me to my little story.

          I have an outstanding medical bill at the local hospital for some blood tests and iron infusions.  It wasn't my most expensive visit to date, but with my recent unemployment, it was impossible to pay it off in one chunk.  No payment of any kind had been made on it since we received it over a month ago, like I said, money was tight.  Well, last week I got a call from their billing department saying that I needed to pay something on it or they would have to turn it over to collections.  So, thanks to my recent employment, I was able to at least make a small payment towards the overall balance on the account.  I thanked the person on the phone, hung up and went about my day.  (I was at work while all this is happening, fyi)  Not ten minutes later, my cell phone rings.  It is the hospital again.  I figured that maybe they had a few more questions or maybe the debit card over the phone didn't go through.  Nope.  It was the hospital's fundraising department.  They were very hopeful that I would be able to make a donation so that their hospital could keep providing quality healthcare to the community.  She wanted $100.  To some people this may not seem like a lot, but to someone with a chronic medical condition and little in the bank, it is a lot.  I said no.  She then proceeded to ask me for $75. I said no.  $50.  No.  Then she asked if she could put me down for $35 two months from now.  By this time I was trying to control the pressure of my eyeballs so that they would not pop out of my head and get eye juice all over my computer screen.  I wanted to tell this woman off, but I was at work and everyone in the office can hear me speak on the telephone.  I simply said no and hung up.

           I could not believe that they had the balls to contact a patient that has recurring visits and is struggling to pay their very expensive medical bills.  I'm sure the person on the phone had no idea about my account, but I was just pissed.  I've dealt with insurance companies and monthly medical bills that number into the hundreds of thousands of dollars and here is an institution trying to squeeze out the last remaining drops from me.  I just couldn't believe it.  It made me feel embarrassed.  I contacted the hospital via their Facebook page.  The exchange went as follows:

Me: Just writing to tell you that I just got off the phone with one of your representatives and they were asking me to donate money.  In most cases this would not upset me, but in this case it did.  I am a frequent visitor to St. Luke's as I have medical issues that require a lot of attention.  Therefore, I receive bills from you on a regular basis which can be difficult to pay at times.  You might want to make sure not to call your patients that struggle to pay their very expensive medical bills to try and squeeze them for and additional handout.

Them: Please accept a heartfelt apology for the ill-placed call.  You are absolutely right, and I appreciate you bringing this to our attention.  I will pass your comments on to the appropriate hospital leaders to correct.  Thank you for being a loyal St. Lukes patient.

          My point to this story is this:  Stand up for yourselves.  If you do, you will get results.  You are not just a patient or an ID bracelet.  You are a person, and if you have struggled with Crohn's, you are my favorite person.  Be strong and stay strong.  

Love,

The Crohn's Ranger

• • 
    

It's Been Too Long

     Hello rangers.  It's been quite a while since I've posted on this blog and oh so much has happened in my life.  I've been doing "okay" Crohn's wise and life has been pretty good.  I got married to my wonderful husband almost a year ago.  It was a beautiful ceremony and the wedding and the honeymoon was not interrupted at all by the disease.  When I returned from my honeymoon I was fired from my job.  Those of you with Crohn's knows what stress does.  I was unemployed for almost three months, but luckily my husband has excellent insurance.  Three months worth of Humira only costs me $20 with his insurance, which is very good because a single Humira pen can cost over $1,000 and I get 2 of them every other week.

     I worked again for a few months, but left that job to chase a dream.  I went to Miami to pursue modeling and acting.  I was there for a little over two months, but came back because my father's health wasn't that great.  He's doing better now, but the doctor's can't tell us much.  I'm now back home and trying to figure everything out.  I have been cast in a film that I auditioned for in Miami, but like everything else in life, it's not a done deal yet.

     The past month my Crohn's has flared and my blood counts have been less than spectacular.  Luckily, they haven't had to hospitalize me, but I have had numerous infusions of both blood and iron.  I have one more iron infusion to go in the series that they prescribed and then they will take a look at my blood again and go from there.  I tell you rangers, it's not always easy to keep fighting, but I know that there are lots of you out there having a tougher time than me and you keep on fighting.  That keeps me strong.  I will do better to share my story.  I'll share it with you and anyone else who cares to listen.  Our stories are the most powerful thing that we have, so spread the word rangers.  And, never give up.

Battle Fatigued

               I'm tired.  I'm tired most of the time.  The biggest difficulty I face with Crohn's is that the fatigue keeps me from doing things that I want to do.  My mind is going a million miles a second, but my body cannot keep up.  This has gotten in the way of school, family functions, work, and pretty much every aspect of my daily life including simple household chores. 

               I've talked to many people with Crohn's disease who have had people call them lazy.  We are definitely not lazy.  Our bodies work harder than most, and some people say that our bodies even work too hard and that is why we are sick.  Well I'm here to set the record straight on those that would see us a lazy.  I do anything and everything that my body allows me to do.  Many times, it gives out on me and there is nothing I can do about it but lie down and try to recharge my battery.  When I am unable to do things on a daily basis I feel useless and weak.  I am a pretty independent person and it makes me feel bad that I have to rely on someone else that much.  Luckily, I have wonderful and amazing people around me who understand, for the most part, what I am going through and that I do need help once and awhile.

               Even though I do get this awful fatigue on a regular basis, I still push myself as much as I can.  My biggest pet peeve is when people tell me I can't do something because of my Crohn's.  They think I'm too weak, too fragile, or not strong enough.  All of their talk is just fuel to make me want to try even harder.  Even if I do fail, at least I tried.  Also, when I say that I can't do something:  I really cannot do it.  It is hard to admit when something is beyond my means, but I only tell people I can't do something when I absolutely positively am physically unable to do it.  Sadly, not everyone understands this and sometimes they keep prodding at me to do it.

               So take heart my rangers.  You are not lazy and don't let anybody ever tell you that you are.  Remember to push yourself, but don't overextend and make yourself even more sick.  I am pretty guilty of that myself.  I guess it's that German stubbornness that I get from my Father's side.  It comes in handy, though, every now and then when I feel like I should just give in to the disease and stop trying.  I'm never quitting the fight, and I hope you can say the same for yourself.  Fight on, rangers, fight on.

Test Anxiety: Colonoscopy

               I usually have to have a colonoscopy every year.  This doesn't make them any easier to cope with.  I detest everything about them:  the prep, the time commitment, the discomfort, the awkwardness, and the fact that it takes me a day or two to get back to normal because I always get ill after them.  Usually, there is puking and a fever spike, but it has more to do with the anesthetic than the procedure itself.  For some reason I wake up during the procedure under a regular sedative, so I get to have general anesthetic.  Also, I don't have to completely finish the prep.  What they give me is the gallon jug-o-nastiness which, no matter what you do, tastes like how I imagine Lance Armstrong's bike seat tastes after the sixth day of the Tour De France.  I'm pretty small to begin with so if I don't eat too much the day before I can get by with only drinking about 1/3 of the prep.  This gives me at least some comfort.  My heart hurts for those of you that have to choke down that entire thing.

               I will say one thing about them though.  I find farts hilarious, and it makes me giggle like a seven year old when, at the end, I have to expel all of the air that they pumped in.  Luckily, my fiance thinks its funny too, so we have a good laugh about it on the drive home.  I feel no shame in talking about this, it is not like people with Crohn's have any control over what their bodies decide to do, and we have to learn how to cope with all this stuff that we have to go through.  We really don't have a choice.  If we want to be as healthy as we can be and fight this disease then we have to do these tests on a regular basis. 

               I find comfort in the fact that I can laugh about something that many find too embarrassing to even mention.  And, I am glad I have someone to laugh with me.  I hope all of you out there have someone you can laugh with.  It is such a cliche, but: laughter is the best medicine.  So, I hope this helps you laugh at yourselves.  Don't take it so damn seriously all of the time.  There is a time for serious and a time for silly, and when you're farting  more in a 30 second time period than most people do in a month, it is time for silly. 

A Hymn for Humira

               At my lowest weight I was 84 lbs.  My hair was falling out, my potassium was so low that my heart was in danger of stopping, and I was hardly able to take in more than 500 calories a day on the good days.  I had been seeing a new doctor for about a year, and they were at their wits end trying to find a medication that would keep me alive.  Luckily, the new doc doesn't give up without one hell of a fight.


               They decided to put me on Humira, which was originally intended for patients with Rheumatoid arthritis.  It was an injection that I would have to get every week.  Many people give it to themselves, but the doc wanted to closely monitor the situation, so my mother, sometimes my father, and I would make the hour long drive every week.  The first trip down I was a nervous wreck.

               I can remember most of the truly scary moments in my life, but hands down, the scariest in my life has to be that day.  I was sitting in the little room of the doctor's office, that sterile paper crunching underneath my minuscule buttocks, and I was terrified.  Terrified that it wouldn't work.  Terrified that without it I would just waste away and disappear.   The nurse came in and started preparing the injection.  I wish she would have prepared me for how much it was going to hurt.  Having Crohn's disease, one develops a pretty high pain tolerance, but I was sorely equipped to handle that burn. 

               The injection went pretty smoothly, despite my white knuckle ride on the examination table.  I didn't feel any different, but after the appointment my father and I went to eat at a chain restaurant that specializes in bbq and being famous.  I was actually able to eat!  It was satisfying and I was ecstatic.  The drive back home was long, but it was definitely hopeful.  Hopeful that the fear would go away, and that I could start doing something that I hadn't in a long while:  start living.