Everybody Wants To Be Free

Everybody wants to be free of something. Whether its a habit, an addiction, an illness or an obligation, we all desire to be free of something.

I work at a laser eye center, which has brought this topic to mind recently. I guess I never realized that so many people wake up in the morning and aren't able to read the time on their alarm clock! Blurry vision is just one thing people wish to be free from. I must say its really neat to be part of a team that helps fix people's vision and restore their sight!

The glasses graveyard!

Throughout my ongoing battle with health issues, my heart has longed for many things. I've desired to be able to eat the same unhealthy junk that everyone else eats. I've wanted so much to be able to make plans in my life not have them sabotaged by plummeting health. I've ached to be free of medicine.
Random side story - After my third and final surgery, I was planning on having a Prednisone burning party. I was going to burn all my bottles and bottles of this anti-inflammatory, rage causing drug that I had been enslaved to for so many years. It was going to be great! However, after being re-diagnosed with Crohns, I ended up having to start taking it again. Instead of destroying the evidence of my past and celebrating my freedom from it, I faced just the opposite. Man, it would have been flippin' awesome to be medicine free. More than anything though, during my journey through downward hills and valleys, I've longed to be free of sickness. 

Both Colitis and Crohn’s can be extremely debilitating diseases. Painful symptoms can cause one to become withdrawn from social situations. Obviously its easier to sit at home when feeling weak and yucky than to plaster on a smile and face the crowds. Any outings, whether for work or fun, are consumed with the constant search for the nearest bathroom. (which by the way is pointless, because upset insides have no schedule...)

I have also struggled to be free from anxiety and fear. It has ruled my heart at times. It has taken my thoughts captive, to the point where I didn't even recognize that I was allowing that! Deep down I've always carried dread of my next downfall and all the terrors it may hold...

Regardless of how painful life can be, I realize that the Lord frees us from our trappings and make us whole again. He reaches out to us, continually inviting us to bring to Him our burdens. "If the Son sets you free, you will be free indeed." -John 8:36  

Although I don't always understand the things I have to deal with, I know that when I hand over my burdens, my heart feels the weight lifted and I can breathe easy. Sure, maybe I will have to inject myself with medicine the rest of this earthly life. And perhaps I will have more nights spent at home than out doing fun stuff. I might be stuck with this auto-immune disease. But no matter what I deal with, I know that the Lord has set me free of being weighted down by my sin and He continually heals my heart. 

"The Lord is close to the brokenhearted and saves those who are crushed in Spirit." - Psalm 34:18

Never Say

Just a few tidbits offered from my side of living with Crohn's Colitis:

Things never to say to someone with IBD:

“I wish I were skinny like you.” 
Please understand that when I hear this comment, I instead hear, “You’re lucky that you’re sick, so you can look good!” Hello, some people are thin because their body isn't getting the nutrients it needs! Besides being malnourished, people with IBD are often in a battle of trying not to lose any more weight. Despite best efforts, vital pounds are often lost. Trying to be a healthy weight can be a battle from both ends. (I know this is the opposite problem most people have.) Usually people would be willing to loan a few pounds...but hey, for the record I’d rather be fat and free of disease than skinny and sickly. ;)

“I wish I could eat healthy like you.” 
First of all, you can eat boring white rice like me if you really want to! Nobody’s shoving greasy fries down your throat.  Haha! Secondly- I wish I could eat delicious, greasy, overly sugary junk without a second thought as other people can. Jealoussss. 

“Did you just get your wisdom teeth out?” 

I've heard this comment one too many times not to bring it up. Commonly prescribed drugs for IBD, often have a side effect of swollen/puffy/fat face. I know sometimes people blurt things aloud without thinking, but pointing out the fact that a person's face looks like the moon is awkward. And having to explain it is even more awkward. 

“You don’t look sick.” 
I am not sure if this is a compliment or an accusation. From my experience, when a person lives with chronic disease, they get pretty good at hiding it. Just because someone looks fine on the outside, doesn’t mean everything is great inside. We all know this. Fact: My guts are bleeding day in and day out and that is not normal. 

“You look tired.” 
Yup , auto-immune diseases are exushating! The body is waging a constant battle against itself. This attack takes a toll... Yawns increase, lack of energy, etc. Besides that, when a person is in a flare up of Crohns/Colitis, they aren't sleeping well, and sometimes not at all!

I suppose this concludes my lesson of conversational etiquette regarding IBD! There's so much I could say about living with a crappy colon/none at all, but I shall stop here. 

Humira

After weeks of frustrating and conflicting information from insurance companies and pharmacies, my mail-order Humira finally arrived! I'm not great at explaining how Humira works just yet. There's some crazy awesome science behind it, but I'm still learning. I know its in a biological class of drugs that treat auto-immune diseases by suppressing the immune system. (Since my immune system is messed up and attacks my intestines, Humira undermines this wrongful occurrence ) Its a subcutaneous injection, meaning that the medicine is injected under the skin...with needles...GASP!

TATS VS SHOTS

My body is covered with plenty of permanent ink, which is supposed to mean I'm tough or something. So not the same experience! The sensation is completely different. Getting a tattoo feels more like scraping an open wound over and over again, whereas getting a shot is very pinpoint. Not to mention that terrible feeling as the medicine is being pushed in...YUCK! In my opinion, tattoos and injections are incomparable.

[SIDE NOTE] In case you're wondering about getting a tattoo while on Humira: I asked my GI about this and she recommended (not that she recommended tattoos, but said that if I'm going to do it regardless), do it when the medication is at its lowest dose in the body....like when its almost time for my next shot. Then post-pone the next dose a few extra days. For myself, I do my shots every 2 weeks. So on day 10 after my shot, I got the tattoo. I waited 5 more days after getting my tattoo to do the next injection. Reason being, that (obviously) while on Humira the immune system is down, and therefore the risk for infection is greater. Basically I wouldn't want to get a new open wound i.e. tattoo when my immune system is at its lowest to fight off potential infections. I experienced no problems with my tattoo healing and it healed up just as quick as my "pre-Humira" tats. 
  
MIND OVER MATTER

I am one of those pathetic people who practically cry every time they get a flu shot. Knowing I had to inject myself with shots, was quite intimidating. The brain is a powerful weapon. With fear stacked, it can destroy you, and with courage, it makes you strong. I know getting shots are not as big of a deal as I make it, but for people like me, its a good thing drug companies created Ativan! Also its a good thing I have a husband that loves me enough to pin me down and stab me in the legs/stomach with needles. 

The starter dose of Humira is 4 injections. Two weeks later, it decreases to 2 injections and then finally down to one injection every couple of weeks. I guess the starter dose is so high to help kick start the benefits of the medicine.

Me trying to be enthusiastic about the 4 injections

The design of Humira is nice because it is a tiny needle, which is never actually ever seen. The medicine and needle are completely enclosed inside the plastic casing mechanism. Its pretty easy to use. 1. Clean skin. 2. Push deployment button to release the needle into the skin. 3. Once the button is clicked, the medicine distributes quickly under the skin (and it burns) The burning sensation only lasts 15 seconds, but its not pleasant. I'm pretty much a wimp and cried. Ugh, did I mention I hate shots?

ADIOS, $1,000!

The second shot I did, I goofed up. I was nervous (because I HATE shots) and wasn't keeping enough pressure on my skin with the pen when I clicked the release button. I sat helplessly and watched the pen launch this insanely expensive med. OOPS. Nothing quite like watching a thousand bucks ooze over your leg!

COST
Humira is a highly expensive medication. I think its like $1,500 per injection (without insurance). Hey good news though!...Although my insurance covers a large portion, there's an additional free Humira co-pay card that everyone who takes this drug needs to have. My box of 2 pens costs me a total of $5. Yes, from $1,500 to only $5. I only found out about the co-pay program because I have a good friend who works at a clinic. Just Google "Humira protection plan" and give the pharmacy the co-pay card info.

SIDE EFFECTS

Short term side effects vary from person to person. There is always a chance of being allergic and going into anaphylactic shock. Thankfully this was not my experience. The only issue I had came several hours later. The injection sites became itchy and puffy. Ice packs on the skin took care of this problem. It occasionally swelled up for a couple days after the shot, then went away for good. Apparently this is a typical minor sensitivity and went away after a few days.

Temporary rash at injection site on belly

STAY AWAY, SICKO'S!
Do I really need to repeat that I now live with a compromised immune system? I literally inject immune suppressants into my body. I don't have the same fighting advantage against colds and viruses as other people. So friends and family, please don't be offended, but if you're sick, let's reschedule our face to face coffee date. =) Seriously, don't breathe on me!! 

LIVING WITH REGRET?

I avoided biological “adult drugs” for years and years and years, and even chose to have my colon removed so I wouldn't have to tango with them. Turns out, they're quite helpful! Do I regret my decision to have surgery, now that Humira seems like a good option? Answer- No. Why? Well #1 My colon was in SUCH bad shape, I have a hard time believing it may have been helpful. #2 At the time I made that decision, it made the most sense. #3 There was no way I could ever have anticipated this outcome... If Colitis wouldn't have crossed over and became Crohns, I WOULD be disease free and WOULD HAVE BEEN medicine free.  Unfortunately I am that rare case of odd outcomes. Fate had a different plan than I did. 

As Relient K says, "I'd rather forget and not slow down than gather regret for the things I can't change now."

http://youtu.be/OF_UMjB1SbY?t=7s

"Cause I could spend my life just trying to sift through

what I could've done better, but what good do 'what ifs' do?"

RUNNING FROM THE SCARY TRUTH

Often the thing we run from for so long is the one thing we need. Not to say that all my surgeries were a loss, but its funny how ironic things sometimes end up. It reminds me of how as a people, we often run from God. We indulge in our sins and hide from the One who can set us free to live in His forgiveness and peace. We are stubborn and are easily frightened by what we do not know. And in the end we look back and wonder why we let fear grip us for so long...

In conclusion, "H day" was stressful, but I think maybe also the beginning of relief. Not to jump the gun, but I feel it helping my symptoms. I have less crippling ulcer pain. YAY! For the first time in a very long time I'm like, “Oh, so THIS is what it feels like to not be in constant pain!” YEAH! I'll take it! Thanks, Lord!

Here's an update! -->2 Years On Humira