Tag Archives: crohn’s

Biologics for Crohnologics: Meet Humira

1 Feb

Trial and error. Guinea pig. Game of darts. Playing blindfolded. Pincushion. Russian roulette…. All incredibly unfair statements, but this is how treating a Crohn’s flare honestly makes me feel. Let the record know, I have an amazing doctor, and I am great hands with him.. but the reality is.. Crohn’s has a mind of its own, making it difficult to keep up with – not just for the patient, but for the doctors as well. Every patient’s illness is different, with different symptoms in different locations, which progresses at different rates on a path of its own. Also let the record show, there is no cure for this illness – so managing systems is the only thing a doctor can do you for you. There is no fixing, solving or curing going on. Just alleviating symptoms, in order or medical priority – which of course, also seems to change as a patient’s illness morphs – on its on schedule…

So.. it has become evident that my existing treatment, Remicade, has reached is expiration date. An expiration date that came way earlier than hoped… just shy of one full year. Apparently, I developed antibodies that “block” the medication from being absorbed correctly, or doing the job correctly. (I’m not in the medical field, and sometimes, I will use my own language because that is what I understand, so hang in there with me here…) Anyway, it stopped working….

My doctor had wanted to try one last “blast” of the Remicade, but after seeing me 5 minutes before the infusion, and the level of pain I was in – I decided to decline the final IV. My doctor and nurses all supported this decision and immediately went to work on plan B… Plan B, that wasn’t there a year ago for me (from my understanding). Thankfully, the year on Remicade bought me a little time for the market to introduce more options for my case. Let me specify more FDA-approved options. Don’t you dare hop on Google and search treatment for Crohn’s to prove me an idiot here – don’t forget, everyone’s illness is different so this is not prescriptive like the flu where everyone gets the same treatment regime. I’ll take a win where I can get it.

So, meet, Humira. Humira is another biologic drug, which means it targets specific parts of an overactive immune system to reduce inflammation. This one in an injection versus an IV like Remicade. This one became a good option for me (not originally ideal) because of the joint pain I have in addition to the “traditional” Crohn’s flares, fistulas and fissures. I also found out that most Crohns patients are required to start with Remicade (I do not know why).

This is one of the trainer pens they sent me (plus the actual first injection injection training with my infusion nurses)… Kinda like an epipen…

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Steps are pretty easy… ice your leg/abdomen for roughly 20 mins, take off grey #1 cap, keep flush on skin, do not move pen, take off maroon #2 cap, plunge maroon button, keep flush on your skin for at least 10 seconds, check the little mushroom key-hole. Once window is yellow and line stops moving, remove, (do not wipe blood as you’ll remove medicine), add band-aid and ice for rest of day to keep welts and allergic reactions (expected) down.

So, I packed up my cooler with 4 of these suckers and headed off to my infusion center last Friday. (You are not allowed to give yourself your first round as they apparently need to legally give you training and also monitor you for major reactions during your first shots.) I thought I was ready for an easy 10 minute visit… yea right…

My faithful infusion nurse gave me the first one after icing down my legs… oh my Lord, I was not ready for that. Now, being a Crohn’s patient, I’m used to needles, sticks, bad sticks, giving blood, IVs, bad IVs, giving myself B12 shots… yea, nothing was going to prepare me for 10 seconds of this. I know, you are thinking – Litz, its’s TEN SECONDS, MOVE ON. It was like being stung by a hive full of bees and not being able to run away from it. Then, I had to give MYSELF THREE MORE OF THESE THINGS! I’m really not one to show too much emotion in public, and being a Crohn’s patient, we generally have a fairly high tolerance for pain… but these actually took my breath away. My poor nurse wanted me to slow down, but I just wanted to PLOW through these and get them over and done with…. But at least they were done and KNOCK ON WOOD, I’ll never have to do 4 injections again!! ūüôā Since I did have some welts they needed to watch me for breathing issues for a little while, so I did win a consolation prize of some hot tea and more ice – score.

HINT TO ANYONE STARTING HUMIRA: My nurses advised me to NEVER inject in the abdomen as it will be even worse there.

Image(Top Left: My first delivery of Humira, yes it comes to you house and lives in your fridge, Top Right: My cooler packed with first 4x shots/pens, Bottom Left: Icing down the reaction, Bottom Right: hot tea consolation prize).

I don’t know yet if this will work for me, I heard it can take up to 3 months to work (lord help me if it seriously takes that long…), but I’m trying to stay optimistic that this will help me find remission. I will take shots every other week until I find out, though! Now that the first 4x are done (THANK GOD), I go down to 2x (once), and then the plan is to give myself 1x shot every other week. I’m told these will get easier – here is is to hoping!

But I’m not off the hook tomorrow completely, it is still a shot day for me ūüė¶ Its B12 day for me. This is an easy one, and one I’ve been doing for over a year now. All set up and ready to go for the morning – love these ones! Helps with energy, so maybe it’ll be a good Friday! ūüôā

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Worse than Hallelujah – honestly…

15 Jan

It’s no surprise that I’ve found myself at a loss of words lately. After my trip to the ER two nights ago, I am again, left with an overwhelming sense of uncertainty in my life. Yes, it was a productive trip in that a new, additional diagnosis was made – which honestly comes with little to no comfort behind it. Although the news was not terminal, that I had zero support system beside me to reach out and hold my hand through it left me my own yet again to push through it “realistically”. Fuck. I am so exhausted of “being realistic”, “being the champ”, “being the inspiration”, “being the strongest person you know.” Let’s be clear here. I’m no one’s champ. I’m not strong now. And if I were an inspiration, it would be for what you should NOT to do, or feel or say…

My latest trip to the ER stared… Well truth be told, it was several weeks in the making, as my doctor deflected my repeated cries for help with honestly valid answers such as “it’s side effects of the extremely high dosage of prednisone”, “we tapered you too fast”, “you are going through withdrawal” etc. I can’t fault him. I was going through so much. This amazing man who I look up to (who is usually sarcastic to get you through the really hard days) has transitioned his care-taking strategy with me by now taking me by the hands and hugged me on more than one occasion over the last few months while I simply cry and break down at every single appointment for no reason at all. ¬†Sure, it was obvious that the prednisone really was affecting me negatively. So I get his linkage and can’t even say he was deflecting my cries for help. He did encouraged me to use the pain management available to me. Telling me not to be worried about looking like an addict, I clearly needed it. But then when the call came in to him that I was bleeding, it was clear that the pills were to blame for slowing down my system a little too much… I just couldn’t win!

Anyway, my amazing dr stopped answering his cell this weekend, so I had to call the oncall DR this Saturday who was quick to simply put me on me on more prednisone. Ok. Great. He promised relief by morning. And guess what! I had relief… For the first time in almost 3 months I enjoyed my morning walk with the dog, I caffeinated up, ate and went to work decorating the craft nook and office walls!

Then the pain started to creep in and creep in some more. Shit.. Called the oncall DR again. He said to get to the ER, he had no advice. And click he was gone… Ok. Now it was time to try everything in my arsenal as the thought of the ER and another hospital¬†admittance¬†scared the living shit out me! ¬†Out came the yoga mat, and some seriously earthy crunchy music. Nope. Ouch. Ballet stretches from my 15 years at the barre… Ouch. Hot bath.. The negative energy just intensified. Added Epsom salts. Stupid idea. Polish off the Dilaudid I had left (only 4mg) with some yummy hot tea, fluffy blanket, pillows and my entire petting zoo with music. Pain just got worse as the minutes ticked by.

Ok now that was all stupid . Now I am loopy and dizzy from drugs, it’s foggy and I need to get to the ER.. My pain has only intensified in the last 3 hours, and I am now in no shape to drive. Thankfully, a local friend agrees to take me with the promise he can drop me off at the door and avoid watching me fall apart inside. ¬†Score.

Just as I expected, they immediately treated me as if I were a drug addict simply looking to score some pain meds for the night – even though I clearly had a bag packed with me ready to be admitted to the hospital. ¬†I took my begging for a bucket to throw up into it, and bleeding out of the IV they started to take blood samples. ¬†Don’t forget, they don’t actually GIVE drug addicts the drugs they so crave… So I was left with a dangling IV starter dripping blood all over me and my bed… awesome. .. I’ll spare you the real image… 3 hours later, a doctor finally comes in who seems to get it. ¬†She states that my inflammation levels are indeed all over the charts as are other markers, so an IV is finally started – drains almost immediately. ¬†Clearly I was dehydrated – couldn’t they have figured that one out by all the water I was asking for? ¬†40MG of Prednisone administered moving me up to my dreaded 60MG (I’ll get into this within a different post). ¬†Finally in comes the Dilaudid and anti-nausea meds. ¬†Neither work. ¬†They inject me 2 more times with Dilaudid… STILL NO RELIEF. You have to be kidding me. ¬†I’m trying to walk around, trying to do stretches, crying… the nurses keep¬†looking¬†at me like I’m an idiot… I’m asking for them for recommendations to make the pain go away – they said to quit moving and lay still. ¬†Oh sweet nurses, you have NO idea what this pain feels like! ¬†Finally around 2am, the DR comes in and suggests a muscle relaxer. ¬†I said OK – whatever you’ve got, I’m happy to try. ¬†RELIEF! ¬†I¬†actually¬†fell asleep sitting up! ¬†It relieved the pressure around my joints enough to actually let the pain pills do their job!

They then checked me for the flu – since I was healthy, they decided the hospital was not a safe place for me (oh yes, then came a long lecture of why in the hell I would subject¬†myself¬†to the¬†hospital¬†during a flu epidemic… excuse me, did we not just go through HOURS worth of pain management trial and error and clearly my pain had risen from a 7.5 to a 15 in a matter of those hours? ¬†Did they not see what had transpired in front of them? ¬†Anyway, we agreed to send me home with all the medication they would have kept me on for a few days in the hospital… only guess what… she didn’t give me the one that was the key to it all… Valium, the muscle relaxer… honestly…

A dramatic taxi ride home (the taxi driver refused to take me to an ATM to get him cash then¬†cussed¬†me out in some language I do not know for not having cash when we got home – mind you after he drove past my house THREE TIMES, I eventually just got out of the taxi and said goodbye and walked home). I was finally home…

Then, onto the radio comes Amy Grant’s, Better than a Hallelujah… you have GOT to be kidding me…

“We pour out of miseries, God just hears a melody, beautiful, the mess we are. ¬†The honest cries of broken hearts are better than a Hallelujah.”… Well… I guess God must just LOVE Crohn’s patients, because we sure are NOT out rejoicing. ¬†We sure do give Him some pretty awesome melodies of miseries… Hope he enjoyed this one… Because I wasn’t enjoying singing this song.

SuperWoman – Apparently a bad thing.

30 Nov

Well – It finally happened… My luck ran out and the true power of my illness was spotlighted this Thanksgiving Holiday as I was admitted to the hospital on Friday, November 23rd. ¬†After battling an attack for three weeks, I finally gave in and called my (amazing) doctor’s cell phone who sent me packing for the ER and a hospital¬†admittance… I had no idea what was about to hit me, and I am not sure I will be as willing to go the next time if I have a repeat adventure because of it…

The illness bit abridged for anyone wondering: My Crohns has spread to a completely new area. ¬†By the time I sought medical help, the¬†inflammation¬†was too sever for pill-form medications. ¬†After ten days of pills, it became event that I was not absorbing them, so IV medications were necessary to get the attack in check. ¬†I had an IV for from Friday night until Tuesday evening to pump in everything from¬†steroids¬†and two antibiotics to muscle relaxers and pain relievers. ¬†I also went through 5 or 6 large IVs – I lost count. ¬†There were CT scans, EKGs and portable X-rays (everything in my own private room except for the CT). ¬†It was also my first CT scan in years without throwing up – thank you to the¬†anti-nausea¬†meds right before! ¬†I lost¬†roughly¬†10 lbs, when I should have gained 8-10 lbs in that time on pill¬†steroids – you do the math. ¬†Let’s just chalk this up to hard time. ¬†Also thrown in there, some good old-fashioned, character-building family drama – but I’m not about to touch on that one yet.

Turns out that my SuperWoman Cape can hurt me. ¬†Damn do I hate it when I’m wrong, and I sure found this one out the hard way. ¬†Turns out, my attack wasn’t just stress as I had originally thought. ¬†Unbeknownst¬†to me, my body was actually trying to tell me to slow the heck down – that it was in some serious state of shock. ¬†Nah, I just kept on pushing from one thing to the next. ¬†Truth be told, I don’t really regret it either. ¬†Blame it on my age, my immaturity, my lack of concern for myself – I don’t care. ¬†I was living my life like a “normal” 28 year old. ¬†I was rocking it out at my job, I was making a home for myself, I surrounded myself with amazing friends, and I was finally meeting new people again! ¬†I was loving to dress up again, putting on make up, high heals, and¬†accessorizing¬†myself like the woman I was again, the woman I have always been. ¬†I actually was ENJOYING MY LIFE, shame on me!

Now, I am on doctors orders to relax only and get my stress in check – and I’m about to figure out how to do that – or at least start trying. ¬†Since I’ve been released from the hospital, it has been a serious challenge (I didn’t realize how many panic attacks can occur in one afternoon for fear I am missing something). ¬†This is almost torture now, but I am starting to slow down a bit and think about myself first. ¬†This is something I don’t think I’ve ever learned how to do, kinda funny when you think about it actually. ¬†How can I be “well-rounded” if I never come down from high stress levels?

I am currently listening to soothing music, after a bubble bath, sitting at my kitchen counter (I think I’ve only sat here twice since closing in April, and certainly never alone!) ¬†It is kinda nice to be completely unplugged from work, have the TV off and a candle lit – though my thoughts are a little suffocating at the moment. ¬†I’m sure that will calm down soon.

Step one: Stop living in the corner office of my home.  Yes, working from home is amazing Рbut no more negating the living aspect at home too!

Hear me when I say this – I do NOT regret that I was living my life. ¬†However, through this humbling experience, I did learn that I need to make some adjustments to HOW I was living my life. ¬†Ok – so, that’s¬†admittedly¬†as far as I’ve come. ¬†But progress is progress right? I will take baby-steps today, especially after the week I’ve just had.

And no, the experience wasn’t all bad. ¬†Even though I am admittedly very angry with the big man in the sky, I do recognize the blessings He has bestowed on me. ¬†I am humbled by the support team I have and I would be doing a great disservice¬†if I didn’t list off my THANK YOU LIST:

NOTE: YOU MAY NOT READ INTO THE ORDER OF THIS LIST, YOU MAY NOT GET OFFENDED IF YOU ARE NOT LISTED BY NAME, THERE IS A PLACE FOR EVERYONE ON THIS LIST. IF I SERIOUSLY MISSED YOU – JUST YELL AT ME & GET IT OVER WITH ūüôā

Angela – For being my rock – plain and simple. Oh yea, and… The ride to the ER, sitting in the ER instead of bedtime with your baby, for driving to my house countless times to pick things up for me and bring to the¬†hospital¬† walking the dog/feeding the cats/getting the mail. ¬†For never letting me completely fall. ¬†For marrying the most amazing man who supports me too and keeps me laughing. ¬†Oh yea, and putting up my Christmas Tree, building my craft desk, SmashBooks and Ikea trips! ¬†Ok, I’ll stop before I make you cry, too.

Sethiya and Slawek – For taking my dog in for a week like he was your own, and loving on him as I would. ¬†The pictures and video have been amazing. ¬†I can’t wait to get my hands on him again, but you have saved me – there is no way I could have walked him yet.

Matt, Mark, Kellie, Andrea, Maddie and Hannah – For your countless support over the phone calls, text messages, gmail chats, facebook posts, flowers and books (since I can’t send Amazon shipments to my own address like a total blonde). ¬†I could never get through a day without any of you.

Greg – For the multiple hospital visits, trashy magazines, movies on loan and soduko book. ¬†I can’t wait to be back at the bar! And messages delivered by Greg from ¬†Tyler and Los.

Maytanee РFor visiting me in the hospital with bag in hand Рmagazines, novel and Christmas tree decorations and that amazing smile of yours.

My management staff, co-workers, and business unit РFor the more than generous gift for food delivery over the next few weeks so I can stay out of the kitchen if needed, flowers and balloon! To Felix, Phil and Sean for visits to the hospital and at home.  For encouraging me not to work and focus on my health (seriously, how did I get so lucky?).  To Sean for driving me home from the hospital and all over Northern Virginia to find a pharmacy that stocked my Rx.  To Kippy and Stephen for the flowers.

Diane – For being there for me, after all these years, with words of encouragement that resonate through me like a stone in a still pond. I need not say a word more.

“Sykes Sisters” (even though you aren’t both Sykes anymore) – For the ongoing Crohn’s advice and support. ¬†For the beautiful plant that will live in my home office every day.

Sean and Sara РFor visiting me in the hospital, making me feel normal, the treat for crafting and the Christmas movie on loan!

Wilson – for visiting at the hospital – loved our random catch up sess!

Melissa, Arek and Ella – For the amazing Polish soup – it was the first thing I was able to eat!

HollyBerry, Megan, Stacie, Colby, Jenny T, Jenny C, Los, Alex – For your constant text messages that kept me going

Mike – For the Crohn’s advice.

Joel and John – For being my “Dad’s” and keeping me focused on whats important nearly daily (outside of this).

Cieran РFor being a rock across the pond Рno really.  For staying with me on Facebook in Scotland nearly 24/7.  Who knew a IT support call at Axios could lead to such a dear friendship.  This friendship is going no where!

Valko – For your heartfelt call and countless “bless their hearts” that make me grin. ¬†I love you like a sister!

To everyone who stayed with me on Facebook, G-Chat and random text messages – I have been so blessed by each and every one of you – and I don’t want to name you all for fear I will miss someone and hurt your feelings. ¬†You kept me going and I count each of you in my blessings.

And to one more Рthank you for walking through my hospital door Monday morning, the calls, the messages, for making me smile and taking care of me when you could.  Please be safe.

Your Most Valuable Resource: Time

18 Nov

Wow – I sure made it far into my 30-day challenge before dropping off the face of the Earth. ¬†I supposed I just might not be cut out for organized blogging… but the (way too) early break did come due a life challenge. ¬†So, I guess it is fitting to blog while I get myself back on track?

Day 3 is titled “Time Squared, Spending Your Most Valuable Resource”. ¬†Quite ironic that I’ve now had essentially a week to mull this one over, as all I have had is time on my hands. ¬†Attempting to hide my bitterness by not blogging has failed miserably, so why not just talk this one out.

The book talked about a simple equation – one I’m sure we have all heard ad nauseam: Increased Energy + Increased Engagement = Sense of More Time. ¬†(Quality over Quantity). ¬†It went on to speak about how 6 months could pass by in our lives quickly or painfully slowly – and encourages us to ponder what would make the difference in each of our lives. ¬†What would it take for each of us to become fully engaged in our own lives, so that time is well spent, instead of us being paralyzed in fear of the future. ¬†It is all in the way we invest our time – in ourselves, and in those around us…

Over the course of the last week, my disease has taken control of my life.  Its headstrong, controlling personality jumped right into the happy little life I was starting to create and began to splatter mud all over my almost perfectly clean canvas of a new start.  It has in essence stripped me on my independence (temporarily) and replaced my lightheartedness with a cabinet full of medication.  There is not much quality time going on, unless you call curling up with the dog in bed with a constant stream of Netflix movies and TV shows engaging.  Dammit!  Though, I do have to give a huge shout out to my best friend who has done an amazing job of keeping my spirits up Рwhich included basically taken on a renovation project in my house for me.

With this down time, I have to admit that I have pondered what the truly sick people do when they only have 30-days left to live? ¬†They spend their time in hospitals slipping away – they don’t spend their time making amends, and thinking about their most valuable resources, figuring out how to re-create themselves into the image they always had imagined. ¬†They ride our their last wave trying to stay comfortable, not standing up to their biggest fears. ¬†There it is – the huge flaw with this book – and I hate it, the title of the book. ¬†Terrible.

But, in the spirit of having more than 30-days left to live, I suppose I will attempt to stay the course of the challenge… As much as I don’t want to continue based on the sole fact that the premise of this book is a simple marketing¬†gimmick… ¬† But I am thankful that I do have (God willing He doesn’t have alternative plans for me soon) more than 30-days left in me. ¬† I have the time, or I will as soon as this attack is over, to stand firm on my own two feet and live the life I had always imagined. ¬†Here is to getting back on track.

The book did make a great point… “Time once spent can never be reclaimed.” ¬†Amen to that.

Live like there is no midnight…

26 Sep

Cinderella gave the world some amazing advice through the powers of good ol’ Walter Elias Disney, to live like there was no midnight. ¬†As a little girl, Cinderella was just a pretty pretty princess… but today, I reflect on the strength that Walt’s dynasty meaningfully bestowed in our nations youth and all that the glass slipper stood for. ¬†Looking at myself from ten thousand feet above, I challenge myself to reflect on my own life. ¬†Am I meeting each day with the strength necessary to live the life I had imagined? ¬†I am I living the life I want? ¬†Am I living my life to its fullest? ¬† Am I living like there’s no midnight?

Probably not.

I’d like to think that I’ve had this attitude throughout my life – and the¬†genuine¬†answer is that I have. ¬†I have risen up to many¬†occasions¬†and tackled countless obstacles. ¬†I have scars emotionally and physically to prove it, and I have grown in ways I could never have expected. ¬†But the reality of the situation is that ¬†I’m just not there yet, and I find myself teetering on the edge because of this. ¬†Am I embarrassed to not have it all together at 28? ¬†Surely, that can’t be it… Am I really expected to have it all figured out already? ¬†Seriously, why does life not come with a carefully planned out manual – detailing out the how, where and when to insert yourself into various life situations and how to know its done correctly.

Sure, I have accomplished a lot – over the years, over the past year, and over the last few months. ¬†I’ve bought a house, paid off my debt (did I mention the car will be paid off this Friday?), tackled some serious turns in my chronic illness, called off a marriage that wasn’t right and bounced back from the relationship that I was sure was it. ¬† But am I accomplishing much in “life”? ¬† Does any of this get me closer to being¬†fulfilled¬†when the clock strikes midnight? ¬†With the exception of buying my house, my answer is an¬†embarrassing¬†no. ¬†Sounds like a lot of searching to be done…

When I named this blog years ago, I hadn’t then realized what an ongoing evolution Finding Litz could be. ¬†I mean, come on, how hard is it to look in the mirror and find yourself? ¬†Apparently, it takes more than 28 years of practice. ¬†Thank you, Cinderella, for teaching me to give myself more credit than I do. ¬†I will make sure my nieces know you too.

(Though, let’s be honest here and give credit where credit is due. ¬†Walt Disney may have popularized the story of Cinderella – ’twas truly a Greek folk tale and her name was originally Rhodopis first formal documentation known in1st Century BC. ¬†I opted for the widely popularized version – which was truly inspired by the release of Disney’s Cinderella on¬†Blue-Ray¬†next week….)

FairyTales… Without happy endings?

3 Mar

My favorite part about growing up was¬†tying on my tap shoes and lacing up my toe shoes.¬† No matter where I was, the dance studio, our high school’s stage, my home studio or one of the many stages I competed on, I was able to visit a world full of dreams and hopes.¬† A world unlike the one of reality.¬† A world¬†that melted away¬†the pain of the day – both physical and emotional.¬† I was able to temporarily transform my reality to a creative and peaceful world.¬† This freedom from the pain is also what I miss most about my childhood and my young adult years.¬† Today, my joints, bones and muscles ache too much to withstand a long walk — I’m beginning to think my dancing days are officially over for good.

Today, I look back on my life with anger and the hopeless feeling of being defeated.¬† In high school, I remember explaining to my friends that I understood my family’s turmoil.¬† That I just wasn’t one of those people who was blessed with an easy childhood.¬† I explained that I thought everyone, at the end of their lives, would have all gone through the same amount of pain.¬† I was just going through my pain early in life so that I could be blessed with an easier and happier adulthood.¬† I honestly believed that…. And I still, up until today, believed that, with everything I had.¬†

This week was the straw that broke the camel’s back.¬† This week I finally reached the “ENOUGH” phase; and it made me think back on the trust I held¬†in karma.¬† My trust that things, someday, would get easier.¬† What a joke.¬† They say “what doesn’t kill you makes you stronger.”¬† And “God only gives you what you can handle.”¬† Honestly, I’d like to know why God hates me so much.¬† What did I do to piss off some greater being out there?¬† What did I do to deserve all this?¬†

Yes – this is a very different outlook than my last post…. And I understand how out of character this stance is for me.¬† But enough is seriously enough today.¬† I hope I wake up tomorrow and can find the silver lining in all this again.¬† I hope I wake up tomorrow and want to face the day – anxious to see what the day has in store for me.¬† I hope this denial of the reality of¬†my life goes away – or gets easier to cope with.¬† Because today, it sucks.¬† There is no other way to put it.¬† I think the positive outlook on life is a crock of bullshit.¬† What can possibly be good about an illness without a cure?¬† An illness that strips¬†me of my independence¬†and threatens to strip me on¬†what makes me¬†“me”.¬† It sure doesn’t look like things are about to get any easier, especially when what is supposed¬†to be my “miracle drug” is making me so sick I have nothing left but to vomit stomach bile, makes me lose 75% of my vision for days at a time¬†and makes it too painful to even take the dog for a walk everyday…

Seriously, what did I do to piss off the big guy in sky?

Fears Faced: Remicade

11 Feb

This past Tuesday, I faced my biggest fear. ¬†With a picc line in my right hand, and my closest friend beside me, I admitted to myself that I am ill. ¬†Sure, I talk about it, but I in this moment, I fully admitted to myself that I have a chronic illness that does not have a cure – that I’ll never be “healthy” again… But the possibility of long-term remission is in sight!

First Infusion 2.7.12

Seven years ago, I was diagnosed with Crohn’s Disease. ¬†Since then, I have battled denial and pretended to as healthy as my friends and family… I’ve been on 6 different medications and have been on and off steroids more times than I can remember. ¬†I’ve had three colonoscopies. ¬†I’ve swallowed a capsule camera. ¬†I’ve had two surgeries – one in an emergency without¬†anesthesia and another that took almost 6 months to heal from. ¬†I’ve missed weddings, parties, showers for friends and family. ¬†I’ve run out on interviews, meetings and dates. ¬†I’ve made road trips three times their normal length. ¬†Let’s just say that the disease is humbling….

A few weeks ago, my GI looked me in the eye and dropped the bomb… I was no longer in remission – and it was time to bring in the big guns. ¬†It was time for the last class of medications, biologics (short story, they shut off part of your immune system). ¬†After 3 weeks of stressing, reading horror stories online, Remicade and I finally met. (Won’t bore you with the details, Google if it if you are nosey.) ¬†With my best gal pal in tow, I faced my biggest fear. ¬†Turns out, it is not so bad! ¬†The 3-hour drip gave us plenty of time for girl talk, and allowed us to sit back in comfy recliners and watch Footloose (the classic, of course).

I was so impressed with the drug – I was actually able to go 3 entire days without an attack! ¬†I’m don’t think I could tell you the last time I had relief for such a long time! ¬†Of course, all good things come to end… this weekend I’ve slipped right back into my normal self. ¬†Bummer. ¬†But I really shouldn’t complain, because most patients don’t even see positive results until their 3rd or 4th infusion. ¬†I was beyond lucky to feel them the day of my very first infusion! ¬†I can’t wait to go back next week for infusion #2.

Things are looking up – I may be in full remission by May 2nd!! ¬†A new home and a new life? ¬†YES PLEASE! ūüôā

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