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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.

Power Surge – Day 4

10 Dec

Now that 32 days have lapsed since beginning a 30 days challenge, I guess I should get onto day 4…

Today’s passage drew on the scenario of a power surge – and what follows. How the lights gets brighter and flicker resulting in a darkness. Our immediate thoughts dashing to the duration of the darkness anticipated, typically sending us searching for our candles and flashlights. Throughout the next passing minutes, hours and days (with support of our generators) we realize our dependencies to the crashed power lines dangling around us. This really hit home to me in more ways than one..

In times like this, we typically struggle to get through our days – we miss our DVRs almost instantaneously, and tether our iPhones, iPads and laptops to our generators and cars for what feels like constant charges to remain connected to the “outside” world. Our smartphones replacing our home networks, providing us with temporary HotSpots to provide us with continual VPN access. Hours later, we realize we are hungry and realize the microwave is worthless, then it gets real when our showers are chilled. This scenario is actually real – it happened to me a few weeks ago during Hurricane Sandy. I thought the world was over when I couldn’t work due to my iPhone not being HotSpot enabled while my mobile WiFi was crashing. Life was hell – or so I thought..

Little did I know that there was another power surge going on in my life – and one that would send me truly spiraling and grasping for anything to hold onto. During Hurricane Sandy, I was on the top of my mountain, and the real darkness came in illness form (see previous post for details). In said post, I mentioned that I was going to make some tweaks to my life, I just didn’t yet know what they looked like yet. Well, I still don’t have a solid plan, but now I have a better framing structure to build that plan off of.

Bouncing back to the book now… the authors really struck a chord with me on this one. To make change in our life, we move from will power to real power. But where the heck to we get our real power from and what is the difference? The book talks about will power being our power and real power being God’s power — we as humans don’t have the real power to make change in our own lives. It all happens by him… I am quiet undecided and almost put off by this in reality. This could be my inner control freak lashing out, but at the end of the day, I just cannot accept the fact that I am not driving my life at all. Must spend more time on this topic – I am at a loss on this one today; HOWEVER, I do really like the idea of will versus real power in concept. I will definitely be spending a lot of time here, both practically and spirituality.

In reality – I am realizing that there is a lot missing from my life, not just a relationship with my Creator. So it is time that I start to re-engage and bring some of the long-lost and never-found facets (back) into my life. A few of the areas that I have identified thus far are:

1. Creator Connection – I have finally said it, and more importantly written it down. If I have an issue with the Big Man in the Sky, then its about time that I address it. I don’t yet know what this will look like – or what my first conversation with him will sound like (if I had to guess, it’ll be a mess), but I finally have a real motivation to set this straight, or at least try. Don’t get me wrong, I haven’t completely written him off over the last 10 years, and I have tried time and time again to work on this relationship. However, something hasn’t clicked for me here yet. I’m not going to push it – but I’m going amp up the energy a little. And I have this bible quote to thank for it. After searching for a passage for essentially 3 years, I finally found it! And I will be purchasing a copy of The Message Bible tomorrow – It may just be in the right language for me.

‚ÄúAre you tired? Worn out? Burned out on religion? Come to me. Get away with me and you‚Äôll recover your life. I‚Äôll show you how to take a real rest. Walk with me and work with me‚ÄĒwatch how I do it. Learn the unforced rhythms of grace. I won‚Äôt lay anything heavy or ill-fitting on you. Keep company with me and you‚Äôll learn to live freely and lightly.‚ÄĚ (Matthew 11:28-30 MSG)

2. Spiritual Energy & Health – As most things in your life hinge on this, this is a priority. I don’t take spiritual health/energy as the text book “God/human relationship” as the book does. I am expanding this to include spiritual self-grounding in general with Yoga and Eastern medicine. Possible avenues here include acupuncture, herbal remedies etc. Immediate need is to get healthy, not to grow. Healthy things grow – must get healthy first. (This is in addition to medical health.)

3. Perennial Pruning – I am self-admittedly not good at cutting the decaying portions out of my life to make room for new and positive adventures. This is going to change, but not over night. The book brought up that in most vineyards today, the head gardeners train the pruners for 2-3 years before letting them cut the branches, because pruners can ruin the entire crop if they don’t know what they are doing. This aspect scares me, and I know this will be painful – but ultimately, it will be beneficial and productive.

5. Constant Connection – To myself and per the above. I plan on doing this two fold with constant communication and constant confession. Why not start an open dialogue in the morning with the Big Man (once we have worked out our issues) – sharing concerns and expectations for the day and keeping it going through the day. Immediate honesty when realizing I should have said or done something, or shouldn’t have – then moving on. Owning it, learning from it, and leaving it – acting on it if necessary to rectify mistakes as required. Consider it an ongoing catalog of life events and how I feel about them. I’m not sure how much will be written in journals versus simple cognizant thought. Likely journaling the large issues/blessings to learn more about them.

My goal is not to change who I am in any way, but to better myself and heal what is broken in my life. This is an evolution and something that will likely change and morph more than I can imagine today. Cheers to the New Litz.

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.

Numb

29 Oct

Lately, I’ve had writer’s block – and it’s really been eating away at me. ¬†Usually when I take a break from writing¬†it is because life has gotten in the way. ¬†This time, it is because I just couldn’t do it – and I couldn’t figure out why. ¬†But now I realize, it is because I’m not allowing myself to face realities of my life. ¬†I’m numb…disconnected… and¬†hesitant to feel again.

Sure, from an outsider looking in, it may look like the puzzle pieces of my life are¬†methodically¬†coming together. ¬†One by one, my life appears to be “working out”, and it’s looking pretty good from that perspective:

Think like a man, walk like a woman. ¬†Check – I’ve settled into a career with not one, not two, but several path options ahead of me. ¬†I’ve surrounded myself with a pool of successful businessmen who play in various sandboxes who have taken on a¬†mentor-ship¬†rule to me. ¬†Now if only I could truly decide what I want to be when I grow up…

Financial freedom. ¬†Step in the right direction. ¬†I have paid off¬†roughly¬†50k in credit card debt by my own doing. ¬†No help, just hard work and dedication. ¬†My car is also paid off in full and its title lives in my safe. ¬†I’m rebuilding my credit, and that plan is working out quite nicely.

American dream. ¬†Check. ¬†I bought my first home. ¬†On my own. ¬†Sure, it was a heart breaking experience walking away from not one but two homes I had fallen in love with on the same street as my best friends due to black mold. ¬†But it worked out better than I could have imagined – I was able to not just buy, but build my very first home. ¬†Now to tackle that¬†pesky little thing called a mortgage…

Remission. ¬†Step in the right direction. ¬†I faced my scariest battle yet head on, and will continue to do so every 7 weeks. ¬†I won’t give this section a resounding check just yet, because damn it its freaking scary. ¬†I’m still not fully OK with getting an IV every 7 weeks for a biologically targeted chemo to be pumped through my veins… but then again, who would be OK with that?

Friendships to die for. ¬†Check check triple check. ¬†I really have some amazing friends, both new and old, who I think (know) would be there for me at the drop of a hat. ¬†But for some reason, opening up to any of them isn’t on the table for me…. insert numbness.

I overheard a new friend of mine telling a buddy of his about me the other night. ¬†He was telling his friend about this girl who’s¬†genuine with an infectious¬†positive¬†attitude. ¬†¬†Someone who is fun to be around, and he¬†legitimately¬†likes to see out. ¬†(He later told me he was talking about me, so I’m not just on some ego trip…) ¬†If felt so nice to hear that… but later, it really weighed on me. ¬†I realized the infectious positive attitude is just on the outside now – that’s when I realized I wasn’t happy. ¬†I wasn’t mad, upset, angry, or hurt either. ¬†I wasn’t anything. ¬†Just numb.

A neurologist once told me that our bodies have an ability to turn off our pain receptors. ¬†We simply stop feeling physical pain – result, our bodies eventually endure too much and we black out, fall to the ground¬†unconscious¬†so that our bodies can heal from the damage. ¬†Of course that’s tied to extreme pain – but could my soul turn off its ability to feel too?

I love the woman I’ve become – educated, well spoken, organized, motivated, quick on her feet, able to take take care of herself. ¬†But to keep that woman alive, I’ve kind of learned to fly. ¬†Flying through life at lightening speed, ignoring myself, just throwing myself full speed into my career to divert my attention. ¬†I’m scared to take off my SuperWoman cape to take care of the shattered girl inside. ¬†I know I’ll never fix the past mistakes of my father, cure my disease, or erase my own mistakes, but I’m afraid of the inevitable fall to come should I do so.

I’m not sure if feeling again is the best idea either. ¬†What happens then? ¬†What happens when I finally admit to myself that I could have died recently? ¬†Being told how lucky you are and that you may not be so lucky the next time is a great conversation, let me tell you. ¬†I guess I would then have to write a will, but honestly, what does it matter when you don’t have a family? ¬†What happens when I finally admit to myself Thanksgiving is 3 weeks away, that the anniversary of past mistakes is 2 weeks away? ¬†What happens when I look around in the morning and realize that I have no one to share my successes with? ¬†Maybe numb really is the answer.

But when I am ready…¬†“What lies behind us and what lies before us are tiny matters compared to what lies within us” – Ralph Waldo Emerson. ¬†What lies inside of you will always come out. ¬†I just don’t know how where to go from here. ¬†I guess a lot of¬†finding¬†will be going on…

The Bullet

19 Jan

I was shocked to realize today was Wednesday. How the hell did it become Wednesday? The last I really remember, it was Sunday. Having lunch at Tyson’s Corner mall and book shopping with a girl friend. Then rushing off to help another friend out by watching her baby before we all had a Sunday “family dinner”. I use quotations because only 2 are brothers, another couple is engaged and friends that go back way more than my 5 years of history with the group. It was full of laughter and kids and catching up… Much like a family dinner growing up.

Even more comforting was the pain I got after eating which sent me running for a bathroom. Which has been going in for the most of my life. And the tremendous pain that quickly warmed through my whole body. Settling into the inner portion of my joints. Driving home I felt it hit my hips radiating to my knees. To my lower back to my shoulders and wrists, neck, fingers and ankles. Honestly, it felt normal. I have been living with this paid for over 3 years. Imaging that irritated feeling felt in the back of your neck if you get extremely angry. Now spread it.

Deferred pain versus inflammation of my bone marrow. Awesome. At least that’s what my GI doctor said. Either way, the treatment is the same. Monday’s appointment was planned. I had an attack every 20 minutes for well over 12 straight hours. Leaving me pretty much worst-less until Sunday afternoon.

After some friendly banter with my GI, he flat out said “it’s time we bite the bullet and move to a biologic drug like Remicade”. Clue start of panic attack. After 2 bruised arms due to a nurse who can’t stick a needle if her life was dependent on it, and an allergic reaction to the bandaid used to cover my TB test, it was time to start researching my latest adventure… And boy has that been a party.

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