Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one.
At my most recent infusion, the nurses drew blood for a drug-level check and scheduled me for a follow-up appointment in two weeks. I left with the knowledge that I would likely be getting my infusions upped from every eight weeks to every six, pending insurance approval.
I spent the majority of the time prior to my follow-up pissed off that I had to return–again. It felt like a complete waste of time. No one has been hearing me, they don’t want to listen when I tell them about the blood, the pain, or the headaches and they don’t want to talk layman’s terms with me or give me the full picture. So why the need for a follow-up? As in, why now? Why not a year ago when I came to them with a butt that looked like scar face, or six months ago when I was STILL complaining of fatigue, bleeding, headaches, a leaking bellybutton, and insomnia?
I predicted one of two things would happen: I would show up to learn that insurance, in a random act of benevolence, had approved the request for a dosing switch; or I would show up and leave just as frustrated and defeated as when I arrived.
I never prepared for the third scenario. The one where the nurse decides to shut the door on Remicade. I started this medicine in June of 2014, one thousand three hundred and thirteen days ago. I want more time with it; I want more days.
Why? Well, three and a half years ago I sat in a room with a nurse who advised me of the perils that go along with biologics. If you start a drug and it doesn’t work, you could effectively be cutting years off your life… or so it was presented. It seemed like a last resort, not a spur-of-the-moment whim. With less than a handful of FDA-approved drugs on the market, starting a biologic at 24 wasn’t what I had planned. But, as I said, I was never really given a choice; I picked my pregnancy and never looked back.
I have never regretted the choice I made; in fact, I would do it over and over again. What I do regret is not reading the material and learning the full scope of the medicine. At that point, I was so focused on getting better and going into remission to protect my child, that I never saw a reason to get informed.
Now that I am faced with the daunting realization that I am days away from getting a new med, I wish I had more scientific answers. The only ones I have are emotions and answers of the heart.
I am afraid to risk the decent days I have now for the potential to have more. I’m 27 with two little kids; I am not ready to give up on this drug. I want to run the clock; I can take the 3 or 4 weeks of feeling like crap if that means I can stay on the meds. I want more than anything to see my kids grow up. Maybe that doesn’t make any sense, and maybe the new meds really will give me eight better weeks…but if it were your choice, your kid, would you risk it? Would you risk the manageable for an uncertainty?
All that being said, the nurse told me that meds have come a long way in the three or four years since that appointment. She agreed that yes, they told patients the same thing I was told, and yes that might have been true then. She said, “Things are different now, we have new meds now.” She proceeded to list a few and there was only one or two that I had never heard of. That would have calmed me down, had she not followed it up with the statement that she wanted to give me 12 weeks on the new medicine before she pulled it.
12 weeks?! That hardly seems like enough time! That isn’t even two infusion cycles. How did she go from telling me not to cry, that there are more drugs available, to then talking about killing a second medicine – all in the same breath?
I don’t know what to do. I don’t want to quit this medicine if there is a potential that my low drug level has to do with something else, especially when I don’t have any antibodies. I also don’t want to keep beating a dead horse.
People tell me to do the research, but how? I’m not a doctor, I cannot read half the reports and studies, and the only thing everyone agrees on is that they have no idea how or why this disease affects people differently.
What do I do?
Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one.
When I started Remicade 3.5 years ago, I steeled myself for the possibility that any infusion might be the last. Easy enough in theory; you tell yourself it won’t matter, you have options, that every day on the meds is a unique and blessed opportunity.
What you don’t do, is actually prepare for the day the meds no longer are an option.
Although to be fair, I don’t truly know that Remicade isn’t an option; I don’t actually know much of anything right now.
I walked into my appointment on Friday and before I could even sit down, the nurses had me cornered, telling me no infusion would happen because I had an infection. They asked to see my belly button and explained that my PAC would be in soon to do an exam.
My GI arrived, too. They asked me all sorts of questions: did I have a fever? Chills? What kind of stuff was draining from my belly button and how much?
I can be honest and say…I wasn’t really sure what all I was being asked. I sort of became something outside myself.
The concern: to infuse or not to infuse.
If I do, in fact, have an “infection,” an intracutaneous-something, a pocket or an abscess, the meds could make it worse. If I don’t, well then I’m just playing a game of Risk with my antibodies and myself.
Both the PAC and the GI were insistent on my having an MRI. They actually ordered it STAT. I thought that was only something they glamorized in the movies, and on tv. They wanted me to have a specialized type, MR Enterography. It is a type of imaging used with contrast to get visuals of the small intestine.
The potential pocket is somewhere between the skin and my small bowel.
The Infusion team tried to move heaven and earth to get me seen on Friday. Insurance told them they would call me with an update; however, they didn’t give a timeframe. I live an hour+ away from the clinic and have no cell service at home. Essentially, I couldn’t go home and run the risk of not getting the call. Not to mention, if they were to schedule me, I wouldn’t be able to get there in a timely manner.
Red faced and overwhelmed, I walked myself to the end of the third-floor hallway and sat at the bay window, to wait. To wait, and cry.
I had to try and pull myself together.
One of the nurses found me and asked if I was okay. I tried to explain my predicament without sounding like a miserable burden. A few minutes later, another nurse and my PAC came out to get me. They told me to relax at my infusion chair; It was an incredible display of compassion that gave me a small semblance of dignity.
I had no idea that I would be waiting 7.5 hours.
At no fault to my team, the insurance company wouldn’t play ball. The best they could do was Monday.
This whole “ordeal,” might be a new beginning, but it’s the end too; one I’m not ready for.
I am supposed to be hydrating, but each sip of water burns with what-if’s. I don’t know how to turn my brain off and not stress about the unknown.
I keep going over every worst-case scenario. What if I need surgery? What if I have to spend Christmas in the hospital? What if the infection is really bad, and I knew all along? What if I have to stop taking Remicade? What if…what if…what if.
My sense of validation is being over shadowed by my tangible fear of what might be.
In addition, I didn’t get my infusion. I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry.
I know that it doesn’t matter what the results say, it’s what I do with them that matters.
They love you,
You just don’t love yourself.
Experiences change people. Music, movies, books, religion, culture, likes, and even dislikes; it all plays a part in who you are.
Some of my experiences still embrace me, like a bad dream.
I wake up some mornings and feel the fear of my past. The sting of rejection. The loneliness of heart.
The other day, while getting ready for work I was venting frustrations over the various situations the doctors haven’t been able to fix—mainly—my butt. Not to get overly emotional, but Jon made a comment that seriously pissed me off. Something along the lines of, “The meds helped…you just stopped taking it.”
Okay, the “meds” that worked caused my stomach to cramp up. It fixed one issue (sort of) while forcing other parts of me to stop working. In fact, I was crying in pain and bleeding more than normal during bathroom visits.
I made a choice, not him. Me. So then why does he feel slighted?
The diagnosis came 10, almost 11 years ago. When will people trust that I know and understand my own body? Especially when the disease crashed into me long before that.
I have spent entirely too much of my life being told I was making it up, faking it, or not trying hard enough. Hearing Jon sound like them–all of the people I have fought against–caused a visceral reaction.
Even knowing the depths of his love and his genuine concern, I spent the day in a piss-poor, bitter mood.
No matter how much time has elapsed, I am still that broken little girl. That child, standing in a field outside her parents’ house talking to the cow next door. (I named him Prince and I still think about him from time to time.) He disappeared one day. I have always imagined he was sent off on some great cow adventure. I know better; I have always known better.
“Objects in mirror are closer than they appear.”
I am constantly in a state of unease, worried that any misstep will take me right back. That another surgery, hospital stay, ileostomy bag, or bowel resection is imminent. It hurts to feel this way; to constantly be looking over my shoulder for a danger that exists inside my own body, inside my soul.
I keep hoping that one day I will let it all go. That the walls I have built and fortified will come crashing down. I want the gray clouds of long ago to dissipate. I don’t want to fear the rearview any more.
I want…I want to love myself.
Love myself the way that others do.
This is one of the first moments I have had to let my guard down, to let the silent whispers of my mind ring loud. Infusion days always offer trepidation and a sense of comfort, however odd that may be. These feelings are two sides of the same proverbial coin offering little and giving even less.
I worry. I hate that I worry.
I have been having difficulty swallowing. Nothing outlandish or extremely painful; no fever, chills, or a cough, just a pain when I sip water or attempt to eat. I mentioned it to Jon but I tried not to complain. It probably seems to him that I complain often but I try not to. There never seems to be a point–he can’t fix it or me, so why make us both suffer?
Regardless, I mentioned the pain to my nurses. I don’t exactly have a great track record for my complaints being taken seriously, but I felt like it was important enough to mention. My PA offered to look at my lymph nodes with a light after my drug drip. Her compliance was actually less comforting than I had hoped.
My hand breathes tangible life into the phrase “blind faith.” There is an un-feel-able vein in my hand that has offered IV passage for the past two years. Yet, for some reason (probably because I needed bloodwork) the nurse decided to avoid the golden spot (permanently marked by repeated IVs) and go for the visible and bright vein above. To my knowledge, the useable vain has only failed once–to human error, no less–but I digress. For the record, the big vein failed.
About an hour into a two-and-half- to three-hour treatment I got up to use the restroom. When I looked in the mirror, my eye was red–bright red. I remembered rubbing my eye but I didn’t think much of it at the time. Itchy eyes can be bad news bears during treatment. There is always a risk, an unspoken truth, that any infusion could be the last so I contacted the nurses. One nurse grabbed the PA and together they asked me questions. “Does it hurt to breathe,” do I itch… the questions you would expect to be asked during an allergic reaction. They ran my blood pressure and listened to me breathe. I had driven myself so they didn’t want to administer Benadryl right away. Instead, they turned off my drip and decided to wait a few minutes. My breath sounds were wheezy, but I assumed it was more to do with my lumped throat than anything else.
Fifteen minutes is a long time when you are thinking the worst. What happens now? Is this it? Did I really spend countless hours, pain, heartache, and years for this to be how it ends? What meds are still available and which one can I use after Remicade? Did I start with the medication that can move to any of the other biologicals or did I start with the wrong one? Like a clock hand, my mind spun and spun.
Thankfully, the rest period seemed to do wonders, and they were able to finish out treatment at a reduced drip rate. After the post-drip flush, one of the nurses walked me across the clinic to a patient room with a light and I felt something warm and sticky. It was an odd sensation; not unpleasant, just foreign. Blood. There was a certain beauty, I must admit, to the stark contrast as the bright red bloomed across my pale skin. My already anxious physique became even more so as the nurse helped me wash up. I noticed a mark, one perfect long scratch marring my unmarked arm. Looking more closely, I realized it was tracking along my vein. Thankfully, the mark seemed to ebb away just as quickly as it appeared.
After all of the excitement, the PA looked down my throat and, at my insistence, looked at my belly button. For a while now my belly button has been leaking. Sounds gross because it is gross. I mentioned it months ago to my GI doctor, but he either didn’t hear me or didn’t seem concerned.
I can’t take it anymore. Between the anal wound that won’t heal, the leaking belly button and everything else…I’m tired. I want answers. I want more than a pain prescription and a sympathetic look. I want control, I want my life back.
To avoid recapping the entirety of that experience, I’ll just relay the highlights. Basically, I need to pray for both a viral and a bacterial infection. Viral for my throat and Bacterial for my belly button.
Viral and bacterial, these are the best-case scenarios; the things I beseech.
There is a saying in Latin: “Aequam memento rubus in arduis servare mentem,” which translates to “remember when life’s path is steep to keep your mind even.” I allow myself to get bogged down with all of the things I cannot control, that I forget to breathe. I wear anxiety and fear like a pair of prized earrings. I allow them to hang from me, alter my appearance, and adorn my person. I would like to think I have gotten better, but if anything, I have gotten worse.
How does one go about keeping a level head, anyway?
I have dubbed this month an awful month. There are two concessions: a possible author meet-and-greet and a few days home with family. Otherwise, I am bracing myself for a long and exhausting whirlwind of a month. Week one and two consist of a typical Monday-Wednesday workday, a 7:30am-4:30pm/5-9pm Thursday, and a nine-hour Friday/Saturday. All of this is done with a two-hour-a-day commute. Week three consists of four 10-hour workdays with treatment scheduled Friday, and a 7-hour drive home. Hopefully now that I am on the increased dose, I won’t flat line during week seven (my flex week) and ruin everything; especially given that job performance (I was recently promoted) and a certificate licensing me to be a mediator is on the line.
Jon always asks me why I spread myself so thin, which often leaves me questioning myself: Why do I have an incessant need to be everything to everybody? The only thing I can think of as the answer is maybe if I do enough, say enough, be enough, nobody will see me. The real me.
So, I’ll keep digging and piling more stuff up, piling and piling until I am nothing more than a hand with a shovel. When you look at me, you won’t see the autoimmune. You won’t see the girl with dark circles under her eyes from lack of sleep, the girl who cries in the bathroom after puking, the girl crouched in the corner of the break-room staving off the pain with silent prayers. You won’t see the girl choking down pills or getting bloodwork done every other week.
No. When you look at me, all you’ll see is the piles.
I would like to think I prefer it that way. Keeping everyone at arm’s length has always been my coping mechanism. I believe it easy to romanticize what you don’t understand. As a kid I never felt like anyone believed in me, and in some small measure I know that I will always feel that way. The bad things people say are often the easiest things to postulate in any given sense. That said, I know that I will swim through hellfire to prove everyone wrong about me and with any luck, I’ll prove myself wrong, too. There is nobody in this world that deems me a failure more than me. Hell, my body practically demands it and my reflection offers little more than mockery to the contrary.
I won’t let it win though. The girl, the other me…the disease. I refuse to let them win. I refuse to let them whittle me down to medical charts and unfounded critic. Some days I think Jon and the boys are my hypothetical smelling salt, but that is an unfair burden to place on them. I have seen with my own eyes what that kind of guilt and responsibility can do to a person. It is too much, a Herculean task of epic proportions.
I don’t know how or when, but someday…someday I will rise above.
The proof is in the pudding. Did you know that proverb actually has a second part to it? William Camden said “All the proof of a pudding is in the eating.” The full quote changes the meaning, but I like the original. To relate, all the proof of an invisible illness is in the experiencing.
Since you cannot experience this for yourself (not that I would wish that on anyone), I am going to paint you a picture. Bear with me if you can; I am about to show my underbelly.
Saturday I woke up with a headache. It happens; it sucks, but I’ve learned ways to handle it and move on. This headache though wasn’t going away. If anything, all of my attempts to alleviate the pain seemed to make it worse. It didn’t seem influenced by sound or light, it just hurt. A radiating pain of the searingly hot variety. I tried to hang but I was snappy and agitated. My brother took the kids so I could try and nap it off. Mind you, internally I was wondering if it had anything to do with my recent blood test/results. Then again, my internal mode is always set to “over-anxious anxiety.”
By the late evening I knew I needed to get up and handle my adult life, but what I did instead was move all of my stuff (Hydro Flask, blanket, Netflix DVD, and phone) from the bedroom to the downstairs couch. Which–for the record–I totally counted as a win. I was up, I was moving, and I was in relative proximity to my brood. Then my stomach started rolling. I felt feverish and the headache was still unrelenting. In the span of a few minutes, my temperature soared, as did my anxiety.
I climbed the stairs and managed to get to the toilet. However, all I could do was crouch down and cry; deep, can’t-breathe-screams-of-agony intermixed with wails of true debilitating despair. I had no idea what my intent was when I got up, but I was driven to move toward the bedroom and when I got there I collapsed on the bed, still screaming and crying. In the background I could hear the boys asking what was wrong with mommy.
I see Jon start to transition from no idea what is going on to action mode. He immediately starts asking me what is wrong, what hurts, and then telling me to take deep breaths. At this point, my entire body was on fire and my head was hurting so bad I was literally wishing it would just explode. My breaths were coming more aggressively making it harder for me to breathe. “Deep breath, deep breath, deep breath,” Jon just kept repeating it over and over, telling me I needed to breathe in and take slow breaths out.
It took a while. The snot was pouring down my face and mixing with my tears making it hard to see, but eventually Jon calmed me enough and I was able to explain that it hurt to breathe, my head was pounding and I couldn’t regulate my temperature.
Jon had me strip down and get into the purposefully freezing cold water of the shower. I was still in pain, probably screaming (and just as likely crying), so I hunkered down on all fours and just shook as the water beat down on my skin. At first the water was nice but then the coldness seeped into my bones, making me shiver in new ways. I tried heating the water but Jon turned it back to cold and told me to drink the cup of Pedialyte. My hair was sopping wet, my face was covered in snot, tears, and drool, and I was doing everything in my power to handle the shock my system was experiencing. I can’t tell you how short or long the “shower” lasted, but I can tell you it felt like an eternity. Jon helped me out of the tub, wrapped me in a towel and held me while I cried into his chest. He whispered, “I won’t let anything happen to you.” I know it sounds crazy, but I believed him. I knew, even while everything was happening, that he truly had only my best interest at heart. He is the one person in the world that has seen the deeply scarred and damaged parts of my soul and still wants to help heal the ugly.
You might think that’s the end of my episode; I mean really, how much can one person handle? But no. After I was dried off, Jon helped get me into bed. He said he shocked my system and I needed to let my core temperature return to normal naturally or all of that would have been for nothing, so I sipped at more Pedialyte (nasty-awful-salty-sweet drink) and tried to keep my shivering to a minimum. (Difficult to do with wet hair, no clothes and a fan on, but I was doing my best to let my body reset.) The headache was thumping terribly, but I was just happy to have stopped crying. Jon was dabbing at my head with a wet washcloth and mother-henning me in the best way possible.
Extreme dehydration sucks.
After my temp started to come back up, and the sips of water seemed to go down smoother, Jon laid down to sleep. Did I mention I hadn’t eaten much since dinner Friday night? Because, other than a few rolls, I don’t know that I ate anything. Which is only truly relevant when I talk about the puking. Oh my gosh, the puking. Basically, it was one extreme to the next, all the while my head was pounding away. It seemed the more I drank, the more I puked. If I took slow sips I would get too impatient with pain and worry and would try to over compensate.
All night, I sipped, I oiled, I medicated, and I even applied Icy-Hot. By morning, I knew Sunday would be a lost day and by that night I knew I would need to call out of work (something I try never to do). I think the part I am struggling with the most is that the kids had to witness the meltdown. I know they are young but I want them to stay young, stay innocent and full of life, spirit, and imagination. I don’t want my illness or my actions to take away from them the innocence of what childhood should be.
Can you relate? Can you see the image of what this illness is? If so, I am sorry.
“How do you feel about this?”
Seems like an easy enough question, right? Maybe for some, but not for me. I have no idea how I feel–about anything–ever. In fact, I believe you would need to dig up Freud himself to figure out my idiosyncrasies. By now you’re probably wondering, what on earth I am talking about.
Friday afternoon I started having pain. Not the collapse-onto-the-floor-in-fetal-position pain, but the “maybe if I snap a rubber band or hunch slightly no one will notice my Kujo grimace” pain. In typical working-mother fashion, I pushed through. It was a Friday after all and I had the whole weekend to deal with it. The pain progressed most of the afternoon and far enough into the evening that I mentioned it (in a rather whiny form, if I do say so) to Jon. He said the right things and hugged me long enough that I felt infused with the ability to endure.
Saturday night, after a relatively calm day without the pain from the prior evening, I went to the bathroom. Blood. Lots of it. Enough that I asked Jon to come look. (For those who don’t know, Jon–to put it mildly–is a weak-stomached wimp when it comes to blood.) He asked if I wanted to go to urgent care. I knew he had to be up at 3 AM for work, but I also knew that if I wanted to go, If I wanted to load into the car, drive the hour-plus commute to the clinic, wait in the germy cesspool, get poked, prodded, and left wanting, he would.
While you are probably wondering why his work schedule crossed my mind… it was less of a factor and more of an excuse. Because if you need medical attention, you need medical attention, am I right? Don’t get me wrong, seeing the blood…seeing how much more there was than normal shook me. It made me break down into tears and clutch Jon while I mentally reverted back to my 13-year-old mindset. More then anything though, it made me angry. As I have mentioned before, one of the hardest parts to this illness isn’t the pain, it’s the mental/emotional stuff. I constantly feel like I need to prove myself–or rather my sickness–to others. To my doctors, to my co-workers, and even to my family.
This disease is one never-ending loop of Aesop’s fable, “The Boy Who Cried Wolf.” Sadly, there really isn’t anything I can do about it either; not any more than I already am. I know being upset about the things I am going through serves no purpose, but I also know that bad things happen when I keep all of my feelings inside. I want to be able to express my fears and emotions without having to look away or without crying.
Sunday had me in bed all day with a headache of migraine proportions, so I decided to send a portal to my Digestive Health Clinic asking for advice. Can you guess what they want? More blood work! Ever the pin cushion, I will be heading to the lab tomorrow. Side note, I wonder how much blood I have given over the years… heck over this year? I don’t really know what they are looking for, but hopefully it will result in some sort of light-bulb moment that will help with my on-again/off-again flairs. I could live without having another day like today.
When I told Jon what the clinic suggested he asked how I felt about it. Since life isn’t multiple choice, I guess I feel unsteady. I want there to be something wrong–even if it’s the smallest sliver of something–so I can feel validated; so I can scoff and groan about the time and energy I wasted. I also want this to be a flair, but I hate, HATE that as an answer. It isn’t acceptable anymore.
Wish me luck.
This pill struggle has reminded me of some stuff that I haven’t thought of in years. When I was a kid I had this fictitious boyfriend named Harry. He was the heir to the Bayer Aspirin throne. Yes, I really planned out my life with Harry Bayer-Aspirin.
I believed, as Cassandra Clare wrote, “to love was to destroy.”
I have since found the error in my adolescent way of thinking, but not without my own struggles. I lived in a world of books and fantasy. I imagined Harry would come to me, armed with bags of aspirin and offer to fix me. In those days, I had no clue what was wrong with me; no diagnosis, not even people who believed me. The doctors couldn’t figure it out and my parents wanted me to attend therapy. I felt alone. Despite my feelings, I was still young enough to believe in the magic of the world.
One of the times I was in the hospital I had a room with a view of a seemingly forgotten street. It was early March so the air was chilly and left visible plumes of white frosted puffs. In the center of my window frame sat a street light. For days I watched this abandoned road light turn from yellow, to red, to green. It was the only constant thought in my head; it was my first taste of metamorphosis. I go back to this memory from time to time, often when I’m scared or frustrated. The light is a symbol: even without cars, the light keeps changing. The world keeps going, and I should, too.
The last few infusions have rewarded me with giant headaches almost immediately after the drip starts, so I have started to come prepared with Ibuprofen and bottled water. Thanks to my mother-in-law who came with me last time, I realized that actually eating something during the infusion helps, too. Seems like a common sense thing, but I never thought to bring much more than crackers.
Yesterday, because my infusion time was earlier and the clinic is an hour and a half away, I decided to leave with plenty of time to spare. When I neared the clinic, I realized I had an over-abundance of time, so I looped around to wait in line for Starbucks. Starbucks is actually my least favorite coffee place; it feels uppity and disingenuous to me, but I love their sandwiches and I only wanted a small coffee anyway.
I guess even they figured it would look the same this time around because they didn’t do an exam. Instead, they told me how they want me to take pills on a more regular basis. Codeine. A Tylenol-Codeine hybrid, but codeine all the same. I have avoided taking addicting pain pills on a long-term basis for practically my entire diagnosed life. It might seem insane, but I am frustrated and legitimately worried about starting these pills.
The doctor or PA usually make their rounds right away while the nurses schedule the next treatment, verify the med list, take vitals, and then close the curtain and let me be. This is usually when I become inundated with emotion. I try to sleep the experience away but with the burning IV site, pounding headache, worn down body, and overwhelmed brain, I usually cannot sleep. Not until I get home anyway. I always seem to power through the IV flush, hit a second wind for the travel home, and then crash like a crazed new parent minutes after getting back. The headache usually persists until the next day, sometimes even the day after that.
The worst part about infusion day and the day after is the absolute lack of energy I have. Between the headaches and the fatigue I have a hard time wanting to leave my room. Jon and my brother do a good job holding down the fort so that I can try and relax. Naturally the guilt-ridden anxiety overwhelms me and I try to take on more than I should. Sometimes it’s just a donut run with the boys or a load of laundry…but it takes it’s toll all the same.
Despite all of that, I am grateful. Amidst the darkness and 900 MG Remicade-induced despair, I see hope.