Infusion Part Two

I feel this unearthly tumultuous dread prior to an infusion. ‘Did I drink enough water? Will they get the IV on the first try? Will my vein blow if they try to take blood samples? Will this be the infusion that causes an allergic reaction? What news will the PA offer up this time? And what medications will they prescribe?’
 

I am a very hard stick so they usually go through my hand with the smallest butterfly needle they have. Fun fact, hand IVs can be more sensitive–something about innervation. Once the IV goes in, I can usually feel an uncomfortable sting-like sensation throughout my entire infusion, yet my arm is always cold to the touch. I don’t know about everyone else, but I can taste the saline. I have always found comfort in this. Maybe that’s odd, given the nature…but to me, it has always symbolized success.
 
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.
 

Why uppity? Well, I couldn’t remember the stupid coffee size names, and I wanted to feel like I belonged, so instead of saying small I said venti. I am aware now of how wrong that was. See, the only two sizes I could remember were grande and venti, for obvious reasons (to me), I assumed venti would be smaller than grande. Lesson learned.
 

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I checked in, laughed with the receptionist about my coffee blunder and made it to the chair without much incident. IV was managed on the first try (thank you permanent needle marks) and as the first patient of the day I got the coveted chair near the bathroom, score! This is when the interrogation started. (It feels interrogation like, anyway.) I know the nurses and PA are only doing their job, I just hate feeling like the kid on a stool in the corner with a dunce cap on. I hate feeling like my feelings and emotions aren’t enough to combat their often-times robotic and medically inclined attitude.
 

For almost a year now, I have had an anal wound that won’t heal. At this point I have pretty much tried everything and nothing seems to be working….to which they are constantly wanting to do rectal exams. Yeah okay, you are trying to make me feel better, and yeah okay it helps to know how the area is or isn’t healing, but come on. Just because you know me better from behind doesn’t mean I want a constant stream of exams.
 

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.

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Infusion Week

I think of this blog as my safe space, as my place to vent and share my frustrations. I know I am lucky, extremely lucky. I also know sometimes I can come off as ungrateful or like I take things for granted which is never my intent. That being said…let’s talk about pre-infusion week!
I get Remicade by IV every eight weeks. Maybe it should be every seven or even every six, but eight weeks is what the insurance approved. (Or will be approving…I am still unsure how all the insurance stuff will pan out. I received another letter about another bill they wouldn’t cover, but that can be talked about some other time, or never; I am good with never.)
In my job I get eight hours of sick leave for every full month worked. Despite treatment being every other month, I always seemed to be burning leave as fast as I was getting it–which in turn was stressing me out and making me go to work on days I probably should have just stayed home. It created a horrible ripple effect spanning all aspects of my life.
After a few chats with my Administrator we worked out a flex-week plan. The week leading up to my infusions, I can work a full 40 hours in 4 days and have my infusion on the 5th day. Sounds too good to be true… probably because it is.
The point was I would get my full 40 hours of work, not have to use sick leave, and have the weekend to recoup from treatment. Here’s the rub: I also commute two hours a day. A typical 8-5 is actually 6:30am-6:15pm (on a good traffic day). In order to make a 10-hour day work, it turns into 5:30am-7:15pm. Then factor in the other aspects of my life (forgetting for a moment the source of all the hub-bub): laundry, dishes, dinner, time with my kids, or hey…even just a shower.
Moment over, now add in a chronic illness and all the baggage that comes along with it for good measure: insomnia, pain, fatigue, muscle aches, nausea, headaches, and my favorite–brain fog. In order to get into my work area, I have to go through a door with a card reader and then a door with a keypad. Naturally, the brain fog kicked in this morning and for the life of me I couldn’t remember the code. At every error my anxiety grew. As my anxiety grew, my irrational and fogged brain whirred away. I kept hearing “2319” (the CDA code from Monsters, Inc.), and feared one of the sheriffs from the next office would come out. Like I said, irrational! I was mostly panicked that I would be stuck waiting the 45+ minutes for someone to show up and let me in, meaning I would have to stay an extra 45 minutes. Thankfully though, I closed my eyes and let muscle memory guide me. I knew the information, I just needed to slow my breathing and let my brain focus.
If you aren’t familiar, the week prior to infusions is basically one week of withdrawal hell. I get moody, irritable, anxious, and incredibly emotional. In order to fulfill all of my personal and professional obligations I have to minimize other things… the things I would usually consider a luxury as a working parent: reading, taking a bath, or even sleep–I can just forget about it.
Insomnia is its own hell. It forces you to lay awake in a pool of resentment, drowning in your mind. For me, my senses get heightened. The air from the fan feels colder, the sound of Jon’s breathing seems deeper, and the darkened space of my room seems darker. The possibility of sleep lingers just barely out of reach.
I survive hell week on caffeine and crackers. A down-right horrible combination. A fact I am reminded of at the clinic, when despite my best efforts to drink more water for optimum hydration, it still isn’t enough to dilute the excessive caffeine.
Despite my personal trepidation, I am thankful for the creepy sleep station in the building next door. The small room is made up for resting; it is a small room without a lock that has an old, school-nurse-style bed. Although the room is “secretly” located inside the women’s restroom, I am still anxious to fall asleep. It doesn’t help that the foot traffic is heavy and it constantly feels and sounds like someone is going to burst in at any moment. Yet…the room is a necessary evil. Power naps are sometimes the only way I get through infusion week!
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I only have one day left until treatment! Thank gosh. This week seems harder than all of the previous infusion weeks.
Hope

Judgment

Why do people feel they have a right to pass judgement? They can call it whatever they want–concern, curiosity, or even apprehension–but a spade is still a spade. Everyone has an opinion; I am not suggesting people stop thinking for themselves, merely that people stop expressing their feelings with such obvious maneuvers. To be frank, I have a hard enough time making and dealing with the choices my illness requires of me without other people’s scrutiny.
I am not a stranger to odd looks and unsolicited advice, but I have a hard time when these situations come from unexpected places or even people who I thought understood. So then how do we handle this?
Judge
Normally I internalize, over-analyze, and stress the issue until I’ve almost forgotten reality. Lately though, it has been too much. I am tired of shouldering the burden of everyone else. I am tired of protecting others, protecting their feelings, and making myself small so they can shine bright.
I recently read a blog that quoted Juvenal, “Sed quis cutodeit ipsos custodies”–Latin for “But who is to guard the guards themselves?” Maybe this makes me sound arrogant, but I try so hard to protect everyone in my life from the true reality of my pain that I often wonder who is protecting me?
It makes me think of that scene from My Best Friend’s Wedding: Julia Roberts is on the phone with her friend George explaining that she is chasing Dermot Mulroney’s character, who is chasing Cameron Diaz. During the call George asks, “Who’s chasing you…nobody, get it?”
I am appealing to anyone who understands: How do I handle it? How do I go on acting like the things people say about me don’t hurt or bother me? How do I get a thicker skin? How do I stop caring so much about what others think?

Letter to my Surgeon

After years of hemming and hawing, I finally sat down and wrote a letter to my surgeon. I am sealing the envelope tonight and mailing it off tomorrow! I don’t know if he will respond or if he will even see it, but it is a thank you that needed to be said.

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Dear Dr. Ahmad:

You might not remember me, but I was a patient of yours in 2010-2011. I was referred to you after months of battling a flair like I had never experienced before. I was a 20-year-old kid who felt alone and lost in this giant world, without so much as a road map to guide me.

I remember our first visit in waves; never in full focus or with much clarity. You wanted to perform surgery and give me a temporary ostomy. I was scared–but not of dying–at least I don’t think. I was scared of what happened if I survived. I know that probably sounds crazy, but it’s as close to the truth as I can surmise.

To this day I don’t know what compelled you, but you offered your surgery pro-bono. You saved my life. I’ll be honest though, I hated every minute of that bag. I remember feeling powerless. I remember the bag leaks and the shame l felt, like it was yesterday. You were true to your word though, and it was temporary. So temporary in fact, that I never truly got to appreciate what that first surgery meant. I was so focused on what I had lost, what was taken from me, that I never stopped to think about what I had gained: faith. Faith not in God but in science and in humanity.

I have spent the last six years trying to write this letter to you. I think I have never felt worthy, like the things I have accomplished were not enough to make you proud or happy that you went through all the effort. I might not ever be the model patient, or save the world, but for the first time in my life I am proud of me and I have you to thank for that. I have you to thank for everything. They say a picture is worth a thousand words, so I have included some pictures of the things that I am proud of. Things I was only able to do and achieve because of you.

After surgery, I re-connected with a boy I knew in second grade. A boy I fell in love with and married. That deep-in-your-soul, shout-it-from-the-roof-top, write-a-sonnet love, that I thought only existed in fairytales and Hollywood. After being told I would never have kids, I had two. Two crazy, full-of-energy, wily, smart, and handsome little boys. I went to college, graduated with an Associate’s before deciding to go back for a Bachelor’s. I even bought a house and started a career. I have lived and continue to live well. The hard times are surrounded by the good times, and I know I owe my success and family to you.

So thank you, truly.

Respectfully,

Kayla Lauer

Wolf in Sheep’s Clothing

I have never been some starry-eyed waif waiting to be saved. In fact, I pride myself on being a fiercely independent gale-force wind. Maybe that’s reaching, but I definitely have enough wind in my sails to slam a door closed. When a problem presents itself that I truly sense I am unable to contain on my own, I feel like a failure of epic proportions.
Insurance: a true wolf in sheep’s clothing. wolf
In life we all have dreams; it’s one of the big things we all have in common. Our blood hums with possibility, determination, and grit. “Strive for greatness,” “Never give up,” and “What the mind can conceive, it can achieve” are all platitudes people tell you to ‘encourage’ you to keep on keeping on. Well, my dreams have changed a lot over the years. In wild and drastic measures, no less. My dream for the last almost five years? To live long enough to watch my boys graduate. I have other dreams, too, of course; I want to see them fall in love, find passion, and be whoever they are in their bones. I want to be around for them, I want to be healthy, and capable.
I am saying all of this because of a letter I received from my insurance company. An unprompted letter of rejection regarding my current medicine, Remicade. (Now, before I go further I should mention, I think the letter has been handled. You can mark me down as skeptical, but I have to trust that it’ll all work out.)

Be that as it may, I went into a full-on panic of epic proportions. This cold sweat engulfed me like a surfer in the ocean. I could even taste the salt but that might have been my own tears. All I kept thinking about was why? Is the Board in charge of making decisions regarding my health going to be in the stands of whatever sport my children inevitably play? Are they going to take up a collection plate on Sunday or work a 9-5 to pay my bills? Are they willing to be available for the skinned knees, lost action figures, and the myriad of other things that go along with being a parent? Or what about the duties of running a household: laundry, dishes, and budgeting? What about Jon? Are they going to do all of the things that I do, when I lose the ability to do them because they aren’t willing to pay for the medication that keeps me functioning?
I also kept thinking about what it would mean to lose the insurance coverage. I am fortunate to have found a man willing to stand beside me no matter the cost. He would pay out of pocket without blinking. He would try and right the wrong in whatever way he could. He would be willing… but I wouldn’t. How could I knowingly throw a rock into our family pond and sit idly by while the ripples messed with everyone I love and care about?
I don’t know a term for what I feel; I would describe it as the chronically ill guilt, I guess. I feel guilty every waking moment. Guilty that I don’t do enough, say enough, and work enough, or know enough. Guilt that I cost financially and emotionally, sometimes more than we have. I am only human after all.
Some nights I lay awake watching the fan spin above me and listen to Jon breathe. I know I am one of the lucky ones. I have so much in life to be thankful for and I am. Yet, that never stops the anxiety from creeping in; the dread of what tomorrow might bring.
All of this has made me question my goals in life. I thought I had it all figured out, I thought I went to school to follow a passion, but now I wonder if maybe I should go back. I think I could do some real good for people like me, maybe grant writing or something within a non-profit. Anything to not feel so powerless.