October 28 2017

Viral & Bacterial

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.
IMG_4058
 
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?
 
 

October 16 2017

Practice Makes Permanent

These previous twelve days have passed in a blurry haze of rawness, exhaustion, and giving it my all. Tomorrow, if everything goes according to plan, I will have completed my 40-hour mediation training and will have taken a huge step in the process/commitment of becoming a state-certified mediator. The entire journey seems a little daunting, but I feel like I am making steps in the right direction. One of the things I was recently discussing with friends is how someone with a chronic illness is always forward-focused. Not to say we don’t linger and get stuck on the past, but rather that we always plan and think with our future in mind.
To explain further, Jon and I recently bought a car. We have talked about it for months, almost a year, actually. We wanted something weather appropriate, full family seating capacity, decent gas mileage, and with more of a physical appeal than, say, a mini-van. Although we had talked ourselves around and around, I was afraid of committing. I tried to explain to him that I spend 90% of my life in fear that I will wake up at home and fall asleep in a hospital. I continued on to say that I worry about what a poorly timed flair would do to our already tenuous financial stability, I worry about losing my job, and I worry about the insurance company making good on their threats to discontinue my treatment.
Naturally, Jon didn’t get it. I wouldn’t say he didn’t understand, he just couldn’t relate…which is actually part of why we work so well together as a couple. He is fun and lively; he forces me to live life and take it less seriously. Alternatively, my side of the relationship coin is to show him stability and the strengths of being prepared.
To steer back to my original and very convoluted story, I am excited about mediation presently, but also in looking at how it could potentially shape my future. If things take a turn medically, or the treatment stops being effective, and I have to quit working, becoming a mediator will allow me to work intermittently. Maybe not enough to support a household, but enough to bring a little something to the table without feeling like the burden I imagine I would become.
Mediation is tough and it takes real work. It guts you, it is emotional, and it is raw. A topic that I have heard repeatedly is that as a mediator you are not striving for perfection, but a sense of ‘good enough.’ It was framed as, Practice makes permanent. It really got me thinking about how I treat myself. I have always been extremely hard on myself, never feeling good enough, and never feeling like I belonged. Good enough though? Absolutely. I am not the best Suzy Homemaker that I wish I could be for the kids, but I realized that as a mom, I am good enough.
I often think that Jon could have fallen in love with anyone, but that he stayed or settled with me. Yet, that “good enough” thing got me introspective. I am good enough.
I am good enough. I need to let that sink in. I am a good mom, a good wife, and I have a good life.
Maybe I am not perfect, hell maybe I never will be, but I am good enough and that is okay with me.

October 1 2017

Rise Above

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.