The Clean Kitchen Effect

A Full Sink and Empty Promises

Depression is a sly opportunist. She usually shows up when I’m in pain, fatigued, and vulnerable. When I’m feeling this way, activities of daily living seem impossible. Depression recognizes this and is eager to offer her assistance. She knows one of the last things I want to do at the end of the day is tackle a sink full of dishes. She’ll softly whisper in my ear, “No worries, we’ll get this in the morning.”

Morning will come and a trashed kitchen is one of the first things I see. Looking at it weighs me down as if I’m wrapped in a wet blanket. I let out a sigh of exasperation, grab a cup of coffee and head back upstairs; Depression reassures me, “It’s OK, we’ll get to it later; we have all day!"

All of the sudden it’s 5:00 pm. My husband is home from work and the kitchen looks the same as when he left in the morning. I cringe when he asks, “What’s our plan for dinner?”

Self-Care(less)

A few months ago, I started noticing other pieces of my life with the “I’ll get to it later” label, glamorous activities such as filling my pill case, flossing, and changing the sheets. Depression had tricked me into task avoidance under the guise of “self-care”; “You need rest, that’s all, and in a few days you’ll be fine.” If only that were true; Depression has no concept of time.

While Depression and I were “taking it easy”, the mess in the kitchen grew until every dish and pot I own was either in the sink or piled up on the counter. My pill case became a big question mark. God only knows the last time I flossed! I knew I couldn’t continue like this but Depression had a way of convincing me she knew best. Her “do nothing” attitude was so seductive and I went along with her antics, until I was so suppressed, so overwhelmed, I was paralyzed. This is when Depression almost won. She was content and I was the perfect host.

“You’ve got to do it, every little bit.” -Fred Rogers

 It only takes 15 minutes to unload the dishwasher; it takes less than 5 minutes to fill my pill case. “What the hell was wrong with me that I couldn’t find the time to get these done!?” “Why couldn’t these simple tasks be seen as self-care?” Depression had no answers. She was happy to lay around, oblivious to the shit storm swirling around her, watching soaps whilst eating cake. Then it hit me, Depression thrives on inactivity.  I knew what I had to do and I knew where to start.

I made a deal with myself (and my therapist) that I wouldn’t retire for the evening until my kitchen was clean. And that’s what I’ve been doing, every night. It was hard work at first but soon it became habit. My clean kitchen has inspired me to take charge of other areas of my life as well. Pill case is full every Sunday afternoon and sheets are fresh! Flossing is still a work in progress (no one’s perfect.)

Depression eventually got the message I would no longer be available and little by little she crept back into the shadows. It is possible she’ll come back and that’s OK. My awareness of her presence has improved and I know her desires. The best part is, I have gained a better understanding of myself and what I need to be satisfied; I guess I can thank her for that.

Seeing a pristine kitchen first thing sets a positive tone for the day!

The Medical Mystery Tour

Living with a handful of chronic illnesses means living a life of adventure; I never know what the day will bring! A purple spot on my shin could be a simple bruise, the beginnings of a Crohn’s flare, or something sinister such as an adverse reaction to a medication.  Trying to solve the mystery can feel like I’m in the movie “National Treasure”, constantly on the run, chasing clues hoping the next one will be the last.

The Eyes Have It

One of my most puzzling chases involves the health of my eyes. It was a case of papilledema (swollen optic nerve) that led to my brain tumor diagnosis some 23 years ago. Changes in the tumor led to a craniotomy, and post-op monitoring ultimately led to a diagnosis of Neurofibromatosis 1 (NF1). Because of all the whoop-dee-doo with my eyes, I see an ophthalmologist every year for visual field (VF) testing. A super fun test where you sit in front of a white dome and with one eye covered, focus on a target at the center and press a button every time a little dot of light appears in the periphery.

Doctor 1

Five years ago, my ophthalmologist noticed a “progression” on my left optic nerve (compared to previous tests) and kicked me up the food chain to a neuro-ophthalmologist for a second opinion; her concern? Optic nerve glioma (a benign brain tumor that grows on the nerves that carry vision from the eyes to the brain; they are found in approximately one in five children with NF1.

Doctor 2

Although he was pleasant enough, he blew through the testing super quick. He concluded the abnormality to be scar tissue from years of inflammation and not a glioma. He asked me to come back in six months.

Six months later and the VF were stable, he told me I didn’t need his services and could follow with Doctor 1 in a year. I told him I was under the impression Doctor 1 was signing off. He said he would put it all in his note to her. I drove home in a cloud of relief and frustration.

Doctor 3

A year goes by and as fate would have it, Doctor 1 had retired, cue Doctor 3. He expressed the same concerns regarding the glioma possibility. He gave me the “repeat in six months” order. Six months go by, tests are repeated, results are stable but concern loomed; he suggested I speak with whoever I see for NF to find out what they would recommend. Fair enough.

Doctor 4

The appointment for the neurologist didn’t go as I had hoped. Because I’m an adult with a “mild case” of NF (their words) they scheduled me to see a PA and not the neurologist. The PA hadn’t even viewed my test results prior to my appointment. Even though I felt she was totally unprepared for my visit, I asked anyway – “Does the clinic work closely with any ophthalmologists that are well versed in NF gliomas?” Answer-“No one in particular.” UGH!

Back to Doctor 3

Ah my optic nerve, stable yet still peculiar! He said he’d feel better if I saw a neuro-ophthalmologist. I reminded him Doctor 2 doesn’t want me and the neurologist was a dead end. He agreed and referred me to The Wilmer Eye Clinic at Hopkins.

It was at this point, I froze. I worked myself  into a nice lather, what if I needed surgery? What if I lose my sight? Then I got mad at NF; for such a “mild case” you sure are a big pain in the arse! I hung the referral slip on the bulletin board above my desk; I’d look at it every day and tell myself, “I’ll call tomorrow.” Seven months later, I made the call.

Doctor 5

Expectations exceeded! She read my chart prior to my visit; she even viewed my old MRI films. And she knew all about NF. She ordered an MRI of my optic nerve, said no rush and to come back to see her in 1 year.

I asked if I should still see Doctor 3. She replied, “I’m not trying to steal you away but, this is what I do.” I realize now how peculiar my question must have seemed but she had no idea of the road I had traveled to find her!

Pay Dirt

Five years and five doctors later, I found a great one and I know I am in capable hands. I almost gave up but my health is my job, my mission. And while I still don’t know if the abnormality on my left optic nerve is a glioma or not, I can honestly say I don’t dwell on it. Sometimes it is less about finding answers and more about finding a doctor-patient relationship that clicks.