Come Fly with Me

Months had passed since I’d had pneumonia. I’d generally been feeling well. I’d applied for and received a promotion with the supermarket and was overwhelmed with excitement. I would be relocating to San Antonio, TX to fulfill a new role as an art director in March 2012.

The first order of business was to inform my new creative director of a previously planned trip that I’d already purchased plane tickets for. My BFF and I were traveling to meet friends in Atlanta for her birthday in April.

The trip was amazing. We had a lot of late nights and endless partying! I even had the opportunity to see my first NBA game (Charlotte Bobcats vs. Memphis Grizzlies) in Charlotte, NC. I met my husband back in Atlanta where we attended the Jones vs. Evans UFC event. The following day, we had brunch at Gladys Night’s restaurant (best shrimp and grits EVER!) and walked around downtown. To my dismay, the sharp pain behind my lung returned with a vengeance. I pulled out my rescue inhaler in an attempt to stave off the onslaught and continue our sight-seeing. After about 15 minutes, I waved my white flag and my husband called a cab to take us back to the hotel.

My return flight later the same day was awful. I felt a migraine coming on mid-flight from Atlanta to Austin. I took my Maxalt and crossed my fingers that I wouldn’t become nauseous on the plane. I started feeling like I was catching the flu. My neck was stiff and achy and I started to worry. My flight landed and I went straight home and got in bed. The following morning, it was back again… I couldn’t move. Absolutely everything hurt from my neck to my toes, and given my past history with these flares, there was no way I could make it to work the rest of the week (an 86 mile commute since I hadn’t relocated yet). I phoned my office to let them know I was experiencing a fibromyalgia flare and wouldn’t be in to the office for a couple days.
When I did return to work later that week, my joints still ached so badly I could barely walk. It was as though every joint in my feet was screaming. I started to ponder the idea that elevation and cabin pressure potentially had some ill effect on my body, exacerbating my odd symptoms.

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My BFF and Me at the Bobcats vs. Grizzlies Game

“Friends are angels who lift our feet when our own wings have trouble remembering how to fly.”
—Unknown

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Let Me Catch My Breath

As I mentioned in a previous post (In the Beginning pt. 1) I was diagnosed with adult onset asthma. In July 2011 I’d gotten a part-time job with a local specialty supermarket in order to supplement my freelance art career. To date, this was the best company I’d ever worked for and I absolutely loved my job… But I digress.

I was an in-house artist, creating handmade, hand painted signage for the store. This job combined the best of both worlds when it came to painting and sculpture. One of the materials we used for the signs was Owens-Corning pink insulation boards- something similar to styrofoam, minus the beading on the interior. We would cut shapes out of this material with box cutters or x-acto knives, then sand the edges down with sand paper. I really didn’t think twice about the mess it made or the particulate matter in the air. Likewise when it came to adhesive sprays, like 3M77, which I’d used during my entire college career. I’d always used the adhesive sprays outdoors or in ventilated areas- my boss, apparently, hadn’t.

During my second or third week of working there, I developed a nagging cough and chest tightness I’d learned to associate with my “asthma”. I’d taken an extra inhaler to keep in my desk drawer in the office and wound up needing it by Saturday. I felt awful Saturday, but pushed through the day. I didn’t want to make a bad first impression by leaving early, plus I had Sunday off.

Sunday, my husband and I are sitting at the Coffee Bean and Tea Leaf having breakfast and studying (for his Bachelor’s and my Master’s). I immediately felt hot and faint, then thought I was going to vomit. I told him I needed to go home and lie down right away. We gathered our computers and left. When I got home, I called work and let then know I wouldn’t be in the next day because I couldn’t get my asthma under control and needed to go to the doctor.

Around 2AM I rolled over in bed, heard and felt a swish in my chest cavity. I rolled back in the opposite direction and the exact same thing happened. I held my hand over my left lung and felt rattling with every breath I took. That’s when it dawned on me that I had pneumonia.

The Truth is Somewhere in the Middle

Cymbalta was working well. I experienced a marked decrease in daily aches. There were no major flare-ups like the Thanksgiving episode and I chalked it up to over exerting myself and walking barefoot on a cold concrete floor.

January 2011 rolls around and once again, I find myself with a new onset of strange symptoms. My daughter had taken in a stray cat who subsequently gave birth to three kittens in my garage. I’ve suffered a barrage of cat scratches in my day. No big deal, right? Soap and water, peroxide, neosporin and a band-aid usually get the job done. But this time was different.

Within two days, a tiny scratch resembling a paper cut had begun to fester, turning into an open ulcerated sore on my right middle finger. The pain radiated up my hand and arm. I continued rubbing neosporin and by the end of the second day, noticed a bright red streak creeping its way up my arm, originating from the sore on my finger. My arm was hot and tender, but not swollen. I sat down at my computer and googled “painful red streak going up arm” and was shocked to read GO IMMEDIATELY TO THE NEAREST ER in bold red letters. I read further that I was experiencing septic symptoms and if the infamous red streak reached my armpit, I could DIE within hours. Remarkably, I’d lost my favorite aunt the previous January to complications from septic shock. I knew the implications were real.

I took Google at its word and headed straight to the ER. After waiting an hour and a half in the crowded ER waiting room, I went to the restroom to examine the red streak in the mirror and determine if it was still moving. Sure enough, it was. I went to the ER check-in window and showed the nurse my arm. I explained that I’d been waiting over an hour to be seen and the streak is growing at a rapid pace up my arm. Apparently I wasn’t clear about this on my check-in paperwork, or perhaps she didn’t bother to really read it, but once she saw my arm, the look on her face was priceless. “Wait here!” She jumped up and a triage nurse immediately called me back to a room.

Within 30 minutes I was on IV Vancomycin (which felt like a river of fire running through my veins) and admitted to the hospital… again. This time with septic cellulitis.

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“‘Tis but a scratch’, ‘A scratch?! Your arm’s off!’, ‘No, it isn’t.’.”
— Monty Python

Genesis: In the Beginning pt. 2

After months of recuperation I began renovating a family rent house for my kids and myself. We worked hard the entire summer of 2010. We were up at sunrise and dragging in at sunset. We painted the entire interior of the house, sanded the original Rosewood floors, hung doors, laid tile… All with zero health or respiratory issues. Of course I had the sensibility to wear a ventilator throughout this project. We moved in August 2010 and settled into what seemed like normalcy.

Three months later, on Thanksgiving Day, I decided while the kids were with the in-laws, that I’d tackle the boxes in the garage left untouched after the move. I cleaned and organized all day and well into the night until I finished. The next morning I could barely move. Literally.

Everything hurt. It hurt to roll over in bed. It hurt to sit up. It hurt to put my feet on the shiny wood floors. I drudgingly stumbled to the bathroom and slumped onto the toilet. When I attempted to stand up, I found I had to brace myself. Fastening my hands to the towel bar and corner of the sink I worked to hoist myself from the seated position… And fell. The pain and weight of my then 127lb frame was too great for my legs to bear. I was 34 years old, falling off the toilet. It was abnormal. It was real. It was no longer just a hunch, inkling or intuition that something just wasn’t right.

I made the first available appointment on Black Friday with my PCP. She pressed trigger points on my shoulders, elbows, hips, knees- places I never imagined could hurt, were excruciating. “I believe you have fibromyalgia. This would also explain the ribcage pain a few months back,” she stated. I left with a prescription for Cymbalta (the “wonder drug” from hell, but that’s a story I’ll tell later). I felt reassured that the crazy-making symptoms had a name and I wasn’t going to wind up on an episode of Mystery Diagnosis.

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“God, help me up; I can fall down by myself.”
— Unknown

Genesis: In the Beginning pt. 1

There was a noticeable jabbing pain in the middle of the left side of my back, directly behind my lung. Every deep inhalation brought the discomfort to the surface. That feeling had lingered a few weeks before our trip to North Carolina, but it was something I brushed off, chalking it up to lifting and carrying 27″ computers for a living.

While sightseeing through downtown Raleigh, a strange constriction stifled my breath- a sensation I hadn’t felt before. The jab in my back had gotten worse while perusing the city on foot. I mentioned the discomfort to my husband, telling him I had to make certain I got a check-up once we were back home in Texas.

The flight home seemed to take its toll on my body. I was fatigued like I’d never been before and that nagging pain in my back just wouldn’t go away. The shortness of breath kicked in again worse than ever and I headed to the ER. There, I was diagnosed with a “strained muscle”, given a muscle relaxer and sent on my merry way and told to follow up with my PCP. No explanation for the shortness of breath. I followed up with my regular doctor who concurred that this was indeed a strained muscle. She also stated that I was also anemic, which would have accounted for the shortness of breath. I was a tad confused because at this point, I could pinpoint the precise area between my ribs that was tender to the touch and tender with inhalation- this was not my back muscles. Again, I took everyone’s word that I’d just pulled something… After all, they’re doctors. They have a degree on medicine while I have a degree in design.

Days later, while at work, I began to feel deathly ill. I couldn’t catch my breath. My back hurt tremendously. I’d started to lose my voice and turned pale. I sat on the floor in the hallway by the bathroom trying to regain my strength. My manager knelt in front of me and said, “You need to go to the doctor NOW.” I called my PCP and got an urgent appointment with her. As soon as she walked into the exam room she exclaimed, “What happened to you?!?”

I could hardly reply because I’d almost totally lost my voice and it hurt my back to simply breathe, let alone talk. She called the ER to let them know I was coming. She feared I either had a tumor compressing my vocal cords or was having a heart attack. I was wheeled in a wheelchair down to the ER (I didn’t have the strength to walk by now) and was admitted to the hospital.

I had all sorts of tests run- CTs, EKGs, ultrasounds, labs drawn… Nothing. Not a clue as to what was causing the bizarre symptoms. The second day in the hospital, my PCP detected a scratchy “sandpaper” sound and said, “That’s weird. You have pleurisy.” An inflammation in the lining of my lung? How odd… Especially since I hadn’t had any respiratory illness. No cough. No sneezing. Not even any wheezing with the shortness of breath.

I was discharged from the hospital and referred to a Pulmonologist and an ENT. The Pulmonologist determined that I had diminished lung capacity and believed I had asthma. “Who the hell develops asthma out of the blue at 34,” I thought, but again, went along with it. I puffed inhalers, swallowed steroids and kept my appointments for months before feeling well enough to return to work. I couldn’t be around anything smokey whatsoever- BBQ grills, fires, cigarettes- they all triggered an “attack”.

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“Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will.”
— Jawaharal Nehru

My Name is Akaimi, and I have LGLL

Large Granular Lymphocytic Leukemia is a rare disorder that affects approximately one in ten million Americans. I am one of them.

Because of LGLL’s indolent course, there’s no way to know for certain how long I’ve had this disorder. I believe I’ve had it since 2010, but I wasn’t formally diagnosed until March 26, 2013.

Researchers at the University of VA are working to discover the cause, course and cure for this presently incurable form of leukemia. Some people function just fine with Watch and Wait, where their blood is drawn every few months and no chemotherapy is required. Others, like myself, require treatment rather quickly due to the progression of the disease that causes Large Granular Lymphocytes to crowd out the production of other cells in the bone marrow.

This blog is the journal of my journey towards clinical remission.

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“Life is not about waiting for the storm to pass…it’s about learning how to dance in the rain.”
— Unknown

“Activism is my…

“Activism is my rent for living on this planet.”
– Alice Walker