Thursday, February 21, 2019

My Year of Wait... What?!

Shonda Rhimes wrote a book titled Year of Yes: How to Dance It Out, Stand In The Sun and Be Your Own Person. She braved situations and adventures that in the past she might have declined. It worked out beautifully for her. (I think. Honestly, I haven't read that book yet, but I plan to read it.)

The past year of my life has been a year of wait... what?! The past year of my life featured mysterious illnesses, maladies, health challenges and an earnest attempt to reenter the workforce. It was kind of a poop parade.

March 27, 2018: While eagerly anticipating my first trip to Maui, I came down with a weird illness. Over a 36 hour period I repeatedly vomited violently, experienced debilitating vertigo and had a blinding headache. I started to feel a little better, but had burst blood vessels on my face and a ringing in my left ear. I put on extra makeup, drank some Gatorade and moved on with my routine.

April 5, 2018: I made an appointment with a new primary care physician, because my left ear was still ringing. I was still experiencing intermittent spells of vertigo that meant I had to hug the wall to avoid falling. My left ear felt stopped up, but would not pop. I experienced discomfort in my left ear akin to a two or three on the ten-point pain scale.

I chose my new primary care physician because she was on my cruddy insurance plan and had a high star rating on a doctor review website. Maybe she was having a bad day, but for the entire 90 seconds spent with me she just talked about how I needed to go see an Ear, Nose, Throat specialist. She looked in my right ear, but not my left ear. (Um, hellooooo?!) As she walked out of the exam room she told me over her departing shoulder to pick up a referral card for the Ear, Nose, Throat specialist from the receptionist desk on my way out. That was disappointing.

April 6, 2018: I had an appointment with a Physician Assistant at the Ear, Nose, Throat doctor's office. The P.A. looked in both my ears, but didn't see anything abnormal. He tried to make me dizzy with a few exercises, but it didn't work. (Apparently I have excellent balance thanks to yoga and core strength workouts. #humblebrag) Then he tried to pop my neck in an attempt to dislodge possible crystals in my inner ear. That didn't work. He shrugged and wrote a prescription for seventeen days of Prednisone. Prednisone is a steroid commonly used to treat inflammation. My own personal experience with Prednisone features side effects of insomnia, racing thoughts, slightly aggressive cheerfulness and crazy appetite.

April 7, 2018: I boarded a flight to Maui. I didn't want to mess up my vacation with Prednisone, so I waited until I returned home to start my seventeen day course of meds. You can read about my Maui vacation *here*,  *here* , *here* ,  *here*, *here* and *here*.

April 20, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and had an amazing workout.

April 21, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and my house was sparkling clean. I was also really hungry.

April 22, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty. I went to a farmer's market, brunch, the craft store. I made a cool sand art with faux succulent hanging terrarium for the front entrance to my home.

April 23, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and had an amazing workout. I wrote a bunch of reviews for Tripadvisor. I booked a trip for my upcoming wedding anniversary. I studied for my Spanish class.

April 24, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and had an amazing workout. I also felt the effects of sleep deprivation and had trouble concentrating.

April 25, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and had an amazing workout. I may have participated too much in my conversational Spanish class, but my grammar was muy bien.

April 26, 2018: I took 60 milligrams of Prednisone. I was so chipper and chatty and had an amazing workout. I ordered chocolate covered macadamia nut gift sets from Maui for my mom, my sister's family and my grandma. I nearly ate my weight in vegan tacos at Cool Beans. I felt tired from sleep deprivation and wired from the Prednisone.

April 27, 2018: Merciful Heavens! I got to drop down to 40 milligrams of Prednisone. My left ear was still ringing. I still had trouble sleeping. I still wanted to eat everything in sight.

April 28, 2018: I took 40 milligrams of Prednisone. I started seriously pining for the nights when I slept seven of eight hours.

April 29, 2018: I took 40 milligrams of Prednisone. I needed sleep so badly. I don't even want to tell you how much weight I gained taking this dumb medicine.

April 30, 2018: I got to drop down to 20 milligrams of Prednisone. My left ear was still ringing.

May 1, 2018: I took 20 milligrams of Prednisone. My left ear was still ringing.

May 2, 2018: I took 20 milligrams of Prednisone. My left ear was still ringing.

May 3, 2018: I got to drop down to 10 milligrams of Prednisone. My left ear was still ringing. I started sleeping a little better.

May 4, 2018: I took 10 milligrams of Prednisone. My left ear was still ringing.

May 5, 2018: I took 10 milligrams of Prednisone. My left ear was still ringing.

May 6, 2018: I took 10 milligrams of Prednisone. My left ear was still ringing.

May 7, 2018: I completed the course of Prednisone, and made an appointment for my follow-up exam with the Ear, Nose, Throat guy. My left ear was still ringing.

May 8, 2018: The Ear, Nose, Throat guy was disappointed that the Prednisone didn't cure the ringing in my left ear. He sent me to an audiologist for a hearing test. I had partial hearing loss in my left ear, mostly low pitches and tones. I also had a possible diagnoses of Meniere's disease.

May 9, 2018: The Ear, Nose, Throat guy was out of ideas. He suggested that I get an MRI just to rule out anything serious, like maybe a brain tumor. My cruddy insurance wouldn't cover an MRI, which would have meant thousands of dollars out of pocket. Also I had (and still have) claustrophobia. I did not (and do not) want to lie perfectly still in a cramped metal tube. I have metal dental work which was my ticket out of the MRI prevented me from getting an MRI. My left ear was still ringing.

I decided to just not think about my left ear for a while. My left ear continued to ring and annoyed me. I caught up on sleep.

May 23, 2018: I realized that I had been grinding my teeth at night something fierce. I would awaken with a headache and sore teeth and jaws. I tried a cheap grocery store nighttime dental guard, but it was too bulky. I decided to get a proper, custom-fit, expensive nighttime dental guard from my dentist. It helped for a few weeks. At first I was glad I got the fancy night guard. But after about six weeks the night guard started to dig into my gums and left sore spots. I've since had the night guard adjusted a few times with varying degrees of success/comfort.

Most of the summer I felt okay. I experienced several dizzy spells if I felt overheated or very stressed. My left ear was still ringing. Constantly. I noticed that I tilted my head more to hear people better. I noticed that having to talk and listen in group situations, or noisy settings, was even more exhausting than usual. Mostly I tried to employ a mind over matter mentality and soldier on with my daily stuff.

July 15, 2018: I had a violent stomach illness with 24 hours of repeated vomiting. I burst blood vessels in my face.  My left ear was ringing even louder than usual. 

August 16, 2018: I decided to try acupuncture for the first time. I thought maybe it would help stop the ringing in my left ear. The acupuncturist gave me Chinese herbs to take in harmony with the acupuncture therapy. 

August 17, 2018: Chad and I took my favorite cat, Kenji, age 16, to the veterinarian to be euthanized. Her hips had given out. It was clear she had been in pain for a few weeks, and had great difficulty walking or jumping. That day sucked real bad.

August 21, 2018: Acupuncture again. I felt the needles a little bit, but mostly the whole experience was pretty relaxing. My left ear was still ringing, but I decided to give the acupuncture at least four sessions of trying.

August 25, 2018: Chad and I traveled to Arkansas for my grandmother's 90th birthday. She still has a sassy spark. I hope to be so lucky if I make it to my 90th birthday.

August 28, 2018: I had my third acupuncture session. My left ear was still ringing.

September 4, 2018: I had my fourth acupuncture session. My left ear was still ringing. I really wanted the acupuncture to help, but it really didn't. 

September 6, 2018: I decided that the ringing in my left ear was borderline maddening. I had another appointment with the Ear, Nose, Throat guy. Mostly he shrugged, but decided to try one last possible treatment: a custom pharmacy compounded histamine. I spent the next two weeks taking the histamine medication and got a weird rash on my nose. My left ear was still ringing. 

September 28, 2018: Chad and I visited his family in Atlanta for a long weekend. 

October 8, 2018: On my birthday I went to the audiologist to discuss getting a hearing aid. In the whole poop parade of partial hearing loss and maddening ringing in my left ear, this wonderfully kind audiologist was the first person who said anything that helped me and gave me hope. He explained that my sudden hearing loss, likely due to a virus, was to blame for the ringing in my ear. He explained that my brain was making noise (the ringing) to compensate for the hearing loss, because my ear craved sound. He showed me a few hearing aid options. I chose a bright blue model. I mean, if you've got to have a hearing aid, flipping rock that hearing aid. I scheduled my return appointment for two weeks later to pick up my hearing aid. 

October 10, 2018: I started a new job at a place I'd always wanted to work. I hoped it would be a good fit for me and bring me a sense of community and belonging. The pay was ridiculously low, but I figured that was the trade-off for such a wonderful work environment.

I got into the groove of my new job. I realized how shabby and charmingly cruddy my new workplace was, and was mostly okay with it. My boss told me I was quickly becoming an asset to the team, and that the CEO had commented on my good work. 

October 22, 2018: I returned to the audiologist for my new bluetooth enabled, bright blue colored hearing aid. Unfortunately, the audiologist's software to program my new hearing aid was down. My audiologist sheepishly apologized. I didn't get to leave with my hearing aid. 

October 29, 2018: I returned to the audiologist for my new hearing aid. Finally! During the orientation for my ReSound hearing aid, the audiologist explained how to use my hearing aid and how to make customized soundscapes on the ReSound app. The ReSound soundscapes help to distract me from the maddening ringing in my left ear, which will likely never stop. The audiologist also explained that because my hearing loss is mostly in low pitches and tones, and because the vast majority of other people experience hearing loss in the high pitches and tones, any hearing aid will only help with my hearing loss a little bit. My $3000 hearing aid doesn't help me hear much better, it's mostly there to somewhat distract me from the ringing in my left ear. Of course, my cruddy health insurance did not cover my hearing aid, not one penny. 

When I first got my hearing aid, and would first put it on each morning, the ringing would stop for a few minutes. It's as if my brain got some sounds and was intrigued, so it quit making the ringing noise. As I've become more accustomed to my hearing aid, the ringing is more constant. My brain is no longer fooled. Listening to the ReSound soundscapes helps distract me from the ringing in my ear. 

November 9, 2018: All hell broke loose at a mandatory employee meeting at my new workplace. Employees tried to bait the CEO into arguments. People cried and yelled. Profanities were hurled. I kept my mouth shut and was regarded with suspicious side-eye from coworkers for not jumping into the fray. 

Later that same day I got a flu shot. It left an uncomfortable bruise the size of a quarter coin at the injection site. 

November 10, 2018: I awoke to a headache and vomited once. I wasn't sure if my illness was caused by the flu shot, or the terrible work meeting, or some combination of both. I drafted my resignation email for my job. In the email I explained that despite the notoriously lackluster pay at that company, I'd always heard about the amazing sense of community there. I explained that I'd taken the job in hopes of having that sense of belonging, but found the complete opposite. 

November 13, 2018: I received a reply email from my boss asking me to please reconsider. She said that the CEO also wanted me to stay and had offered a personal meeting with me. While I was flattered, I politely declined. 

November 23, 2018: Chad and I took advantage of the long Thanksgiving holiday weekend to do yard work and to wash all the windows on our home inside and outside. During this flurry of activity I got cactus spines in my hands and also possibly a spider bite. (I'm still not sure.)

A few days later the skin on my right hand got very sensitive. Three of my fingers swelled and developed sores. After applying Benadryl lotion, my hand seemed to get a little better for a few days, but then got worse. 

December 7, 2018: I had an appointment with a new primary care physician. She was much better than the last primary care physician I saw. She feared that I might have an infection and/or a bad allergic reaction in my hand, because my joints were swollen. She prescribed a five day course of Prednisone (really?! again?!) and a ten day course of medium-strength antibiotics. 

I didn't sleep well during the five days on Prednisone. The ten days of antibiotics kind of messed with my stomach. My hand looked 90% better after ten days. 

December 29, 2018: I came down with a cold for the next eight days. I never ran a fever, but I was congested, coughing, had headaches, had a really runny nose and was generally tired. 

January 10, 2019: My right hand started looking a little weird again. The skin on my hand got sensitive again. I didn't want to brave another round of Prednisone, so I used Cortisone 10 lotion to treat my hand. The Cortisone 10 seemed to help heal my hand over the next week.

January 27, 2019: I came down with a second cold. Again I experienced congestion, coughing, runny nose, headaches, tiredness, but no fever, for about eight days. I was also in the middle of rehearsals for a new play for Fronterafest theatre festival. 

January 29, 2019: I developed a red angry rash on both wrists that ran halfway up to my elbows. The rash looked like a reaction to poison ivy, but I'd barely been outside due to my cold. I still don't know what caused the rash. It itched something fierce. The Cortisone 10 lotion seemed to make my rash angrier, so I discontinued its use. 

Big Guy cast photo by Kenneth Gall

February 6, 2019: I performed in Fronterafest theatre festival. The show was extremely well received. My castmates did an exemplary job performing. The script (once again by my talented friend Max Langert) was hilarious, mysterious, nuanced and touching. I was (and am) so proud to be part of that production. 

February 21, 2019: My rash is about 95% healed. I can still see the red shadows of rash bumps on a small part of both wrists if I look carefully.

My left ear is still ringing. The ringing still causes discomfort. I get tired more easily, because I'm struggling to hear and filter noise. I have trouble listening to one person in a noisy restaurant or at social events where more than one person is talking at a time. On a bad day, it makes me cry and feel a little hopeless. On a good day, when I'm channeling my inner Pollyanna, the ringing in my left ear is no big deal. 

I'm counting my blessings. I'm so glad that I have a sweetly supportive husband who urges me to rest when I'm sick, and who listens to me talk about my hearing loss. I'm so glad to be in a financial position where we can pay for medical care despite cruddy health insurance. I'm so glad to have (mostly) patient people in my life who deal with my hearing loss politely when I explain that I have trouble hearing in my left ear.