Category Archives: sickness

Healthcare Is a Privilege. It Should Be An Inalienable Right.

I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.

When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.

When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.

When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.

When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.

I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.

I was ignorantly privileged. Continue reading Healthcare Is a Privilege. It Should Be An Inalienable Right.

We All Need Gathering Places

Arthritis Introspective 9th Annual Gathering: #GrowTogether16

Nashville, Tennessee

May, 2016

Dear Journal,

I’m spending the weekend with a lot of really special people. We’ll drink alcohol, many of us. And take lots of drugs combined. Lots and lots of drugs.

Drugs we wish we didn’t have to take. Did you think this was Burning Man?

No. We’re all sick. We all have some form of arthritis, and many of us brought loved ones with us. We came to have fun – not despite – because we have arthritis.

We didn’t come here to complain. We came to share experiences and be reminded that we aren’t alone. We are a family. We know exactly what it means to survive, and we are determined to be whole humans in the process.

Many of us suffer from multiple chronic conditions because of and/or in addition to our arthritis: depression, anxiety, heart disease, diabetes, chronic respiratory conditions, high blood pressure, etc.

And the drugs. Oh the drugs. Did I mention the drugs? Biologics. Corticosteroids. Chemotherapy. Non Steroidal Anti-Inflammatories. Analgesics (oral and topical), Disease Modifying Antirheumatic Drugs, eye steroids (did you know there are steroids for eyes?). Sleep medication. Anxiety medication. Depression medication. Blood pressure medication. Insulin. Medical Marijuana. Etc. Etc. Etc. Continue reading We All Need Gathering Places

My Walk to Cure Arthritis

I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

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With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis

I’m Mentally Ill

On April 14, 2015, I was reeling after a week of severe psychological episodes that included a trip to the Emergency Room. I was referred to a group day program that I walked out of because it was not what I needed. An awkward visit to a very clinical psychiatrist began my medication journey – I walked out of Rite Aid with two new prescriptions and new additions to my medical chart. I could no longer take care of myself  without medication to help treat severe trauma and depression triggered by recent events. I had officially become mentally ill.  I walked home shaking my pill bottles like maracas and finally felt there was help for me, then wrote these thoughts:

I know what it’s like to call out and have no one truly hear me
For the pain flooding my brain
I know the brokenness of a body grieving
The flashbacks of a mind recalling trauma
I also know what it’s like to finally be heard
And the help that comes
Sometimes too late
And never too soon
And the final, often fleeting, feeling of safety

One year later I am finally with a psychiatrist I trust, who provides what I need: one-on-one counseling in addition to superb medication management.

I have Severe Major Depressive Disorder and Post Traumatic Stress Disorder. I do not bow to stigma and I am not ashamed. There is no doubt in my mind that I need medication to help me process trauma and grief on a level playing field with my brain. I am not suicidal and never have been, but one doesn’t need to be suicidal to get help.

I owe a lot to my loved ones and friends who have been with me during the last, very rough, year and a half that began this journey to my diagnoses. Especially to those who have been a physical presence; who have made appointments for me and kept me fed, showered, held, and loved. There are many more from afar who have checked in daily and made sure I’m still going. They all deserve every thanks I can give and more.

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I am on a lifelong journey towards being mentally whole again, knowing what I’m battling, and having help.