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

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#Spondylitis Awareness Month

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Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.

 

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.

Applying for Disability Has Dehumanized Me

Applying for disability is a demeaning, humiliating, invasive process.

I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take six months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Most people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations, and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful. In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated, and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.

(here’s a link with some stuff that makes sense)


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“I made this shirt.” Image by Rich Beckermeyer; Makeup by Alex Cassie

As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single other thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.

My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in yesteryears. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so that others will believe me too.

The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health, and accomplish chores. Continue reading Applying for Disability Has Dehumanized Me

Reclaiming Our Bodies; Sex and Ankylosing Spondylitis

I wrote this article, which first appeared on http://www.ThisASLife.com in November 2015. What you see here is an unedited, shared version with a different cover image. The direct link to the original article is here: http://www.thisaslife.com/lifestyle/sex-and-ankylosing-spondylitis/ 


 

I recently attended the American College of Rheumatology Annual Meeting in San Francisco as a patient journalist working with This AS Life. While I did not know what to expect, a session about sex and rheumatic diseases caught me completely by surprise. The session titled, “Sexuality and Intimacy in Rheumatic Diseases Study Group,” ignited my interest, so I made sure to attend.

To be honest, it’s a really uncomfortable subject for most of us to talk about whether we have Ankylosing Spondylitis (AS) or not. Sexual intimacy is supposed to be pleasurable and it can still be pleasurable even with AS.

When I walked into the session, I found a vastly different scene than the normal chair-filled room facing a PowerPoint-prompted stage. This session was appropriately interactive and small, creating an intimate setting for attendees. I was fascinated to see another patient – a woman with rheumatoid arthritis – speaking to the group of about 20 people sitting in a circle, along with a sexologist and a doctor as facilitator. At a conference where patients are rarely on stage (and even a bit difficult to find), this was refreshing to see.

What I learned or could relate to:

  • There’s a dearth of information and literature available about sex for people with rheumatic diseases.
  • Peer-to-peer conversations (in person) and online support networks (i.e. chat rooms or Facebook groups) are often a helpful go-to for people looking for advice, ideas and support.
  • Patients don’t always feel they can ask their doctors about issues related to sexual relationships.
  • Doctors often don’t know what resources to provide when AS patients ask about sex, or are not aware of local support groups.
  • Sex is understandably a difficult topic for both patients and doctors to talk about because treatment for chronic diseases is often clinical in nature, which leaves out emotional.

I’m no sexpert, but my experience as someone living with AS and the way I’ve adapted in order to enjoy sex may help you. For the record, I’m not a doctor – and just because something works for me, it doesn’t mean it will work for you. Having said that, here’s my recipe for good sex with AS:

  1. Schedule sex. Before you roll your eyes and skip to the juicy parts, let me tell you that scheduling sex can be extremely exciting. Putting sex on your calendar doesn’t mean it will be boring. Personally, scheduling intimacy allows me to prepare my body and mind for the activity. Have fun planning in advance, which can deepen your relationship (and your sex life, in particular), rather than allowing it to be a burden.

    Thoughts to consider: If you put sex on the schedule for the evening, start the morning off with sweet notes and initiate romance throughout the day (phone calls, send your partner off to work with a handwritten love letter, have lunch together). Make each other feel good throughout the day to build up for an exciting evening. Let me be clear, with the unpredictability of our bodies, even scheduled activities may need to be cancelled or rescheduled – and that’s okay.

  2. Foreplay. Place more emphasis on foreplay. Foreplay helps lubricate your body in addition to your sex organs which makes intercourse smoother. Your bodies will warm up together and there’s a greater chance of feeling good, longer, with less discomfort and pain. Speaking of lubrication, don’t be afraid to use lubricant.
  3. Communication. This is crucial to both (or all) partners involved. Have a safe word for when something hurts. If you need to change positions, say so. You can also be very specific: “My hips are cramping,” “I can’t do this position long,” or simply, “That hurts.” It’s equally important that your partner knows what makes you feel good, so communicate this in an encouraging way. Open communication is important to most couples, but I think it’s absolutely imperative for couples affected by AS. For me, being able to communicate to a partner that something’s uncomfortable enhances my sexual gratification in the end because it allows us both to find a new position that is pleasurable. Similarly, being able to show or tell someone that my body actually feels good is a refreshing feeling, especially when I’m used to my body being a source of pain.
  4. Stretch. For me, the most important (note that I said important, not pleasurable) part of sex is what happens after. The moment intercourse has finished, I stretch my hips and my back with the help of my partner. Incorporating post-intercourse stretching adds to the intimate experience. It helps your partner learn about your body in a loving way and gives them an opportunity to explore your body when you are still relaxed. Turning something that could be seen as a burden into a romantic exercise can help bring you closer.

People living with AS have adapted new ways to open the dryer door, tie our shoe laces or even roll over in bed at times when our bodies don’t function the way we need them to. We can also adapt when we have sex, too. It’s important to remember that sex can absolutely be a positive, safe, empowering and pleasurable experience. Our bodies are absolutely capable of feeling good, and we should never forget that.

What are your recipes for good sex with AS?

Becoming Disabled Is the Apocalypse

Becoming disabled is indescribable, so of course here I am trying to write about it.

I did not simply become disabled and accept it with the snap of the fingers: “Aha, so that explains everything! I’m disabled!”

Let me make the clear distinction between becoming vs being disabled. Becoming disabled is a learning process. Being disabled is what happens after the shock has subsided and one has accepted disability as part of his or her identity. Plenty of people have never “become disabled” because they’ve always been disabled – they have never been any other way. The difference between becoming disabled and being disabled is as simple as broken versus whole. When we finally reach the acceptance stage, we are once again whole, having accepted that disability is part of us now.

There is no timeline to follow after a sudden and shocking diagnosis – other than scheduled doctor appointments, and perhaps the sudden tendency to plan for the unexpected worst so that if things improve there’s a reason to celebrate. Rather than having a reliable and predictable five-year plan, the sidewalk paves itself with each step you take.

It’s definitely not a walk in the park.  Becoming disabled is more like walking through the apocalypse. Think broken pavement. Zombies. Car alarms. Birds, big black birds. And whatever else you can think of that you wouldn’t want to round the corner and run into. Clowns. Spiders. Snakes. Balloons. Door to door salespeople. Fear. That’s what I’m talking about. Fear. It’s what threatens to overtake each tentative step forward into the unknown, unpredictable new body you now inhabit. Fear is a powerful substance.
Continue reading Becoming Disabled Is the Apocalypse

What Mom Thinks About Me Being Sick

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Mother, Caroline, and Daughter, Charis, at Meredith College circa 1989. Charis is wearing the first dress she ever picked out.

I have ankylosing spondylitis and several mental health issues. I asked my mother some questions about them impacting my life. Here’s what she had to say:

What was I like as a child?

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Charis building muscles at a young age

You were always physically active – as a baby, stretching and leaning toward what you liked/wanted.  You enjoyed crawling, walking, later bicycling.  I enjoyed watching you do backbends and cartwheels at about ages 6-10.  You wanted to be scored – 1-10 – as though in the Olympics.  You loved kittens and puppies.  You enjoyed holding them and carrying them around.  You were inquisitive.  You were very shy as a toddler, often hiding behind my skirts or my legs so you would not have to talk to people who addressed you.  You enjoyed spending time with people of all ages as you became an older child.  You became friends with adults and enjoyed learning new things such as tennis and fishing from your grandparents.  I had come to believe that “it takes a village to raise a child”, so I encouraged your independence in going alone by bicycle into our village and forming many relationships with nurturing adults there.  I allowed and encouraged you to be outspoken to the point of some thinking you were “too sassy”, but I believed that as a female in this society, you would need to be able to speak up and take care of yourself as you grew up.  There could easily be a book about how you were as a child, so this will have to be an incomplete capsule.

Do we have any similar quirks that you have noticed/ Do you think these quirks are the result of nature or nurture? Continue reading What Mom Thinks About Me Being Sick