Category Archives: auto-inflammatory

Participate in The Spondy Project. Get Paid.

About a year ago I connected with the folks of Self Care Catalysts and downloaded their free app, AS Health Storylines (available on android and Apple products), that helps track medication, symptoms, diet, appointments and more. This, and other apps, has helped me – sometimes I need a reminder to take a certain medication; I also like all this information in one place so I can share it with my doctor and disability attorney.

Recently, Self Care Catalysts has also unveiled The Spondy Project, a paid research opportunity for patients with Ankylosing Spondylitis and other forms of Spondyloarthritis. Participants can receive up to $100 for sharing their experiences through an app for up to four months. Read more below to see why I think you should sign up: Continue reading Participate in The Spondy Project. Get Paid.

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“An Invisible Disease” – my TEDx talk

In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.

I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.

Click here to watch the 8-minute video:

An Invisible Disease : Charis Hill : Sacramento TEDx Salon


Repealing Obamacare Could Kill me

The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me

My Running Shoes Are Waiting for a Cure

My running shoes shuffle hesitantly by the door, moving in unplanned rhythm with cat hair and dust bunnies that create a grey veil over their silent, still tongues. How long have they been sitting there? They peer at me hopefully every time I open the front door, but I can see they feel more neglected each day, every time I look at them and shake my head: “No, not today. I don’t know when. I’m sorry. I miss you, too.”

Continue reading My Running Shoes Are Waiting for a Cure

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

#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.

 

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?