My Backbone Is What Must Keep Me Going

By Hannah Jarvis (Final project for Spring 2013)

You hear the word and think of hospital beds, weak bodies and crying families.  It is a word you hope it never attaches itself to your name.  And it never will, if you are lucky.  But not all of us have that luck.

I was not diagnosed until September 2012, but I had known and felt that something was wrong since I was a young girl.  I would wake up in the middle of the night, completely unable to move my neck.  Or sometimes it was my right arm.  Once, when I was seven, it was my whole body.  All day I would lay in bed completely still.  Movement was agony and little girls aren’t known for their tolerance to pain.  I have learned to manage, but it doesn’t hurt any less.

I also get sick a lot.  Every flu season, change in weather, encounter with a mildly sick friend, I get sick.  I was spending too many days laying bed sick, tired, and hurting.

When my specialist told me I had psoriatic arthritis I was originally relieved.  I had seen a dozen other doctors who had no idea what was wrong with me.  I was so fed up I just started saying I had the Hannah Jarvis syndrome.  But when Dr. Shah said those words I was given an answer to the question I had been asking for years.  In a way, the diagnosis was a gift.

Psoriatic arthritis is a type of inflammatory arthritis that is passed along through the skin condition psoriasis.  My skin is the one thing that hasn’t affected by the disease, but the condition is still in my blood.  I have severe and debilitating pain in my neck, lower back, hips and shoulders, characterizing the spondylitis form of the disease.  The pain goes through periods of remission, but I can always count on it to come back.  My immune system is in a constant state of overdrive.  While antibodies are working constantly to ease my aching joints, my immune system is left vulnerable to previously stated viruses, bacteria and bugs.

Before I was diagnosed, I barely took any medicine stronger than an aspirin, and that was only used sparingly.   I now take 15 pills a day, and will probably have to take them for the rest of my life.   There is no cure for psoriatic arthritis, just ways to minimize pain and long term damage.  The six pills on the left are called disease-modifying antirheumatic drugs that will prevent any further joint damage.  The five in the center are different pain medications to dull the pain and reduce inflammation, and the two on the right (which are about half the size of my pinky finger) are for boosting my immune system and overall health.

Not every aspect of my new health regime is so tedious.  A modified, anti-inflammatory diet that among other things, cuts out refined sugars, red meat and eggs has reduced the likelihood of pain breakouts in addition to making healthier food choices.  From time to time I enjoy a deep tissue massage that alleviates tense muscles surrounding my problem areas.   And I take two to three baths every week, soaking in Epsom salts, alleviating pain in a more soothing and natural way.

The hardest part about living with a disease is knowing that I’m broken, that I’m somewhat lesser, that I would probably not survive in the animal kingdom.  I have missed birthday parties, concerts and parades.  Before I plan a day I have to pack my medications and listen to them rattle around in my purse all day.  I’m not as strong as I want to be.   But I’m not as weak as the disease wants me to be.

My strength is in my knowing, my prevention, and in my responsibility to myself.  My source of pain is my backbone, and my backbone is what must keep me going.