NEWS

   I cannot stay quiet any longer. I have been a chronic pain patient for over two decades: CRPS - Complex Regional Pain Syndrome, dystonia, Dysautonomia, Barre Lieou Syndrome, vasovagal syncope, fibromyalgia, chronic migraines, etc.… I used to get upset that no one in my situation was ever represented on television. 

   I recently started to become hopeful when I saw advertisements for some of my favorite television shows announcing that their future plotlines were to include chronic pain patients. One popular prime time show even has one of its main characters diagnosed with CRPS.                  When I first heard about these shows, I thought, “Finally, we will have some much needed public awareness about chronic pain and what we go through on a daily basis.”Now, I am furious. Not one of these prime-time shows has shown a chronic pain patient in a positive light. It has been quite the opposite.              

As I have been following some of these story lines, I have become increasingly distressed. Each show has deliberately depicted someone with chronic pain as a drug seeker, an opioid addict or as someone who has died due to an overdose. This is sickening to me. I have not taken any pain medications for over 10 years, but many of my fellow pain warriors rely on them for pain management. 

   When I was appropriately prescribed Oxycontin/Vicodin/etc. I took it as directed. Most chronic pain patients follow the rules. Our opioid crisis in this county is hurting the people who need the medication the most. Last week, I watched a show where the medical director of a hospital directed that no opioids were to be prescribed throughout the entire hospital. I wanted to scream at the doctor on television. There is a correct time and place for this medication. I used to wonder why after a wisdom tooth was extracted was a patient given a 30-day prescription for hydrocodone when all that was called for was maybe a day or two. I know this practice has changed; this is a step in the right direction. When my daughter recently had an emergency appendectomy, they gave her three days worth of hydrocodone, after two days, she switched to acetaminophen. Again appropriate; since they to used to prescribe a month’s worth of medication for this procedure. 

In my non-medical degree opinion it was these former type scripts that were some of the root causes of unnecessary addictions.

   Chronic pain patients are people who need help. Most of us do NOT want to live or depend on medication. We try physical, occupation, water, talk, massage therapy; acupuncture; alternative medication; meditation; yoga; everything short of standing on our heads all day. 

   These televisions shows make chronic pain patients look like common drug seekers. I have already written to several of these TV shows asking for some positive changes. I encourage you to do the same.

   I try to participate in daily meditation and relaxation to help soothe the rocky parts of my life. I am extremely fortunately to now have a very strong support system (my family and friends). To have so many people looking out for me and on my side makes the world of difference. 

   Being “stuck in a rut” of self-pity, is a horrible and sometimes cynical feeling. I used to ask "why" all the time, and cried my past allotment of "it is not fair." I was a "good" girl my whole upbringing. Didn't drink, or do drugs, didn't party and was a good student. I always had a job from when I was 11 on, and was active in choir, the theatre, and my youth group. I went to college and continued on to earn my Master's degree right away. I loved being a teacher.

   Life is extremely situational - one moment, I was so happy; I had everything - a new house, an incredible job, a loving family. One accident completely changed my life. 

   Losing the ability to be a teacher was probably the hardest blow for me, besides the physical pain. For a long time, I couldn't or just didn't know how to "reinvent" myself.       Finding positive things in my life were hard to see. I was disabled and felt worthless. I have recently discovered that my disability has become almost an asset - so to speak. 

   I have become an advocate for the disease I now have, Reflex Sympathetic Dystrophy (RSD). I have been educating and counseling people who have just learned of their diagnosis. Deciding to help and use the pain and knowledge that I have already been/or going through was a “game-changer.” 

My life, my "game" although maybe not the one I chose to play, does not have to be all negative. 

   My son loves the Beatles. Not too long ago, I discovered the perfect song for me -- "Blackbird." I think it is now become almost my mantra -- no matter what happens, I will fly.

   I am always trying to explain to people how CRPS feels. It is a very hard concept for people to grasp. 

   People who live with CRPS describe their pain as sharp, burning, stinging, stabbing, aching, and throbbing. I generally respond that I feel my body is on fire; as if someone has replaced my blood with ignited gasoline. I guess that is hard for non-CRPS suffers to imagine.

   A few nights ago, I gave myself a pretty bad burn when I touched the oven rack pulling out our dinner of a 425-degree oven. My skin blistered immediately producing a lovely second-degree burn.

As the top of my skin heated up and continued to do so for a couple of hours, I realized – I can finally explain CRPS.

   The horrible painful feeling you have for the short while on your skin after really burning yourself is what I feel every moment of every day inside my knee. My knee is always on fire. When I am in a pain flare-up, it is the equivalent of maybe breaking a bone at the same time; it is just added pain to what is already constant. 

   One of the biggest complaints, besides the pain, you will hear people with CRPS report is that is so hurtful and upsetting when others say “You look great. You are wearing makeup, jewelry, you must not be in pain today;” or “You are smiling, laughing and out with friends, your must be having a low or no pain day.”  Or even worse, people may think that you have been lying about your pain levels.

   What “healthy” people do not realize is that I have made a choice. No matter what I do, I am going to be in pain. I can crawl into bed and cry all day or go out and put on a smile and face the day as best as I can. Either way, I am still going to be in the same amount of pain.

   Even on my highest pain flare days, I am sure to do two things: I get out of my pajamas, and put on something comfortable (lounge pants, sweats, etc.) and I will leave the bed and go to the couch. I force myself to do these things because it changes my frame of mind. I refuse to be a victim of this disease. 

   CRPS is referred to as the “suicide disease.” People are not meant to suffer in such extreme amounts of pain all day. Having support from family, friends, the medical community, and the general public is so crucial to our fight against this cruel disease. 

   I am sure it is hard to understand completely what we go through on a daily basis. Trust me, it is hell.