Guest Blogger: A Post I MUST Share: "Life in Pain: Living with Complex Regional Pain Syndrome CRPS: I wish I had cancer..."

I am compelled to share the post below.  I found it on the Facebook page "Chronically Optimistic:  Invisible Illness, Visible Hope".  I, too, have the diagnosis of Chronic Regional Pain Syndrome and the usual "story" that goes along with it.  The term is a mouthful so I don't use it often.  I prefer chronic, or intractable, pain.  In most states there is what they call an "Intractable Pain Law", though it is rarely enforced. In fact, in Florida, there is a law on the books that directly contradicts the intractable pain law.  Our attorney general is a republican right now and trying to make controlled substances illegal (no, I'm not kidding) so guess which one is being enforced?  I bet things would be different if SHE had chronic pain.

MY STORY
It is beyond me how pain can last so long after an operation; on some days it feels like it is the day after.  My pain doctor has to explain to me, each time I see her it seems, what is going on in my body and causing that chronic regional pain.  She patiently lists my options again and again, and I shy away from them, again and again (my pain doctor is a gift from God, and she is constantly at the top of my gratitude list).  Then I go on with the pain patch and medication I am currently using.

The surgery that caused my pain actually took place at a cancer hospital, so I have also known the feeling of wishing that I had cancer.  I even said that exact phrase right after my surgery when they discovered the spot on my lung was not cancer.  If it had been cancer I would have continued being treated like the queen I was at Moffitt during my surgical stay.  The minute they got the biopsy results, however, they began to treat me as the "ugly step-child".  Even the respect which I had been treated with as a hospital patient the day before was withdrawn due to the lack of cancer diagnosis.  You think I'm kidding?  My surgeon disappeared...  I was only visited by the surgical associate.  After I was released and called to ask why the pain was so intense the nurse wouldn't put me through to talk to my surgical team; she wouldn't even take a message for them to return my call.  Not even the referring pulmonary oncologist would return my phone calls.  When time finally came for me to see the pain management team in oncology they outright refused to treat me even though I was right there sitting in their office.  Why?  I didn't have cancer.  Period.  End of story.

I felt so alone.  In most of my life challenges I had friends that had been through similar experiences; enough to be able to lend emotional support at least.  During my divorce I could turn to the plethora of friends that were divorced and, let's face it, most of my friends are divorced.  When my parents died there were a handful of people that had already lost their parents and they were a great comfort during that time.  But with the pain that had been hanging on for months and months and months and months?  There was no one.  And even fewer who could understand losing half a lung.  Pain literally ran my life.

There were precious few days I felt like doing anything but doing the bare essentials of taking care of myself.  And when I did feel like being with friends, if I mistakenly talked about what was going on in my life (doctor appointments, acquiring pain pills, new ways to fight the pain naturally, improvement in my pain, insurance frustrations) my friends would hit the roof!  They just didn't want to hear it.  What most people didn't know was that I was sleeping anywhere from twelve to 20 hours a day.  I literally had no other activities to talk about.  I could have named the dust bunnies under my bed and recited those to them but that might have convinced them I was crazier than they already thought I was.

There is one last thing I must report on this subject.  I finally received my diagnosis of cancer.  For some obscure reason, having cancer is the only way to qualify to receive certain controlled substances severe pain.  I am currently being followed by a pulmonologist for suspected cancerous nodules in my left lung.  Thus I have gotten my wish; the cancer diagnosis is mine.  Funny, I still can't get the pain medications I need.  The Attorney General of Florida is making sure of that.

A lot of judging goes on as the article points out.  Judging from doctors, pharmacists, friends, complete strangers, all facets of life.  The statistics are listed and it's worth the read to realize what people like us are up against.  You, too, will understand why so many of us with chronic pain wish we had cancer.


Life in Pain: Living with Complex Regional Pain Syndrome CRPS: I wish I had cancer...: I know it sounds weird, but I wish I had cancer instead. Cancer is this big bad that everyone now worries about.  But cancer has a f...