By Katelyn O’Leary
“Grief is like that – it’s inside you and it has to come out. There are no shortcuts. Be prepared for sudden explosions of feeling overtake you at inappropriate times.”
The quote above was taken from an article for The Guardian – but it rings so true for me and the grieving I’ve done for the past two years. Rage. Anger. Jealousy. Sobbing so hard I throw up. Screaming. Sadness. Anxiety so bad I can’t move or speak. My greatest fear has always been – What if I can’t get treatment anymore?
That fear is now a reality.
For purely ridiculous reasons, my health insurance company refuses to pay for the treatment of my CRPS, claiming that it is an “experimental treatment.” This argument would be more valid if they hadn’t paid for ALL of my treatments last year. Now, we all know healthcare policies can change year to year. But it was within a matter of weeks. My doctors have filed an appeal and we haven’t heard back yet. Until this is sorted out, the hospital does not want me to come in unless I am willing to be liable for all of the costs associated.
If I can’t get treatment, I will not be able to walk without a crutch or cane. I will continue to get worse.
I received a message from one of my nurses, asking if the appeal decision had come through yet. I assured her I was waiting but trying to remain positive. I have amazing nurses at my treatment center (Keck Hospital of USC). In fact, I have received so much support from other CRPS patients and friends from around the world who suffer in ways that would horrify every day people.
I used to be an “every day person.” I took for granted how easy it was for me to take a shower. To go out for a 4 mile run and feel nothing but exhilaration. To happily join a crowd of people watching a live concert, intstead of standing in the back, terrified of being touched or spoken to about my illness. My delightfully rare pain disability.
I’m so angry. Too often than not, I have found that Bruce Banner and I have a lot in common when I am angry. I turn into someone I don’t recognize. All of the pent up jealousy, rage, and utter turmoil swirling within my chest is a hurricane – with no end in sight, but with utter destruction in it its path.
I have done and said things I’m not proud of. Things that I don’t even remember saying because I was in so much pain or so upset I blacked it out completely. And to be held accountable for these things, as if I am a fully functional and healthy person is absurd.
Which is why writing to my insurance company is so hard. How many studies can I print out showing that ketamine is an effect drug for the treatment of CRPS? I have twenty studies so far. How many doctors educated at Harvard medical school, the mayo clinic, and the top research hospitals in the country do I need to cite in order for them to realize that they are discriminating against me for being disabled and because my costs are so high?
Discrimination. It’s a tricky word. And it usually comes with even messier circumstances. As a white woman, I’m not treated the same in the ER as a black woman of the same age, who has the same problem as I do. When Donald Trump released his immigration ban, I started to pay more attention to the immigrants in my life (To be honest I was not sure who was legal or illegal - but they have changed my life nonetheless.) I rely fully on Access Para-transit for rides to treatment. Every driver I had was an immigrant or a U.S. citizen whom people immediately asked “Where are you from?” and not in a nice way. They would throw their scorn at these drivers with their tones and their upper-crust accents. Trying to make a point about how “illegals are taking our jobs.”
Most of my nurses at USC originally came from different countries. They are caring, compassionate, and extremely hard working. They are the kind of nurses every chronic pain patient wishes they had in their corner.
Too many times I’ve watched other patients get picked up by their husbands, children, siblings etc. And I couldn’t feel more jealous or sad. Going through this disease without a spouse or family nearby can be so hard. The solitude of a dark hospital room with beeping monitors and the smell of antiseptic filling your nostrils is unbearable.
But I would trade that feeling in a second if it meant I could receive treatment. It is absolutely necessary. Without it I don’t know what I will do.
It’s amazing what I have learned by having this disease. How many Americans can claim they speak to 4 immigrants / recent U.S. citizens a week and who are vital to their overall health? I may not have a husband, but my nurses, friends, and drivers who come from all over the world, have shown me that compassion has no limits (despite what the White House may think.)
With each passing day I don’t get treatment my leg gets worse. I hope tomorrow will be different. But for now I will focus on managing the pain, and managing my expectations.
Because I have learned too often, that despite the best intentions of those around you – you will be disappointed again and again. Maybe if I had a disease most doctors understood things would be different. But for now I will wait with my family and my friends with the news. I hope it is in my favor.
Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.