“If you are interested in stories with happy endings, you would be better off reading some other books. In this book, not only is there no happy ending, there is no happy beginning and very few happy things in the middle.”
-Lemony Snicket, The Bad Beginning
Apparently everyone hated 2016.
I miss it with my whole heart and look back nostalgically, the way I do about playing on the swing set in my backyard as a kid and truly feeling free.
You see, last year was spent hiking with my daughter and husband. Blowing bubbles and running around the backyard. Weekly music class filled with dancing, playing and learning. Sitting on the floor surrounded with pillows and stuffed animals reading books. Climbing all over the playground.
I can’t do any of those things anymore. At least for now.
The first quarter of 2017 would not be highlighted in my personal Annual Report. I was diagnosed with Rhupus Syndrome, which sounds like something you would name a small, yappy dog that pees on your floor every time the mailman comes, but is really a less-than-cleverly named disease. It means I have both lupus and rheumatoid arthritis, a nice one-two punch of autoimmune disease.
Symptoms arrived in January, welcoming the new year. It began with severe shoulder pain that woke me up in the night, then went away. The same thing started to happen a week later to my hips and hands, then ankles and feet.
I lost 20 pounds in February, which was drastic and disconcerting on my frame, and had the same severe, unexplained joint pain and swelling simultaneously in all joints at all times. It made sleep impossible and eventually rendered me immobile, which is tough when you’re a stay-at-home mom to a very active toddler.
I saw several different doctors in this time and had many, many blood tests. The second doctor I saw, a gentleman who appeared in his mid-sixties, read me questions about symptoms off his computer screen. When I asked for clarification on one, he turned his laptop around, pointed to the question he had just read verbatim and asked me to answer. I thanked him for clearing that up and clicked a multiple choice reply, wondering why I didn’t just stay home in my pajamas and peruse WebMD’s symptom checker.
I finally received a diagnosis in mid-March, following a hospital trip prompted when my legs could physically no longer support my body. While getting my pelvis and chest x-rayed during this hospital visit, Dr. WebMD left me a voicemail saying that he was sure everything was normal, and if I still have discomfort, continue to take ibuprofen. This was in response to my many calls four weeks prior after symptoms were rapidly declining and I was really concerned. Thanks, Doc.
Had I not ended up with a fantastic GP and then a wonderful Rheumatologist, I may have lost faith in the medical community and started writing books with Jenny McCarthy.
I’d love to say in this paragraph that I’m well on my way to managing this life-long disease and am in good spirits.
I try to remain optimistic about my situation that is so much better than many others’, and remind myself every day that there are people in far worse situations. Someone learning they have terminal cancer and weeks to live. Alzheimer’s disease slowly removing every shred of a life lived. Women having miscarriages. People being tortured in war-torn areas of the globe, children starving…so much pain.
But I remain frustrated and the root of it all is my insurance.
After three months of fighting the worst pain I’ve experienced, including the time I shattered my ankle and my c-section recovery, my insurance has still not approved my doctor’s recommended treatment plan, even after he appealed it.
The doctor said that the severity and speed of my body’s decline, as well as my blood and joint fluid test results, are abnormal for this disease.
The medication insurance covers because, as my doctor put it, “it’s dirt cheap,” will not be effective for 6-12 months. I will be forced to use it as my primary treatment for a 3-month trial, even though my doctor knows it will be ineffective for months more in my case. It is a wonderful maintenance medication.
In order to help with pain management and my joint swelling in the meantime, I am on high doses of steroids that give me the ability to walk around my house on good days, and lift my child if I use my forearms because my hands are too swollen to use them. They are known to cause bone thinning in most individuals starting at about three months.
If my disease continues at the rate it is going unchecked and untreated, the permanent joint damage that lupus and RA cause will take effect at a much more rapid rate. Lupus can also start to attack my organs. I am 28 and would like to start to curtail permanent damage as soon as possible.
My insurance company–shout out to Anthem Blue Cross Blue Shield!– has decided that these reasons my doctor gave them were not compelling enough to approve treatment. After all, what would a rheumatology specialist know about treating patients with inflammatory autoimmune disease?
We have filed a grievance of course, and this process will take 30 days. Hopefully. This will give me my medication a month sooner, if we are lucky.
Here are my questions.
I am not highly educated on health insurance policies and procedures. I am not highly educated on government oversight of insurance companies. I would like to be.
How can I vote against insurance companies overriding doctor recommendations?
Is this issue addressed in government health plans?
Why is this allowed in the first place?
How is it less expensive for the insurance company to initially deny something, which would inevitably worsen a condition and be more expensive for them long-term?
I want to understand.
It would help me to know that a system is set up that while it’s inconvenient for me for a time, it has been somehow found to help people. Is this truly the case?
Oh and one more thing. I already know about Plexus. I know they are magical life-changing unicorn supplements of sunshine and healing. Eight of your fellow salespeople have already told me, so PLEASE stop.