Do any of you remember the episode of “Happy Days” where the Fonz jumped a shark on water skis? Are you aware that it spurred the saying, “Jumping the Shark”? Which is that moment when your show or story crosses the line from good and enters into a steady decline. I think it’s because something unbelievable happens.
Well I am thinking my story, at least the healing journey portion of it, may have done that very thing. Those of you playing along already know of the struggle I have had over the years with my treatment for the condition Psoriatic Arthritis (PA). Others will need a recap; 12 years ago when I was first diagnosed I began treatment with methotrexate which worked wonderfully for a couple of years until my liver began to show early signs of damage, which is a possible side effect of use, and we discontinued it. Over the years I have had a few Rheumatologists try me back on it to see if things have changed and each time within a number of weeks my liver enzyme levels became concerning; it is therefore off the list of potential treatments for me, for good. After methotrexate we moved to the injectable medication, Enbrel. Now Enbrel is really quite expensive by comparison even for insurance companies and completely out of reach if one is paying out of pocket. Over the past decade I have had several patches without medical insurance and therefore found myself going on and off of the medication several times. Every time coming back onto it noticing that it didn’t seem to work quite as well as before, eventually approaching my Rheumatologist earlier this year to ask if it was possible I had developed an immunity towards it. He categorically denied that as a possibility and recommended we try doubling the dose.
I am on state insurance, mainly because of the difficulties this and other diseases cause in my ability to hold down conventional full time work. Self-employment and the work I do is quite rewarding but doesn’t come with a benefits package. Thus began a fun journey. My doc submitted the prescription for the double dose just about the time that my insurance company changed the specialty pharmacy I would have to work with in order to fill the Enbrel presciption. Insurance denied the double dose stating that “the dose was nowhere indicated as useful in treating my condition”. Simple enough right? You’d think I’d be able to return to the once a week dose that was already approved right? Well, for reasons I am still unclear on we embarked on a couple month journey of confusion. Between my doctor’s office being technologically stuck in the 1990s, their unwillingness to fax or call in a prescription, the “office lady” who is only in 1-2 days each week and confusion between the pharmacy and my insurance I wound up without my medication. For the past few months I’ve had one or two weeks where I received a sample from his office but mostly have been without it. A few weeks ago things did get ironed out and a one month supply arrived in time for me to take one dose before oral surgery which would require being off it for 2 weeks.
Here is where it gets interesting and where I think my story has jumped a shark of it’s own. I finally manage to get into a dermatologist for the psoriasis for the first time in years. You see I am not even sure how it happened but once pain became a daily part of my life I began hyper focusing on caring for & treating the arthritis portion of my disease; to the detriment of many other areas of my health. My kidney doctor calls my PA “the elephant in the room any time I’m in any doctors’ office”. After hearing the summary run down of my disease and treatment for about 5 minutes the dermatologist asks me, “Do you know what happens when you go on and off Enbrel like that?” He answered before I could. Which was actually nice because remember my instinct that it was somehow less effective was shot down completely by the another doctor. In a nutshell, you build up antibodies every time you are off it and then when you go back on it will be less effective! I almost fell in love with that man on the spot! The next thing he does is look me dead in the eye and say, “You have got to see yourself differently. We are going to help you. This is what I do, who I am. I heal people” and you know what I believe him. Our conversation moved to yoga and meditation and how literally visualizing myself healthier and able to do a full yoga practice will help me as much as anything else he can do. Turns out he had recently returned from a trip to Ganges River in India to attend a celebration and his meditation practice has been 43 years so far.
The visit was a game changer. So maybe it isn’t my “jump the shark” moment because it feels like my story will begin to improve from here. My instincts had been confirmed. My natural feelings towards self care as a major component of health care were echoed by a doctor, my doctor, and I felt truly seen and heard by a doctor for the first time in years.
He told me the Enbrel won’t do me any good and I am going to offer the few shots I have remaining to my Rheumatologist to use as samples for other patients who might find themselves in need of them. Goodness knows I have benefited from samples and the like in my time. It will be my parting gift though. I need not return to a doctor that dismisses my ideas so quickly and is obviously not as knowledgeable as he really should be if he is prescribing Enbrel to patients. I have a referral for a new one and an appointment in January. In the meantime I try the Humira. I took the initial dose on Friday.
The crazy thing is that during the above mentioned fiasco with the antiquated systems at my doctor and my insurance company we almost switched me to Humira because I mistakenly thought that they would not approve the Enbrel at all anymore. We soon found out that they would and switched right back to Enbrel and that in an off itself caused the several week delay in my treatment! Oh well lesson learned, go with my instincts, even if it means having to push back a little with a “trained medical professional”. After all I live in this body every day!