I haven’t written much about the Constant Companion lately, because nothing had changed. I continue with Entyvio infusions every two months, and my symptoms are the same. Since I live it I really don’t need to write about it all the time, and I’m sure you don’t want the gory details, either. The humorous reimagining of this pulp fiction novel cover art says it all.
2018 has brought a fly-in-the-ointment, wrench-in-the-gears upheaval. Up ‘til now I was infused by home healthcare nurses in various states, many times right in the motorhome, but that is officially over. This year, under my new healthcare plan, all infusions must occur in the state of Washington. It’s pretty hard to be a nomad when you are required to be in the same place every eight weeks.
For the first 18 months after I quit working, I continued on the firm’s health plan through COBRA. The following year, I purchased a plan under the Affordable Care Act. Both plans provided nationwide coverage, and not just in the event of an emergency. Sure, there were challenges: Not every state allowed its home healthcare nurses to follow a Seattle doctor’s order, so I had to get creative, plan travel to certain states accordingly, and even leave the rig and fly or drive out of state a couple of times to get my therapy.
The change this year is a lesson in “No matter how bad you have it, it can always be worse.“ Of course I am thankful that I could purchase a healthcare plan at all, and I have a few choice words to say to all those white men in suits who tried several times last year to take that opportunity, dare I say basic human right, away for me. It’s a terrible feeling when your health, ergo, life, hangs in the balance, dependent upon the actions of one man with a brain tumor.
So what does this mean for my RVing plans going forward? I have already scheduled a flight from New Orleans to Washington for the February infusion. I’m spending May through October in the Seattle area this year, so the fallout will not be as severe in 2018. I could futurize about the planned trip across Canada in 2019, or my return to New England and the East Coast in 2020, and how I will logistically and financially manage to fly back every two months from various cities, but I’m not going to think about that today.
A lot could happen in the coming months that would change the face of this setback. More and better plans may become available on the exchange (with this current administration, yeah right, but a sick gal can dream). I am awaiting a hearing with the Social Security Administration this year, and if approved for disability I would be eligible for Medicare. Entyvio may become less effective, or continue to aggravate my liver (liver enzymes were elevated in October, back to normal in December). If my doctor discontinues it and prescribes Stelara, that drug is self-administered via injection to the abdomen and could be shipped to me anywhere in the country. (Some of you might be wondering why I don’t just go ahead and switch to Stelara now, but I’m not willing to make a change in a therapy with imperfect improvement simply because of this major inconvenience to my travel plans. What if Stelara doesn’t work at all? It’s the last drug approved by the FDA to combat my condition.)
In the meantime, I making sure I’ve updated all frequent flyer memberships with the major airlines, switching credit cards for miles, and crossing my fingers I’ll get bumped for travel vouchers. Flying six times a year will put a serious dent in my limited income.
Still, did you hear me say I’m abandoning my plans? No, you did not. And you won’t. As was written in the song “Crazy He Calls Me,” “The difficult I’ll do right now, the impossible will take a little while.”