At Fifty some, I contracted RA. I never heard of a family member having such a thing, so maybe it’s not inherited? Over my life, I’ve exposed myself to a lot of chemistry, especially in the war zone.. who knows exactly how an immune response turns bad in every case?
It took some doing, but eventually I placed myself in the hands of a good Rheumatologist who took the time to explain the mechanics of the disease and explain >my< options. Today, I still enjoy 10 mile walks with my wife at a wildlife watching slow pace of 3.1 miles per hour average. If I tell the truth, it’s her pace that limits our speed, but for goodness sakes, spare my life, and don’t share what I say. The drug I’ve been taking has done an incredible job of allowing me to live a very normal life.
How many suffer permanent joint damage because Doctors don’t recognize the symptoms? Lots of them, and as one Doctor told me.. we were trained NOT to hunt Zebras. And.. as I’d tell you, that’s a good way never to find one. It’s a reminder that there is no substitute for YOUR involvement in troubleshooting the cause of your affliction, and you need be persistent in your pursuit of a real diagnosis before the heavy damage is done. Yes, we’re talking our stuff.. DIY.
Up till age 65, I took a shot every two weeks at home. I ordered the medicine, I took a blood test every two months, I scheduled my own appointments, and slowly built some trust with my doctor that she would see these tests arrive at her office at the proper intervals. This allowed me 90 day prescriptions, and far less hassle.
Regardless of the promises over the years, my employer told me that due to changes well beyond their control, my medical would become more conditional than it once was, I don’t suggest it’s different than most jobs, but I do remember complaining that others had better pay, and the standard response was always, “but you’re retirement and medical will be among the best” 🙂 I did expect my premiums to keep going up, but I didn’t really understand that what is covered prior to 65 may not be covered at 65 and after.
At 65, I was told that remaining on the same medication was not an option, that there really was no way to bill my insurer for the drug when I gave it to myself.
The many changes and a little fear caused me to get a number of options (extra insurance) on top of my medicare. The true test is seeing how it all pays and what the co-pays are.
But this post is not about details, it’s not about pain, or misery, it’s about change and anticipating it. It’s about the new plan, and my first day. I need tell you my Doctor is the best, that her staff has been wonderful, but they say there’s no shot I can give myself under medicare rules, and there is no shot they can give me in their clinic just up the street.
So much for an old guy to process, this change I need to make, and I’m hoping that what I type here will warn at least one person with RA to anticipate the changes and know the world is in constant flux, can we keep up with the changes and anticipate what’s ahead? This new drug, Cimzia, it’s a little like a magic bullet, there is two ways the drug is administered, but the self injection is not available under Medicare rules. I don’t suggest there’s not a good reason, I just don’t know what it is yet.
That first day.. my injectable drug of choice was no longer an option was like a benchmark. The new plan is that I will jump in the car, and go to the hospital for my shots. Considering the alternatives, I make the appointment. The person in the Infusion center explains I qualify for a parking permit, that they validate if I decide I want to park in the garage, that the infusion center is near the big fish tank.
My appointment is for 0800 hours on a Friday. I hadn’t thought much about it, but there I am in rush hour traffic chugging along, but I still arrived 15 minutes early, it’s what I like to do. As I walk to the counter, the receptionist greets me with a big smile, and one of the two orders on top of her desk is mine. I asked her if she needed my insurance info, she said no, we got all of that now that we’re all connected, meaning the info my Doctor had entered was available to her as well.
I was introduced to a Nurse, she would be giving me my shot, I followed her into a room and was offered a comfortable chair. The extra care I was getting made me nervous, and offer of coffee, juice, a bagel? I looked down at my knee cap, and it was smeared with what looked like a grease mark! I was fresh out of the shower, did I miss that, or was that rag I kneeled on to tie my shoe greasy? Imagine, me having a greasy rag…
The nurse opens a sealed bag and pulls out a pressure cup, hooks it to a machine and takes my blood pressure, it’s elevated, and I explain I’m more than a little anxious, and she should expect it to come down later. I wonder about the charge for that disposable pressure cup? An Aspirin is typically $8 or more in a hospital.
The nurse explains she’s waiting for my medication, she smiles and excuses herself. The attention I’m getting is still making me nervous, perhaps I’m worse off than I knew? Are they treating me this nice cause I’m now old? Maybe it’s cause I have RA and I’m now 65? Then I think about hospitals and the competition, maybe they’re just nice cause they want me to come back? The real reason might be is this infusion center gets visited by really…really sick people, what the heck am I doing here?
I think about flying, about how maybe I better get out to Tiger Mountain and jump off the hill and soar with my feathered friends before it’s too late.
A woman comes by my room, she asks if she can get me anything, juice, coffee, milk, a bagel? Maybe it’ll pass the time, I accept the offer of coffee, and it was there in 2 minutes, what service! But as I study her, I think it’s me that should be giving her a helping hand.
After I had been in the room for 15 minutes or so, a Pharmacist introduces herself and explains… “I am really sorry, your drug is not here yet, and I did some checking, according to the order, the latest they can deliver it is 11:00AM today.”
Since I have been in such situations myself, and hoping my customer understood, I was agreeable, I smiled and left a cell phone number to call. We agreed I’d come in at 11:00 for my shot. I walked the block to where I parked, and drove back home, hanging around sick people is no way to spend the day unless you’re attempting to cheer them up.
At 10:30, I got a message from the Nurse.. the drug not here yet, at 10:45, I got a call from the Pharmacist, you’re drug is here, and I’ll prepare it for injection if you are on your way back to the hospital? I told her I’d be there in a half hour or so, and off I went.
Being thrifty, I left my hospital wrist band on.. when I walked to the counter, a different receptionist had the scissors out to cut it off, the other receptionist told her.. no need, he was just here, it’s still good. They call the same nurse, her plan is to squeeze me in among the other scheduled appointments, and I’m taken to a more elaborate room with a hospital bed, but she moves a chair in, far less comfortable than the first, but nicer than I’d buy for the shop. I think of the infusions they infuse, how I’m here just for a shot.
She explains she’ll take my blood pressure again, and she opens another one of those disposable pressure cups. I wonder, do they do this for everyone, or do I look like I have the plague? I did shower, but that dirt on my knee cap may have caused her to use a different protocol? Whatever we touch this guy with, we need to dispose of.. maybe most of the folks who come here are really really sick and contagious?
After a bit, my medication arrives, I promise not to cry, and explain to the nurse.. I don’t like shots, and I’ll be looking the other way. Perhaps my dislike of needles is the only thing that’s kept me from being an intravenous drug user? A guy needs consider the positive aspects of a mental thing. And yes, I did give myself shots, you do what you have to do, but you need not like it.
I was warned that I might have to sit there for a bit after the shot to see if this new biologic might cause a reaction in me, but the nurse said you’re good to go. As I gathered myself together, I thought about all the people I had been served by, and some were volunteers. The main receptionist that told me where the Infusion center was, the infusion center receptionists (two of them) the Nurse, the pharmacist and her staff. The parking lot security guy, the person offering refreshments. I felt catered too, and it caused me to reflect on what my friend Christy Johnson told me about her friend’s first visit to the hospital at 65 for a single dose of RA drugs under medicare rules. She got a bill for $38,000, yes, it was an error, but it nearly stopped her heart. I was wondering what was coming in the mail for this little visit?
There’s a restaurant in Seattle called El Gauchos’ the service there reminds me of what I got in the hospital, the waiters and staff treat even rude customers as if they were royalty. The food far better than hospital food, but I draw a comparison. As much as I like El Gaucho’s , I don’t eat there often because other places are cheaper, and I am pretty much a thrifty person.
But here, I have no choice, that shot I gave myself, now I depend on others to administer it, and there’s that loss of freedom I feel. I was able to go to the deepest woods, and take my medication along. But now… at least till I’m told different, I schedule around that hospital visit. I know I am sooo much better off than others, I’m not feeling sorry for myself, noting what feels like a benchmark change, like a dependence I didn’t expect to arrive because of a day on the calendar.
I think about how I was raised, how I raised my children, what I might not have shared with them, what others in the educational system told them, and how they may forever see the world differently than I do. Perhaps they’ll always think of me as the fool, as I know what big Government always seems to do given enough time. But would I be walking long if every insurance company could choose to dump me?
I do know writing this may be a mistake, perhaps DC will give orders to dull the needle at my next visit to the hospital, and maybe I’ll be audited by the IRS? What an old fool I am to even think of it. But my Romanian friends are realists..
I wonder how all these services I received during this hospital visit could possibly be less expensive, or better for me than the shot I took myself? I am totally relieved of making the choice, I can’t shop for the better price. It’s in my DNA to do so.
I know I am no longer part of the majority, and I think of my next visit to the hospital. There’s a service I qualify for, I can drive to the door, they’ll park my car and fetch it for me. If only I can change, if only I can learn to relax and take advantage of these things offered. I plan to use the minimum of services and privileges, and hope I can return to doing as much as possible myself.. after all, I am a DIYer 🙂
If this doesn’t work out well, I am a VET, and I might see what their plan is for Vets with RA. The main reason I write this is to warn others.. if you think there’s a possibility you have RA, don’t expect the first doctor to diagnose it.. If you do have RA, research what it will mean to turn 65, and plan ahead. It’s my hope that these new biologic drugs get cheaper, and that someone will trust me to stick myself as I was doing all along.
Have a great day..