Running to Stand Still
Rheumatologist appointment on Monday. Physical therapy appointments Tuesday and Thursday. Pain management clinic Friday. Nutritionist appointment next Monday. This sounds like a lot already, doesn’t it? I still haven’t included several more appointments with various providers and specialists that I’ve been going to lately: endocrinologist, psychologist, integrative medicine physician, iron infusions, weight management clinic, primary care physician, etc.
Managing a life with RA is exhausting!
The appointment list goes on…and on…and, well, seemingly never ends. Exhausting, right? It is. Making, going to, and keeping up with medical appointments is a full-time job and it feels like it’s taking over my life. The main relationship in my life is with the appointment scheduler or triage phone nurse I talk to several times a week. How sad is that? I’m probably exaggerating a bit, but I’m not far off, really! Frequent and regular medical appointments, however, seem to be the norm and a requirement in the life of a chronically ill person.
Sometimes I try to imagine what it would be like to not have to go to all of these appointments anymore. What a sense of freedom it would be! If I think hard enough, I can still recall some fuzzy memories of what life was like before I got RA, when I was a healthy teenager and maybe went to the doctor once a year for a checkup, if that. I miss those days. Days spent living my life how I wanted, no matter how ridiculous or boring, instead of spending hours every week sitting alone in drab waiting rooms, waiting to hear my name called by a nurse. Hours spent waiting to get vitals taken, waiting for test results, waiting for the doctor to come in the room, waiting to be done. Waiting to be made well again.
Do I really need all of these appointments? I’m not sure. I think I do; I really want help getting and feeling better. My hope is that once my RA is more stable (I’m currently in “limbo” waiting to see if Rituxan will work), my health will also be more stable and improved. That’s the goal anyway.
An engaged RA patient
Thinking back, I’d say for the last 10 years of the 20 years of having RA I’ve approached my healthcare in more of an assertive or perhaps aggressive way. I desperately want to be healthy, or as healthy as I can be while having RA, so I try to be proactive when it comes to my care. But are all of these appointments really helping? Or are they actually causing more stress in my life and therefore adding to my pain and illness? I don’t know, but I think now is a good time to pause a bit and try to think about it more.
As many who live with RA know, having the disease means that you invariably deal with a smorgasbord of multiple health issues in addition to RA, and it’s often difficult to find adequate treatments for them all at the same time. Is my endocrine system out of whack because of my RA (probably, thanks to years of prednisone)? Are my anxiety and depression from RA or are they actually making my RA worse? Who knows; it’s a “chicken and egg” scenario with that one, I think.
There are a lot of “Catch-22” and “vicious cycle” situations going on when it comes to RA and its comorbidities. I firmly believe that everything is connected when it comes to the human body: if one area is sick or hurting, it will undoubtedly affect other areas somehow, whether physical or mental or both. So what do you do when your RA is threatening to blow up the rest of your body, and health, and life? Is running to a million different doctors all the time the answer?
Could it be the healthcare system?
When thinking about this problem of time and energy-consuming medical appointments, I also wonder if maybe our healthcare system is partly to blame for making all of this more of a pain than it has to be. For example, my pain management clinic requires patients to participate in months of physical therapy as well as seeing one of their psychologists on a regular basis. This is part of their “program,” and if you don’t follow it, then you’re out. Of course these strict rules have made me question if being part of this pain clinic is best for me and if the benefit from it is worth the negative aspects. There are times when I really need relief from pain medication and the pain clinic is the only place where I can get it. But how am I supposed to work a full-time job and get to all of these pain clinic appointments, never mind all of the other ones I also have to go to? I actually took a few years off in between the first time I joined the clinic and now; all of the extra appointments back then became too exhausting and expensive for me to handle. I’m currently still at the clinic and following their program, so I haven’t come to a clear decision on this yet.
There are many times when I wished that I could just take care of some of my medical needs over the phone or by e-mail instead of having to physically go into the clinic. I know there are rules and regulations and protocols to follow, but I have often felt that my physical body sitting there in the exam room chair wasn’t that necessary for the care I received. If some new or strange symptom is happening, then of course it makes sense to see a doctor in person. What irritates me though is when I have to be inconvenienced for basic, routine, ongoing care.
Everybody is busy and stressed-out, patients and doctors (and support staff) alike, and sometimes I feel that patients are inconvenienced more than they have to be. Couldn’t we all possibly benefit if I didn’t have to drag myself over to the clinic for every little thing?
Can technology come to our rescue?
Living in a world of smart phones and FaceTime and Skype, isn’t there a way to cut down on all of these in-person visits if there is no harm in doing so? It’s especially irksome when you suffer through the stress of scheduling and getting to an appointment, then waiting forever once you get there, and the provider then barely spends 10 minutes with you. Luckily my rheumatologist isn’t like this, but during the 20 years of the myriad of medical appointments I’ve gone to, I’ve certainly experienced the negative scenario of being treated like a hurried number and not a human being.
I don’t know what the answer is to the stress and frustration I feel from being overwhelmed by medical appointments. What I do know is that I’m exhausted and sick of it and that my life, my real life, is suffering because of it. I’m stuck spinning around and around on a cruel carousel of endless doctor appointments, unable to get off or see any significant results. Doctors, I’m running to you for help, over and over again. Yet I feel that what I’m mostly doing is running–running just to stand still.