Last week was a “hard” week. 

I added quotation marks because I’m not certain that hard is the most accurate word to use to describe last week’s experiences. 

Let me tell you about it:

On Monday, I went in for my three-month follow-up with my rheumatologist. These appointments are rather brief, mainly because my doctor feels like things are “under control.” My current medication is “working” in that my inflammation levels have stayed more-or-less steady for the last year or two. (Again, the quotation marks because working doesn’t exactly represent my daily experiences.) From the doctor’s perspective, everything is going well. 

But it’s not.

Before he hurried out my exam room and into the room next door, I told Dr. P that I understand my labs look good in his eyes. But, I told him, I feel awful. Every. Single. Day. “So even though it looks like I’m doing great, I’m not,” I told him. 

He nodded. He told me all he can do is go by the numbers.    

On Tuesday, I had an appointment with my physical therapist, C. I haven’t been to physical therapy in over a month, because C had been on vacation for a while. However, I have been consistently doing my PT homework — daily walk(s), using my pedal machine twice a day, and working through my stretches/exercises every other day. 

C and I chatted while I used the armless-elliptical machine. He asked about my walking — the distance covered, the amount of time it takes. And I told him that my son told me it looks like I’m limping more than I ever have before. We talked about my treatment plan for the next few months. 

Because the reality is I am not an “easy” patient. (Again, easy may not be the right word.)

Doctors, in my experience, tend to focus on the labels — the diagnosis, the medication, the numbers. So my rheumatologist reviews labs and on his end, things are going well. Yet, each time I see him, I try to explain just how hard things have gotten. He knows I own a wheelchair. He knows how hard grocery shopping has become. He knows I wake up, every morning, already in pain. 

Likewise, as great as C is — I have worked with several physical therapists over the years and have never worked with anyone like C before! — I’m not the type of patient he is used to working with. I don’t have an injury that twelve weeks of physical therapy will help heal, for example. I don’t always experience pain in the same spot or in the same way. Some days are better than others. And perhaps most “challenging” is the reality —I will not get better.

Over the years, I have observed doctors and physical therapists become “frustrated” with me — through no fault of my own. The fact is I don’t have an easy-to-understand or easy-to-treat diagnosis. I don’t have a chronic illness that has a well-established prognosis. 

I get it. But that’s all out of my control. 

The goal, as I have told both Dr. P and C, is to work on strengthening my left leg and to maintain that strength as much as I can. Because ultimately I am trying to remain as mobile and independent as I can, for as long as I can.

It isn’t easy. 

But I’m working hard at it.