Don't Come Back

I wrote this post almost a month ago but didn't publish it because I was still trying to wrap my mind around everything. I was upset and frustrated and feeling pretty hopeless. I offer it now, even though it is totally after-the-fact and included an update at the end. 

I saw my general practitioner a few weeks ago. I needed to discuss a medication with him and wanted his help figuring out which specialists to see next and what to do for myself as my health continues to decline.

It was one of the worst appointments I've ever had with my general practitioner. I did get my referrals but I also got some things I wasn't expecting.

This man has been my doctor for 13 years. He has watched my children grow up since birth. He stitched Clone 1's face back together, in office, after she took a tumble and cut herself open. He was the first person I saw when I started feeling unwell almost 5 years ago. He typically has a way of setting me at ease about whatever is going on. He's very knowledgeable but also accessible to those of us who didn't go to medical school. He explains things in a way that I can understand and he's compassionate as well as likable, traits not often found in doctors it seems.

On this day, though, that is not the man I saw.

I told him that I'd bought myself a cane. Between the disorientation of my "dizziness" and the swelling in my knees and the nerve pain encompassing my entire legs, having the support of a cane has been a life saver on my worst days.

Dr. response: You're too young to need a cane.

He then reassured me that I'm not dying, that the medical community has a pretty good grasp on diagnosing terminal diseases, acting as though this should bring me comfort. In fact, it did not comfort me at all. I'm glad I'm not dying, of course, but for the chronically ill, the worst sounding thing is being sentenced to live out a long unhealthy life with symptoms you'd give anything to get away from.

And then the worst of it came. It felt kind of like a cold shoulder. It sounded like I'd been removed from my doctor's care. I can still take my kids there for well visits. I can still show up if I need antibiotics for a bacterial infection. But he's done helping me with the thing I really need help with: this chronic illness.

I fought back tears while I waited for my blood to be drawn, yet again. I fought back tears as I signed a referral form, indicating that I understood that the specialists I will be seeing next are now "in charge" of my care and that my GP will no longer assist me with any of it. They will not tell me the results of my blood tests. I'll have to wait for my specialist appointments.

I fought back tears as Mr. Amazing drove me home and then fought them back for the remainder of the day. Because I don't want to cry about this. I know it isn't personal. I know that my GP has done everything he can to help me and that he truly isn't able to do anything more for me other than set up referrals.

Still, isn't his job to manage my care? To help me figure out where to look, who to see next? Without him it's all up to me, a person who couldn't manage to get a passing grade in college biology. I only understand about half of everything I research, depending on how much scientific lingo is used in what I'm reading. I'm not able to put the puzzle pieces in order because they came without a box, the picture is unclear and I don't know what image I'm supposed to be making from the pieces. This is why I see the doctors...they are supposed to know or at least help put the pieces in place so we can see the whole picture. They are supposed to know how to help me.

What is truly disheartening is that this isn't just my own story. This is a story that links me to thousands of other warriors fighting for a diagnosis, fighting for care for their illnesses, fighting to have their pain and suffering heard over the din of a failing medical system.

I don't know what I'm going to do if these two new specialists are unable to help me. My resources for help are rapidly dwindling, not unlike the majority of my friendships. I know I will continue to try to make sense of it all, with or without help. I just also know that I'm bound to make it further if I have someone knowledgeable on my side.


Update:
I saw a Rheumatologist last week. He let me talk and actually listened to everything I said. He didn't twist my words or try to simplify my suffering with a you-seem-fine-to-me attitude. And he believed me. He was compassionate and had a sincere desire to help. 

He felt pretty confident that I am sick with something outside of his realm of expertise, but he didn't let that deter him. He sent me over to the hospital with an order form for a bunch of blood tests that probably should have been done before but weren't. Many of these tests will answer questions I've had since the beginning that no other doctor paid any mind to. 

I felt a little uplifted after this appointment. No closer to an answer, perhaps, but it was refreshing to speak with a doctor who seemed to care and be on my side. I hope this is a turning point for me and my illness.

I suppose, time will tell.