My GP was stern with me. At first. I took my walking stick for the first time. I have been using it much more often these days, for balance reasons. And so that people give me room. And so that people don’t give me the evil eye for occupying a seat in a crowded waiting room.
He mentioned it and I told him exactly that. It doesn’t do jack shit for arthritis but it helps with balance and it makes people part like the red sea. So it’s serving a valid purpose.
I complained about the state of my life. The best day in two weeks meant that I made it to the grocery store. Pretty shit hot, wouldn’t you say?
We talked about my cardiologist and I told him what a prat he was. And he pretty much agreed. My cardiologist is a prat.
We discussed my pain medication use and he was fine with my increased dose. He refilled my scripts, for both 10s and 20s of Targin, and said he was happy with me taking the daily dose that I require at my discretion, (within reason), being that I am seeing my rheumatologist in two and a half weeks. I told him my whole goal in life was just making it to that appointment. Even though I know she hasn’t any idea what to do next. I just have to hope she’s prepared to keep prescribing Xeljanz, because it is definately helping with pain. Fatigue, not so much.
Her idea is to restart methotrexate, but that will not be happening. He agreed that would be stupid.
And I told him, again, that it wasn’t so much the pain that was stopping me, but fatigue. More than RA fatigue, or more than I usually experience. I can work through a lot of pain and go do a spin class, but fatigue drops me, along with dizziness, headache and nausea. And that if I’m not going to gym, that’s a sure sign that things are bad. Very bad. Because gym is my last contact to the real world. Last thread of normalcy.
And then I overstepped. And I said if everyone is telling me that my brain is fine, my heart is fine, my blood pressure is fine, my bone density is fine, my blood sugar is fine, then why the hell do I need to get off prednisone anyway?
And he snapped.
He’s never raised his voice to me before. He’s a very soft spoken, gentle man. As well as a gentleman.
He said “Because you’re damn lucky you’ve dodged the bullets so far! Your heart is working hard, your cholesterol is climbing, your blood sugar is only just ok. You won’t dodge the bullets forever. So far you’ve had warning shots. TMIs, baby strokes. The next one might be the big one. The one you don’t bounce back from. And you’re 46. Just a baby. You should have another 30 years at least. You’ve got two kids. You’re prepared to risk all that so you can go to a spin class?”
Ouch. And crap. He’s right.
He must have seen that I was about to cry, so he softened. He said he wished there was more he could do. He wished there was safe prednisone, but I had to get under 5mg for that to be the case. And that he would do everything he could to help. He said it was the worst part of his job when he had patients like me that he just couldn’t fix. That I didn’t deserve everything that had happened to me. And if he could take away my pain he would.
So I did the only thing I could do. I cried. Fuck it. Don’t you hate that?
He squeezed my hand, and said its lucky I don’t wear makeup. And then we laughed.
He asked me if I was sleeping and I said no. He started writing a Valium script before I asked. He handed it to me and told me I could handle it. And if anyone could make the best of things, he thought it was me. And that I was pretty amazing to keep smiling…most of the time. But its OK to cry sometimes. He also said he realised that I do not have anxiety. Everyone gets anxious sometimes. That doesn’t mean you have anxiety. And that I am not depressed. I am sad. There’s a big difference. He said I have a lot of things to be depressed about, but I’m naturally happy person. And to come in any time if I wanted to talk, because even happy people can become depressed and he wanted to prevent that.
He was really great. He said all the right things. I think a lot of doctors have been writing him letters about me, and he forgot who I was for a while. I’m stubborn. I’m pig-headed. I rant. I can be rude about his colleagues in the medical profession. But I’m smart as well. I’m logical. And I want to live…a lot. I want a lot more life than my body will give me. I want to run. I want to climb mountains. I want to travel Europe. I want to go on a cruise. I want to take road trips. At this point I’d be happy if I could walk 50 metres. And the hardest thing in the world for me to do is…nothing.
And accept is that my life is going to be four walls, my couch, my computer, and my imagination. I want more. Much more.