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.
Well, THAT was a good appointment. He got it right that time…good!
He really, really did. Brought me back into line. Determination is good, being so stubborn that I lose sight of the big picture, not so much 🙂
Glad it went well.I do the same with my stick not for balance but to be more visible and it certainly shut up one guy who was yelling at my partner in a disabled parking space asking can you read ? then I get out the car with my stick and he’s all oh sorry. Take care.
I still can’t believe that people feel justified in questioning people with disabled tags, and even yelling at them! It has happened to me too, but where do people get off??? Sorry doesn’t really cut it…I hope he learned something. But that IS another very good use for a walking stick. Protect you from rude idiots!
Oh I like him!
He really is a great doctor. I’ve been complaining about him, but the problem might just be me not accepting reality, rather than him!
You cried, I cried! He sounds like he’s really listening to you and is being totally honest with you and that makes for a great doctor. I like where he is coming from, he’s saying the right things and that can only help you.
He hit all the right notes today. I have been seeing him for so many years now…sometimes I need him to give me a reality check. And he did that perfectly, even though it’s a very uncomfortable experience for me, to say the least. Sometimes I am so stubborn I lose sight of what’s really important. He reminded me. And gave me lots of support! He is a great doctor :).
Hugs….Just lots and lots of hugs! I feel you. Hang in there!
Thanks Melissa. Hugs back Xx
This all feels so deeply familiar and reading it in someone else’s words make the whole experience feel less alien – and less alienating. I had a nearly identical experience with my doctor, but his reaction was only initially like yours. He seemed bewildered and lost because he couldn’t cure me, couldn’t fix me. Instead of being honest about it, he kicked me out of the practice a week later. I think he just couldn’t deal with having someone so young that he just had to watch suffer. It was brutal for me, as well – I’d trusted him for years.
I also hear you on wanting to be OUT IN THE WORLD. I’m a fencer, I love orientieering and horseback riding, I love to go on adventures – unplanned trips just because. Or at least, I was all those things. If my kids saw that woman, she would be unrecognizable as their mother. What example do I set for them, being sick all the time? I hope they see my determination, the strength it takes to get out of bed every morning when we’re on our own and get them to school. I fear that they just see an adult who doesn’t have to work as hard as they do. What do you do?
I understand Raenne. I feel the same way with my kids. Do they get it? They were very young when I got sick, and they just barely remember the fit mother who used to play soccer with them, and be up for anything and fully able to keep up with them. I think they do. I think our kids get sad sometimes too, because lets face it, they miss out, and that feels worst of all for us. But ultimately they know we love them, do everything we can for them, and we’re doing our best.
I am so sorry your doctor did that to you! Sometimes they just can’t handle the challenge, that they can’t fix everything. But dumping you is extremely cruel! I hope you can find a more compassionate GP, because a good GP is one of the most important things. Unfortunately we spend so much time in their offices sorting out the latest new symptom or diagnosis. And we need someone who can manage the big picture. And sometimes someone who will just provide some support. Because being sick is hard, really hard. And trite as it sounds, having someone tell you they are in your corner and there for you can make the world of difference. Hang in there Raenne. I hope you can get out and do something in the real world, even if its nowhere near the same as the things you used to love to do. I’m hoping to get back to gym this week, just a light workout. Luck to us both!!!