I've been having a tough time of things since I had that nasty flare in my knee 2 weeks ago. Its much better btw, I've gone on several 2-3 mile walks this week and I'm fine. :o) Rhu told me no running for now though, I was supposed to do a 5k on Saturday, and I still will, I'll just be walking, and that's alright too.
I went to a foot specialist today in DC about my ankle. The last guy put me in an arizona boot to fuse the ankle, and I wanted to see what my other options are. This new foot guy was referred by my rhu, he's a professor at Georgetown and supposedly an amazing doctor. My appt. was a 9 and he didn't come into my room until 11:40, and then when he did he talked more to his team than to me, and used "doctor code" which I totally do not understand. I'm confused because he was in and out so fast I didn't fully understand what he wanted. He's sending me to physical therapy for 6 weeks, taking me out of the Arizona boot and putting me in a much smaller orthotic which scares the crap outta me because before I was put in that boot last year I was barely walking, and since then I'm walking/jogging on average 8-10miles a week, I've lost 30lbs and I've gotten much healthier. I am terrified I'm going to revert back to where I was a year ago.
I'm frustrated because I feel like I'm not getting anywhere, idk. Then I talked to my sister about it just because I really feel like I need some clarity on this and her response was that I keep going to all these doctors and no one is helping and do I really need to do all these medical appointments? She has no idea how bad I want to give up on the whole doctor thing right now, but I know that if I stop treatment I very well may end up in a wheelchair before I'm 40. I can't accept that. I just want to be healthy. I'm getting really depressed. idk, I'm just really frustrated.
Angie I am so sorry you are going through this now. I too have a family that does not get it. I wonder sometimes if that isn't somewhat my fault as they do not see me when I am bad. Know you can always get the support you need here. We know; we get it! I also do some really weird things the doctors ask me to do because I am terrified of being chair or bed bound. I would do the PT and try the new orthotic but I would also call the Triage or office nurse and ask for an explanation. I do speak the language (38 years an RN) but sometimes the appointments happen fast and I miss something. I also get a up of coffee and write what is said and done in my notebook that fits in my bag. My husband is unable to attend many of my appointments and my sisters don't get it. I am sending you warm hugs and prayers.
He may be an amazing doctor, but if the communication is that poor, he may not be an excellent match for you. With doctors like this I usually walk in with a list of questions, and space for answers. If I miss an answer, I'll ask again and again, until I get it. Bringing someone with you to appointments with this doctor might be helpful as well (but not your sister maybe).
My personal feeling is that I am typically willing to try PT and give it a shot if recommended. You can likely communicate much better with the PT and can keep tight tabs on any progress or backslides.
It's a tough situation, especially when you've made such awesome progress.
Ahhh Angie. Much sympathy to you. It is always so confusing after Dr. visits. I had a similar experience at the breast specialist last week. My head was spinning after I left the office (4 hours after I arrived). Sometimes a few days can help things seem less confusing. I love reading what stoney and michael in vermont write. They are so smart with this stuff--and seem so calm, too. I hear your fear, frustration and depression. You have to find a partner in sharing those fears. That could be your rheumatologist, your PT, your psychotherapist, your friends. But you shouldn't let those fears and worries go unnoticed. In attending to that worry you will inevitably help yourself find a smoother path forward. Breaking down in front of your doctor is not the worst thing. And as for doctors more interested in teaching their team than talking to their patients...I have no time for that. And from your reaction, neither do you. He may be well reputed but if he has an ego the size of an exam table then there;s little room for you in the equation. You need a partner in treatment. This guy hardly seems to fit that description.
Hang in there and here and we'll all help each other make a plan for feeling better. Good luck on your 5K. My goal is to walk the dog in the sunshine this afternoon. Just a couple blocks will do. Although I do miss running my 4 miler round the neighborhood.
Thank you Michael, Stoney and Janeatiu. (I'm feeling MUCH better today, btw) Yeah, it seems when the PsA progresses to the point where there has been joint damage that needs to be addressed, things start getting complicated. I have to keep in perspective that although my ankle was damaged due to the arthritis, it is now a separate issue that needs to be dealt with. Its like creating an index in my brain.
I spent some time last night thinking about what I could have done to help understand the ankle situation and what to do about it and I realized I have just one question that if I could get an answer would clear everything up. I just need to know what is going to happen if I do nothing. This will put the whole situation into perspective as far as how serious it is and then I feel like I can be confident making decisions about it. My Rhu thinks I need an ankle replacement, but both foot doctors she's sent me to have wanted to do everything else possible before they even consider that an option, and the first guy literally told me, he would not operate because cutting into my ankle would be like, "cutting into a hornet's nest" so I'm getting conflicting feelings about the severity of the issue.
I think I just have to find a way to slow down the doctor next time. Hope you have a wonderful walk Janeatiu.
Glad to hear you're feeling better today. I've been known to ask just that question with my car and with me. . . What will happen if I do nothing? In some cases, it will create other problems. But if the problem is still fixable at a later point with minimal complications, it's a reasonable choice to do nothing other than control pain.
I'm hoping to be able to run a 5K again in the spring. Every year the local running club does a Mother's Day 5K. First off, you get a cool tech T-shirt from it, and I've done it 3 years in a row now. Also, it gets me away from my kids and doing something for myself. One year I almost had to walk it, as I had a bad flare in my hips. But it was at its worst when I started, and get easier after 10-20 steps. And I go pretty slow. It's definitely NOT a race for me.
Oh Angie,
I think we can all understand what you are feeling. My take is to get all the info you can from specialists, including your question what happens if I do nothing? And then with their help decide what you want, what your goal is and how best to achieve it.
PT did and has worked well for me in retaining as much mobility as possible, and helping to keep core muscles strong as they treated me holistically and were aware that any part of my body could be affected by PsAm
Good luch Angie and I’m glad you’re feeling better today x
