"Suffering the Slings and Arrows of Outrageous Fortune"

Last week, we had an appointment with Dr. G at the Pain Management Center. Since we saw him 2 months ago, Em has made major strides in every area of concern – and even in the areas that we haven’t made actual improvement, we are moving forward. So, we were pleased to be able to report real progress.

Unfortunately, I felt like I had to prepared for this appointment with all of the intensity of a Navy Seal embarking on a mission. I had determined there were 2 hills worth ‘dying on’ at this appointment and had my strategic battle plan prepared.

First, at the last appointment (which I couldn’t go to because of my battle with that stupid kidney stone), the doc examined Em’s joints pretty aggressively. Bending them back, hyperextending them, etc. It hurt and it continued to hurt for days afterwards. So, I felt compelled to prevent that from happening again. After seeking input from the folks on the EDNF message board, I came up with a plan I was comfortable implementing. But I had no idea how it was going to go over with him.

The second hill worth dying on was this aerobic exercise business. I get that exercise is important, I really do. But, he wants her bicycling and walking, apparently with an aim to work up to jogging. That is insane on so many levels and I am not sure what is in his mind. We feel it is prudent to focus on PT until we get the autonomic dysfunction figured out and get the mast cell disease under control, not to mention we want to protect her joints until she is strong enough to safely exercise. I knew this one was going to be an issue.

{I do find it ridiculous that a relationship with a doctor who is supposed to be helping my daughter should be so adversarial. But, I also feel they leave me little choice. They push and make snide little comments when we don’t do exactly as they want or when we happen to disagree. I would love to have a doctor who I really could go to and ask for help, ask for input and who would listen to what I have to say. Unfortunately, we are stuck with this guy for now. He may not realize it but he is on probation and can be fired at any time. He didn’t get himself fired this time but he didn’t do anything to get off of  probation either!}

So, the first hill was anti-climatic, no dying there. He just didn’t examine her joints – I had my mouth open to start my speech but all he did was test her strength. I don’t know what his standard is, but for some reason he didn’t feel it necessary to bend her joints around. I am grateful but a bit confused. Not sure if there is a good reason or if it is an issue that is just postponed until next time. I think I would have preferred to just have it out, but wasn’t really given the opportunity. I am still a bit baffled by it but at least it was one less thing to argue about.

The second hill, we did hold firm. He disagreed. He was a bit condescending. He dissed our PT who had an opposing opinion. But, in the end, all he could do was say, continue with PT and contact Tinkle about what exercises are appropriate. I feel confident that Tinkle will not approve jogging and bicycling around the neighborhood.

The other issue that came up is the psych program. I do think it could do some good possibly a lot of good – they can teach her techniques to deal with the pain. However, when I recently tried to make an appointment (so we wouldn’t have to argue about it at this visit), no one in the dept. could help me so we had to discuss it at this visit. Grrr. I just don’t appreciate their attitude – so condescending. They were snotty about it but we just smiled and nodded and saved our effort for the hills worth dying on.

The one concern I have is that it turns out that they want us to make an appointment with the psychologist we saw at the headache clinic, instead of the one who talked to us at the pain clinic. If she is affiliated with the pain clinic, fine. If seeing her in anyway leads us back to the headache clinic, that is a problem. We liked her well enough when we saw her at that disastrous visit, but we want nothing at all to do with the headache clinic. So, I have to get that sorted out.

But, beyond all of that and beyond my distinct annoyance with their snotty, condescending attitude, Em is better. SO MUCH BETTER! Dr. G had to acknowledge her improvement and I am relieved beyond words. This time last year, we were starting a scary downhill slide. And now, she is living again.

So, I guess maybe I can put up with the occasional snotty comment from a doctor we see every few months!

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