Thursday, October 17, 2013
I have 5 appointments with the orthopedist this month. One was last week and I had another today. The doctor I'm supposed to be seeing isn't even coming into the room (the first appointment with "her" weeks ago she came in for 10 minutes and haven't seen her since) her fellow is the only one seeing me. It seems like a cop out. They told me they'll only see 1 joint per appointment, so last week was for hips (and SI joint), today was for back, then I planned on wrists, knees, and shoulders - but I could switch to any joint I want. Today he seemed annoyed that I was back again, so I pointed out that they will only see me for a half hour and 1 joint at a time so he will see me several times this month, and he wasn't happy. The appointment went from bad to worse. He flat out SUCKS at the physical exam (I've had enough exams to know when they're just faking the effort or when they're really paying attention to what they're feeling) and really has no knowledge about anything that's not a sports related injury (which is why I've asked more than once to see someone who is NOT at a sports medicine clinic, but I keep getting sent back there). I was talking about how my back has been bad for years, how my mother (who has bad joints from EDS, but not even close to my severity) had 2 back surgeries in her 50s, how I frequently have to pop my back because it seizes up and is in pain, and I want some ideas about how to deal with it. He couldn't wrap his head around it. He just kept repeating that I'm not bad enough to need surgery and he has no idea what would constitute "bad" enough to do anything at all to treat the progression, and eventually he just said he doesn't have any more time and walked out of the room. He said to not come back unless an injury happens to make it worse; clearly he completely missed the part when I tried to teach him that EDS is progressive and can only be slowed through bracing, surgery, or some form of treatment. I asked what signs or symptoms will be "bad" enough for him to see me or if I should just come back every year, but he had no response except he didn't know. "You know what it's like to live with this, but I don't." Well, it was bad when I was in my early teens and it's even worse now, so if it's not "bad" enough, what is bad enough? He talked over me, wouldn't answer my questions, and seemed to have no concept about what it means to have back problems without a serious injury. He even went so far ask to ask if I'm seeing a therapist, as if I could somehow make my joints dislocate and grind bone against bone by being depressed! Somehow he also has the idea that having joints that easily dislocate means I'll have an easier time when aging... as if somehow having early onset osteoarthritis and extensive damage from dislocations is good for the body. Eventually he just up and left the room, so I walked out, shaking my head. I couldn't believe how unprofessional he was! He's not even the doctor I'm supposed to be seeing - she's not even stepping foot in the room! As I was putting my walker into the car, I saw both of them and 2 other people were in an office talking (the side of the building is all windows so I could see in the room). Oh how I'd love to have known why he had to rush out of the room to talk to his coworkers, instead of seeing another patient.
Oh and I dealt with all of this (without losing my temper) after only 3 1/2 hours of sleep and a half hour drive to get there. I got home and just wanted to scream. But I looked up the orthopedic office at the U of MN and called, yet again. Instead of saying what I needed, I said I didn't know if she could do anything to help but I just had a really bad experience with an unprofessional doctor and I want to see someone else. I ended up talking to the nurse for a spine specialist. She took pity on me. I'm going to see him on the 7th about my neck, back, and SI joint to see if there's anything he can do. He prefers to treat without surgery, sticking with injections and pain killers, so we'll see if he's at all helpful considering I'm immune to most painkillers and sensitive to steroids. I'm assuming he'll just recommend braces. Hopefully he'll at least take me serious. The nurse said she was also going to ask some of her coworkers for ideas about who to see for my other joints (like wrists, knees, ankles, elbows, etc). I told her I don't care if I have multiple doctors for different areas, I just need doctors who are more willing to help, not just tell me to do PT and take painkillers. Since I have bone on bone grinding and signs of cartlidge degeneration (I can fold my nose in half to the side and my ears fold back on themselves until blood flow is cut off), no amount of PT or steroids can fix that.
It's just so frustrating. I'm so exhausted. Thanks to the wonderful help from 2 friends I was finally able to give my LTD lawyer a list of symptoms for all my conditions. That's an extremely long list with lots of overlap. Even taking out the symptoms that I do not have and do not expect to have in the future (things like stunted growth and learning disabilities, for instance, are definitely not symptoms I have or could have), that is a ridiculous list to attempt to live with! Just reading it made me wonder how I'm still alive.
Gotta try to get some sleep tonight (hahaha yeah probably won't happen). Tomorrow I'm meeting with a new therapist who specializes in EMDR (Eye Movement Desensitisation & Reprocessing). It's usually used to treat PTSD and to reshape the disturbed and damaging core beliefs that were taught to children who were raised in dysfunctional environments (such as being told you're worthless and don't deserve to live). First appointment is to try to figure out a plan, like deciding some of the most prominent events to focus on and learning more about how the process works. I'm hoping this will be helpful. I have a LOT of memories and events that have destroyed parts of me, and I'm hoping to try to gain some of me back by reprocessing the events.
Also, my SSDI hearing is on Tuesday. I am terrified about what will happen and have no idea how I'll be able to physically and mentally make it through. Guess I'd better start getting some sleep and resting before it!