And it’s one more conversation with a doctor that proves to be just as painful mentally as this physical condition that I’m dealing with. As you are aware from my previous post, my doctor was supposed to call me on Monday to give her treatment plan and advice after meeting with the specialist team at Peijas Hospital. She didn’t end up calling on Monday for whatever reason. However, she rang me today, and after a 35-minute conversation, I think we may have gotten somewhere.
She told me that she discussed my case in her meeting. The first question she received after presenting my case from her the board was, “Why isn’t she working?”. At first, this made me feel extremely furious. But when I really thought about it, this one question gave me a lot of insight as to why my case cannot proceed any further in the public health system. Granted I ended up in this office due to narrowing down my most acute problem area to my left shoulder, I realize now that the doctors truly fail to recognize and understand that based on the lack of treatment for my shoulder, my entire body has suffered. Break one part of the system, and the entire system will collapse. It’s not rocket science. The second question that stood out to me was when she asked me for the third time, “How did this begin again?”.
I’ve explained this over and over again. Sometimes in extreme detail. Sometimes the abridged version. But hey at least she is asking because she wants to help, right? This problem began slowly, and then all of a sudden. I exercised too much, I got too fit too quick, because my stress level was so maxed that all I did was exercise. At this same time, I got orthodontic treatment, and that was a catalyst. I don’t know what happened. No one knows what happened. I don’t think there will ever be an answer. The only explanation I have ever gotten is Ehlers-Danlos Syndrome. That’s it.
But as a logical person who has spent countless hours researching my symptoms and pain, I know this doesn’t’ add up. I’m well aware that I possess signs of hypermobility that affect the way in which I move. I’m also aware that something triggered this because where was this the rest of my life? I'm not saying I don't suffer from EDS, but what I am saying is that I have an acute shoulder problem that needs to be addressed after many years of neglect. After years and years of trying to pinpoint the problems origin, my shoulder (hopefully) is the last stop or at least the first stop on a true road to recovery. Well, if one does exist.
We went back and forth for a while. I could see that she was trying to see me as a human, and not some lazy foreigner trying to collect a check from the Finnish government or get out of work. Because I really feel that’s how I am perceived at times. Not by everyone, but by many, especially by the same institutions and healthcare advocates who are supposed to help people like me. I have had 1091098 rehabilitation plans, but I am not rehabilitated. Not because I don’t want to get better, but because the baseline problem has not been figured out. Without changing the underlying issue, we cannot change the results. This is such a painfully irritating and frustrating situation. But logically, this is the truth.
I told the doctor that I picked up the MRI photos and I plan to see Harri Heliö (private shoulder surgeon) in 10 days. She said if I were you, that is what I would do. I don’t think she’s supposed to suggest that, but this is what I mean. Being seen as a person, and not this piece of paper full of problems. She recommended this type of physio called psycho-physiotherapy, which is just her only other idea because she recognized that sending me to some person that gives me a paper with exercises is not going to help. We both know this isn’t the solution. The biggest outcome of this was that she wants to send me to the shoulder surgeon, back to the place where my doctor at Orton originally tried to send me, and here we are again. Round and round we go in the Finnish medical system.
The good news is that she will send the referral again back to the orthopedic surgeon, but the other stress is that they may not accept me. Although, last time they said they would take me if I were actually referred back.
Here we are again-sitting, waiting, wishing.
I’m not terribly disappointed with this, but It’s just frustrating as hell. This problem whatever it is has cost me so much. My ability to work, go to school, walk, take care of myself, etc.
It has cost me friendships, caused depression, put a ton of space and mistrust between me and almost everyone I know. It’s isolating. It’s so unfortunate that this has happened to me, and sometimes so difficult not to completely lose hope.
I wish my MRI showed I had a huge tear in my shoulder, or there was a paint by numbers sign of problems revealed in pictures, but there isn’t. I can’t help that, I can’t change that. I don’t know who is to blame? My own theory is that this injury has existed for years and my body just tried to protect itself, which leads to huge muscle imbalances and functional disabilities. But no one gives a fuck about functional disabilities. Just as the doctor told me today, when the pictures don’t’ show enough, even if there are serious problems, it’s hard to figure out the next steps.
At the very baseline, I deserve better than this. My life has worth, and I will continue looking until I find a solution.
Hopefully, the next time I write, I will have good news to share. Until then, thank you for reading.
Warm wishes,
Amie
