Reality

I'm pretty sure everyone reaches a point where they feel like they have no choice but to be upfront, honest and real with themselves, and to everyone else. Whatever it is, and whoever you are, there must have been a time in life when you've had to stop the "brave face" and just acknowledge and face a situation.

For me, I think that time is now, or is about to be upon me. I haven't written a personal update post for quite a while, and I think this post will be one of those.

As far as my osteomyelitis goes, the surgery I had in June seems to have worked - or at least stopped any infection from spreading. I still have pain, and it still burns, but it radiates less and the joint is more stable. However, it's gone wrong in a way that I never thought nor expected it would.

Because of the debridement, there was less bone remaining on the right side of the bone than the left side. And because of infection, my wires had to be removed earlier than the time that bone fusion took place (and they were removed sans prior X-ray). Post-wire-removal, the distal fragment has moved, towards the right side, and subsequently fused, leaving the joint at a 30* angle. Now, it needs to be fused again because of the poor result. I won't go much into my surgeon and what exactly happened, but I'm left feeling disappointed and deflated at how things have gone. How many more "last time" surgeries will I have? How many more people will I have to seek out before finding one who can really do this?

I'm hoping that my old surgeons can rescue this, now that the osteomyelitis is at bay. They were unwilling to do the surgery as it wasn't their super-specialty to deal with osteomyelitis. Now, I need a "simple" fusion. It just sucks so much to feel like this. I've dropped my coping mechanisms and am a combination of upset, frustrated and disappointed that I'm in this situation. I'm facing the situation with a real mindset and I can't deny that I feel really rubbish about what's going on, because surgery for me is a big deal because of my bleeding. Not to mention that I'm losing weight again and my GI tract has been giving me real trouble lately.

I hate feeling so down about things, because I'm not that kind of person. I'm sure this is a phase I'll get through, but for now, these are my raw feelings. It's just one of those "why me?" moments, when I feel just a bit more negative than normal.

Long Road

We decided that I would revisit my rheumatologist now that I am "stable" from the point of view of my osteomyelitis. A week ago today, I had the appointment, which turned out to be a relatively successful experience as well as a confidence-booster.

I was pleased to see the consultant, nearly three years after I'd first seen him. We talked about medical school and other things in my life, and then moved on to how things had been with my osteomyelitis and AVM. He was shocked to hear of the way I had been treated, and how people had overlooked important factors when deciding on my treatment. In a way, it was liberating and I was so relieved to hear that I wasn't crazy and that my concerns about peoples' attitudes and actions were shared by someone so well-respected and renowned in the medical world.

We ran through things briefly, and then talked about the problems he thought I had with my autonomic nervous system. I've been experiencing symptoms with my digestive system for so long now that it felt strange for someone to want to help. Of course, it was welcomed help, but it still felt bizarre for someone to take me seriously. Provisionally, we think that I have some sort of motility disorder with my digestive tract due to an erroneous autonomic nervous system. Additionally, he found that I become tachycardic when I stand up. I'd always known that I become dizzy and light-headed when I go from lying or sitting to standing, but this has been apparent since I was very young and so I never thought there was anything wrong. 

As a result of the appointment, I have been referred to a neurogastroenterologist and a neurologist, as my rheumatologist is sure that they will be able to help me improve my quality of life. Though privately, the neurogastroenterologist has no appointments until September, as he is away until then. I am yet to hear from the neurologist's office, but am hopeful that I will be able to get an appointment before term starts again. 

I'm definitely satisfied with the outcome of this appointment. Although it's never nice to be told that there's something wrong, I've always known that things haven't been right and have come to accept that. What's great is that I shouldn't have to accept too much more pain and discomfort, because there's actually people out there who want to, and will help me.