Hey there nathangolden, I’m really sorry to read about what you’re going through, it really saddens me to know people are being effectively harmed by lack of sufficient care, especially when the knowledge is available and the treatments exist - it’s almost like a form of emotional trauma in addition to the physical suffering. I wish you all the very best and would be very interested in hearing how you go in the future. I’m also on crutches at this stage, have a bunch more ‘freckles’ without any sun exposure in years that came up in the last 9 months, but because Australia is the sunny country I’m consistently informed it’s due to sun exposure (I’m not believed that I am not in direct sun - the reason I’m not in direct sun is because of former high dose immunosuppressants which make a person much more prone to risk of skin cancer due to sun exposure - the medics know this however they choose to insinuate I am lying about sun exposure instead as the mechanism to excuse addressing these spots). I wonder if you also have growths on your bones? I have lumps like little heads of cauliflower growing out of the sides of my iliac crests, which the haematologist said are nothing despite not examining them. I also have an enlargement on my left tibia that has come up over the last 8 months or so. I also have little red dots of blood in my skin all over my arms that constantly appear then heal, and reappear. I know that something is very active, but here the public medicine system gives me the clear impression that people are generally hypochondriacs in nature, and should be dismissed in face value unless they prove otherwise with such blatant serious illness that it simply can no longer be ignored - but as a physiology, that creates much higher risks of progression when dealing with inherently progressive diseases.
The other aspect is blanket stigmatisation..I’m tall, look younger than my years, and have the residual characteristics of once being fit, so I’m often told “you look fine, you look like there’s nothing wrong with you” which to my ears is the most deflating/disheartening thing any person with medical education can say, because it makes me see how much of a failure the entire system is in that moment, especially when it leads to no further investigation - based solely on this ‘glance’ assumption despite objective findings demonstrating otherwise.
I wish you all the very best, and please do update how you go in august 🙂