I haven’t written in a while, I’ve struggled to be able to put this post into words. My fear is that people will misinterpret my words and think I’m giving up, which couldn’t be further from the truth. I’ve decided to take back some control of my life. I’m tired of hospitals and doctors and needles and waiting for test results.
Don’t get me wrong, this is a good change, a good decision. Just to summarise the last few months:
In a desperate attempt for answers, I was referred to a new neurologist for a second opinion. He was awful . He stared me straight in the eyes and told me how lucky I was to be seen by my regular neurologist and shamed me for looking for an opinion elsewhere. “He’s the best we’ve got you know?” He hadn’t even read my notes, or scans or any details but was happy to tell me that he trusted my regular neuro and wouldn’t offer an opinion different to his.
Then he charged me $350!
In other news, the weird rashes have been coming and going. The rashes that have had the attention of all my specialists. Sometimes so bad that my entire legs would be bruised. I was seeing a dermatologist who took biopsies from my bum. (ouch!). The results, of course, were inconclusive. Complicated, but inconclusive. The biopsies were negative for vasculitis etc but when looked at under a microscope the samples resembled vasculitis. The report simply said ?vasculitis but no evidence on staining.
I was taken to an expert panel. It was intense and a little overwhelming. There were more than 30 doctors. My story was presented to them. All my info, neuro, derm, immunology, urology, hepatology, on display. In small groups they came to see me, asked me hundreds of questions, took photos of my rash and touched it. It took hours. By the end I was so exhausted and sick of talking about myself! I left before I should have. I couldn’t stay any longer. I went and had a beer and played volleyball!
The next day, I had more and more tests done. This time for bleeding disorders, connective tissue disorders, collagen disorders. Not surprisingly, my specialist rang to say they are all inconclusive. He said that at the panel discussion, the doctors all agreed there was something strange going on. They are all interested to know the answer, if there ever is one. Like my neurological disorder, my skin lesion diagnosis remains elusive. And then the words “I just don’t think there’s anything else I can help you with. Come see me if it gets worse.”
Apart from looking like I’ve been hit by a truck, the skin lesions don’t really bother me. They are not painful. Hearing those words though, hearing another specialist give up, hit me pretty hard. It’s almost exactly what my neuro says; that they’ll get more clues when I get worse. It just doesn’t sit right with me!
So back to taking back control…
Its been almost 3 years. I’ve never had treatment for my condition, whatever that is. My recovery has been a mixture of time and my hard work. None of the many many procedures (some painful, some degrading) have lead us any closer to an answer or any closer to a treatment that will improve my well being long term. The only intervention that I can see that has helped has been strength and coordination training; physio. Realistically, the emotional ups and downs from continuous testing and hoping is doing more harm than good.
That’s where the taking control plan fits in. I’m saying no more. If/ when I get worse, I’ll reassess. In the mean time, this is my life, and I’m not going to waste it away in medical appointments or dirty hospitals.
I’m really proud of myself for how I’ve handled all this so far. I’m proud that I never gave up. I’m proud that I hand wrote the Christmas cards even when they were eligible coz my hand didn’t work. I’m proud that I’ve continued to work and find work that I’m able to do. I proud that having a pocket full of catheters and lube didn’t stop me working on a mining camp surrounded by hundreds of men. I’m proud that I did the Gibb River Challenge again, even if it was with only 1 and a half legs and a pocket stuffed with catheters. I’m proud that I persisted at volleyball, even when it broke my heart how frustrating it was learning to move my arm again and I’m proud that I’ve come to this decision and I’m going to take back control of my life again. Our social culture teaches us to be modest, but I’m teaching myself to be proud. It’s ok to pat yourself on the back every now and then! I’ve done so well till now and done what I’ve been asked. Now it’s about me!