So the big week that I had planned has been interesting so far. I have been researching what the hell else this "monster" could be besides or in cohorts with Behcet's. One of the things that has been coming back to me over and over again is something called systemic amyloidosis. I forwarded my thoughts on amyloidosis over to my primary doctor with the full expectation that he would immediately find a hole in the diagnosis and move on. This is what I hoped for. In my heart though, I knew that I had all of the symptoms and had a strange alignment of sorts with an unthinkable prognosis. The examination today is leading to a biopsy meaning that we may be onto something or chasing a red herring again. But this one looks too familiar this time around.
So here is were we meet Mr. Grim. I call him Mr. Grim because that is the name that was given to my prognosis. I have not been definitively diagnosed with amyloidosis yet, but even without that, Mr. Grim showed up today and was mentioned. If I have amyloidosis it would explain why I have never had any inflammation markers with Behcet's. There is an extremely rare form of Behcet's that the NIH mentioned that I still could have. It matches as well but it is untreatable. If I have systemic amyloidosis then that would explain why none of the medications worked and why they only aggravated the disease. So if Mr. Grim is coming to visit then I have one hell of a fight ahead of me. And I say one hell of a fight because I am not going to sit and let this one eat away at my life either. I believe that there are too many bright physicians and treatments out there to give up so easily. Any diagnosis I get at this point, I realize will be either Mr. Grim or a close relative. Mr. Grim can present to me something as devastating as 1 to 3 years to live or I can turn around on Mr. Grim and introduce him with My Grim determination.
Grim can be used both ways. When we hear grim we think of something bad. But if used in ways like grim determination or grim resolve then you can see grim as something more resilient and unyielding, instead of gloomy and somber. But still, a sparky adjective doesn't change facts and doesn't do things for you. You have to be an advocate for yourself. You have to push the doctors for a definitive diagnosis and prognosis. If you don't, you will watch as your body slowly shrinks and withers and then you will lose the things essential to living. In other words, don't sit and watch, watch and wait when doctors are not doing something to improve your condition. Granted, you must have patience while enduring a treatment but when something isn't working given an appropriate amount of time then you must move on and move forward. I tell you this from years of experience from good and bad doctors. Even good doctors need to be prompted unless you are your doctor's only patient. Then you would just fire them if they weren't going at it full bore.
So I leave with a parting shot of a car strapped with mattresses. How many times have we seen this? Someone spends hundreds of dollars on nice mattresses but won't spend $70 to have them shipped. This is not only an exercise in stupidity but also dangerous. If the mattress falls off behind you it becomes a ramp for the cars to come. This happened to my sister once and she was fortunate to survive. The point is this, spend the time, the effort and even the money to do things right and protect yourself and those around you. Think truthfully about not only your health and your future, but the friends and others that you meet along the way. You never know when you helping someone become an advocate for themselves will be the moment that saves their life. I remember the first time when I learned I had a voice. It was the greatest thing in the world to know that I could speak out against injustice, against wrongdoing, and have an impact on how I or someone else was being treated. We should all share this voice and start making things better. But that is another blog, another day. I have to go try and put Mr. Grim to bed.