One of the most frustrating aspects of this disease is the fact that few people have ever heard of it and, consequently, do not understand the symptoms and how they affect those afflicted. No, its not an excuse, it is simply the way it is. There are times even now, as I go through treatment to manage it, that I feel fatigue. I do not mean I feel tired. I mean I feel fatigued, full body, fucked-up-beyond-all-recognition fatigue. Combine this with pain in almost every single joint, especially my knees, wrists, and feet and we have the ingredients for a real party.
I hate it because it affects how I react to everyone, especially my kids. Kids can be, we all know, rather challenging at times. This goes double for those in the 4 to 6-year old range, which is what we have. My patience level is literally in the negative numbers when I am having symptoms. If my wife even looks at me cross-eyed, it could result in something so viciously evil coming out of my mouth as to crucify a normal person where they stand. I do not tolerate fools on a good day, but combine that with an attack (which is really only the best way to describe it), and I just might send your forsaken soul to the lowest depths of Hell with a mere look.
Believe me...I do not enjoy this. It just happens. And attacks are different for everyone with hemochro (which I am calling it as it sounds cooler than it actually is...). This week was rough for me. Although I did have some enjoyment this past Saturday evening and, of course, on Super Bowl Sunday, Monday was like a train slamming into me. I can't do much else but try to apologize, but kids don't get it. They just know you were an asshole. Hopefully, my wife knows this is not really me; its the hemochro talking. Bloodletting treatments have been helping, but I am also frustrated because it seems like I am reaching some sort of plateau with little progress being made. I have had to accept that until my ferritin levels are down to the goal of 50ng/mL, I simply cannot have any beef. None. Nada. This has been a hard pill to swallow as I have been a lifelong, committed carnivore, mocking those who eschew all things red meat. Ah, how The Universe and The Fates enjoy their little ironies, don't they?
When the RN handling today's bloodletting asked me if I wanted to let my blood continue flowing or if I thought I had given enough, I said, "No, let's fill that bag to bursting.". Each week is like a test for me, to see how much I can bring my levels down. The last couple of weeks have not shown much progress. It is literally like one step forward/two steps back. And it is incredibly frustrating.
I know, I am whining and there are so many others with so much more going on. I have a dear friend dealing with having had at least one, perhaps multiple, small strokes...and she is slightly younger than myself. I have seen friends from school who post about rheumatoid arthritis, fibromyalgia, and a multitude of other ailments and injuries. I am not asking for anyone's pity or to try and say I am any more important than they. I am reminded of how lucky I am and how I should not complain each and every week when I sit next to and talk to those undergoing various levels of chemotherapy. I know cancer survivors and have known those who have fought and lost. I do not consider myself equal to them in what I am going through.
But sometimes, one has to vent. So thanks for listening.
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