Sometimes nothing helps, today my Mom is off and even offered to just drive upstate for the day. It’s something I’ve wanted to do for quite a while I’m just in no mood for that today unfortunately. I don’t know how many days it has even been that I felt this bad I know it has been a few, I even missed my first Vasculitis Patient Advisory Council meeting and a WEGO Health Insight Group due to all of this landing me in the ER for a while as usual. And then I wake up today to find out even though I failed more effective methods we’re going to try a weak form of chemotherapy just to keep the nodules from overtaking my lungs, that wasn’t pleasant news at all.
Having to go through another round of chemotherapy really is going to be terrible. I’m already weaker than I was last time I’d been getting chemotherapy and now we’re adding more of it to the mix so I’m sure the next few months will be pure misery. In fact with how swollen and in pain I’, in without all the side effects of chemotherapy I’d say I’ll probably only be able to write maybe 2-3 days a week…which is yet another set back that I don’t want. Writing articles slower means my books sits in the wings instead of taking main stage for another year or so. I just hate not achieving anything and that’s what is happening right now. I feel like all I’ve worked so hard for is slipping through my loose grip on what little I have left in life.
I think I’m going to schedule another emergency appointment over the phone perhaps with Dawn my psychiatrist as I know this will sink me even deeper into depression. I still can’t do much of anything physical nor have we contacted insurance about an aquatic therapy solution. So until that day comes where I can swim for therapy I am fairly sure I’ll keep telling my physical therapist to cancel my appointments. Sometimes there’s pain you cannot fight through and everyone should know their limit, I know mine and I hit it a long time ago. Unfortunately though my only choice is to keep on going or die an early death and I really wish to do neither. There is no middle ground though so I just need to keep on surviving every day until I can have some quality of life back again.
Most of the people I talk to just don’t get it they seem to think we are equals in terms of pain even if they only have CSS or only if they have daily chronic migraines. People forget to put together the picture and realize I’m probably one of a handful of people on earth with my vasculitis in the first place, now to have the worlds most painful illness in cluster headache, plus the pain I suffer with my chronic daily migraine and neuropathy just sucks. I can relate to chronic illness but I doubt there is anyone who could relate on a rarity level, I mean think about the support groups for Churg Strauss they barely exist and the largest group of us I’ve found is about 400 people and this is on Facebook where even rare cancer support groups have several thousand members. There are maybe a couple thousand people on Earth with my condition possibly less. I just don’t see why people think they can relate to that I mean at least with most other diseases you know what to expect, with CSS every patient is different and every case goes differently. Some aren’t diagnosed until after death unfortunately and the people who are alive and receive a diagnosis usually go terminal and hit stage 3 before much of anything is done. How often is it you are denied a diagnosis or treatment of such a rare thing when the doctors tell you essentially to wait for organ failure or other fatal symptoms to show up before they are willing to treat you…why? All for fear of being wrong or being sued, doctors today care more about going to court than they do about the actual patient that’s why they’re willing to pay such insane costs for medical malpractice insurance.
Anyway sorry for my rants lately if you enjoy them then great, but I sure don’t enjoy writing these pieces I do it out of necessity to stay sane. I wouldn’t know what to do if I didn’t already write for a hobby I’d have to do something though because sitting around all day every day because I just don’t have the energy to pick myself up and go anywhere or shower myself is frustrating. Most of you have no idea how much of a privilege it’s to bathe yourself or feed yourself or hell even go to the bathroom without someone having to check for blood in your stool and urine, but also to be there making sure you don’t pass out from blood loss and hit your head on the tile again. That’s my life people, yes I work for several NPO’s and Axon Optics but everyone understands that sometimes my disease stops me from functioning and they have to pull back and realize hey this dude is dying lets cut him some slack and they really have. I am thankful to the Vasculitis Foundation, the US Pain Foundation. the Migraine Research Foundation, Axon Optics, and to my family for supporting me starting a business even at my worst. Right now my abdomen is throbbing with a dull pressure type of pain, my left chest has a stabbing and throbbing pain pervading it, both my arms and legs are simply shot, my fingers are swollen as sausages from the little I’ve typed, I didn’t get out of bed until noon even though I was awake since…well I never went to sleep due to pain. Anyway that’s how I’m feeling and a little bit of why I am so damn irritated so if you see an article that seems aggressive or mean just talk to me politely and I’ll remove it or modify it if you can justify that, part of Churg Strauss vasculitis is mood swings and that’s no lie. My mother and fiance have certainly seen it now you all have too in my writing, but then again who wouldn’t bitch a little bit about even more chemotherapy…nobody likes that poison.