Posted by Todd Owen (152.163.207.181) on December 23, 1999 at 22:57:59:
Just wanted to send off another e-mail here before the holidays hit. The beast has hit me hard here tonight--just took a blast of Stadol up each nostril to get it under control. The oxygen seems to work for the few minutes I have it on, but once I take the nasal cannula off, the effects soon wear off. I don't like having the thing on my face for more than 10-15 minutes, gets really annoying for me. Imitrex will work, but wears off when the next cluster attack hits. So I'd be injecting myself four to six times a day if I used it for every hit I got. God knows I just spent $300 at the f---ing pharmacy today for a bunch of meds to try and keep these things under control, which I have to wait for insurance to reimburse me for.
The best joke of all was listening to the pharmacist ask about the headaches. She looked at me today, kind of incredulous, asking me "Is it like a headache 24 hours a day, seven days a week?"
"Well, yeah, pretty much a chronic low grade pain with four to six times a day where it spikes really good."
"How can you work or function through that?"
"I do what I can."
"You ought to get on disability or something, so you do not have to work, especially with as hard as your job is. What do you do, engineering or something?"
"Yes, I'm an electronics engineer. I make my way through it as best as possible."
"You ought to get disability, so you don't have to work with these things."
"I...would...rather...be...dead."
I am sure you understand the only reply I felt possible on this one--I have a wife, two children, a mortgage, a car payment, the standard American dream. I also have an EXTREMELY well paying enjoyable job with a number of great benefits. I get a great feeling from going to work and accomplishing the little things that bring everything together to help my company further its business and in turn further the padding in my wallet. I do feel that my company recognizes my work--I have seen it in raises and bonuses on a very regular basis. They have also been extremely understanding about my headaches--one of the founders had migraines on a regular basis and has been great friends with the VP of Engineering and the CEO. So they look at me and my work and give me the time I need when the beast rears its ugly head. I recognize this, and will fight the beast and do everything I can to still maintain some semblance of being able to work. This company has given me a lot, and I am willing to do much for them in return.
The chronic pain is getting depressing, and I am having a hard time over the last few weeks. I can understand how many CH sufferers can eventually get seriously depressed and suicidal. I do not feel I am there yet, but know that destroying my ability to feel like a productive functioning member of society would truly be depressing and destroy my feelings of self-worth. Disability because of the beast? KILL ME FIRST! Being able to function and provide for my family because of my ability and effort is what really makes me feel like I have a chance of winning against the beast. Just the thought of it all makes me want to cry. Sorry for the downer of a message, but I am hitting one of those low points right now in this cycle where I need a shoulder to cry on. It really helps having a fellow CH sufferer to do so with--you understand where it is I am coming from. I just want to cry some days from the pain, the frustration at not being able to win against this stupid thing when I feel I have fought the world and won before!!! I can win against anything, can't I? I am hoping Xmas with my kids will really help give me added reason to fight on--they are wonderful kids. A hug and a kiss from them when I walk in the door from work really help a lot. I hope you are having a pain-free holiday, and am sorry to send such a downer of a message, but I have few others to turn to who understand how I feel.