Sunday, January 8, 2012

Headache Diary 4 Months, 1 Day: Happy Anniversary to Me?

How time flies...when you're havin' fun? No, none of this has been fun, but I realized today is four months and one day since my one-sided non-ending headache began on September 7, 2011. I am FINALLY getting to go see the specialist in Morgantown tomorrow. I played cancellation tag with other patients (by calling nearly every day) until I got my initial visit changed from January 25th to tomorrow, January 9th. I have been assigned to the Director of the WVU Headache Research Clinic. Hopefully that is a good thing. He has a nearly dozen page document with my full history since onset, all the medicines that I have tried, and the successes and mostly failures of all treatments that we have tried thus far. I am also bringing a disk of my MRI and CT scans from earlier this fall for him to read, himself, onsite. I am trying not to get my hopes up, but I really need a diagnosis. I think my workplace needs a diagnosis, but I will get to that in a moment.

As mentioned in earlier posts, I took the month of December off at the advisement of my General Practitioner. During that time I did not get any better, but realized through the few social outings that I had made that my suspicions about fluorescent lighting were correct. Whenever I am in the presence of white or blue tones of fluorescent lighting, especially, my headache and whatever this nerve issue is that is accompanying it in the right side of my face exacerbate very quickly. The longer I am around them...the more ill I become. Remove myself from the fluorescent light source, and I return to my normal state of level 5 or 6 headache which I now live with on a daily basis from the time of waking to the time of drifting off to the land of nod.

This lighting issue made me physically ill at a dance performance back at Christmas that my daughter had at the local VA Nursing Home, and at my Grandmother-in-law's on Christmas night. Both times, removing myself out of doors and out of the fluorescent lighting even for a brief time returned my headache to its normal state of aching. This is not to say it made it go nothing thus far ever has made it go away, but it returned to the level I have grown accustomed to feigning that I am a functioning human that can put on a smile, socialize, and go about my routines whilst only giving people glimpses of the ever-present pain that is in my cranium unless they give me opportunity to verbally express it.

The blue and white fluorescent bulbs are everywhere in the High School where I teach, unless they have neglected to change an older pink or yellow hued tube in an overhead light. I was very anxious about this over New Year's weekend when I knew I would be returning to teach in a few days and did not want to make a brief entry and re-exit immediately due to the lighting being intolerable. So, I went out and bought two 72 inch torch lamps and two desk lamps prior to returning to my room. I also bought the spiral CFL bulbs that mimic incandescent light (I can handle that wavelength better) in 65 Watts for 3 of the lamps and one incandescent 25 watt bulb for the lamp that I was placing on my desk. The difference between the stark, overly lit hallway, and my serene room is now very noticeable. I can function in there, not headache free of course, but without the additional stress of the lights making my headache worse. The students have not complained to me at all. In fact, I have gotten many compliments on how nice it is compared to other rooms. Additionally, not a single student put their head down to sleep all week. I would like to claim that that is because I am amazingly interesting, but when I ran the fluorescents there were kids that put there heads down from time to time. This is all sounding too positive though. Real life never works so smoothly, and I mentioned that I really fear that I am going need a diagnosis for my employer's sake and understanding.

I could just pocket the cost of the lighting as a comfort expense for me, but I sort of feel that my school should pay for it. I have been told they will pay for it...on its face. Then I talked to our financial secretary yesterday, apparently they do not like the retailer that I used to get the lamps and therefore, because I did it without asking, I might not get reimbursed. Strike one on my serene lighting adventure. Where is strike two? My Principal mentions to me that he went past me room the other day, and without stepping in, it looks too dim in there as compared to the hallways. He is afraid a parent is going to complain that I am running the lighting too dim in relation to the rest of the school. To resolve this, since white and blue bulbs seem to be my Kryptonite, he has ordered the janitor to get other colors (green, yellow, pink, etc) in more expensive varieties if he can get clearance from downtown and do half my room in all one color and half in the other...and experiment to see if I can tolerate running at least half my fluorescent lights. And...I can already feel this adventure going south. Someone mentioned that I may have to resort to using the ADA to muscle my using of lamps in my classroom. I really like my administrators, but this disorder I have (which will hopefully have a name tomorrow) is invisible and I can see that there are people that look at me and see a decently healthy, smart, well-dressed guy and just think I am a hypochondriac suddenly, or that I am trying to pull something over on everyone.

This thing is awful. I have already missed so much this fall that I cannot get back. Just yesterday, my daughter had her first YMCA league basketball game. I walk in, the gym is too small for the number of people. The sound is too loud for the heightened hearing that I have been having and my head instantly starts to pressurize. The lights are giant, odd, orange-ish vapor lights of some kind that most people wouldn't notice are buzzing audibly. Everyone was talking. It was seemingly 105 degrees in there. So, stand in the hall the can watch from there. "Why does my head feel strange here? Look that the lights in the hall Fred." They were all the same cheap blue and white tube bulbs that they've been putting in at school. The blues do not even fire evenly. I am not sure how most people do not notice that. I cannot believe we closed down all the incandescent lighting factories. We are only making and will soon only be selling LED and Fluorecent lighting in the USA. People could take five minutes and find thousands of blogs or bulletin board entries on people with fluorescent lighting sensitivities. I felt so guilty for telling my wife that I had to go out to the car. Remove myself from the stimulation. After about 30 minutes I came back in and watched the last few minutes of her game. I do not know if my daughter knew I went out, but eventually I know she will notice. I fear she will think I am feeble and weak, or worse that I do not care enough to come to her things and watch my little Pixie in action. I am so proud of her. Why would I fake this? I need a diagnosis. I hate this disorder.

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