Friday, April 29, 2011

Light Exchange

I needed to travel for work this week. I hadn't realized how long it had been since I have traveled until after I checked into the hotel room and notice that all of the lights in the room were compact fluorescent lights (CFLs)!

I didn't get into the room until real late that first night, but it quickly became apparent that it would not be good to be in an unknown client environment all day and then come back to a room full of CFLs. I made it through that first night by using the light from the television and turning on the bathroom light, which was around the corner, so I could see enough to get everything together I would need for the night and next morning.

So many things ran through my mind as to what I should do. Breakfast was right next to the concierge. I decided I would take a deep breath and go over there.

I am not really an overbearing person, but I have to do what I need to do for myself and to keep doing my job to the best of my abilities. I needed to be at the top of my game for this client visit. I was already very concerned about what their lighting environment was going to be like that I had to walk over to the front desk.

After I got there, I told them that I had a very unusual request. They smiled. I let them know that I am very sensitive to the CFL bulbs that are all over my room. I asked if there was any way they could change out one bulb to the old light bulb; the old incandescent bulb. They actually kept the smile on their faces and said it would be no problem! They said they would call maintenance to take care of my concern.

Shortly after I got back to my room, the maintenance man came in to change the bulb. He ended up changing all of the bulbs in the room except for one which he ended up unplugging because it had a different type of a fixture and a regular bulb couldn't just screw into it.

I ran into the maintenance supervisor several times during my trip and he always asked how my room was and how everything was going. It was really super! We had a nice talk this morning as I was leaving and I let him know that it made a world of difference to me and that I couldn't express how much it meant.

After driving about seven hours today, I have just checked into another hotel room in another state. Guess what they have? Compact fluorescent bulbs! I am only here one night so it's not as bad as the situation I was faced earlier with at the other hotel, but I figured what did I have to lose?

I called guest services. They were very apologetic about something that is not their fault, but due to a sensitivity that I have. They called maintenance who were at my room in no time. He needed to check to see if they had any old bulbs, but he really didn't think they did. I was totally surprised when he came back about fifteen minutes later with a bulb. He said he found it in one of the other rooms. Awesome, two for two!

I started to think that maybe I would be better off bringing my own light bulbs with me. Next month, I will be traveling again. However, this time I will be flying! Can you imagine the look on a TSA workers face if I brought a light bulb in my luggage after they x-rayed it? I'm sure I'd be pulled aside for trying to bring a light bulb onto a plane. Is it even legal?

If you were going to a hotel, what would you do? Would you bring your own light bulb for the hotel room?


Saturday, April 23, 2011

Literally Move Rooms

My division will be moving our offices, but the date keeps getting pushed off which hopefully gives us time to get things right. Last month we sat down to try to decide where I would sit after the move. We settled on a place which would have the least amount of light impact on me. I was as excited as I could be to basically be facing a corner - where a wall and an office wall next to me were going to meet.

Recently, I was in another meeting with one of the people who helped pick out where I would be sitting. Seconds before this meeting started, she leaned over to me to let me know that she had additional conversations with the building people about my lighting sensitivity. As soon as the meeting was over, I stopped by her office to get more details.

During our talk, she pulled out an updated floor chart. I couldn't believe when I saw that the office I was supposed to be sitting next to was gone because it meant I would be facing a whole bank of lights! She casually said that they ended up not needing one office so they took that office out and shifted everything else on that row down. This put my cube at the end of my aisle which would also have me facing the end of many rows of cubes and more importantly, many more lights.

There was a conference room at the other end of the row of cubes where I am supposed to sit. Currently, there is nothing built in the area we are moving into. There aren't even any lights up so I couldn't get any answers as to how the lights are configured overhead. I asked if it would be possible to move the conference room from the other end of our row to where the office used to be on the plan, which would give me back the two walls I could face, and then shift all of the cubes back down to where they were originally on the plan. She didn't see anything wrong with that suggestion, but said she would have to run it past the contractors.

She said she would try to keep me in the loop as to what is happening because she never would have thought about the lights after the office was taken out. I let her know I really appreciated that and it was also hard for me to tell anything specific by looking at a piece of paper. Sometimes it's hard to tell the exact affect until I can scope out the actual area. That's when she said that maybe we could take some visits over there during the different stages of the construction when they might still be able to alter some of the construction easily. She said these slight modifications could also include the placement of some of the lights by my desk.

Next, she mentioned that when she was walking around our current building with the contractor, that she pointed out how my current office is darker than the other offices, but she wasn't exactly sure what was done to the lights to make it that way. When they walked by my office, they only glanced through my window, but never got a closer look. This was when I went into more detail around the light sleeve I currently have around the fluorescent bulbs in my office. They have been a tremendous help!

Sometimes I wonder where I get the nerve to ask my employer to literally move rooms until I think back to the early days of my light struggles. I could not survive at work without any lighting alterations and it was real tough getting any accommodation back then.

We had this maintenance supervisor, who would actually measure the amount of light in my area, and tell me it was below the light regulations; that someone might trip and fall because they can't see. Believe me, it was not that dark; I still struggled with it being too bright. To top it off, the next day I would come into having no light modifications - the good old days! :^(

This is the reason I fight so hard now to try to get the lights right for our move. I know it's best to get it right from the beginning and that I can't go back to those 'olden days'. I can't survive 'normal' lighting and my hope is that my fight will not only make it better for me, but anyone who comes behind me who needs this or a similar type of an accommodation.


Saturday, April 16, 2011

Church Hopping

Is church one of your triggers? How do you handle it if church has some of your Migraine triggers? There are many reasons I need to go to church and don't want to give up on it. Besides, where else is a better place to go to pray for my Migraine family?

My church changed over to those demonic Compact Fluorescent Light (CFL) bulbs a while back and I have been trying to decide what to do about it since. On the 'bright side', at least my church doesn't have the funny smells that churches can have all of the time. This usually only happens around the big holidays when they spread the extra scents around.

There are a total of twelve big light fixtures in my church with SIXTEEN painful CFL bulbs in each fixture! These fixtures line both sides of the church going from the front alter all the way to the back. I have been trying to find the best way to handle this situation.

The first way I tried to manage church was by finding the best place to sit in my church. Normally when I enter any room, the first thing I do is to take a quick scan of the room to look for shadows in the room and check to see where the lights are in the room. With so many lights lining this church, there weren't any shadows so what I needed to try to do is to find the best balance of the lights for me.

I started by trying to find that correct right/left balance of lighting. Before doing this experiment, I thought I could handle more light on my right side than on my left, but that I would have to be careful because if I got a light induced Migraine on my right side, it would be harder to treat than a left sided Migraine. After my experimenting, I still believe it is easier for me to treat a Migraine on my left side than on my right, but I am more confused about the side to side light balancing.

In the beginning of this testing, I sat all the way on the left side so the lights were on my right. After about ten to fifteen minutes, I knew I wouldn't have been able to last the mass if I didn't do something quickly. Luckily, there wasn't anyone sitting in my pew and I was able to slide down the pew which gave me a different lighting on my left and right sides. I spent a few weeks trying to find that right place to sit across the pews.

Next, I needed to try to find that front and back lighting balance. With so many lights in the fixture, it was difficult not to have a direct visual line to the devilish bulbs. After locating the best place to sit, which is not ideal, I had to start coming up with other alternatives.

It was a hard choice to start looking at other churches because this was the church we have gone to since we moved to this town over a decade ago. It is the church my boys finished getting the sacraments they should have up to this point in their lives. I decided to try out some of the other churches in the area.

The grass isn't always greener on the other side. I actually thought I was in heaven when I checked out one church. In the preliminary scan, there were many shadows so I went to the darkest area. I quickly found out that these shadows were very deceiving and didn't provide any protection from the lighting. Not only that, but just before mass started, they turned on more lights! Nope, this would be the last time I went to this church.

Another church I went to was like grand central station. People were coming into the mass all the way up until communion! Not to mention there was no getting away from these lights as the church was extremely narrow. The other issue was that the acoustics were at a level that would break eardrums. Not good for sensitive Migraineurs.

There is one possibility that I did find. It is actually the sister church to my church where it is less than a mile away and we share the same priests while we try to keep our own identities. Sometimes this smaller church will be asked to go to functions at my current church especially when it is a bigger event that for some reason, they can't spread it between the two churches.

This smaller church has small light fixtures where I can't even see the bulbs when I try. I still have to balance the lighting when I choose where I need to sit, but that's not as difficult as my current bright church. One test week, I also found out that I need to be careful of sunny days because of the way the sun shines through the stain glass windows. I altered where I sat after that.

I have been going back and forth between these two churches lately and still have about two more churches, that are not too far away, I can try out. My real test will be next weekend; Easter Sunday. I will broach the subject of going to this different church with my boys and see what their reaction is like. They don't always like change and there was always that little competitiveness between churches growing up, but I know that they would go along with whatever I thought would be best for me. They are really terrific boys; I mean young men.

I think church hopping has been a good experiment along with trying to find the best place to sit given where the lighting is placed and the type of bulbs that are used. It's tough adjusting your spiritual world when everything else seems to be turned upside down too.


Wednesday, April 13, 2011

Migraines and Frustrations

I’m a few days late and a dollar short to enter the April Headache and Migraine Disease Blog Carnival hosted by Diana Lee on Somebody Heal Me. I had actually started this with plenty of time to finish before the deadline and definitely before the extended deadline, but you know how it is when things happen and you can’t make that goal you set. Yes, that is frustrating too...

I realized that I express a lot of frustrations around Migraine disease. There are so many things that go on where I want to throw my hands up in the air and just give up, but I know that wouldn’t be good for anyone; especially me.

I can’t just give up on making sure I have the right doctor, trying to keep up with my disease, finding the right medication, trying to get some thickheaded loved one to understand why I can’t make every special event like I used to and the list goes on and on. I’m going to talk about my latest frustration around Migraines.

Like so many others, I’ve been trying to find the right Migraine preventatives for years now. Although there are hundreds of medications that are used and an astronomical number of combinations of these medications we can take, none of these preventatives have been developed specifically for Migraines. These had been developed for other diseases where it was discovered that they helped with some peoples Migraines.

After doing some reading around thyroid diseases, I find the Migraine medication issue even more frustrating. Why? Because it seems like for the thyroid, it’s pretty much take this medication where it mostly works for everyone and there are hardly any side effects. Wwwhat? A pill? No side effects? I may be understating that a little since I haven’t gone to my doctor’s appointment yet, but that’s what it seems like from what I’ve read and heard from people I have talked with a thyroid condition.

If that is true, that is nothing compared to going to the doctor, getting a new prescription and taking the prescription for two to three months to see if it might help you. We also have the bonus of knowing that some of the side effects may even go away after a little while. If this medication works even a little bit, we have a few choices we can make. Maybe we can increase the dosage a little more or try another medication in the same class or try another medication along with that prescription and repeat the waiting game again.

Hmmm, do you think we need more Migraine research so we can get a better medication regimen that would help us so we wouldn’t be like our own little science experiments with every new medication we need to try?


Saturday, April 2, 2011

A New Path

As I started to get a big smile, I had to stop myself. My doctor's office called me a few days after I took a blood test. There is only one reason they would be calling. As I was bringing the phone to my ear, I was thinking: Did they find something that would help me with my Migraines? Or, did they find something that would add in complications to managing my Migraines? You always say you want to find something, but do you really want to find anything?

I have had many symptoms that I would blame on many different things including age, medications, Migraines and just being a woman. Many of my symptoms fit these categories perfectly and for a long time so I really was not expecting anything but a normal blood result back - just like I always get back. Well, my TSH levels were a little high.

What this result really meant to me right now is that I would have to do a lot of heads down research on something I know little about in a very condensed period of time so I could start to make some decisions on what I need to do to help myself. Just a minute while I get a couple of sweaters and put on some lotion. Much better, thanks for waiting. One of my biggest problems is that I have been totally exhausted and have been for a while. I can't seem to get enough sleep and then even wake up feeling tired. When I am on-line, I have been known to fall asleep right in the middle of posting entries. I'm embarrassed to tell you how little energy I have to do anything especially given the amount of sleep I have been getting and that's not even mentioning how hard it is to remember the simplest things that should be a no brainer.

Do you know what? The symptoms I just complained about plus a few others that I had noticed and just pushed off toward other logical things are also symptoms of an issue with the thyroid. Wow! I really don't want to read anything into this one test. I know I will have other blood tests that I need to take, but I know my body. Many of these symptoms are not me, but I have been complaining about some of them for a while. I don't want to self diagnose, but I think we might be onto something here. Honestly, I really don't want anything to be wrong with my thyroid, but I would love to get rid of the symptoms I have and been blaming on other things especially if it would help with my Migraines; I would consider that a win-win!

Having a thyroid condition is not that unusual for people with Migraine disease. They are known to be comorbid conditions which is where two diseases are known to occur at the same time but are independent of each other; one does not cause the other. Teri Robert wrote an article on Migraine, Headache and Thyroid. In this article, Teri explains how taking into account other conditions which may be affecting us, can help improve our headache and Migraine management. In some cases, the treatment of even borderline hypothyroidism has had a dramatic affect on the response of our Migraines. In my preliminary research on the thyroid, I fit almost every symptom that I have seen listed for thyroid.

I also started my doctor searching which is one of the things I dread the most because finding the right doctor is so important. I fear a repeat of some of the neurologist experiences I've gone through in the past. I don't want to waste my time or money with the likes of any doctor that would be like some of my old neurologists, but know there is only so much I can do before I had to take the plunge to choose one.

I did the best I could and picked an endocrinologist I am ok with for a first visit. I called their office and will need to wait three months before my appointment. There are a few reasons I picked this doctor and really don't want to choose another doctor at this time. Although I want to start feeling better NOW, I also do not want a repeat of going to any of the horrible doctors I had gone to for my Migraines. I realize I am not the same patient I was with the first few neurologists, but I want to try to get it right from the beginning if I can. I know it's still a crap shoot, but I will keep trying if I need to after my first visit.

I can't wait to start feeling more normal again. Right now, that even means having my normal Migraines and trying to deal with them without all of these other symptoms. I can't keep going on with this level of fatigue or how extremely cold I feel all of the time along with the many other symptoms. I'm not really sure what I can do in the meantime to help alleviate some of this. I believe I am getting enough iodine and don't want to start increasing it even more at this time especially on my own. I guess it helps knowing that I have this new real path to go down to try to help with my overall health.