Saturday, July 31, 2010

Young Migraineur

Not long ago, I babysat for four of my nieces - one of my brothers has four daughters. We really had a blast and luckily their house has dimmers on most of their lights. Those lights that didn't, went off.

One of these girls has a Migraine a few times a week. She is the second oldest daughter who is almost ten years old. While babysitting, I was able to spend a little time with her and we talked about her Migraines.

She was diagnosed with Migraines a couple of years ago and just recently went to a new pediatric neurologist. Like many of us Migraineurs, she has already been through her list of doctors who really should have referred her to a Migraine specialist. I try not to be too overbearing to my SIL, but will give some education tidbits or my opinion whenever I feel it is in my niece's best interest.

I needed to give my view with one of her prior neurologists on what they prescribed her to take. In the end, everyone seemed appreciative that she didn't take the Topamax at her young age after they researched more about the medication and received other opinions. Please note that at the time, I was on Topamax and really liked it, but I felt this doctor wanted to put her on Topamax too soon without trying anything else first. Luckily, this new pediatric neurologist seems to be much more knowledgeable around Migraines and is taking a more cautious approach for her.

What really scares me the most about this niece is that she reminds me too much of me when I was her age. She also has these Migraines almost everyday yet she is still running all around and acting like nothing is wrong. I am relieved that my niece was diagnosed correctly from the start and they are trying to get the help she needs early. I know my SIL was having difficulty with this diagnosis in the beginning, but there were just too many symptoms for her not to have Migraines.

When I was talking with my niece, we talked about a few items. One of the things I asked her was if she ever noticed what she was doing prior to her headaches getting worse. She said after she goes swimming or plays ball they are much worse. Her parents know all about my food triggers and say they are constantly trying to figure out if it could be something she is eating.

There could be so many different things that could trigger a child. After her last doctor's visit, the neurologist finally got them to keep a written diary around everything she does and eats. I think one big Migraine trigger for her is exertion and that is one of the items her current doctor wants to look into as well. That would be a tough trigger for an active kid.

One more thing about this babysitting gig. My brother was there when the girls were eating. He brought them some french fries to go with their other food. I have to avoid fries because of the oils they are cooked in. Two of the girls were trying to be overly kind and wanted to share their fries with me. My brother actually stepped in and said something to the effect that I am sensitive to many different foods. Now mind you, this is coming from someone who I needed to sit down and talk to after he was making fun of me in a restaurant while I was working through my food triggers and eating out.

We can make progress with the education of this disease!


Sunday, July 25, 2010

Is It Me?

How many times do you ask yourself that question - is it me? That can cover a broad array of areas us Migraineurs face. This time, I'm asking the question around senses.

How do you know if the smell you smell is really there? How do you know if what you see is really there? How do you know if what you hear is really real?

These are questions I ask myself many times and sometimes multiple times throughout the day. These questions can be easy or difficult to answer depending on what it is I smell, see or hear.

For smell, it really depends on where I am or what I'm smelling. For example, when I am at home and smell gas (no, not that gas!), I know it's me. It's not real since we don't have gas in the home. Growing up, this was a little more difficult since we did have gas in the house. Being that I was a kid back then, it really didn't matter because the adults would have smelled it if it had ever been real and it kind of taught me that my smeller wasn't so good.

When we first bought our house, I really wanted gas, but have since learned to like not having it as it is an easy way to determine I am not smelling what I think I am. Other times it's not so easy to tell when a smell is real. Once in a while I will smell a dog mess. It was easy to tell when we didn't have a dog, but after we got our dog, I can spend a lot more time searching for little disasters around the house until I was satisfied it is just me. Luckily, she hasn't had an accident since she was a pup.

Vision is a little different. I can't always tell if something I see is real or not real. I don't know if a bug that just scurried by or a fly that just flew by really exists. I do find myself swatting at thin air a lot.

I remember when I first succumbed to these UFOs. I was sitting in my desk at work and my own private show started happening again. I had no idea what they were then; just that they happened every so often and I would try to fight it off as best I could. This time, I decided I would sit back and enjoy the program for its duration. It was weird not battling the scene and it was only a few months after this that I discovered I had Migraines with Aura.

The last sensory item I want to talk about is sound. I have heard things that are just not there since I was little and I find I still have a hard time understanding that not everyone hears my noises and that they are not actually there. I don't hear the tones everyday, but at least a few times a week. I had gotten to the point where I convinced myself that these noises were there and still try to fathom that they really are not.

I am glad to know that it's not my smeller, vision or hearing that is off. It was nice to know that these are symptoms of Migraine disease and even though it may seem like it, is not just all in my head.

How do you deal with knowing if something is real to everyone or just real to you? What kind of things do you experience that are your own reality and how do you know it is just you?


Friday, July 23, 2010

Versatile Bloggers Award

I feel really honored to have been nominated for the Versatile Bloggers Award by Gypsy Shalunya.

Thank you so much for thinking about me. I really enjoy reading her blog along with many of the people she nominated.

Rule #1:
Thank the person who gave you your award.

Thank you Gypsy Shalunya. I enjoy reading about your life and living through your nomadic experiences.

Rule #2:
Share seven things about yourself.

1. I have 12 nieces and 3 nephews.
2. One niece and one nephew were adopted from China.
3. One nephew was born with one arm.
4. My parents are in the middle of a two month driving trip from the East Coast to Alaska. When they come down from Alaska into California, they plan on driving the small highway that runs near their house all the way home.
5. My children were almost 9.5 and 10.5 pounds at birth and have never stopped growing.
6. I still play a couple of sports even though I have slowed down tremendously and play against kids younger than my kids.
7. We have had two cats with three legs.

Rule #3:
Pass the award onto 15 bloggers whom you have recently discovered and who you think are fantastic!

1. Brainless Blogger
2. jasmine's cove
3. Putting Our Heads Together
4. Painfully Speaking
5. War on Headaches

OK, I have only nominated 5 blogs. There are many blogs I enjoy reading and some have already been nominated by other bloggers.

Rule #4:
Contact the bloggers you picked and let them know about the award.

Saturday, July 17, 2010

Fake Feeling Well

MyMigraineConnection has been hosting a monthly chat session for a few months now. I think they are real helpful and MMC has improved the way the chat sessions are run with a new software they use.

The next live chat is this Wednesday, July 21st at 2 pm EDT. You can go to the site now to set yourself up to receive an email reminder of this event. This chat is scheduled to talk about Summer Migraines. The July Headache Blog Carnival on Somebody Heal Me by Diana Lee was on Enjoying the Summer Despite Heat. If the scheduled topic is completed before the chat time is over, they will move onto other topics and questions about Migraines!

I found one of the last off topic chat session comments very interesting and have been thinking about it for some time. I couldn't make or contribute to the session, but I could follow along what went on afterward which is another great perk about the chats! The more people who join the chats while they are going on, the better the sessions will be. If you can't make the chat, they are posted after to allow anyone who could not make it, still read what was talked about. Anyway, one quick off topic blurb that came up had to do with people who fake feeling well.

I've been thinking about this topic since I read the chat. Do you ever fake feeling well? I don't intentionally do it, but I'm sure I come across this way. I know I have chronic Migraines and most people don't know when I am not feeling well. I have learned to slow myself down which has been hard.

Yes, I do feel the pain and all of the symptoms that accompany my Migraine attacks, but I went many decades in ignorance. I disregarded my headaches as best I could as I was told at a young age there was nothing that could be done to help me. I now know that this was not good for my health as Migraines Can Cause Brain Damage plus if we fake feeling well, it defeats everything we work so hard to accomplish.

I know I find all of this so difficult too because I support my family which includes two children who are currently in college. I know I need to take care of myself, but I also need to take care of my family. This all interprets to I have to do what I can to keep my job, what's best for my health and my family. Not so easy when it comes to chronic Migraines.

It's important for us not to fake feeling well and to educate others as much as we can about Migraine - to stay real and let people learn what Migraine is all about. I try not to complain because I don't want to be a whiner or to have someone not believe something I say. Knock on wood, I don't get sick very often if you don't count Migraines. I know that's stretching it a bit.

I don't think I purposely fake feeling well whether it is with a regular sickness or with a Migraine, but I don't always do much to help myself or let others know how I am feeling. The only person at work who has ever seen a Migraine on my face has been my boss. I don't see him very often as we don't work in the same building, but I do talk with him most days. There are times when those closer to me know I have a Migraine by the way I talk and even conduct myself.

We need people to understand that Migraine is a disease, not a headache. I have this saying on a coffee mug on my desk as well as the Fire his sorry butt mug and use the one I'm in the mood to talk about if the subject arises. I don't have any problems educating anyone or giving them any information I have about Migraine and usually look forward to these opportunities.

Have you ever faked feeling well?


Saturday, July 3, 2010

Reasonable Light Accommodations?

I am always trying to think of ways to appear or act more 'normal' so I am constantly analyzing everything I do and everything around me in terms of how it might affect my Migraines. Lately at work, I tend to hibernate in my office way too much where I don't come out to visit my team or join other meetings in a conference room. Although it has been real busy at work, I don't think this is the full reason I don't leave my office either.

It's no secret that I have an aversion to lights. I already have a light accommodation at work where my company put these amazing light sleeves over the fluorescent lights in my office. They filter the lights which make it possible for me to stay in my office more then fifteen minutes. This is a reasonable work accommodation.

I have found that I don't spend enough time with my team out in their aisle because of their lights. I find I avoid even going out there in the first place because of the fear I might get 'stuck' out there.

I did have an experience on a more light sensitive day where I was stopped by multiple people that report to me with work questions. Despite saying I was having a hard time with the lights and another teammate reiterating this sentiment for me, the questions kept coming anyway.

This is where I often wrestle with myself. I have a hard time with the guilt of trying to be a good supervisor while trying to do my work balanced with the responsibility of taking care of myself. I know I cut my answers short where I didn't elaborate as much as I normally would have or as they were expecting. I believe this is a big reason I don't go out to my team's aisle as often as I should now.

I have also found myself dialing into some meetings which are held in my building like the remotes log in because of my sensitivity to the lights. I figure that it is better to attend meetings this way to get the needed information instead of blowing the meeting off all together or going to the conference room and getting attacked by the lights. To give you an idea, some of these meetings are run by my boss's boss (the guy in charge of our division) so it's probably better that I attend in person if possible.

I have been contemplating asking my boss to have the fluorescent light sleeves put on my team's aisle and in half of one of the conference rooms. The sleeves I have in my office have a clear side which will filter some of the UV rays and flicker from the light. The sleeve can also twist around to a graduating grated filter side which will filter and make the area darker. I have my office twisted to the darkest setting. I mention this because I'm sure that some people on my team would like it a little darker while others would want as much light as they could get. This would allow them that flexibility and hopefully, give me a little relief.

Do you think it would be a reasonable accommodation to request to have these light filters put on the fluorescent lights in my team's aisle? What about half of one of one of the conference rooms? I wouldn't be asking to have the whole floor done, just this small section where I would rationally go on a regular basis.