Saturday, September 12, 2009

Email about Light Sensitivity

I recently heard back from my cousin who I met up with at our family reunion over the summer. I had sent her an email for a friend of hers who is having a really tough time at work where her employer is not giving her any accommodations at all. Basically, they are giving her an ultimatum of deal with it or leave. Can you see my lowered blood pressure go up? Ugh!

Her friend is a lawyer and has become very sensitive to light. The light sensitivity issue is right up my alley! I told her about what my employer has done for me and where her friend could find additional information which may help her and at least give her direction to get started with.

The feedback she gave me when we met up again was that her friend and her friend's mother were beyond thrilled with the information they received. I am hoping this also means that her employer will be willing to work with her now.

I also explained to my cousin that my employer happily made light accommodations for me that were reasonable. Even though I have problems with other lighting on my floor and in other people's offices, it would be unreasonable for me to ask for light accommodations all over my floor. She laughed and understood my point about reasonable accommodations under ADA.

I also explained to her that there are at least two lawyers on the site I listed in my email who are no longer practicing full time because of their Migraines so her friend may benefit by reaching out to the MyMigraineConnection site.

I have included the email I sent to my cousin below, which is mostly intact. I thought it might be helpful to others if you needed to send some type of similar information to someone you know who is in a like situation.


Dear Friend,

It was really nice talking with you at the lake. I wanted to give you some links and information for your friend with Migraines. I know how hard it can be when you don't know where to go or what to do with something that sounds so normal in everyday life yet nobody, including yourself, seems to understand what is really going on.

Please feel free to give my email addresses to your friend if she would like to reach out to me or even if you would like to ask any questions. I don't check my personal email everyday, so if there is anything that you would like answered quicker, please use my work email address.

Here is a link to the Migraine forum I mentioned MyMigraineConnection. I really trust the Migraine information here. They are very serious about Migraines and the information they pass along.

The head moderator is a well know patient advocate by the name of Teri Robert. She even wrote a book a few years back that I would strongly recommend. Here is the name and a review of that book "Living Well with Migraine Disease and Headaches". My biggest problem with the book is that I have bought it a few times and have ended up giving it away to someone else who has needed it. I feel it is a very good reference book and nice to have on hand.

If you go out to the site, you'll get to know the look and feel of the it. Here is the homepage of the site MMC Homepage. I'd also like to give you some links to get started.

Understanding Migraines:
http://www.healthcentral.com/migraine/understanding-migraine-29375-5.html

Check the Lighting:
http://www.healthcentral.com/migraine/triggers-160927-5.html

Migraine and Headache Diary:
http://www.healthcentral.com/migraine/triggers-160927-5.html
If you keep a daily diary, it may help you identify some additional triggers or patterns to help you manage your Migraines.

Did you know that Migraines are a recognized ADA disability? Of course you still have to be able to do your job, but if there are any reasonable accommodations your workplace can make for you, they really should. The site has a lawyer who writes some articles (SharePosts) about different types of legal issues we run into without giving us actual legal advice. Here is a link to some of her SharePosts: http://www.healthcentral.com/migraine/c/11175.

I am also very light sensitive. I do have workplace accommodations with my lights. I have sleeves that go over the fluorescent light bulbs that are in my office. The sleeves slip right over the fluorescent bulbs, right down the length of them. About a third of the sleeve is solid colored and then it transitions to a clear color which can be twisted around the bulb to allow different amounts of light to pass through. I don't know where my employer got them from, but here is a website I found which sells something that looks similar Misc Light Sleeve Link. I thought this would at least give you a visual. Without these sleeves, I don't think I could work in the office. The lights affect me horribly where I don't like to go into other offices and when I need to go into conference rooms, the first thing I do is look at where the lights are to determine where I will sit. I notice I also do that in other places as well.

There is a lot of other information on the website. I thought this would give any light sensitive Migraineur enough tools to get started. I do understand how lost, lonely and confusing this whole thing can be; I still feel this way at times! Please feel free to give your friend my cell number if she wants it. I know I don't know all of the answers, but I can listen and understand what someone is going through while sharing some of my own experiences. My workplace has really been great to me. This forum is also another place to go out and see others experiences and ask questions of them. Some people have had a tougher time with their workplace.

Please let me know if there is anything else I can do.

Thanks,
Puppet

5 comments:

chrissy said...

very interesting...thanks for sharing...:)

WinnyNinny PooPoo said...

Great letter. I may check the light covers out you mentioned. My office is small and there are 3 four bulb flourescents in it. It's like working in a tanning booth!

MigrainePuppet said...

I would not be able to work in the office without the fluorescent sleeves. They have been a real godsend for me. I don't believe it is unreasonable to ask for these as an accommodation. Well worth it!

Megan Oltman said...

What a great resource you created for your friend! I'm glad to know about those fluorescent light sleeves too!

MigrainePuppet said...

The great resources are really on the MMC website. I feel grateful to have them there and the need to share them with whoever could use their help.

The sleeves have been a true salvation and occasionally gives me an opportunity to educate someone new on Migraine disease or pass on more information to someone who is already familiar with them.

Thank you, Megan.