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:

Check the Lighting:

Migraine and Headache Diary:
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:

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.


Friday, September 11, 2009

New Theories about Chocolate as a Migraine Trigger

Is chocolate no longer considered a Migraine trigger?

At the International Headache Congress (IHC) conference in Philadelphia, they introduced new studies on chocolate as a Migraine trigger. It basically goes back and looks at previous findings that chocolate triggers Migraines as a new study suggested that cocoa could heal inflamed cells related to Migraines in rats.

Here is an article which goes into more depth about the study: Why Chocolate Studies Are a Headache. The article goes into the benefits of chocolate including how it is one of the richest sources of bioflavonoid antioxidants which counteracts cell damage.

I used to be a chocoholic so I also found it interesting when they talked about having chocolate after craving it before getting a Migraine and how this may be misconstrued by some people into thinking it is a trigger when they were already bound to get one. Since I had to be really sure it was a trigger for me, I had tested chocolate at many different times and still found it best that I stay away from it. I guess I'm not one of the lucky ones when it comes to chocolate.

I hope you find the article as interesting as I did.

Monday, September 7, 2009

30 Things About My Invisible Illness You May Not Know

National Invisible Chronic Illness Awareness week is September 14-20, 2009. Below are 30 Things About My Invisible Illness You May Not Know. This is one of the fun activities for this year for Invisible Illness Awareness Week.

1. The illness I live with is: Migraine Disease

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 1970

4. The biggest adjustment I've had to make is: Not being able to finish a prescription and have my disease go away.

5. Most people assume: I like to sit in the dark and I have an occasional stutter or speech impediment

6. The hardest part about mornings are: getting up after a rough night

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my laptop

9. The hardest part about nights are: staying awake when trying to learn more about my disease

10. Each day I take _15+_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: am open to different options, but like a warm shower on the back of my neck or top of my head.

12. If I had to choose between an invisible illness or visible I would choose: invisible. It has made me stronger and taught me to better stand up for myself.

13. Regarding working and career: I am grateful my employer makes accommodations for me without issue

14. People would be surprised to know: how often I am in pain, feel dizzy and nauseous while mostly keeping up with life and work or at least so far keeping up this appearance.

15. The hardest thing to accept about my new reality has been: that I may not be able to keep up this appearance much longer.

16. Something I never thought I could do with my illness that I did was: learn as much about it as I can so I could tell if a doctor really wasn't an expert in this medical area.

17. The commercials about my illness: are not adequate enough.

18. Something I really miss doing since I was diagnosed is: whatever I want; whenever I want; where ever I want. I have to think about everything before I do it; before I eat it; where I am; where the lights are, etc. Things aren't as spontaneous as they used to be.

19. It was really hard to have to give up: chocolate, coffee and other foods; unconditional sports (I can do some sports, but I have to wear a hat, sunglasses, limit running, exertion, etc)

20. A new hobby I have taken up since my diagnosis is: reading, journaling, researching, teaching

21. If I could have one day of feeling normal again I would: want to get out and visit with people I haven't seen in a while.

22. My illness has taught me: patience, determination and to trust my instincts

23. Want to know a secret? One thing people say that gets under my skin is: it's only a headache

24. But I love it when people: ask questions and want to learn especially if it is to help themselves or someone they know

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: to learn as much as you can and ask questions until you understand so you can be a good partner with your doctor. If your doctor won't partner with you, find one who will.

27. Something that has surprised me about living with an illness is: how many doctors I have gone to, who were supposed to be specialists, really don't understand my disease or want to understand it. Some doctors seem to want to use a one size fits all resolution when it clearly is not the right solution for me.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me some safe food to eat and spend some quiet time with me without even being asked.

29. I’m involved with Invisible Illness Week because: I want to share my experiences and hope to show others they are not alone.

30. The fact that you read this list makes me feel: that maybe I've been able to make a difference for someone else.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

Friday, September 4, 2009

If you Ignore Them, They will Still Come

Last weekend, I finally said those words out loud that I didn't think I would ever say and wouldn't normally let pass through my lips. I said that I thought my preventatives were finally working. This was after I was asked how I made out with the last Tropical Storm which came through our state.

I had really fared pretty well with the recent storms. Just mild Migraines and my cognitive function was kept pretty much in tact too. However, I think I knew something was up even as I was answering this question. I just wasn't myself yet I feel I was subconsciously trying to convince myself that I was fine.

It didn't matter that my cheek was already numb and I was being the biggest chatterbox around. You see, I don't normally like to talk even though I force myself to normal talk when I have to. Being the super talker I was is usually one of my signs that a bigger Migraine is coming on which I know I was trying to ignore as well as the tingling cheek and other symptoms.

It has been a bad week too. I feel like I jinxed myself with the comment. I actually ended up missing two days from work this week because of the Migraine which is something I haven't done before and was still not up to par the rest of the week. I know I shouldn't just ignore my symptoms, but I don't feel like I always think straight at that point either.

I think I want to find some preventative that works once and for all that I will try to convince myself that everything is getting better although I do know that I have been handling the storms better. Luckily the Migraine has been winding down and hopefully I'll be back to normal tomorrow as this is going to be a big weekend that I need to be ready for.

Is it normal to not want to get Migraines that you don't notice obvious symptoms?