Friday, December 24, 2010

Don't forget the Unavoidable

I know I overdid it a little on cookie weekend and still think I would have been alright, but there is one big thing I always seem to forget about. I have to leave room for the triggers I can't avoid.

Even if last weekend was not so busy, I would have been hit by this unavoidable trigger, but I don't think I would have been hit as hard as I was since I was a little more worn down than usual. My arsenal of medications probably would have worked a little better than they did too.

In someways, Migraine disease can remind me of when I was pregnant. I always had to know to stop things before I became tired. If I waited until it was too late, I'd be worn out for even longer than normal. I was tired after cookie weekend and didn't think too much of it until after the unavoidable trigger hit.

I left work early on Tuesday and ended up taking a new medication. I don't know if that is part of the reason I was off the remainder of the week, but I know I will need to try it another time to see how I react to it again. This is another very frustrating part of Migraine disease. We are constantly performing these experiments on ourselves. This testing could be with new medications, foods or just about anything. It 'simply' takes time and patience before we find whats right for us.

I now have a whole year to figure out what to do about next year's cookie weekend. There should be some difference that I won't have to worry about like I will not be in this phase of the elimination diet and will not need to go food shopping because of that. I don't typically go food shopping on cookie weekend, but needed to this year because I have to cook fresh foods for the elimination diet as I continue to delve through different foods.

I am open to any new ideas for what to do next year. I will still need to bake the cookies in one weekend and will be using my dough mixer again which was super helpful. I will not go food shopping, cook anything else and I will nap again. I can't get as worn down as I did this year. Do you have any suggestions about what to do next year?

Take it easy during the holidays. Try not to overdo it and leave room in case you run into some of your unavoidable triggers. I hope you have a happy and healthy holiday season.

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Wednesday, December 22, 2010

New Migraine Site

A new Migraine site has recently been unveiled. It can be found at:
It's nice to have another trustworthy site available for us to visit where we can go to get more reliable Migraine information. We should also recognize many of the familiar Migraine names and faces on the site. They already carry a great reputation in the Migraine field and will be contributing material on Migraine.com where they can keep passing on more of their tremendous information!

Migraine.com has: quizzes, Ask the Expert, Physician Experts, Healthcare Experts, Patient Advocates, suggestions on different ways we can Get Involved, a forum, blogs, articles and I could keep going on. There is also an on-line Migraine Journal which will have more great new features coming in 2011. When the Migraine Journal is officially launched next year, it will include a video tutorial and an expert physician article. You'll have to explore Migraine.com for yourself to see everything it has to offer!

Sometimes I have a harder time comprehending things than other times where I find it easier to listen to new items. If you would like to sit back, Migraine.com has a brief tutorial on the registration process on youtube where you can listen to and watch the activity.

If you know me, you know that I am a numbers person. There are polls all throughout the site. I like that I can immediately see how I compare to others on each poll and even long after I've taken the poll, I can see where I stand after new people have taken the poll; my answers remain in bold so I can see how I originally answered the poll without having to play the guessing game.

To introduce more people to Migraine.com and to communicate their own Migraine stories, the first 500 people who share their stories will be entered into a sweepstakes where someone will win an Apple iPad!

You can review the complete set of rules in the 'Share Your Story' section where you can also look at some of the interesting stories that have already been submitted as I have even added my story. I can't wait to read about the 500 different accounts that will inevitably be told. Maybe you'll even be the winner of the FREE iPAD sweepstakes!

Check out Migraine.com. See what you think! I'd love to read about your Migraine story!

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Sunday, December 19, 2010

Cookie Weekend

This was a weekend I try not to think about, but then instantly become concerned about once it is here for a few different reasons. This weekend was cookie weekend. I would give myself a passing grade in Migraine management this weekend, but I didn't do a great job.

I have been baking cookies for my family for over twenty years. Even though I enjoy it, it has been getting more difficult every year. I probably would have stopped making them a couple of years ago if it didn't mean so much to my boys and if I'm making cookies for my boys, then I might as well do enough for the rest of the family. Last year, the boys gave me a dough mixer for Christmas. This definitely made it easier to mix this year and I was not exerting myself the way I have in previous years. I hate to admit it, but I think the cookies look a lot better; perhaps because a lot more air gets in there when mixing.

A good rule to Migraine management would be to spread out cookie making over several weekends. However, I know all of the boys I live with. I would end up remaking all of the batches I made early because they would have eaten them up. This is the reason I wait until the last weekend before Christmas before I bake plus baking them last minute keeps the cookies as fresh as possible since we won't see the rest of the family until New Year's Day when we can all get together.

I don't think I would have made it through making the cookies if I didn't have the cookie dough mixer. It really saved a lot of my energy that I would not have had this year. I was also able to take a needed nap during the day. My youngest son has helped me decorate the sugar cookies forever and continues to do so. The last cookies I make are a drop cookie that must settle overnight and then I refrigerate them before bundling everything up. If I didn't package them the same weekend, they would also disappear and I wouldn't have enough cookies for everyone else.

This year since I am in the midst of the elimination diet, cookie making was a little more difficult. It is a good thing I have a lot of cookie testers around and they would even be willing to test every batch that came out of the oven if each batch needed that kind of quality control testing. Given that the dough was mixed differently this year, it was nice to have this upfront testing done - before everyone gets a chance to have these cookies.

I don't think I was real bad, but I wasn't as good as I wanted to be either. I have to keep telling myself every time I want to stray from my diet, there is a reason I chose to go back on the elimination diet. I want to identify if I have anymore food triggers as I believe I do. The only way I am going to continue to find them is if I stick with the diet. I can say that all I want since I don't want to break the elimination diet, but I did have three cookies while baking.

As I go through the ingredients, I had one chocolate chip cookie where the chocolate chips could be a problem for me, I can't think of anything in the sugar cookies and although I haven't retested everything in the oatmeal raisin cookies, I don't think there is anything that would stick out, but I could be wrong about that again. I didn't plan on having these cookies and even though overall I feel I showed self control, it still wasn't good enough.

What I find amazing is that I have gone to a nice Italian restaurant with a few friends and all I had was water as they had appetizers, meals, desserts and drinks. I was never tempted to enjoy anything but their company and conversations. I can forgo this nice Italian meal with all of the ambiance with a few friends, but I can't skip a couple of cookies. On the plus side, I did not touch any of the cookies I knew would be really bad for me like these fudge cookies that I used to love and everyone else still enjoys.

One other poor Migraine maintenance I did on cookie baking day that I would not have even entertained without the dough mixing machine was that I also took a break and donated blood. I think that speaks volumes for how well the dough machine worked. I had been looking for a few weeks for a time and place to donate blood and this was the only time I would be able to do it. Of course if I did not have the dough mixer or it did not relieve a lot of my exertion, there was no way that I would have gone.

Although I did make all of my cookies in one weekend, ate three cookies while making many double batches of cookies and I stepped out to donate blood, I also took my time throughout the day, used a great dough mixer to do a lot of the hard work and took a nap during the day to try to offset a busy weekend. This is why I would give myself a passing grade in Migraine management this weekend, but I don't think I did a great job.

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Wednesday, December 8, 2010

Pass It On

This weeks doctor's appointment was a visit like none I have had before. It was not what I expected although I had planned to fill my allotted time and even had some back burner items I was saving for another day that I did not need to talk about today. I ended up having an extra long visit with my doctor and not necessarily because we were talking through my questions.

The appointment started off very plainly, but I think I caught her off guard when I simply asked her how she was doing. She was tired and was going to have rounds again that night. She had already worked through the weekend and for some reason, had to work the extra night.

This actually compelled me to talk about one of my back burner items as it was too perfect of a scenario to let pass. To give you a little background, my doctor is also a Migraineur and has told me on previous occasions that stress is her biggest trigger. That never sat well with me although I had never challenged her on it before because of other things going on and lack of time, but I have wanted to talk to her about it for a while and couldn't let this opportunity pass.

I said I was sure that it was probably very stressful to work rounds like that. She nodded. I mentioned that this was the time that she needed to be careful about her own Migraines. She immediately confessed that she had a killer Migraine on Sunday which would just not go away. I couldn't refrain from asking about her typical Migraines and how this one was different. I know, this was a little role reversal, but I was curious and couldn't believe she was answering me. Next time, I'll have to ask how she treated herself. That should be interesting especially since she was working, but I really wanted to stay on my course.

Next I bluntly said that I did not believe stress was a trigger, but an exasperating factor. She tilted her head and smiled the way she does. I continued that even the International Headache Society took it off of their trigger list and moved it to an exasperating factor; that stress could make you more susceptible to your other triggers. She nodded again.

I continued by asking her when she is on call or doing rounds, does she lose a lot of sleep? Is she staying hydrated and drinking enough liquids? Is she eating right? She said she didn't get enough sleep, she would quickly grab crackers whenever she saw them instead of eating anything real and I could see her calculating everything I was saying.

I never got to give her the analogy of stress and catching a cold which I believe really would have driven the message home. Teri Robert gives a great example of this analogy in her Is Stress a Migraine Trigger? article. She says when we're stressed, we're more likely to "catch a cold." It's not stress that causes the cold; it's the cold virus. The stress just makes us more vulnerable to the virus. I think my doctor picked up on what I was saying without completing the analogy, but I may bring it up again in a future visit.

The other part of my appointment had to do with the elimination diet. The last time I saw her, I had just started the diet, but had not added any foods back in yet. She was still very curious about the elimination diet and during my last visit, had pseudo challenged me to convert her into becoming a bigger believer of the elimination diet. I have shared with you one of my graphs, but I have since put together another one and went over both graphs with my doctor.













The brown lines are from my first ediet while the gold lines are from my second elimination diet.

The first graph shows the first six weeks of each ediet while the second graph shows the first six months of the first diet and first three months of the second diet.

You can't really do a weekly compare after you start adding back in new foods because of the weeks you introduce a 'bad' food. You can see an example of that in week five of the first elimination diet. For me, I believe it takes a few weeks to clean out my system, but during the second diet, I had unavoidable triggers during each of the first four weeks.

I explained my diets and comparisons to my doctor as we looked through both charts. We thought the monthly chart was interesting where it shows the same slope down on both diets during the first two months and then how the end points were virtually the same during after the third month.

She kept asking how do you know what to add back, when do you add it back and how. She was genuinely interested in the answers I was giving and kept asking more questions. My first thought was why wouldn't she have looked into some of this already, but she had mentioned during my last visit that she thought the best way to find food triggers was basically by discovery. I think I have convinced her that the discovery method would not work at least for me.

I wanted to answer as many questions as I could for her. During the first visit I had with her, she said that eighty-five percent of her practice is with headache and Migraine patients. I feel the best way I can Pass On all of the information I have learned is to give it to a willing participant, especially a doctor who can Pass It On through her practice as she sees fit. I don't know if she is a total convert yet, but I will get her there. She did say she wants me to continue with the elimination diet; that she sees it is definitely working for me.

I went on to tell her how I started adding foods back in and why I chose a tomato as my first item. Since the tomato is simple, with no additives and the base to so many other foods, I felt it was perfect to add in at the beginning of the diet. We went over the Thanksgiving holiday food add ins and why my last food to add in was an orange. I want to do oranges carefully because of the reaction I had to a sip of OJ (half of my face went numb) one week into the elimination diet. So far, I seem to be doing well with the simple orange and explained how I plan to work my way up to our regular OJ.

I don't do everything this carefully, but things that I have reacted to need to be treated a little more delicately. For me, this is where the elimination diet can take a long time, but is well worth it in the end. She seemed to understand what I was saying and I also explained that I may need to breakaway from oranges for a little while to get ready for some Christmas foods. It is not easy to do the elimination diet the way that I do it. There are easier ways, but I think this is the best way for me and I have gotten my doctor to see this especially since she told me to continue doing the elimination diet since it definitely seems to be working for me.

You can see that these two areas of my visit this week were really filled with a lot of questions, mostly by my doctor. You can also see why my appointment took a little longer than usual and went over my allotted time. I also had other questions I needed to go over with my doctor which successfully included changing my rescue medication.

I really thought the visit went well. I hope she felt the same way and I believe she will pass on some of this information to other patients who could benefit from either doing their own elimination diet or trying to identify and manage their triggers better when they are in stressful situations.

I am grateful for all of the on-line help I have received from others which helped me to learn the information I have around Migraines that I want to Pass It On in any way that I can. Thank you.

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Friday, November 26, 2010

Traditional Dinner

The only Thanksgivings I have ever known have been huge where everyone contributes something to the meal. This year was no exception although it does seem to be growing as there were forty-two family members who were able to make it. Since everyone brings something to the meal, there was no way I was going to be able to enjoy the different foods everyone had brought especially since I only had four weeks to add Thanksgiving foods back into my diet.

I had decided the only way I could enjoy a true Thanksgiving meal was to bring my own dinner plate with the foods I had added back in which would not have any unknown ingredients in them. During the four weeks, I tried to get prepared for the parts of the dinner which would mean the most to me. I decided to add back turkey, another vegetable and I really wanted stuffing. I already had plain potatoes in my diet. I knew I wouldn't be able to have a fancy stuffing, but a basic one would be enough to fulfill that Thanksgiving dinner craving I would have.

When I added in the vegetable, I also added in butter and salt. I really wasn't concerned about any of these items, but I want to add back everything carefully on this elimination diet. Luckily these items passed as well as the turkey the week before.

The problem came with the stuffing. Stuffing has so many different ingredients in it. I ended up finding a recipe with the most basic ingredients so I would not have many new ingredients to add back. Onions was one item I needed to add back in and knew I needed to be cautious with especially since it is a trigger for several people I know even though I didn't really suspect it for me.

I had a big surprise when it turned out to not only be a food trigger, but also an allergy! It didn't matter whether the onions were raw or cooked. This really stinks! I ended up making a stuffing that had extra celery and no onions which was good.

Bringing my own plate really worked out great and I suspect I may need to bring some of my own foods in future years especially because of the onion thing. I know I wasn't ready and did not plan on bringing my own dish from the beginning, but I know this was the only thing that helped me eat a Thanksgiving meal with my family this year and keep my head mostly in check. You can only imagine the noise level with sixteen kids under the age of fifteen there!

As I continue on my elimination diet, I know I am going to test different onion variations to see if there are any that are safe for me to eat. Luckily, my allergy is not an anaphylactic allergy that I can do some more of this testing. I want to at least test onion powder and dried onions. This is where I find the elimination diet takes a little more time for me - when I find something that triggers a Migraine, I feel I need to dig in around it to find out as much as I can about that particular trigger and believe the testing pays off in the end. This is the same process I followed when I did my first elimination diet and was able to find alternate ways to enjoy a food if a specific ingredient caused me problems.

I know right now I am still matter of fact around the onions and that it is going to hit me soon that I am going to have to check everything I eat for onions. This is something I am not ready to add to the list I already have to deal with, but is exactly the reason I started the elimination diet again. Urgh.

I am happy I was able to enjoy my traditional Thanksgiving meal and was able to spend the day with my family. I hope you had a happy, healthy and pain free Thanksgiving!

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Monday, November 22, 2010

Will revise remaining sessions

I was glad to have the weekend without other distractions to think about what I wanted to say in the email to Presenter Lady. I was also able to put it in a more matter of fact manner than the emotions I would have shown if I sent something out immediately.

After much editing from my original draft which was more therapeutic and a chance to get everything on paper, I think I came up with something that pretty much said what I wanted to get across and will hopefully get the results I am looking for. Here is a copy of the email I sent and have already received back a response:


Hi Presenter Lady,

First of all, I want to say that I have enjoyed and learned something from most of the monthly leave webinars. I also want to mention that I have heard Migraines used as different examples in a couple of these webinars in a manner that has made me uneasy and even gasp on occasion to the point that I was glad my phone was on mute.

I know Migraine is an often abused disease both in the workplace and in the emergency rooms which makes it more difficult for those who truly experience debilitating attacks. Migraines can be a chronic serious health condition and is more than just a headache where its symptoms can affect the entire body. Migraine is a genetic neurological disease where some people take medications to try to prevent Migraine attacks.

On these webinars, I have heard many of the questions asked by some of the managers like ‘can we ask them what’s wrong with them’ or ‘can we deny their leave’. I’m glad they have a place to ask these questions and hope they really listen to most of what is said on the calls which is why I feel I must say something about the implications made around Migraine disease.

During the last webinar, I felt the insinuation was made a few times that Migraines are not serious and maybe now that there are only x paid days for FMLA leave, those who are not really sick, will make an effort to come into work. From my experiences, most Migraineurs (a person with Migraine disease) have the intermittent FMLA leave to protect their job and getting paid for those days off is a secondary concern.

One-third of my direct reports are Migraineurs. I understand that twenty-eight percent of workday Migraines in the US resulted in absenteeism – eleven percent full day, five percent came in late and twelve percent left early. Migraines are tough for an employer to manage especially because they are the twelfth most disabling disorder and cause nine percent of all lost labor in the US every year.

Because of the types of questions some of the managers ask, I would not want them to get the wrong idea around Migraine disease which is already a highly misunderstood and abused condition. Using Migraine in these types of examples does not help Migraineurs, who truly need the help they seek whether it is from their employer or in the emergency room, overcome these misconceptions.

I have done extensive research around Migraines. If you would like to talk more about the challenges and/or the experiences of Migraineurs, I would appreciate the opportunity to talk with you or perhaps we could meet for lunch after our division moves into your building early next year. I think it’s important to enlighten others on the challenges of this chronic serious health condition.

Thank you for your time,
Puppet



It didn't even take ten minutes before I got a response back from Presenter Lady. She thanked me for my email, said she had also been diagnosed with Migraines and that she meant no disrespect to me or any other associate who has this chronic condition while apologizing if I thought otherwise. She appreciated my feedback and will revise her examples for the remaining sessions.

I let her know I appreciated her response and for revising the examples. I also wanted to make sure she knew if she ever needed more information or support for herself, that I knew of a whole support network which could help her.

I have two different conference calls when the next leave webinar is scheduled. I am already planning on rescheduling both of them so I can attend this webinar for a third time. I don't know why, but I really need to hear the new examples used in the next webinar. Did I or am I over reacting?




Statistic Sources:
Alliance for Headache Disorders Advocacy Quick Facts
Migraine Presenteeism Creates More Lost Work Time

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Saturday, November 20, 2010

"For those who are really sick"

I attended a webinar earlier in the week and felt it was necessary to go to a repeat showing at the end of the week. No, not because I thought it was one of the best presentations I'd ever seen, but because the first webinar infuriated me so much that I wanted to make sure I heard what I thought was said.

We have been having these LOA webinars on a monthly basis. For the most part, they are really informative and I only had an exception once before when they used Migraines as a stupid example to get a point across. This month's webinar was simple or so I thought. It was to go over the changes in our LOA policies that are going into effect for next year.

So what has me all worked up? There are changes being made to our intermittent FMLA policy. What got me upset was the way the Presenter Lady talked about the changes and in my opinion put down Migraines. Intermittent FMLA is not required by law to be paid. My company is going to pay for x number of leave days which really is awesome.

The Presenter Lady said that Migraines will still be approved for intermittent leave, but will only be paid for the x days. She went on to say that the original intent of the leave was to protect associates dealing with time off due to serious health conditions like cancer or chemo. It's for those who are really sick. She actual said that with the limit to the number of paid days, maybe those who aren't really sick will make an effort to come into work.

Like the first meeting a few months back where I felt Migraine disease was abused too, I didn't say anything. This was not the time, place or audience to say or educate anyone about Migraines. I did attend this webinar twice and she is going to hold it two more times. I thought she toned it down a little more during the second presentation, but still put across the message to the supervisors that Migraine is not a serious health condition and employees should make every effort to make it into work.

We know how Migraines are abused in ERs and how we pay the consequences because of that and I'm sure Migraines are also abused by many who have an approved FMLA. I definitely believe there was a line crossed during this webinar in a similar way like we are treated in the ERs because of the abusers. I also realize that if the shoe doesn't fit, we shouldn't try to put it on, but this was a broad stoke put down of Migraines and Migraineurs that I don't think I can let pass.

I think what gets me even more upset is that this webinar was just five days after I finally used my FMLA for the first time after having it for a few months. If you know me, you know I struggle with doing the right thing for myself vs my responsibilities. Many times I make the wrong decision which only hurts me more in the end. I am working hard at that, but things like this, do not help me take better care of myself.

Do they really want me to 'make an effort to come into work' when I can't think, slur or stutter my words and mix my letters up when I write or type words? Am I really representing my company the way I would want to? The way they would want me to as long as I made this effort to come into work because I don't have a 'serious health condition'? I didn't even mention the pain and the way we may react to things when our pain levels are up and tolerances are down.

I have a new education project now. I hope I will have calmed down enough to respond in a professional manner whereas I would not have if I reacted right after the first webinar. We finally received word of where our office will be moving to next year. As luck would have it, we will be moving into the same building as Presenter Lady.

I will need to have my initial response about this last webinar to her early next week. I really can't let it go any longer than that without doing anything. I have to gather some statistics to give her a base of how Migraines can be a serious health condition and will include some of my personal work experiences, but I don't want to overwhelm or lose her in the process either. I don't want Migraines to be abused in future webinars and hope a little education will help with that.

I'd like to ask for some of your help too, if possible. I need some good statistics to share with Presenter Lady. This would be a big help since I am limited to the amount of time I will be able to spend on-line this weekend. It's been a tough week and I don't want to wait too long to inform her about the true impact of Migraines. I really appreciate any assistance you can give.

.

Sunday, November 14, 2010

Don't blame Mom for Migraines

I was at my brothers house the other day. There were a few of us there including our mother who was visiting from out of state. We stopped by after work so they had ordered pizza for dinner. This was also the day after a big Migraine so I still wasn't quite myself.

I've become an expert at not eating at these impromptu dinners due to my elimination diet and will grab something as soon as I get home. These 'dinners' expose my Migraine disease and brings on the 'how's that going' or 'how are your headaches' questions. It's almost automatic to answer that second question with 'I don't have headaches, I have Migraines' which is inevitably followed by the question 'what's the difference' no matter how many times you've answered it in the past. I'm sure you know know what I'm talking about and what I said next, 'Migraine is a genetic, neurological disease'....

Migraine has become a matter of fact of my life and part of who I am. As I was talking to my brother, I told him it came from his mother's side at which our mother became upset and started asking: 'How did I know it came from her side? How come it didn't come from our father's side? Why is it always blame the mother?' I'm still in my matter of fact mode and not hearing what she is really saying. I know I have to work on this, but I still have the Migraine hangover from the day before going on too.

It didn't matter how much we talked about how it wasn't only me and some of their grandchildren, but that there are other relatives on her side of the family who also have Migraines and none that I'm aware of on his side of the family. We had also talked a while back about how she used to get 'headaches' and the accompanying symptoms she got. She mentioned this again that night, about the 'headaches' she used to get, but they 'only' lasted for about a ten year period - while she was raising us. Luckily the subject changed.

We eventually moved onto food allergies because my SIL had a really bad reaction earlier in the week. I mentioned my allergy and the reaction I get. All of a sudden, my mom blurts out 'Aha, you got that from your father!'. Apparently he has the same allergy and reaction. This is when it hit me as to what she was really saying earlier even though she had spoken the words before.

I didn't want to rehash the conversations we had just had earlier. She was going home the next day and I needed to get going shortly for the evening. I called her after she got home to talk. I let her know that I don't blame her for my Migraines and so forth. She said she was just trying to be funny. Maybe, but I don't know if that's everything. Not by all of the reactions she had and I probably don't make it easier because although I don't blame her, I do take Migraines very seriously.

I know how I feel about my son. I don't blame myself for passing Migraine down to him anymore than I blame myself for both of my boys having my brown eyes instead of their father's blue eyes. However, sometimes I do feel guilty about passing Migraine disease down to him. I am not at all happy he has Migraines and it took me some time to convince myself that he did indeed have Migraine disease even though I really knew better.

I dealt with my guilt by taking charge and giving him the power he will need to manage Migraines over the course of his life. We started off by giving him the basics around Migraine disease, first by reading the "Living Well with Migraine Disease and Headaches" book and then by discussing Migraines afterward. We have since identified some of his triggers and graduated to some of the basic supplements used for Migraines. He has commented that he will still lean on me if he ever needs to take the next step. So far, he has been doing awesome with his Migraines this semester at school!

Of course I will do anything for him, but I also want to make sure he is independent and knows what he needs to do just in case I am not around so he can take care of his needs on his own. I do give him little boosters here and there, but will really push after he gets out of school and let him know that as long as I am here and lucid, I will do whatever I can to help him.

This also got me to thinking about everything around my mom this week. Joking or not, she never knew anything about Migraines; even about her own Migraines until we pieced it together a couple of years ago which was way after she stopped getting attacks. She never had the opportunity to pass down the helpful hints around Migraine like I have been able to do with my son. I'm sure being able to help my son this way relieves some of my own guilt.

I think my mom understands that I don't blame her for any of this. Migraines are a part of my life and a part of who I am.

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Saturday, November 13, 2010

Rang the Bell

I went to work the other morning feeling fine. It didn't matter that I had woken up in the middle of the night and needed to take a triptan. It had worked and I was able to sleep through the remainder of the night. I didn't even have that triptan hangover feeling when I woke up in the morning as I can get sometimes.

I made it through an important early morning conference call when shortly after, I didn't even need to play that silly wrestling game I often have with myself. By the way this one was coming on and with the symptoms that were emerging, I knew I would not be able to stay at work and luckily, my calendar was unusually cooperative with my departing for the day especially at such an early hour.

This would also be the first time I was going to use my intermittent FMLA. The only reason the iFMLA really entered through my mind is because I knew theoretically what I needed to do, but now I needed to make sure everything was going to work the way it was supposed to. As always, my boss was great about things like this. When I made the call to him, he just asked if this was for FMLA which made it so much easier because I didn't really feel like talking much about it and these four little letters said everything. He knows the deal and what's going on. We did talk a little bit as he needed to make sure I didn't have anything that needed follow up.

After I got home and for various reasons, I ended up using my rescue medication. This was the third time I have taken it and the second time it did not help. I could still feel the pain past midnight. The thing that helped the most was sleep. I mostly slept from the time I got home until the next morning although I do confess that I occasionally answered some emails on my blackberry as I was expecting some things to come through. One that really scared me after I answered it was from the head honcho in our office. After I answered it, I was praying I was coherent as I don't normally email with him let alone after taking a synthetic opioid. I think I was ok in what I said.

In my company, I have up to two business days to report my absence upon my return to work for iFMLA. I called the leaves group first thing in the morning. I want to make sure everything was in order and everything is upfront. The person I got on the phone was so helpful and informative. She even gave me additional information about my leave that I tried to get from others in earlier conversations. I am confident of what I have to do if I need to call out again and gave my boss an update on everything he needed for my leave. We should both receive a new letter from our leaves department about this time off.

I have to be upfront with you. I don't like all of this fuss about taking this time off, but I don't want any problems with taking it if I really need it either. I know I am lucky my boss is really good about everything when I need time off, but then he would have little control about the new absence and tardy policy that just went into affect for my company which FMLA helps protect me against.

When my coworkers asked how I was feeling upon my return, I even surprised myself by the answer I gave in response to those close to me as long as we weren't in the middle of business stuff. My answer was that I felt better the morning before at the same time. This was earlier than the time I had decided to leave the day before and I really was feeling fine when I first arrived at work that day. This morning that I returned, I still didn't feel like myself, but there was no reason to stay home. I had more of that hangover feeling and it was good I came in as I needed to deal with escalated issues all day long.

Although I really had no choice about calling out this week, I often fight with myself about whether or not I should take time off. Because I did not wrestle with the decision this week, I tried to figure out why I typically have such a hard time with the whole process of calling out. I really don't think it has to do with not wanting to take care of myself as I know how much work, effort and cost I put into trying to control Migraines. There was only one thing that I kept coming up with that made my logical sense to me.

All of my life, I have been a very competitive person. Coming from a large, sports minded, sports involved family, there really was no other choice. In many ways, I think I feel like I am admitting defeat, giving up or losing by calling out or ringing the bell (during marine training, you can 'ring the bell' which signifies the end of your career in the marines - ring the bell; game over). I think calling out gives Migraine, an opponent I fight with all of the time, a victory.

It is time I change the way I view this although Migraine will still remain an adversary I need to conquer even if it means ringing the bell every so often. I guess that's just what I will need to do to regroup or come up with a new strategy in this battle on Migraines.

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Sunday, November 7, 2010

New time? New profession?

The last time my boss, Bart, was in town, we had a very unusual talk. Sometimes it's hard to talk with him because he is very busy and normally works a million miles away. Ok, maybe not quite, but he does work in one of our offices a few states away. It was nice to see him for the couple of days he was in our building.

Bart was still very busy on his visit, but we did get a chance to spend some alone time together early one morning while he grabbed some breakfast. Of course he offered to get me anything I wanted and being as good as I could while on the elimination diet, I declined anything. He asked me how 'that' was going and often teases me about how I eat the same thing everyday. I usually joke back with him because those foods become my comfort foods where I could go back to them and know I would be safe. Plus I can see the humor in eating the same thing everyday; not to mention that I unexpectedly went to a fancy Italian restaurant with some work friends who were in town and all I had was water, but it was still a great time that I would definitely do over again.

Bart and I talked about a lot of things during this breakfast. For a non-Migraineur, he knows enough about Migraines as his wife has had Migraines forever and takes preventatives for them too. Bart was my first teacher of Migraines, but I think he becomes uncomfortable talking about them after a while which is why I try not to bring up the subject with him.

While we were talking, the topic got shifted a little. He was 'cute' when he was trying to come up with other work schedules or professions that I could try which would be best for my Migraines. At least I hope he wasn't trying to give me a hint about having to start looking for another job as I didn't pick it up that way. Although my job can be very taxing and frustrating, I do enjoy the work and still have a lot to learn. He started off by saying I should sleep all day and work through the night. I thought that was creative, but then that would mean I would always need to work under the lights.

He then suggested that I could drive a truck at night or something like that. At the same time, we both said something about how the oncoming headlights wouldn't be any good. He mentioned wearing sunglasses. I've already tried that. I definitely had the wrong sunglasses on as I was driving down the highway because at the last minute, I barely saw a car on it's roof in the lane ahead of me. I have been terrified to wear sunglasses at night since then even though I have other sunglasses with different types of lenses now. I don't want to take that type of huge risk again. It was really nice to see him trying to come up with alternatives for me and listening to my responses even if this was just exercise like - I hope...

What time of day do you think would be best for a Migraineur to work? What type of work or profession do you think would be best?

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Saturday, October 30, 2010

Migraine Makers

There are a few things that keep coming back to me about the elimination diet. I forgot that I used to call the time when I could add back new foods the Migraine maker period and about some of the weird food combinations I would end up eating. I would still enjoy these weird concoctions even though I will probably never have them again when I am done.

I can understand how people that don't have food triggers may view the elimination diet as a complete waste of time, but I believe it is well worth the efforts and that you are lucky if you don't have food triggers. I know I've heard some people, who do not have food triggers, say they wish they had them. I think they are looking for some type of an answer as to what triggered their Migraine, but I wish I didn't have any or at least not as many. To me, food triggers aren't just a matter of something else we have to avoid, but another way Migraines make us alter our life styles and sometimes in a huge way.

I started putting new foods back into my diet about two weeks ago. The first week, I added back exactly as I wanted to conduct this portion of the elimination diet. I believe in the beginning it is especially important to introduce as basic of foods as we can with as little extra ingredients as possible. I am usually a very methodical person.

My basic lunch for the first six weeks consisted of the same fresh meat sandwich that did not have any preservatives, condiments or anything funny like that. I am aware that meat may be a little funny for some people as well as the bread it is put onto, but I also needed to eat something that could sustain me and I could adjust if needed.

The first food I included was a simple tomato. It does not have any extra ingredients to worry about and is the base of many other foods. It was fairly easy to add tomato into my diet. I could eat it plain or add it to my sandwich. My sandwich is usually a great place to use the new food addition and a very welcome addition as even this little change made a big difference to the same sandwich of the prior six weeks.

The second week was a little tougher. Due to a special occasion and against my better judgment, I was talked into trying shrimp cocktail with sauce. I wasn't really concerned about the shrimp, but the cocktail sauce has way too many ingredients to make me feel comfortable. In the end, it was my choice to bring back into my diet. I typically have a hard time letting people do nice things for me and because of the occasion, I agreed. I wasn't going to have the typical dessert for the special occasion which is part of the reason I compromised on the cocktail sauce. It made them happy and I knew what I was getting myself into.

I wasn't involved with any of the planning for this dinner and they knew all of my other food restrictions which they kept to nicely. Of course the shrimp did not last past that dinner, so I was faced with either wasting a week of introductions or doing something with the cocktail sauce as I wasn't going to go out and buy more shrimp.

Don't laugh. I ended up making more cocktail sauce and spreading it on my sandwich for lunch. It wasn't until the next morning that I looked at the ingredients in horseradish and I realized what the problem had been. Horseradish contains vinegar. There are certain types of vinegar that passed my first ediet, but I don't think it was the type that was in the horseradish. I also believe I have more food sensitivities than I did when I went through the ediet the first time. No matter how silly this sandwich sounded, it is nice to start getting some variety into my diet.

I have to start concentrating on Thanksgiving now. I can't think of any other special occasions that might get in the way before then and tomatoes was something I had to add back early because they are in so many different things. Since I only have a couple of weeks before the holiday, I am not going to be able to add too much back in before then.

It should still be a great Thanksgiving and possibly the end of a long running tradition as I believe another branch of the family will break off after this year. It's hard to keep everyone together as the family grows and our Thanksgivings are up to about forty people now. Between losing people over the year and gaining people, it is inevitable to have this dynamic change again.

Thanksgiving is four weeks away which means I can add in four more foods before then. I know I'm not going to be able to have any desserts, appetizers or drinks which I am prepared for and will enjoy the company instead. I'm hoping not to run into any more Migraine makers during this time.

Given the choice, what four foods would you add back in time for Thanksgiving dinner?

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Sunday, October 24, 2010

Slowly working at it

I know I still have a problem and have been working on it and me for some time. I frequently ask myself a question like why do I keep abusing myself like this? The more I learn about Migraines and the more yucky I feel, the more I don't want to feel this way.

I treat myself ok when I am home and I am getting better when I am at my relatives homes. The place I still have to act on the most is while I'm at work.

It's easiest to do what's right at home. I have dimmer switches in most rooms and they work great. Whenever I enter a room that is too bright, I will automatically turn it down. My family has come to expect this and don't even comment about it anymore. I think it's just as natural for them to turn the lights all the way up as it is for me to have them as low as possible.

Many of my extended family members have those demon filled CFLs (Compact Fluorescent Lights) at their houses. Diana Lee, from Somebody Heal Me.com wrote an article, Update: CFLs, Migraines & the Law. The government has been looking to make light bulbs more energy efficient and it appears that some companies, which manufacture the incandescent light bulbs, are going to make them more efficient so they won't be phased out after all. In many ways, that will be such a relief as they were originally looking at being banned because they were not efficient enough. Phew.

My sister definitely knows that the CFLs kill me and I can't stay in her kitchen or other rooms when I am there and they are brightly lit. With a lot of people around (she has four kids), it's very difficult to leave the lights off. When I babysat overnight for her recently, I was very touched that my BIL changed many of the bulbs in the kitchen for me and I didn't even say anything about the lights this visit. I could manage through the other lights they had in the other rooms while I was there.

Last week, I spent a little time with my parents in their home. My parents don't normally think of things like the lights. I don't fault them and this is where I know it is my responsibility to speak up as needed. I try not to be too intrusive on them and I don't think they noticed when I would scoot into the darker areas of the room.

On the occasions when I couldn't move, I would ask them if they were finished using a light they left on. My mom immediately looked at the bulb and saw it was one of the devil bulbs and turned it off as she was done with it. She did mention about turning on a different, normal light. I have to confess, I didn't turn it on as I felt there was already enough lighting in the room and that nobody was in danger of not seeing some thing if they were to get up. She didn't ask again or I would have turned the normal light on low.

As you can see, lights are a normal controllable trigger that I encounter regularly. Sound and smells are others that I have to manage, but lights seem to be the most invasive.

The place I still have the most trouble with helping myself the most with is while at work. As long as I stay in my office, lights are not a problem because of the light sleeves and I can also lower the window shade on more sensitive days. Right now, offending noise and smells can be controlled by closing my door. The area that I have to work on the most are my hours.

I often ask myself why I put in all of the hours I do while at work. The biggest reason I keep coming back with is that I feel I have to put in an honest days work. I feel I have peeks and valleys during the day on how I am feeling. I know there are times that I am not as quick as I need to be and even have to take more time doing tasks than it really should take me to complete them.

My boss often lectures me on getting out of work on time. I know he means it and that he is trying to look out for what is best for me. I also know my health needs for me to leave closer to on time, but I still feel I need to put in a whole day of work too without me getting in my way.

There are other reasons for the long hours that I have been working on too and I have gradually been able to leave a little earlier as I am able to alleviate some of these other obstacles. I know I can and my boss always tells me that I can also log out, go home and complete what I need to from home so I don't get other distractions, but I tend to fall asleep as soon as I turn on my computer after I get home and don't get too much accomplished.

Getting a better grasp on these hurdles and trying to identify any additional triggers that I may have is something I am hoping will help me get myself under better control. I know I need to as I think I get caught in this vicious cycle too often and need to get out of it.

Do you have some thing you do that you need to work on with yourself too? What do you do to help manage yourself?

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Tuesday, October 19, 2010

More on common themes

I bet you can tell the two big things that have been on my mind recently. I'm sure you're right - food and lights. I have a few things to talk about; one of which are the lights as I finish up my last doctor visit.

To my stupidity, I haven't used my intermittent FMLA yet. Yes, I know it's me and my own problem. I was hoping that I would feel a little more comfortable calling out with the iFMLA, but for some reason, I still have a very hard time. It's not my boss either. He would be really good about me taking time off if I needed to and having the iFMLA doesn't hurt my attendance or number of occurrences at work either.

A lot of the times I'll go into work with the intention of completing one thing that desperately needs to get done and then end up staying for the entire day as just one more thing keeps coming up. Two other dilemmas I give myself is that I don't want to take my meds before I go in, although sometimes I have to, because they will make me very dense and I still have trouble advertising how I am feeling. I'm sure this makes me come across as very obtuse and aloof when I am like this. It's probably also not good for my career or current job status either, but how do I get past that? It's really a rhetorical question; I know it's an obstacle that I have to work out. I am actually slowly getting better about taking care of myself, but I still have a way to go.

When I was at my last doctor's visit, I mentioned to her that I haven't used any iFMLA yet. Of course she gave me one of her funny looks, particularly because I had already given her my charts since my last visit. I proceeded to tell her that I am extremely happy to have the iFMLA especially since my company announced that we will be moving sometime next year and my light situation is currently up in the air.

At that point, we started to walk across the hall from her office to the examination room. She mentioned how she doesn't like the fluorescent lights in their hallway; she is also a Migraineur. As I looked up, I blurted out that at least the lights were covered. She couldn't believe that our lights at work are not covered. Uncovered lights are really not good for Migraineurs and being extremely light sensitive makes it even worse. She immediately said she could write a letter. I let her know that we still don't know where we are going or what the lighting situation will be like and that my boss is already in meetings about it, but I would let her know if I need one.

It now looks like I have a new project at work. I just found out there is someone who is out on leave due to Migraines. It sounds like she knows what her rights are at work which is a good thing, but I'd like to make sure she is getting the right help and education for herself around this disease. I'd also like to let her know that I am there if she ever needs to talk to someone who understands. I definitely think it helps to talk with someone who knows what we go through.

After I found out my just headaches were really Migraines, my boss would hook me up with his wife. I could ask her all of the silly questions that nobody else would follow. It would help because she would recognize where these questions were coming from and answer them appropriately. I really appreciated her time. Now, I have my internet friends and this blog to help me get through my challenging times. Thank you!


In keeping with another common theme of mine, I'd like to express that my thoughts and prayers are with Eric Legrand, his family and teammates. He is a Rutgers football player who was paralyzed during their football game over the weekend after making a tackle during a kickoff in the fourth quarter. I pray he can make a fast recovery and hope he will walk with his team again.

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Saturday, October 16, 2010

Ready for Doctor Lessons

I've gone to a few doctors who did not believe and actually discouraged their patients from doing the elimination diet. I never went into details around the elimination diet with my current doctor and was faced this week with telling her that I decided to start the diet again. By the way I brought it up to her, I kind of feel like I trapped her since I had already started it.

I kept going back and forth on how I should approach her until I realized what I really wanted to know was how she felt about the ediet so before I said anything else that is exactly what I asked her. She gave a very interesting answer, but she always backs up what she says with her reasons and also keeps an open mind.

She scrunched her face a little and indicated that she is not a fan of the ediet. She thinks we may not find the right triggers and that it might be better to notice a food from each time we eat it. She said it's tough because we can run into other triggers along the way or eat like gluten one day and not the next and it could get tricky when adding back in one class at a time.

I started off by telling her that I never would have found some of the food triggers I did if I didn't go on my first elimination diet. I told her I found soy almost immediately and I don't believe I would have found it any other way. Soy is in so many different foods. I also said that my basic diet does include gluten and I have some other foods that are not high on the food trigger list, but anything can be a food trigger for anyone and I am aware of what my basic foods are and can adjust them as needed. She nodded in agreement.

I explained that I understand there are other triggers that may hinder the introductions of new foods. Like the first four weeks I started on the diet this time and if that happens after I start adding back in, I may need to reintroduce that new food again, but at least I am aware of some of these other triggers. I definitely understand how tricky the ediet is, how there are so many factors to consider and other obstacles that can interfere with what we are trying to accomplish and I will do what I can to make it as accurate as I can. Migraines are not easy on any front, but we have to do what we can to help them. Not everyone has food triggers, but I believe the elimination diet is the best way to find out if we do have food triggers. I know it is the best way for me.

My doctor told me she hopes this works for me and that she hopes I can turn her opinion around. I'm pretty sure I turned around one of my previous doctor's opinions on the ediet after I brought out my charts and explained everything I had done. This was the first and only time this old doctor was interested in anything I brought with me. This doctor actually sat next to me as I went over everything! I never went back after I gave the doctor this lesson.

I'd like to show you one reason why I believe in the elimination diet as much as I do. Please mind you that I did not have this graph when I visited my doctor this week, but I can promise you that I will make a believer of her during my next visit. This is a graph of the first five weeks from both of my elimination diets - I need to point a few things out after:


The dark brown line is from my first ediet while the gold line is from the ediet I am currently on. The graph would probably show a better difference if I could show it as monthly, but it is too soon for that now. This time, the number of Migraines I started with is lower than where they were the first time. I believe a big reason is because I have been avoiding the food triggers I found from that first diet.


If you look at the first ediet, the number of Migraines started to reduce dramatically after two weeks. You will also notice that they increased significantly during the fifth week. For various reasons, this was the week I had to start adding back new foods. As you can see and to my surprise, I did not have a good reaction to this particular first food.

During my second ediet, I really didn't have much of a drop in the number of Migraines until week five. The first four weeks were surrounded by unavoidable triggers. There were no unavoidable triggers during week five and so far, it's been a fairly good week six. As you can see, it would not have been good to start adding back new foods after four weeks this time. I feel I am ready to start adding back now!

During my visit, my doctor asked me what I was supposed to add back first. I told her anything I wanted. I will be as methodical as I was the first time and more cognizant of other triggers this time as I have learned so much more about Migraines and triggers since I first did the elimination diet.

I really am ready to start adding back now. I am ready for more variety in my diet, but I want to find more true food triggers if I have them.

Do you have food triggers? How did you go about finding your food triggers if you have them? Have you done the elimination diet? How did you go about doing your elimination diet?

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Sunday, October 10, 2010

A Little Light Talk

Over the past few weeks, I've had a couple of conversations about the future of my lighting accommodation at work. Although I still don't know what's going to happen, it is looking better than the first talk I had, but at that time, I didn't have a chance to talk with my boss who has always been very helpful in this department.

A couple of weeks ago, I was talking with our HR director about something else. I knew it would be premature to have these conversations, but she brought it up after she was talking about how one of her relatives has Migraines and then she remembered about my lighting needs.

During our discussion, she said she couldn't promise me anything around lighting modifications. She also started quoting the archaic lighting policies we used to have under an old maintenance supervisor when the lighting absolutely killed me. As I said, it was still too early to have these talks because we still don't even know where we are moving yet and she asked me to remind her later on so I could possibly look at our new area to help determine the best place for me to sit.

A big problem about where we are moving is that a whole group of us will also lose our offices which means I will lose a lot more control of my lighting. I know this is a little selfish as we will all need to be extremely careful about everything we talk about everyday as we have a lot of impromptu confidential conversations that go on throughout the day too.

As we kept talking, I slipped in different challenges that Migraineurs face as she needs to understand that Migraines are not just headaches. I also mentioned that many of us know people with Migraines, like she does with her relative, and if I can help them understand a little more around Migraines, then I feel like I've helped someone someplace. She seemed to understand that. She was funny after I revealed some of the obstacles and comments I had received around getting my light accommodations setup the last time. Even though it is a couple of years later, she apologized for the comments I received.

This past week, I was able to have some conversations about the future lighting and other things with my boss, Bart. I feel a lot more confident in talking with him about this as he understands and was very instrumental in getting my current light accommodation in place. Bart understands enough about Migraines as his wife has had Migraines forever and takes preventatives for them too. Bart was actually my first teacher of Migraines, but I don't want to inundate him with Migraine talk since I'm sure he gets enough of it and lives with it at home too.

Bart told me not to worry about the lighting. He said they have already started having different talks around employees who have a need for special accommodations. I reiterated to him that I would not be able to handle it at work without the light accommodations I currently have and that this is my biggest concern about moving. I didn't mention to him that I have other work anxieties around my Migraines too because the lighting is the one I worry about the most. I think I also fear coming across as just wanting the best environment and not necessarily for health reasons which is why I pick and choose. I guess I really need to see the area before I can judge.

Bart has an idea of what I go through. We met in a different city for a meeting a few months back. We split when we got to the building, but I was able to give him my parameters around picking out a seat in a conference room if he got there first based on the lighting in the room. It's embarrassing to let out these inter-most struggles we go through that appear to be totally strange yet normal to us. These are the types of things I try to keep invisible from work as I fear they may hurt my employment because it is weird and usually within my control. By the way, he did a really good job in picking out the seat.

I'm sure there is going to be a lot to come around these light conversations. I trust Bart will do whatever he can in the extra meetings he needs to attend around this because of me. He knows what I go through and how much the accommodation helps.

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Sunday, October 3, 2010

One Month Later

It has been four weeks since I started my second elimination diet which has not been like the first time I did it. I didn't expect it to be the same, but I didn't expect it to be so different either.

In one way I feel better even though I haven't really experienced much of a Migraine reduction yet. At this point last time, I had gone from having a Migraine or headache almost everyday down to about one per week which was just before I started adding back a new food per week. I haven't been this low since then.

After the first month on the ediet this time, I have not seen a reduction in the number of Migraines. However, I feel my mind is a little clearer, my face is not as numb, I am not as nauseous or as dizzy and I actually lasted 3 aisles in the food store before I had to get my forgotten hat. I certainly attribute these improvements to some of the foods I am not currently eating.

Since I have been on the ediet this time, I have been surrounded by many other triggers that I credit for keeping my Migraine levels up. In these four weeks, we have had two weeks of pouring down rain, I have had two hormonal weeks and I am wrestling with many triggers at my son's football games. Big sigh.

Compared to the first time, I am much more aware of other triggers around me as I was in the beginning of my Migraine eduction process then. Last time, I started the ediet at the beginning a January. I don't believe hormones were as big of an issue back then and that January was a dry, non-snowy, non-rainy month. Starting the ediet at the beginning of September this time, has been met with the triggers mentioned above plus some very hot days and smells that you don't get in January. For me, winter probably would have been a better time to start the ediet again, but I really wanted to get started with the whole process again quickly and didn't think anything out.

I will need to do my best to factor all of these extra, unavoidable triggers in when I start adding a new food back this time. I was really hoping to be in a better place than I am right now, but I'm sure I'll be able to figure something out and may even need to retest some of the new foods depending on other triggers that are around on a given week when that food is added.

I am still trying to hold off for another two weeks before adding back any foods, but this past week has started getting a little rough as I am craving other foods. I am very anxious to start adding back and contemplating beginning with basic things on the Thanksgiving menu so I will be ready for that holiday by the time it comes around.

There is so much to learn about Migraines and it can take a little longer for those of us who tend to be a little thickheaded or stubborn. It's also kind of hard to do when we have too many Migraines, but we must start making dents someplace in our trigger identification process.

I believe I have more Migraine triggers now then I did back then; both food and other triggers. I know I have become so much more sensitive to some triggers then I used to be and hope to identify some of these additional triggers soon.

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Sunday, September 26, 2010

New Neurologist is like New Boyfriend

Sometimes I feel like a new neurologist is like a new boyfriend. What I mean by that is unfortunately for them, they have to put up with some of the old baggage we bring with us from our old boyfriends even if it's not in our best interest.

You know how it is, if we extend ourselves out too much or too soon, we might get hurt again. Never mind that we might be hurting ourselves or not finding our true love because we are holding back too much.

This could also be related to if we don't tell our new neurologist everything we should because they may jump to the same wrong conclusion that a prior old neurologist jumped to. This could be hurting us when our new neurologist should have the full facts about us so we can hopefully find that true magic bullet to help our Migraines. The other part of this is if our new neurologist is not going to listen to everything we have to say and jump to the wrong conclusions, isn't it better to find out upfront that they are not the right doctor for us?

Like many people, I have a lot of stress going on from everywhere. I don't talk about stress with my doctors because to me, it is just a part of life. I know that certain times of the year, my stress will be increased. I know that it can be increased at any other time without notice too and don't even think about talking about money.

I had an old neurologist that made it even harder for me to talk about stress today even though I never talked to her about my stress levels. With this old neurologist, she put me on an anti-anxiety medication alone and expected this to take care of my Migraines. She didn't seem to like when I called to say it wasn't helping and I needed something else before our next scheduled appointment. I also provided her with an interim solution which she reluctantly agreed to accept. Sometime later I found out that she was convinced my Migraines were caused by stress and could not understand why the anti-anxiety medication did not help. So you can see one of many reasons she is no longer my doctor.

With my current doctor, I have only casually mentioned stress once and only because my BP was very high for me during one of my visits where I was too stressed out to come up with something else. I have white coat hypertension during the first few appointments with any new doctor where I let them know upfront about it and my current doctor was no exception in the beginning. I have been well past my white coat syndrome with her.

I know I'm going to have to have the stress talk with my current doctor soon. I do believe, in addition to other things, stress is interfering with my Migraines to some extent, but I also believe that stress is an exasperating factor and not a direct trigger. I know when I have the stress talk with my doctor that I am going to have the bigger talk with her that is long overdue, but I need to be mentally ready for the talk. I really like my doctor and she has helped me in many ways, but I am going to have to have that general Is Stress a Trigger or Exasperating Factor talk with her too.

She has mentioned on a number of occasions how stress can be a big trigger especially for her; she is also a Migraineur. I have ignored these comments so far and not subjected her with my opinion or challenged her on that statement yet, but the time is coming that I feel I need to address it. I don't think I'm going to be comfortable talking about my stress with her until I let her know my opinion on stress and am able to talk about it intelligibly. My doctor has listened to me on many of my far fetched ideas in the past. She is smart enough to make up her own mind in many areas. As long as she is open to the idea and doesn't shut it down right away, that is all I can ask and I believe she will do that.

My doctor is also a member of the International Headache Society (IHS). The IHS had moved stress from their trigger list to their list of exacerbating factors a few years ago. I will mention that to her as well as a lot of the points that Teri Robert makes in her MigraineCast on Is Stress a Migraine Trigger which she also has as a transcript of the podcast written out.

I have a lot to cover during my next doctor's visit since so much has gone on since my last appointment. I'm not sure if I'm going to be able to have our stress talk then, but if I want to be fair to my boyfriend, I mean my doctor, no I really mean myself, then I am going to have to have this talk sooner rather than later.

Who knows, if I can open her mind on this one, she may even make a better boyfriend for some of her other patients...

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Saturday, September 25, 2010

Help Your Neurologist be Included in Primary Care Incentives

I have to visit my neurologists every two months. During these visits, my neurologist gives me a mini physical, including a neurological physical, checks my medications to see if they need adjusting or replacing and verifies if I need any additional testing.

In my opinion, my neurologist provides me with a similar primary care that a PCP gives to their patients plus the extra care I need.

Why am I telling you about this and why is this such a big deal?

The recent health care reform act, the Patient Protection and Affordable Care Act (ACA), provides incentives to encourage primary care but didn't include neurologists among the eligible health care providers. As stated above, my neurologist provides me with my primary care. I wouldn't dream of going to anyone else at this point in my life. The fear is that with the exclusion of neurologists in this incentive program could further complicate the lack of Migraine and headache specialists we are already faced with.

How can you help?

Congressmen Michael Burgess (R-Tx) and Russ Carnahan (D-Mo) sent a letter to your US House members on September 21st. You can email your US Representative and ask him or her to sign this letter in support of your neurologist! It's real easy for you if you follow this link to send an email message to your Representatives As Soon As Possible.

You don't even need to know their email address! This automated system will allow you to add a personal message to an email asking your Rep to sign the letter and then will find your Reps email address based on your address. When I filled out my email, it took me about 10 minutes to complete everything.

Please contact your US Representative now!

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Tuesday, September 21, 2010

No More OJ Oops

Sometimes I wonder if I was better off just jumping into the elimination diet or if I should have spent a little more time planning it like I did the first time I did the diet. You see, I normally have to plan everything. This allows me to get my mind in the right state so I will be ready for most things that come my way.

On the other hand, I really didn't want to delay any longer then I needed to after I convinced myself that this was the next option I had to take - again. From this perspective, the sooner I started, the faster I could get through it, but not rush through it.

The first week flew by quickly as there were so many other things going on that I didn't have much time to think about anything. In this case, not being able to think was a good thing. After the first week, I went food shopping. While putting away the groceries and without even thinking, this time not a good thing, I took a sip of some orange juice I just picked up which was definitely not on my diet.

When I do these types of blunders, I try to make the best of it. The good news is that I had a reaction to the orange juice. I view this as good for several reasons and not because it may be a food trigger - that wouldn't be good at all, but because it will help me to stay focused and stay on the diet in a much more determined manner.

The first time I did the elimination diet, orange juice cleared just fine. I'm not ready to rule it out yet as it could be some of the things that were added to the particular OJ I picked up. Hey, I have to keep some type of faith open. I really enjoy some OJ in the morning and I fear this is one of the things that may have been setting me off regularly, but I don't believe it was the only thing if it is a trigger.

This little oops is going to help me stay focused because I don't want to lose any ground that I have already gained while on the diet this time. I believe this cleansing time is a very important part of the diet. After reviewing my chart from the first time I did the diet, I could see I had no change in head pain during the first two weeks and then it started reducing week after week after that.

I've had other challenges this time that I didn't think about or have the last time; partially because I just jumped right into the diet. This is football season which means if I want to see my son play and he is not playing at his home college, then I have to travel to another state and further away. You could say 'big deal'. But, when you are on a very controlled diet where you can't eat out at all yet, it is a big deal. Luckily(?), I couldn't make it to his only away game so far.

Do you know what else is a big deal? Home games. Typically home games mean eating a lunch and dinner away from home. One of the things I loved the most about my son playing football last year is that it gave me the excuse/reason to intrude on him regularly and then we would go out to dinner together after the game. It was our time together as well as a little way of making up for me bombarding into his college life. He loved it too or at least I'll keep telling myself that!

What have I done so far? It's actually worked out pretty well. For home games, I packed my lunch and dinner. I ate my lunch before the game and then dinner right after the game or just before we got to the restaurant. I wanted to make sure I was not hungry at all which is a lot tougher with one of the medications I'm on now where I want to eat all of the time. My son ordered a delicious, non cafeteria food and even a desert while I had my glass of water. Believe me, I am not complaining. It actually worked out great. I liked watching my son enjoy his meal and warm apple pie.

The other good thing about really wanting to stick with the elimination diet? In the two and a half weeks I've been on it, I've lost three and a half pounds so far! Although it's a great side effect and I can afford to lose a lot more, I'm not in this to lose weight. I have to find out if I have more food triggers. I do believe I have new food triggers that passed the elimination diet the last time I did it. I guess I'll find out soon enough. No more slipping up!

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Sunday, September 19, 2010

Which Rat are You?

I was talking with a very interesting character recently who does something in the medical field. I don't know exactly what he does as he was very secretive about many things, but he is some type of a consultant that works with many different types of doctors including doctors who make sure different medical studies that go on are legitimate where all protocols and avenues of a study are followed.

Anyway, we got onto the subject of Migraines which led to many other different conversations. One place he went is that he talked about a rat study that was done on pain.

He said that there was a study done where they took three rats from the same family so the genes would be very similar. The rats were put on a heated surface where they wouldn't be able to leave that surface. I really hope this study was done with more than three rats or I don't know how viable such a small study would be, but then, that was not the point of his story.

Anyway, Rat A hopped many times after the heat was set on - let's say 180 times in a given timeframe to try to evade the heat, Rat B 100 times and Rat C 10 times. Then they gave the three rats an opiod derivative and repeated the test.

Which rat did the opiod affect the most? Which rat cut down their percentage of hops the most? What do you think and why?

The rat that the opiod helped the most was Rat A. It seems that if you are more sensitive to pain, then you are more sensitive to pain medications where it will help relieve your pain better than it may help other types of rats or people. Like I said, this is what this character said, but where it made the most sense to me is that I feel that Rat C explains me.

I am not the type to keep hopping around to avoid the heat or pain and I don't take much pain medication. I went most of my Migraine 'career' not taking any NSAIDs or even knowing that triptans existed. I recently received a synthetic opiod, but didn't find it to be very effective. I am sure I am not taking this pain med as often as I should either.

Which rat are you?

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Wednesday, September 15, 2010

Up and Down Week

This has been such an up and down week. So far, I've been doing pretty good with the elimination diet although you wouldn't be able to tell by the reduction in Migraines yet. I think the first week can be very tough on many levels.

I can tell it is already helping; not by the reduction of Migraines since that hasn't happened as this has been an unavoidable trigger week, but I realized that my face was only numb one day this week. That is a great improvement and something I suspect is from food. Whenever I start craving other foods, I have to focus on my goal. I want less Migraines and if I have more food triggers, I need to find them. For me, this is the best way to find them.

This has also been a fun filled week - both good and not so good. Here is a list of some of the things from this week:

> I was approved for my IFMLA. I have to say, my doctor is really smarter than me especially when it came to filling out the health care certification form. She didn't put down a certain number of days per week or month. She put down an estimated number of episodes per month with up to a specified number of days per episode. I thought that was brilliant. My company's leave department accepted this along with a six month recertification period!

> We were told that they are selling the building I work in. We don't know where we will be moving yet, but we should be moving within the year. I have no guarantees about my light accommodations right now either. This is what makes me the most nervous as it has been the biggest savior to me.

> My desktop at work crashed.

> Someone on our team was carted away by ambulance this week. She's fine and actually came back to work the next day.

> This was an extremely busy short week at work. It seems this week we needed to cram in five days of work into the four days we were there because of the holiday.

> I babysat for two nieces/two nephews at the beginning of this week and then another two nieces at the end of the week. I've gotten into showing up with those silly bands on my wrist and then let them choose whatever ones they want until they are all gone. That seems to start the night off right.

To start cutting back, I decided I would not drive to my son's football game which was played a few states and quite a few hours away. I really don't like missing his games, but I didn't think I should be driving there at that time. He was better with this decision than I was which made it easier.

With the impending move to an unknown building with unknown lighting and other surrounding triggers, I am real happy to have the IFMLA. I keep flashing back to a horrible multiday client visit I had a while back where I was under these lights that were just awful. By the time I left there, I had a multiday mega-Migraine which was tough to beat. I can't go through that everyday.

I am hoping this next week will get a little better. I feel the harder I am trying at work right now, the more I am falling behind. Sometimes I think if I cut back more that I may actually get more done than I am now. I just need to get over a couple of hurdles. I will get through this. I have to...


PS - I was set to post this last Sunday. Can you believe my laptop crashed too?!?!

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Saturday, September 11, 2010

One Lovely Blog Award

Jamie from Chronic Migraine Warrior and Migrainista from Migrainista both thrilled me by nominating my blog for the One Lovely Blog Award. I want to thank Jamie and Migrainista for the nominations. It's hard to think that the everyday life and thoughts of a Migraineur can be thought of as lovely, but I really appreciate the award and for being recognized by these wonderful bloggers.

Here is how the rules work:

> Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.

> Pass the award to 15 other blogs that you’ve newly discovered. (if possible)

> Remember to contact the bloggers to let them know they have been chosen for this award.

I enjoy reading many Migraine and other related blogs. Many have already been nominated. Below are five additional blogs I like to read.

Head Wise

Gypsy Shalunya

Pink Pearl Girl's Migraine World

Sweet Migraines

Mimi's Primrose Lane

Please make a visit to the blogs I've chosen to pass the award on to. They're all great!

Sunday, September 5, 2010

Impulsive eDiet

I've been doing a lot of thinking since my last doctor's visit. I've kept this long term monthly Migraine chart for almost four years. Prior to going to my last doctor's appointment, I was able to identify some seasonal Migraine peaks which I hadn't notice before. Another thing that I observed on this chart is that the number of Migraines I've developed was never as low as it was while I was doing the elimination diet even during my seasonal peak periods. I think I've seen this before, but was able to excuse it away as other things which is probably partially right.

Although I've been pseudo thinking about the elimination diet recently, I haven't been serious enough to try it again. I've always been someone who has to plan out everything I am going to do and definitely something as big as changing my dietary needs to have every detail planned out. That's what I did the first time I completed the elimination diet.

When I did it before, I tried to do everything as thoroughly as possible so I would never have to do it again. Before that, I had never done any type of diet and knew I would never want to do it again. This first time, I planned it down to the date I was going to start it, the Migraine medication I would change back to for it and my daily food menu. I read everything I could find on the internet and even bought a couple of books to read.

Anyway, I did something very atypical of me today. I jumped into the elimination diet again this morning as a spur of the moment thing. I started seriously thinking about it last night. I gave away the books I had originally used and could only do minimal reading online. I am nervous about the medication I am on now as I always want to nibble which is not a good thing while on any type of diet. Being a planner, this is very hard for me to just jump into, but I felt like I needed to put a stake in the ground and just go for it. Exhale. I know I need to do this again and I figured the sooner I started it, the better off I would be.

Using my suspicions and upon reviewing my charts, I finally came to the conclusion that I really have no choice but to find out if I have any additional food triggers. I really don't want to do this, but I have not been able to identify if I have any other food triggers even if I suspected them.

When I did the elimination diet the first time, I found a lot of good triggers. However, I believe I have developed additional food triggers since then. When I did the diet before, I chose one meal for breakfast, one for lunch and one for dinner along with a snack that I could have whenever I felt like munching. I am doing that again this time because I can't remember how I would have changed it up from the last time.

I want to stick with this basic diet for at least six weeks. Of course this is not the best time to do the diet, but there really never is a good time to start. Since I didn't even know until today, I haven't told anyone about it yet which usually gives me the inspiration to keep going. I don't want to deviate from the diet as I really want to figure out if I am missing any other foods or ingredients that I should stay away from. I am hoping it will be easier to add back this time because I know many foods I won't have to add back since I already know they are triggers.

The other thing that keeps running through my head that really shouldn't be is the reaction of two previous doctors I used to go to. I totally don't understand why, but they were both down on the elimination diet. I know it is ludicrous, but this type of ignorance always baffles me into thinking I must be missing something although I really don't think so.

I don't see how I can justify, even to myself, going to a better Migraine doctor than the one I currently go to if I feel there are still things I should be trying to get my Migraines under better control first. I feel that if I were to go to a different Migraine doctor today and he were to ask me about my diet, I would have to say that I don't know if I have additional food triggers. At that point, I think he would tell me to find out. Unfortunately, he would not be able to tell me what my food triggers are since there is no easy test to tell us. That would be real nice!

So I am jumping feet first into another adventure I have not prepared for. Although I have been down this road before, the road is very different than it was the first time I traveled it. I don't really see another choice for me right now, but I know I need to embrace it.

I know it's only day one, but I think I've already endured my first hurdles while food shopping this morning. Ready or not, I've just started it again...

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Saturday, September 4, 2010

Vacation for Migraines

Have you ever taken a vacation to help with your Migraines? Wait, I don't think I asked that question right. Have you ever taken a vacation so you could work on your work from work to try to help with your Migraines?

That's what I did this week. OK, you can put that big "L" on my forehead now. I know it belongs there, but I had to take a week of vacation from work for a few reasons. I have not been able to catch up or even keep up with work so the thought of taking time off was a huge stressor until I realized I could get caught up during my vacation time on an overdue project and a couple of other things that must be done without having the everyday interruptions from email, phone calls and people dropping by with questions or giving me more things to do.

This big project was due in July so it has been hanging over my head for some time. Although it is due in July, I do not get the information I need to start putting everything together until July. There are also other extra things due that month that do not have the same wiggle room that this project has in due date, but the pressure is kept on until it is completed.

These are all in addition to the normal work we have to do too and it is virtually impossible to do during my already normally expanded workday. These projects reoccur annually. I believe this added stress is a big reason for my increased Migraines since it will exasperate the extra heat and weather triggers that come with the summer time.

With the rise in Migraines and symptoms during this time, I am not able to put in extra time at night or during weekends to work on this project either. By the time I get home, I am exhausted. On weekends, I need to physically rest up on one day and take care of home stuff on the other day. I wouldn't be able to function if I didn't do this.

During this vacation week off, I have been able to finish the majority of the project. After I return to work, I will still have about another sixteen hours of work left on it that could not be done during the week since it has to be completed in the office.

I will keep track of this week off to see getting more caught up has helped with my Migraines. I am now contemplating taking a week off in July every year so I can finish the project then, when I can be away from the office so it does not hang over my head as long.

I know I still deserve that "L" on my head, but I also feel like I've given up a lot more for my Migraines than a few vacation days especially if it does help put my head back on straight and allows me to stop being so stifled while I am able to move forward again.

What kind of things have you done that you really should not have had to do in order to help with your Migraines? Did it help?

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Sunday, August 29, 2010

Tinting Helped

A couple of months ago, I wrote about having sun-screening put on my car windows as a way to try to help with my Migraines especially with the summer months coming. Everything seemed to make sense and it was an expense we decided was worth trying.

Every state has different tinting rules and regulations. My state doesn't allow any tinting on the front window or windshield, but you can apply for a medical exemption which is what I did and was approved for. You can tint the back of your car any tint level you want in my state.

I was approved for a 60% visual light transmission (VLT) in the front and also a clear window sun-screening for my front windshield which helped reduce the sun glare and UV rays from passing through. The VLT is a measure of the amount of total visible light that passes through the glass. Keeping my car legal in my state, I had the front tinted according to my approved exemption and decided to have the back tinted at 15% VLT.

I can say that I really like the back having as low of a VLT as I had tinted. The only precautions I must take are when I need to backup at night as it is a little more difficult to see. I try to back in any parking spots whenever I know I will be leaving after dark. I especially like the tinting when the headlights of cars and trucks behind me are shining through the rear window into my rear view mirror. It does not hurt me!

The front, legal tinting has been a little different. If I had my choice, I would want the front, side windows to have a little lower VLT. I think I'd be happier with a 40 or 35 percent and still be able to see comfortably at night or in the rain. Although I do believe the 60% does help, I can still feel lights reflecting off of the side mirrors into my eyes as well as the sun through the windows. As I said, I do think it's helping and am glad I did get this tinting too.

Now my front windshield was approved at a clear tinting and I always questioned how much it was actually helping me if at all. I finally got my answer.

Yes, the clear tint on the windshield was definitely helping! How do I know for sure? My newly tinted windshield developed a spider crack in it. Unfortunately, the clear window screening film didn't stop the spider from spreading and I needed a brand new windshield.

As I was driving my son back to school after a weekend break today, the glare from other cars was very evident as it was shining through the windshield and lighting up the whole interior. My son also commented on how he thought the car was hotter. That was one of the things the tinting people said is that the car would be a little cooler. I can't put another screening on the windshield at this point, but this will be something that I will keep in mind for the future.

Overall, I think having your car windows tinted or sun-screened will help with your Migraine management. I have to say it has helped with mine through the summer months and I believe it would help with the snow glare in the wintertime too.

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