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!


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,

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


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.


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.


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?