Sunday, May 29, 2011

Migraine Sweepstakes for Migraine Research

As the Alliance for Headache Disorders Advocacy is headed to Capitol Hill this week to talk with our Senators and members of the House about the need for better Migraine and headache treatment, we can have a little fun while raising money for Migraine research.

We all should know how desperately we need more funds for just the basic research into Migraine disease. The Migraine Research Foundation (MRF) is holding its second Door to the Cure Sweepstakes where the proceeds will go directly to their research program investigating the causes and better treatments for Migraine disease.

We must put fundraising and whatever we can do to help into our own hands to help ourselves and/or our loved ones! This sweepstakes gives us the perfect opportunity to donate toward Migraine research and have the chance to win some great prizes.

Win prizes and support Migraine research! How great does that sound? The prizes go for just $10 or $25 a chance. You can buy as many chances as you like and as many tickets for each prize that you would like to try to win.

Check out the MRF Sweepstakes page for all of the great prizes and to buy some tickets. The sweepstakes closes at 5pm Eastern Daylight Time on June 9, 2011.

Let’s hope that the sweepstakes and Headache on the Hill are both Win-Win events. Good luck!


Saturday, May 28, 2011

Hats, Hat Policies, Hats Galore, Another Reasonable Work Accommodation

I feel like it took a great experience and a slap in the face to wake me up. I've been on a tear ever since that happened. Not only did I finally find the type of hat I'd been looking for and ordered it, but I ordered FIVE hats in that first order. I knew all I needed to do was to find the right style and I would be able to start moving forward.

Well, I think I may have gone a little overboard. No, I'm not even talking about the number of hats I ordered. No way! I've started wearing these hats everywhere. Actually, the first place I wore it to was mass. I figured I had nothing to lose. I never felt right about wearing my hats in church because my old hats definitely didn't belong in church, at work or any place I would consider fancy (it doesn't take much for me to consider something fancy). I had the perfect opportunity. It was pouring down rain before mass. If I was ever going to wear it, this would be the time.

I always play these tricks or games with myself. I told me that I would put the hat on to get to the church and then just forget to take it off. This was exactly what I did. I felt self-conscious throughout the whole mass, but didn't dare take off my hat because I would have uncontrollable hat hair by that point especially with the rain going on outside. I only had one thing left to do which was already on my to do list. I finally sent my pastor the email to see if there was anything he could do to help with my lighting sensitivity.

In my email, I had mentioned an alternative someone here had brought up; turning off one of the fixtures to create a darker zone which could be used for other people with light sensitivities too. I had thrown in some other things like a hat and mentioned how no one wears a hat to church any longer and how priests and others should understand that some people may need to wear hats for medical reasons. I also asked for any ideas or suggestions he might have.

I pretty much received back the response that I expected. They can't do anything about the lights, but he liked my hat idea and went into how women always wore hats to church before some big religious council meeting that happened in the ‘60s which changed the church worldwide. He also said that one of the saints wrote a letter that a woman should have her head covered during the Eucharistic assembly. I'm for that as long as it shadows the lights and I can wear the style of hat I like which is not a fancy hat that you would see at a royal wedding or even on Easter Sunday.

Next was getting past my family. May was the perfect month with four different first communions along with some fancy parties to attend after. I entered each party with a different cool hat on. In my typical fashion, I didn't say anything to anyone and just showed up wearing these hats. I got many positive comments and whenever someone would ask me about my hat, they would inevitably answer their own question. They would say something about the cool hat and surmise that I was just being fashionable or a trendsetter. Hahaha! If you really know me, you would burst out laughing just like I was on the inside. Me, fashionable? Don’t make me laugh again.

It wasn't until the last party when someone asked me how my 'headaches' were doing that I ended up in an explanation about how my experimentations showed that hats worked better for me than sunglasses because when I wore sunglasses, the light would get in through the top of the frames which was like not having any protection at all.

All of a sudden I heard a big 'AHA’ from the side. My mom was listening to everything. She continued with 'that's why you've been wearing these hats'! My sister figured it out as we were leaving the second party and commented on how she thought it was cool. I guess I like to have fun wherever I can find it and run these little experiments to amuse myself as I ease into some of these changes.

I've gotten many other comments on my hats and only received a couple of negative ones. These only came from people who should know better. No worries, they are the ones who looked silly, not me. The best comment was when I wore one of these hats to the supermarket instead of my normal hat. Out of nowhere and completely unexpected, a stranger walking by me said 'cute hat'. Wow, that was really nice and something I can and did use to draw more strength from.

Ok, I told you I was on a roll and I definitely didn't stop there; with church and fancier places. My work has a policy about not wearing hats while at work. I work in a medium sized division for a huge corporation and understand why they have such a hat policy. I currently have a great light accommodation at work where I have filtering light sleeves on the bulbs in my office. However, there are many times I don't feel like I can leave my office or I will face the stabbing daggers of the fluorescent lights throughout the building. Honestly, I can't stay out on my team's aisle for very long or I feel like I start to transform into someone else or maybe it’s that I want to change into somebody else.

Now I have my cooler hats and I am getting more comfortable with wearing them in different scenarios. When I picked out the styles I did, I figured I could wear them at work if I really, really had to wear a hat so my next step was getting past our company policy.

I'd already started preparing for something extra and had gotten a note from my neurologist and a neuro-ophthalmologist. I figured two notes would be better than one, but I really think one note would have been suffice. I had already talked to our HR director and she knew that I had some doctor notes, but I needed more than what we had previously spoke about.

She had mentioned that the hat wouldn't be a problem in our building, but if I was ever in a meeting with one of the big wigs (BW), that I should probably remove it. I was compelled to stop her to let her know that I felt I should be able to keep wearing my hat no matter who was in the room. She thought about it for a moment and decided she was not the right person who could make the decision I truly needed. I ended up going to our corporate medical department and finally got a ruling from the VP doctor who is a direct report to the top BW in our company.

As a reasonable work accommodation for my light sensitivity, I have been approved to wear a hat while at work as long as my manager is aware that I may have to wear a hat. My manager is great with all of this and has told me on many occasions that he would not have a problem with it. He actually has less of a problem with it than I do (from a professional perspective) just like I would not have a problem if one of my people needed to wear a hat for medical reasons.

I think I needed to go this official route as it will take any argument away from anyone who might protest my hat (there are some who would do that) as I now have the approval from our corporate office. I know my manager would always stick up for me, but this would help us if someone higher up the chain were to say something. It will also cover me for when I go away on a work trip next month where I am/was terrified of the lighting situation because I remember what it was like last year. Luckily, I was able to divert the lights then by getting to the room early enough to 'fix' the lights before anyone would notice anything. I'm not sure I'd be able to do that again this year, but I have a more reliable method now; my hat.

Since I have been wearing my stylish hats more and even before I received the approval from work, I ordered three more hats! At this point, I have to stay committed to my hats which are actually another way of staying committed to my health. I don't like turning stupid if it can be prevented and am hoping my hats will be a good preventative measure for me no matter where I need to go.

I have definitely had a busy month since I realized how I forget my hat too often, how I needed to stop forgetting it and developed a theory on why I kept being so absentminded with it. I am hopeful that I have addressed everything I need to around this issue now and will only have more new, stylish and trendy hats in my future instead of stupid moments that could have been avoided.

I guess I tend to go a little overboard when I finally get slapped around enough to get motivated, but I am now on a better road than I was just one month ago. Do you tend to go too far when you run into things like this too?


Sunday, May 22, 2011

Doctor's Office

I've been doing a lot of thinking again about doctors and doctor offices and trying to decide what is the best route for me to take. It is a tough decision that I keep going back and forth on which way I should go. Usually when I decide to go down one route, something happens and I will flip flop.

My current doctor has always gotten high ratings on those doctor rating sites while her office didn't fare so well, but I never experienced any issue or even an inkling of an issue with the office - until my last visit. At this point, I don't need anything else from my doctor or her office, but I will have a funny intermittent FMLA approval for the next six months.

My first iFMLA was awesome! I had a six month recertification period which meant my doctor did not need to fill out another FMLA form until the six months was up. I was also approved for two to three Migraines per month that could last for up to three days each episode and I could have a covered doctor visit at least every two months. FMLA has annual hours limitations, but it's nice to know I had this time to take during a month if I needed it.

I was caught off guard with my second iFMLA when I didn’t check right away to see how much time I had been approved for before the iFMLA needed to recertified. As it turned out, it was only for two months this time. I found this out when I received a letter from my leaves department telling me my time was almost up and that my doctor would need to fill out a new recertification form.

After talking to my leaves department, they told me that the forms from the first two applications were filled out identically and that they typically only certify iFMLA applications for two month certification periods, but can certify it for a maximum of six months if the doctor writes something to that affect on the form. They also let me know that our form had changed recently and I should have my doctor complete the new form. I didn’t see a problem with either request as my doctor and her office have always been most accommodating.

I talked to my doctor's office and faxed them the new form along with the instructions I had just talked to them about the six month notation. There didn't seem like there would be any problems. I still had the fullest confidence in my doctor's office as they had never given me any reason not to trust them.

A week had passed and then I was away for another week before having a doctor's appointment during the week of my return. I decided to call my leaves department the day before my appointment to make sure everything was in order and approved as expected. Oh boy. They never received anything from my doctor which also meant I had a gap in my iFMLA coverage as I was not currently covered!

Of course when I talked about this during the visit with my doctor the next day, she was very apologetic but also felt the need to show me that she, personally, did not receive the fax [from her office staff]. This also made me feel like she lacks confidence in her own staff. I gave her a copy of the new form I brought and explained everything I needed along with asking to have everything faxed to me. No problem.

I was pleasantly surprised to receive the fax shortly after arriving back to work. Oh boy again. A) it was an actual copy of the old application that was filled in before along with a prior signature and date B) it was not on the new form C) it did not include the verbiage to have the recertification period good for six months.

After taking a deep breath, I called the doctor's office to explain my conundrum. Their first question to me threw me completely for a loop. I was asked, are you ready for this? I was asked 'what is FMLA'. I was dumbfounded. My expectation is that a doctor’s office would know some basic terminology such as the Family Medical Leave Act especially since there are about six neurologists in this office treating all kinds of neurological conditions which, I’m sure, would require a medical leave. Maybe I am a little off base on my presumptions.

After we got that straightened out, then we needed to sort through the updated form issue. Long story short, I was told the form had changed, it was complicated and that I would be charged for this office staff person to fill the form out. Don’t get me wrong, I’ve always been prepared to pay to have the FMLA form filled out even though I had not been charged previously. I was between a rock and a hard place while talking to her on the phone so I instructed her to complete the new form along with the note about the recertification period.

When all was said and done, my iFMLA was approved for a recertification period of six months, but it has a very bizarre configuration of Migraines that I am covered for during these six months. For this period, I am approved for three Migraines a week, but only one day per episode. Hmmm. I guess I can’t have a two day Migraine? It might even look funny if I have two separate Migraines two days in a row?

I’m being kind of facetious here as I know if I needed to go outside of these approved parameters that my leaves department would get in touch with my doctor who, ut oh, would probably need to fill out another form. The other thing about this approval? My doctor visits are now a minimum of every three months. It may not matter much right now, but typically I will go every two to three months depending on what happens during each visit.

Here are my conclusions about this experience with having the form filled out:
> if my doctor fills out the form, I won’t get charged
> if my doctor fills out the form, I will get approved for an awesome iFMLA
> if the faxed form gets lost and gets completed late leaving a gap in my iFMLA, I will get charged
> if the office staff fills out the form, I will get charged
> if the form is filled out incorrectly, I will get charged
> if I stay on top of the office staff to include the notation needed on the form, I will get charged
> if the office staff fills out the form, I will get unpredictable results in my iFMLA approval

Seriously, I need to talk to my doctor about not paying for the filling out of the form this time. However, I really want to circumvent the office and go right to my doctor as I don’t think she will have a problem waiving this fee. But on the other hand, if I need to spell all of this out to the office staff, so be it. Oh wait, they don't even know what FMLA is. There were just too many errors with the form and other things that I don’t think I should have to pay for it this time.

There was a slight misunderstanding before I left her office before this happened and all of this has me rethinking how important the office staff is to the whole relationship you have with your doctor. For me, the big things are my iFMLA, getting appointments when I need them and general communications. Two big reasons I did not pursue a true Migraine doctor a few of months ago, who is only a couple of hours away from my home, is the amount of time I heard it would take for his office to fill out the iFMLA paperwork, how hard it was to get in touch with the office and some other miscellaneous items. As always, I am currently reevaluating everything again to try to determine what I need to do.

Onward and upward. I’ll make it work out the right way for me. I have my list of questions for the true Migraine doctor's office - protocol type of stuff. I was recently able to ask some of his patients questions about his office which was helpful and gave me more to think about his office as well. Right now, I don't know what I have to lose and can see how much I have to gain.


Saturday, May 14, 2011

Glaring Misses

No matter how much I think I know my Migraines, sometimes I will get blindsided by something that is right in front of me that I just did not see. Too late to do anything about it, I realized I left my sunglasses and hat in my car. I've gone through this enough times that I should know better. I'm just hoping I've finally learned from this last experience, but honestly, I am getting so forgetful lately that it's really becoming a big concern of mine.

The first thing I noticed as I walked into the meeting room was that all of the fluorescent lights were turned out. Yippee! That was all of the distraction I needed to not detect another big issue I would have even though I sat with my back to the windows. Subconsciously, I may have been hoping that it wouldn't be that bad and that maybe, finally, I would be almost normal again where these silly things would no longer be an issue for me. Sigh. Maybe someday, but I also knew I had a busy week with little sleep so my resistance would already be low.

Although the windows were to my back, I was doing a lot of facing to the right in the room which allowed too much glare from the windows to have access to me. It was early into the meeting when my aura came on like a thick shade being rolled down a window. This is when my forgotten hat finally dawned on me!

From my past experimentations, I don't think the sunglasses would have worked as well as a hat because, for me, the sun glare would have gotten in through the side, but a hat could have been positioned to block the glare. However, it didn't really matter what past experimentations may have shown because the bottom line was that I did not have my hat with me. I get so frustrated at myself when I do these boneheaded moves.

Do you want to hear the irony of this situation? As this was going down, there was a Migraine doctor talking about the importance of taking your triptans early since this is the time when they would work best. My dilemma? I was having an argument with myself about if I really needed to take a triptan (I was pushing limits), but I had also just changed purses and could not remember which pocket I put my meds into! I knew I put all of my meds in one area where I would easily remember and could get to them readily. Oh boy. Another absentminded move on my part.

This whole experience really got me to thinking about different things on many different levels.

*Sometimes when I get a Migraine, I can either talk like a chatterbox or hardly at all. I'm sure some of my reaction depends on whatever is going on in my brain at the time, but other times I think I get quiet if I find I might start tripping over some of my words. I don't know that others will always notice this, but if I can feel it coming on, I think I will avoid talking a lot so I don't sound so foolish. I have found that lately I am stammering a lot more which is very frustrating and probably makes me stammer even more.

*I wear my current hat all of the time in my car, food shopping and places like that. However, I keep forgetting to take it in other places where I should be wearing it too. I like the hat I currently have and it has a special meaning for me, but I know I need another style hat I can use in other places and have been searching for another hat for some time. One of the other Migraineurs in the meeting was carrying and wearing her hat about. I really liked her hat and it was the style I had been looking for; only I didn't really know it until I saw it which also looked really good on her. Since the meeting, I looked through the stores again and still couldn't find a similar type of a hat so I ended up hitting the internet. I finally found a couple of hats that I just ordered. I know I have to wear my hat more often and I have to be comfortable with my hat too, but I need to stop forgetting them. I am hoping with more than one hat, the likelihood of forgetting one will go down.

*I had a doctor's appointment a few days after this meeting. This is when I found out that my doctor had done her fellowship under the doctor that spoke at the meeting. Although I wasn't planning on changing any medications during this visit because of my pending endocrinologist visit, I had a lot to go over with her and now I have even more to talk to her around her office staff which I still need to sort through for myself first.

*I need to get my Migraines and health in order so I can regain better control over myself. I may not be able to regurgitate everything I need to during a Migraine, but I think part of that is the stammering issue so I will cut myself short without even noticing it and I found it surprising that I was able to remember a lot of what happened during the meeting afterward. I need to get control over this area too as this is what scares me while working with Migraine.

*I also realized that although I may not physically miss some of the events I have planned, I do kind of mentally miss some of these events I am 'present' for. There has to be a better way!

I still have a way to go and hope I don't need to learn any of these lessons again. I mean, how many times can I keep repeating the same boneheaded moves? All of this nonsense just has to stop!


Saturday, May 7, 2011

A Puppet and a Swan

Have you ever been around other chronic Migraineurs or people who really get it? I've been around people with Migraine, but never realized how different it is to be around other chronic Migraineurs until last weekend. I have to say, it's really weird to be around not only one person, but a bunch of people that truly understand everything we go through. What's even weirder is that we don't even necessarily have to express what we are going through; they know.

I recently had the honor of being around a group of other people who, unfortunately, personally know Migraines better than anyone I have ever met; actually even way better than I do. It was kind of weird meeting everyone. Although I had never met any of them before, I had 'known' them for a long time.

First, I have to stop here a minute to confess that I still blog anonymously so most of the people there only knew me by my blog name. I felt pseudo embarrassed going up to these other grown women and saying, "Hi, I'm Puppet." I got over it quickly, with a little more color in my face, a chuckle and in reality, I am Puppet. I still love my Puppet name and wouldn't want to change it as I still feel that Migraine is the puppeteer that controls too many aspects of my life.

We were going to have dinner together at a local restaurant which was only a couple of blocks away from the hotel. The weather was nice so we walked there together and made it in one piece! I think it got a little scary after the restaurant door opened - it looked like it was standing room only and all of this loud music came pouring out into the streets. It really wasn't too bad because we had reservations and didn't need to wait too long before being seated. Thank goodness our table was upstairs in a faraway corner of the restaurant. It was a real quiet, pleasant atmosphere.

Not everyone there has Migraine food triggers, but it was interesting to see how everyone needed to negotiate dinner given our little idiosyncrasies either because of different triggers or other health issues. Because of my own food triggers and knowing how long it takes me to study any menu, I actually started analyzing everything I could order way before I got to town by pulling up the menu on-line. This really allowed me to settle in on the best (and only) item for me to order at the restaurant without wasting everyone else’s time.

In the beginning of learning about my food triggers, it definitely took me some time to accept them and sometimes something even happens today where it will dawn on me, all over again, how far I have really come with my food trigger acceptance. The problem with food issues are that they can seem so personal - where you almost take it like it is a personal front 'against' you. In reality, you are much better off just avoiding any foods that are not good for you or you will most likely pay for it.

This dinner was really unlike any other dinner I have ever been to before. Having dinner with people who know more about Migraines than I do made managing through my own triggers so much easier than normal. Yes, I have gone to a fancy Italian restaurant with some friend’s right after I started my second elimination diet where all I had was a glass of water for dinner, but I didn't need any special willpower to make it through this dinner. This was different because everyone there would understand anything Migraine related and no one there needed to go into a big long dissertation on the reasoning behind any decisions we needed to make.

I already knew that the only thing I would have was a glass of water and an entree which would have to be special ordered as to not include any of my big triggers. I basically kept quiet when they asked about ordering the appetizers because I knew I wouldn't be able to have any and I wanted everyone to get whatever they enjoyed without me being a downer. We ended up getting two big platters of antipasto misto; one of which was placed face level in front of me.

It wasn't until a brief exchange with the person next to me that it dawned on me that I didn't need to go into any depth as to why I wasn't eating the appetizer. She asked if I was going to have any. All I needed to say was that it was all a trigger. Her response? Would you like some bread instead? The bread was great and it was an alternate way of participating with the appetizers. Unfortunately, she would have loved to have had some bread, but couldn't because of other food restrictions.

I think you can start to see how interesting the dinner was with all of the give and take that needed to take place, but best of all, no one felt out of place - at least I hope not. Honestly, I felt it was great and that it ended up rejuvenating my strength. I don't feel like such an odd duck any longer; I was more like a swan among many other precious swans!

What kind of substitutions do you need to make for your Migraines or other health issues? What kind of challenges do you face when among others because of your Migraines?


Sunday, May 1, 2011

Knee Pad and other Car Toolbox Items

How many different toolboxes do you have? I feel that we need different toolboxes depending on where we are.

I think most of us have heard of the Migraine toolbox we use at home. It's also useful if we have a different toolbox when we are at work because this toolbox would probably need some different items than the one at home contains. I had asked a question a while back on MyMigraineConnection (MMC) about what tools other people have in their work toolbox after posting here about a day I could not miss at work.

One more area I feel we could use another toolbox and sometimes it may be more of a preventive toolbox, is in our cars. I found myself pulling out one of my old tools when I had a long drive this week.

I left the hotel early in the morning and drove Southwest. You can only imagine where the sun was during most of this trip. You probably guessed it, beaming through the drivers side window. Not only that, but the sun managed to position itself between the end of my window visor and the door frame.

Luckily for me, the very first leg of my week long trip, was to bring my son back to college. You're probably wondering why this was a good thing. As usual, when I bring my son back to school, I bring back all of his clean clothes and enough food to feed the football team; or at least the ones he rooms with. This meant that I needed to clean out my trunk. It also meant I found one of the Migraine tools I used to use when I drove a little more so I threw it in the back seat for my trip - just in case.

As I got tired of trying to position myself so the sun wouldn't keep hitting me from the side, I suddenly remembered my knee pad! It fit PERFECTLY over the end of the visor to complete that gap to the door frame. The sun was never able to infiltrate my knee pad for the rest of my trip. Yea!

I have built up a few tools in my "car toolbox" that I wouldn't do without and should ALWAYS keep accessible - not locked in my truck. I was lucky I bumped into this tool BEFORE my trip. It would not have been very pleasant without it. From where the sun was coming through the side window, sunglasses would not help and a hat's visor would block the whole view of my left side. The knee pad blocked everything I needed it to and I could still see out the drivers side window as well as it still rolled up and down as needed.

I first asked the question What alterations/accommodations have you made to your car for your Migraines on MMC while offering one tool I used for my windshield and then added on my knee pad idea at the end of the comments I received about two months later.

The first response I received from this post is what started me down the path of researching and ultimately having my car windows legally tinted. I have posted three times on the tinting of my car. The first time, To Tint or Not to Tint, was when I was trying to find out if anyone else had tinted their windows for their Migraines and to share some of the preliminary research I had found.

My second posting was because I couldn't believe how quickly my state medical exemption was approved and I was able to add some of the additional research facts I found along with a visual of a spectrum of different tinting levels. The third posting was a little less fortunate. Even though I could tell the sun-screening on my windshield had helped, I could only tell this after my windshield broke and needed to be replaced. I did not have this second windshield sun-screened which is why I could tell it had helped immediately after I drove with the new windshield.

There were a few ideas that other Migraineurs shared that could be added into our car toolboxes which I would like to pass on to you. Some of these you may not want to try while driving while others are perfect for driving:

> grey plastic pieces that adhere to the side windows and can be removed at night
> dark sunglasses
> double visor on drivers side - regular visor pulls down onto windshield with a second plastic front visor that pulls out and extends to the drivers side window which also blocks the front corner
> firm pillow for neck support
> small blanket and/or socks to keep warm
> large flannel pillowcase to cover eyes
> keep car scent/smoke free
> bottled water
> small towel rolled up behind rearview mirror which blocks gap between visors in front windshield
> knee pad
> tinting car windows - not necessarily a toolbox item; more of a preventative

Do you have a car toolbox? If so, what items do you keep in it? If not yet, what items should you put into it?