Military Migraine

We are having an everything party mixed into one for my oldest niece tomorrow. She will be going away for six months and wanted a big shindig for everything she will be missing during this time including our family reunion, her 21st birthday, Halloween, Thanksgiving and Christmas. I'm sure it will be a lot of fun where we will even throw in the 4th of July since this is the date of her party. I know there will be fireworks anyway!

Yes, we will have a big BBQ, turkey with all of the fixings, a Christmas tree, a birthday cake and all sorts of presents for her. She is joining the National Guard and will be in training for these six months.

I am proud of her, but also get a little worried about her because she has been diagnosed with Migraines since she was in kindergarten. She seems to know some of the things she needs to avoid so she does not get as many Migraine attacks which is very important. She has never been on any type of preventative.

Does anyone have any helpful hints for someone in the military for when they get a Migraine? I'd love to pass on anything I can to her to at least make that part of her experience easier for her.


As a follow up to Support for Migraine - Who's Responsible for the Disparity?, as soon as I sent my father the information on the AHDA automated alerts, he signed up to receive the alerts for himself. I have the full confidence that he will be an active participant from now on and will be sending out emails to his elected officials with our next alert especially since he has been actively involved with his representative and recently received approval for an American Legion request he submitted to them where he is now on a first name basis with his rep.

I will be talking to many other family members tomorrow so we'll see how successful I am with them and if they'll follow suit with my father. We are also scheduled to have our real family reunion in a couple of weeks. Last time, we had about 93 family members attend so tomorrow could be like a practice run for me for when we have this bigger family party.

We need to do what we can to be heard. The more people that speak out, the better it will be for us. Each email sent to an elected official represents about 100 people. We need to help ourselves and be heard.

.

Support for Migraine - Who's Responsible for the Disparity?

I recently took a long driving trip with my parents where we were able to talk about many things including Migraines. I asked my father about the action alerts I have forwarded to him and quoted many of the statistics mentioned in the article I have reblogged below about the extremely low percentage of Migraineurs who received the alerts that actually acted upon it.

An action alert is basically a call to action, times when the Alliance for Headache Disorders Advocacy (AHDA) needs people to write to their Senators and members of the House, asking them to support requests that the AHDA advocates have made of them in person or other issues that have come up.

When these alerts go out, we really need to help ourselves or the people we care about by taking the 10 minutes or less it takes to respond to these alerts. It really is important that our politicians start hearing from their constituents so we can start getting the help we need for Migraines. You don't even need to know who represents you in the Senate or House or their email addresses. It's truly that easy.

Yes, my father did vaguely remember receiving that email from me and only now kept asking me to resend this information so he can take the proper action the next time an alert goes out. He not only has me as a Migraineur, but he has many grandchildren, nieces, great nieces and others that need help with this disease.

This interaction with my parents and other recent Migraine dealings really has me thinking that I need to take a different approach with my friends and family who always say they want to help. This is how I need their help the most as it will also help many of my friends and family who also have Migraine disease.

Do you receive these action alerts? Did you act upon the alert after you received it?

We need to help ourselves. One way I like to look at this is that I have received invaluable help from other Migraineurs and this is an easy way I can give so much back, to pay it forward, for what I have received from them. If you have not done so already, please signup to receive an AHDA alert and act upon it when you receive the alert.

Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.

via www.puttingourheadstogether.com

.

Last Trip; New Trip

I had everything planned and packed for my trip. I’d probably never been as Migraine prepared for a trip as I was before this one.

However, the one thing I was not ready for was for my unwanted buddy, Migraine, to travel along with me. I had to be at work for a couple of hours before leaving for the airport on Monday. Luckily I had most of my things together and did not need to think too much while I was there.

The worst part was after I got to the airport. I had a hard time remembering things and needed to keep searching and re-searching for the same things over. I think I lost and found my ID at least three times. I wouldn’t have gotten very far without that. I only lost my ticket twice, but I’m not sure if that’s any better though. You know it’s not good when you start annoying yourself - it's like you get impatient waiting for yourself to finally get with it and get something right.

My forgetfulness didn’t stop there. Even though all the way through the x-ray line I kept trying to remind myself not to forget to take it out, I still didn’t take my clear plastic bag of liquids out and only remembered after my bag was already on the conveyor belt. They did take an extra-long look at my baggage, but it finally went through clean. Afterward, I heard of someone else who did the same thing only they had one of their liquids confiscated for being over the liquid limit.

The weirdest part of the airplane ride is that it actually aborted my Migraine. I've heard of flying triggering a Migraine, but I never thought about it aborting one. By the end of the flight, my roaring Migraine was gone! I really needed that.

I had called the hotel about a month in advance of my stay to let them know about my sensitivity to CFL light bulbs and they told me they would take care of everything. Upon checking into the hotel, I didn't mention anything about the accommodation and found myself very pleasantly surprised when I walked into the hotel room. All of the light bulbs were switched over to the incandescent bulbs. I never had to worry about which light I turned on as they all worked out well. After I returned home, I sent the hotel a note about the wonderful engineer I spoke to who took care of everything.

My trip consisted of two meetings. The first meeting was for two days in the same room while the second meeting was going to be held in a different room. When my boss, Bart, and I got to the room the first day, he stopped to talk to some folks while I picked out my seat. You got it; I chose my seat based on the lighting.

I couldn’t believe the lights in the room. There were spot lights along the front and back walls of the room with the rest of the lights turned out. The tables were setup in a U shape with the opening at the front. I selected a seat where my back was to the windows and the front was to my right. The lighting was really perfect. Although I had an extra seat next to me, Bart sat along the back; underneath the back spotlights. There was still a seat next to him when he made a playful comment about my sitting so far away from him. I smiled, but stayed put.

During the first break, I mentioned to Bart that I chose my seat because of the lighting. He agreed that I had the best seat in the room for me. The next day, Bart had an important call he needed to make so we arrived very early. He went to a separate room while I went to our meeting room.

There was breakfast for us outside of the room and as I was grabbing a little something, the person who set everything up went into the room and turned on ALL of the lights. That definitely would not have worked so as soon as he was gone, I fixed the lights to the same way they were the day before. Awesome! It can be so advantageous getting to rooms first so we can set the lights. (hehehe)

After the last presentation of the day, someone ended up turning on ALL of the lights while additional questions were asked and the wrap up for the two day meeting was made. My hand was ready to pull out my hat just as the meeting ended.

We arrived relatively early the next day for the next meeting. There were some people from the first meeting and some new people who were going to be with us. We were in a different meeting room with different lights. The lights in this room were covered and I wasn't sure if I would be able to last the six hours we were expected to be in there. The facilitator was also there early so I went up to her to let her know that I have a sensitivity to the lights and may need to wear a hat. She said she appreciated me coming up to her to let her know.

I kept gaging myself throughout the day as to whether or not I should put my hat on. I think we took enough breaks and my seat was good enough where I didn't need it although my hand was on it several times. I would also evaluate myself by how participatory I was during the meeting. Bart was seated next to me this time and knew I may put my hat on at any time during our trip.

I did wear my hats at the airport and was glad I never needed to wear them during the meetings. I was prepared to standout by wearing my hat if that was what I needed to do for my health. I also realized afterward that another reason I was glad I didn’t need to put it on is because I strongly believe that one of the people in that room fired of one of his employees because of her Migraines. He does not know I have Migraines and I believe I would get more defensive than I would want to be while around him if he knew. I still need to work with him.

Can you believe I have my next trip planned already? It was not scheduled until yesterday and will be a long drive that I could not refuse. My mother asked me to drive my father and her to Pittsburgh for a consultation which will probably end up in back surgery for him while we are there. I will be leaving right after the doctor appointment I’ve been waiting for for three months. From my appointment, I have to drive two hours to my parents’ house and then another six hours to Pittsburgh. It will be a long day. It better be a good day.

In one way, I am glad this trip is so close to my last one as I have all of my light modifications ready and fresh in my mind.

My hats are packed and will definitely be used as I’m sure I know what to expect in the lighting department at the hospital. I am very glad that I have all of my lighting work a rounds worked out to help me make it through this impromptu trip.

.

Ready for Next Trip

It has been a busy month. I guess I got that kick in the butt I really needed, and do appreciate, to finally get me moving again. Along with my hat escapades, I've been busy getting ready for my next business trip.

I have already taken a few precautionary steps around the Compact Fluorescent Light bulbs (CFLs) and the hotel room I'll be staying at. I will be flying to my business trip this time. After the last trip, I joked about packing some regular light bulbs in my bag as a way of making sure everything was good for me and another way of me handling things for myself.

One thing I have done for this trip is I found a rechargeable booklight which doubles as a lamp. It has six small LED bulbs and will clip onto a book. It also comes with a small stand that the booklight can be placed into where it is charged. While sitting in the charger, the booklight works like a lamp and actually lights up the room pretty well. I will also have a miniature LED flashlight which does a good job of lighting up the room too. Both the lamp and flashlight are very compact making them easy to travel with.

I have called the hotel to see ask about the light bulbs they use in their rooms. Of course they are using the CFLs. The front desk switched me to their Director of Engineering. He was very pleasant to talk with and said it would not be a problem to change the light bulbs in my room before I arrived. He also mentioned that he would put a note in my reservation and make the front desk manager aware of the accommodation I need.

Another precautionary measure I started doing is that I always keep shades in my purse now. Even though hats typically work better for me, this is a way I will always have some type of protection for my eyes with me and there are times when I need my shades when I am outside of my car.

I am still very nervous about the meeting rooms during my trip. I have my hats packed and even talked to my boss about how I may need to wear them during these meetings. Some of the people in this multiple day meeting will be at my boss' level and higher. I know I will be in a totally uncontrollable lighting environment and I don't want to get caught sitting there like a deer staring at the headlights, unable to think or speak because I am not doing everything I should be doing to take care of my health. I just want to do my job and I don't want my Migraines to keep getting in my way!

My hat can help prevent some of this nonsense, but I also have to be extra careful while I am on my trip because light is not the only Migraine trigger I have to watch out for. I know I will be surrounded by many other avoidable and unavoidable triggers, but even the avoidable triggers will be much tougher to stay away from since I am not home.

When I am home, I have safe foods that are not safe when I am away because the foods are prepared with safe ingredients when I am at home that are not used to prepare the same foods when I am out. This is just one of the extra triggers I have to be cautious of while on this trip.

Sometimes it's hard to work in corporate America, but I am grateful my company has been working with me with my difficulties because of this disease. I know what I need to do while I am on this trip and have tried to account for the challenges of being away from my safe environment. Can you think of anything else I should look out for or that might help with my trip?

.

Facebook Friends Friends

I am not a big facebooker, but I do have an account. My friends are mostly family members along with some friends, some moms of my boys friends and some of my friends kids. This list mostly grows as my nieces and nephews get old enough to have an account of their own. It's really neat to see them grow up and come into their own personalities; especially watching how they interact with their friends and each other.

I got so freaked out yesterday as I was looking at a posting on my News Feed page. It was a very innocent post that one of my friend’s daughter made. I really adore this girl, but one of the responses she received piqued my curiosity so I dug into it a little deeper. I ended up going into this other kid's profile and looking at her friends list. No, I'm not a stalker, I was just getting this very bad feeling and I had to investigate it as far as I could take it.

You're not going to believe this. The friend of my friends daughter is the daughter of my first neurologist! Can I throw up now? I still get the heebie geebies whenever I think about this doctor or even drive by her office. Unfortunately, her office is in town, across the street from one of the churches I have been frequenting and right next door to a place where one of my brothers likes to meet me sometimes. (He doesn't know how I feel about next door.)

I didn't know much about Migraines when I first started going to see her and she was no help in educating me at all about Migraines!! In many ways, I feel like I wouldn't be where I am today if she wasn't as incompetent as she was because when I get angry, I get busy. There were two incidents that stick out the most in my mind when I think of her, although there were many other things that occurred that I will never forget either.

The first thing that makes me shiver is when I think about a new medication she had given to me. I let enough time pass to determine that it was not working and my Migraines were actually getting worse. I tend not to want to make waves (hehe), but I ended up calling her office because I couldn't take it any longer. While talking to her, I could tell something was very off and it was like she just didn't believe me. This is something that will set me off very easily, but I was able to keep relatively calm and she reluctantly agreed to some other alternative I pulled out of my hat because she wasn't going to do anything to help me until my next visit. Really? Yes, really. Clonazepam was not the right drug to help me with my Migraines.

After getting a little more education and becoming a little proactive for myself, I thought that it would be good to try the elimination diet especially since nothing else was helping. Still trying to be good and only follow doctor orders, I decided I would start it right after talking to my doctor. I couldn't believe it when she didn't think it would be worth my while to try the diet! Luckily, I had put a lot of work into my plan, done a lot of research, had already laid a lot of the groundwork and decided to continue with my plan anyway.

This is where I started thinking for myself and using my doctors as a guide to assist with the decision I thought would be best for me and advocating for myself.

The best part of these two experiences with this doctor is that during my last visit with her, I brought all kinds of charts and documents which showed her how much the elimination diet had helped me. This was the only visit I thought she ever truly listened to what I had to say and actually joined me on my side of her desk to take a look at the paperwork I brought as I went through everything.

This taught me that no matter what I have to say, I deserve to have my doctor listen to what I am talking about - not only for her benefit, but more importantly for me.

While talking to her during this visit, this was also when she slipped and told me that the only reason she put me on the clonazepam was because she thought my Migraines were totally stress related! Honestly, I have no idea how I was able to remain calm for the rest of this visit considering how I knew this drug did nothing for my Migraines or for me, how she never listened to anything I had to say until this visit and how I never said anything about any stress in my life AT ALL! I know there are other ways to tell when someone is under some stress, but we never talked about anything like that.

I kept my cool because I knew this was my last visit with her. I only went back to show her that yes, the elimination diet and finding any triggers might really be worth someones while plus I needed a refill on my real prescriptions until I could get in to see my next new doctor as I would never, ever go back to her even if she was the last neurologist left on earth. I also felt the need to go back to her this last time because I knew she would still be treating unsuspecting Migraine patients and I am hoping my last visit made a difference to her practice. I later found out who the doctor was that she did her fellowship under; another neurologist I would never recommend to anyone.

I absolutely don't regret going to this neurologist because she honestly taught me invaluable lessons about how my relationship should, or more importantly, should not be with my doctors. I know I have to take my own health and put it into my hands while partnering with my competent doctors. I have to keep working toward having the best doctor for me and keeping myself as educated as I can about Migraines too. It's also important to stay as active as we can in any legislative action that is going on. This is not as difficult as it may sound as there are many people who help us make this as easy on us as possible to get us involved. It can take as little as five minutes of our time to get in touch with our congresspeople. We need to get as many people as we can involved so we can get the help we need for our Migraine disease.

Although I don't blame my first neurologist's daughter for her mother's incompetency as a doctor, I was not expecting to see a connection to this doctor yesterday, especially on my facebook page and to have this rush of memories come flooding back on me. I thought I got rid of her a few years ago and only expected to bump into her every so often at the grocery store where she barely recognizes me even though I don't think she quite places where she knows me from either. I definitely never stop to chit chat with her as I am afraid I would say something inappropriate for the grocery store and I would rather leave her in my past anyway.

Have you ever bumped into one of your old doctors? I presume she is a nice person with a normal life; just not very good at her job. I have observed her at the store a few times and even heard her on the phone with her daughter (in the middle of one of my appointments), but she is someone I don't want any type of a relationship with either.

.

A Migraine Win

Sometimes we have to give up something to hopefully regroup and ultimately get back on track so we can move ahead. It has been quite a few months since I made my decision and I still haven't said anything to anyone about it, except for my team that I would be taking a leave from playing this summer.

I have been playing softball for well over thirty years with a few breaks when the boys were born and at other big times in our lives, but this is the first time I am taking a break for Migraine. I almost feel like I'm letting the Migraine win a round by not playing. As much as I didn't want to "give in", I did a lot of long, hard thinking about what would be best for me. At that time, I still wasn't feeling my best. I was exhausted most of the time, still struggling with many other symptoms and had the constant pounding going on.

I knew I needed to concentrate on my health. I honestly didn't know if I could commit to a season and maybe this would give me the opportunity to turn my meds upside down or try something else drastic, but all I knew was that something had to give and I didn't want it to be me.

I didn't know if I could take the shining sun, the heat, the setting sun, the night lights, the running or the yelling, but I will also miss my friends, my teammates, the competition, the exercise and everything that comes with team.

Right now, the games have just started and I am somewhat surprised how well I have handled not playing. Whenever I ask myself if I could have actually played this season, I bounce my head around a little and don't even want to think about it so I still have to agree that I made the right choice even though it is very early in the season.

My goal is to make it through this summer without playing my favorite sport and hopefully make some changes that will allow me to move forward, to start getting more wins over Migraine while looking forward to playing next season. Migraine may have this round, but I will stay motivated and have no choice but to win this serious game.

.