It will be one year ago tomorrow since I started writing my Migraine blog. This has been a whole different experience than I ever expected. I jumped into it not really ready for the new journey I was about to encounter and enjoy or all of the people I would meet; all of the new information to come across; all of the other peoples experiences I had never dreamed were out here.
I am usually a very guarded person who shields myself from everything. I still do this in many ways, but I wanted to share my Migraine journey and experiences. The blog was also another way to let me journal what was going on in my life around Migraines. I am me and want to stay me as much as I can; for better or worse. Sometimes I'm very boring, naive or lose all semblance of reason or thought. I try to keep this tough exterior that no one can see through or break and I try to stay the real me with all of my strengths and weaknesses.
I had no idea what I was doing or where I was going when I started. I really didn't even know what a blog was or ever really read any. I started my blog off very simply. I needed to tell you who I was and give you my limited experiences so I could build from there. I also knew that as soon as I established my blog that I wanted to join a Migraine bloggers group which was created about a year before that I had remembered about since its inception. Although I really didn't understand what I was getting into with that group either, it helped me to grow as a Migraineur and advocate even more than they would ever know. I joined near the end of this group which unfortunately, is no longer active.
I still have too many Migraines per month. I can't accomplish or interact as much as I want or even need to while on-line. I am embarrassed to say that I often fall asleep when trying to catch up on everyone and everything; even in the middle of posting. I feel I have a lot more to learn, but find it difficult to stay on-line to read what I need to or want to understand.
It has been a year and I have NEVER shared my blog with anyone I know personally and only three people who pseudo know me from on-line have read my blog. I have mentioned to some friends at home that I have a blog, but they have not read one word I have ever written. I don't know if I should. Some days I want to share while other days I'm glad they haven't read anything. I think I'm probably more scared about things I haven't written yet and wouldn't want them to know about. I don't know if that makes sense, but that is what makes me nervous to have anyone I know read my blog. Sometimes I believe I am still hiding those darker Migraine times or thoughts. I really admire those who are wide open to everyone they know. What do you think, should I open my blog up to those who know me?
This blog has been so rewarding for me. In addition to the ways I've already mentioned, another big way the blog and being on-line has helped me is that I don't feel so alone. A lot of my little quirks may be weird to others, but are more normal to other Migraineurs. You have helped make me much stronger.
Sometimes I feel like I know Migraines and other times I still feel like a puppet with strings and just do what I am told to do because that is the only way I can get by. I can't believe a year has gone by already.
Thank you for helping, guiding and experiencing this year with me. I don't know how I could have done it without you.
Saturday, April 24, 2010
Sunday, April 18, 2010
Right Glasses might give Headaches
I knew better. It has been drilled into me for the last couple of years, but I chose not to listen. I have been seeing the same optometrist group for the past 15 years. I've had my doubts since I know I should be seeing an ophthalmologist instead of a doctor of optometry, but they seemed to do some of the necessary eye tests including taking a picture of the inside of the eyes.
During my initial checkup this time, I told the doctor that I have 'chronic' Migraines. I wanted to put it in terms that normal people understand, even doctors. I mentioned this a few times because he just blew me off and I swear, I could see his eyes roll without him even moving them.
He eventually asked when during the day I typically get my Migraines and if I took any medications. After I answered, he said that my eyes couldn't possibly be 'causing' my Migraines. This sealed the deal. I was NOT going to come back and was going to use an ophthalmologist from now on, but I still needed to get through this visit and get my new prescription. I didn't need this character to tell me what 'caused' or didn't cause my Migraines. He never even looked at the pictures of my eye vessels and when I asked about tinted lenses, he said tinting would have no effect on anything. That tinting doesn't do anything.
From my experiences, I could tell this dude would not 'get it' so I didn't even go into it with him. He made some small talk about one of our local baseball teams. At this point, I just wanted to finish up the exam and order my new glasses so I could bid my farewells. I was actually very concise when telling him whether 1 or 2 was better. No wavering at all.
Of course, this is not the end of my story...
After I picked up my glasses, they just seemed a little off. I've never had any issues with glasses I've gotten from them before, but this was my first pair of progressive glasses so I thought that maybe I just needed a little time to get used to them as everyone says. I gave it a good two weeks and finally decided if I couldn't read the license plate on the cars in front of me or the cable TV guide, then this prescription was just not right.
The glasses were checked and they matched the given prescription so I had my eyes rechecked. During the exam, he told me that since I wear contact lenses sometimes, they have to cut back on the glasses prescription a little. What??? I used to wear contacts everyday and I never saw this type of a discrepancy. Granted, contacts will give you a better vision, but I've been at this a long time too.
Here's what really ticked me off. He told me he could up the prescription to where it should be and they would have them re-cut, but the manufacturer would not remake them if the new prescription gave me headaches or other side effects. At this point, I bit my tongue until my teeth touched. OK, not quite, but he actually repeated this a few times and stressed on the word headache each time. If they upped the prescription to where it should be, it might cause headaches. Erg!
I did not speak up for a few reasons. I had already paid for my glasses in full and just wanted my right pair. I knew he would NEVER understand Migraines and I would sound like a raging lunatic if I said what was really on my mind. Due to an incident at work, that prompted me to look into Migraines in the first place, I realized I have to be in full control of my mind before I say or react to anything. I have to be very careful not to do anything off character like that again at work; plus I don't want to. I still feel bad about the original incident. In my feeble defense, I didn't know what was going on or happening to me. I didn't even realize I had a headache or how bad it was until after. Migraine has been the answer to many of these troubles.
Anyway, he took my glasses and will redo the lenses. I can't see keeping the lenses I originally received. I was squinting way too much. I have never squinted so much with new glasses and I still couldn't make out what I was trying to see. I don't trust what this doctor told me about anything during these visits and look forward to picking up my new new pair of glasses.
I am curious to see how my Migraines react with the new progressive lenses. I did not have the best experience with my first big Migraine after I got the first pair and I'm curious if it will be different after I get the new ones which will hopefully have a better prescription.
I will use an ophthalmologist the next time. I don't expect them to be Migraine experts, but I won't expect them to ignore a significant medical concern of mine either.
During my initial checkup this time, I told the doctor that I have 'chronic' Migraines. I wanted to put it in terms that normal people understand, even doctors. I mentioned this a few times because he just blew me off and I swear, I could see his eyes roll without him even moving them.
He eventually asked when during the day I typically get my Migraines and if I took any medications. After I answered, he said that my eyes couldn't possibly be 'causing' my Migraines. This sealed the deal. I was NOT going to come back and was going to use an ophthalmologist from now on, but I still needed to get through this visit and get my new prescription. I didn't need this character to tell me what 'caused' or didn't cause my Migraines. He never even looked at the pictures of my eye vessels and when I asked about tinted lenses, he said tinting would have no effect on anything. That tinting doesn't do anything.
From my experiences, I could tell this dude would not 'get it' so I didn't even go into it with him. He made some small talk about one of our local baseball teams. At this point, I just wanted to finish up the exam and order my new glasses so I could bid my farewells. I was actually very concise when telling him whether 1 or 2 was better. No wavering at all.
Of course, this is not the end of my story...
After I picked up my glasses, they just seemed a little off. I've never had any issues with glasses I've gotten from them before, but this was my first pair of progressive glasses so I thought that maybe I just needed a little time to get used to them as everyone says. I gave it a good two weeks and finally decided if I couldn't read the license plate on the cars in front of me or the cable TV guide, then this prescription was just not right.
The glasses were checked and they matched the given prescription so I had my eyes rechecked. During the exam, he told me that since I wear contact lenses sometimes, they have to cut back on the glasses prescription a little. What??? I used to wear contacts everyday and I never saw this type of a discrepancy. Granted, contacts will give you a better vision, but I've been at this a long time too.
Here's what really ticked me off. He told me he could up the prescription to where it should be and they would have them re-cut, but the manufacturer would not remake them if the new prescription gave me headaches or other side effects. At this point, I bit my tongue until my teeth touched. OK, not quite, but he actually repeated this a few times and stressed on the word headache each time. If they upped the prescription to where it should be, it might cause headaches. Erg!
I did not speak up for a few reasons. I had already paid for my glasses in full and just wanted my right pair. I knew he would NEVER understand Migraines and I would sound like a raging lunatic if I said what was really on my mind. Due to an incident at work, that prompted me to look into Migraines in the first place, I realized I have to be in full control of my mind before I say or react to anything. I have to be very careful not to do anything off character like that again at work; plus I don't want to. I still feel bad about the original incident. In my feeble defense, I didn't know what was going on or happening to me. I didn't even realize I had a headache or how bad it was until after. Migraine has been the answer to many of these troubles.
Anyway, he took my glasses and will redo the lenses. I can't see keeping the lenses I originally received. I was squinting way too much. I have never squinted so much with new glasses and I still couldn't make out what I was trying to see. I don't trust what this doctor told me about anything during these visits and look forward to picking up my new new pair of glasses.
I am curious to see how my Migraines react with the new progressive lenses. I did not have the best experience with my first big Migraine after I got the first pair and I'm curious if it will be different after I get the new ones which will hopefully have a better prescription.
I will use an ophthalmologist the next time. I don't expect them to be Migraine experts, but I won't expect them to ignore a significant medical concern of mine either.
Saturday, April 10, 2010
Email Now for more Migraine Research Funding
The Alliance for Headache Disorders Advocacy (AHDA) has made great strides with their efforts in getting the word out that we need more research for headache disorders. The AHDA actions have been a crucial part in the National Institutes of Health (NIH) holding a two day meeting in the middle of May to "develop a long-term strategy to support and promote headache research and develop Headache Disorder Research Benchmarks". This is a big deal. The NIH is a part of the U.S. Department of Health and Human Services and is the primary Federal agency for conducting and supporting medical research. The NIH has helped lead the way toward important medical discoveries. Their scientists investigate ways to prevent disease as well as the causes, treatments and even cures.
Many important health and medical discoveries of the last century resulted from research supported by the National Institutes of Health. As a Federal agency, the NIH considers many different perspectives in establishing research priorities. The NIH makes medical breakthroughs happen to improve people's health and save lives.
Now is our time to get the proper funding for headache disorder research. We must act now!
Senator Patrick Leahy (VT) and Representative Peter Welch (VT) have drafted a letter to the Director of the NIH and would like as many other Members of Congress as possible to co-sign the letter to give our initiative a high research priority in the NIH. This is very important to all of us too. The AHDA has made it very easy for each of us to contact our individual elected officials - your two Senators and Representative.
You can help by sending an email to your Members of Congress as soon as possible urging them to co-sign this letter. The easiest way to accomplish this is to use the Action Alert Center on the AHDA website and then click on the Take Action button in the Featured Alert box.
It took me less than 10 minutes to send mine out and I added a few personal words of my own to my letter. Honestly, it doesn't take long and is so easy.
Please email your Senators and Representative to co-sign this vital letter now.
Saturday, April 3, 2010
Subliminal Migraine Dream Reminders
Have you ever had one of those dreams while you slept that really brought out one of your subconscious fears? I had one of those last night.
My Migraine fears are usually around work. This dream had to do with being in a meeting at a client's office. Apparently this was the second time I'd been out there, but I didn't even remember the first visit or the issues they were bringing up during the meeting.
My mind used to be one of my biggest assets. Now, my recall ability can be pretty shoddy. Sometimes I feel like every day is a brand new day without any connection to the previous day especially since I can't remember things that happened fifteen minutes prior let alone the day before. This kind of happened to me last week on a conference call with my boss and it didn't help having an elevated Migraine on this day. We had just conferenced someone new into a call we were having. We had discussed some items before she was brought into the call when my boss asked me to explain to her what we just talked about.
Although I was taking some notes, I could not think of what we just talked about that he wanted me to recap. The whole call we had would not have been recapped, but I didn't know what he wanted me to tell her. It was awful! Someone in my office finally figured it out, prodded me and I was fine, but come on, I should be able to remember this stuff or even be able to get something off of my notes. But there was nothing, nada, zilch coming to me! I know I had a Migraine day and I probably should have gone home, but my mind really should not be that bad.
This is where the dream comes into play too. If I were going on a client visit, I would have been over prepared. First and most importantly, I would know I was out to see this client before. I would have the list of issues we went over from that first visit along with answers to their issues even if they were for someone else to follow up on. I would have researched if they had any new issues going on with them, but none of this makes me feel any more comfortable about the dream I had.
I woke up just as I was contemplating telling my client why I was not on top of my game. Although I will answer any Migraine questions I can that you throw at me, I don't openly advertise my Migraine disease or use them as an excuse even when they are the root of my mind not working properly. Recently at work, someone on my team asked me if I was still getting Migraines. She could not believe the average number of Migraines I still get per month - not that she did not believe me.
Back to the dream. After I woke up from it, I did not know if I should have told my client about why I could not think and was fumbling all over in a very incompetent fashion. I started contemplating with myself what I would have done if this were real and not a dream. In the dream, I was truly embarrassed for how unprepared I appeared, but struggled with giving this real excuse knowing that not many people really understand Migraine disease. I feared this would sound like a feeble attempt to explain why I was so 'unprepared'.
I work for a large corporation that I am not sure would understand Migraines. Although my immediate boss does understand Migraine for the most part, I'm still not sure he knows how disabling mine can be at times even though he has experienced me at different cognitive stages. I think all of this feeds into my fear about using Migraine as an excuse. It's also something I've been working so hard on for so long to try to reduce. Even though I have made progress, I'm not where I want to be yet and this has definitely not been quick enough for me although my current doctor has been good so far.
I don't like excuses or even perceived excuses especially for myself no matter how real they are. Would you tell a client about your Migraines given these circumstances where you were not functioning properly on-site?
My Migraine fears are usually around work. This dream had to do with being in a meeting at a client's office. Apparently this was the second time I'd been out there, but I didn't even remember the first visit or the issues they were bringing up during the meeting.
My mind used to be one of my biggest assets. Now, my recall ability can be pretty shoddy. Sometimes I feel like every day is a brand new day without any connection to the previous day especially since I can't remember things that happened fifteen minutes prior let alone the day before. This kind of happened to me last week on a conference call with my boss and it didn't help having an elevated Migraine on this day. We had just conferenced someone new into a call we were having. We had discussed some items before she was brought into the call when my boss asked me to explain to her what we just talked about.
Although I was taking some notes, I could not think of what we just talked about that he wanted me to recap. The whole call we had would not have been recapped, but I didn't know what he wanted me to tell her. It was awful! Someone in my office finally figured it out, prodded me and I was fine, but come on, I should be able to remember this stuff or even be able to get something off of my notes. But there was nothing, nada, zilch coming to me! I know I had a Migraine day and I probably should have gone home, but my mind really should not be that bad.
This is where the dream comes into play too. If I were going on a client visit, I would have been over prepared. First and most importantly, I would know I was out to see this client before. I would have the list of issues we went over from that first visit along with answers to their issues even if they were for someone else to follow up on. I would have researched if they had any new issues going on with them, but none of this makes me feel any more comfortable about the dream I had.
I woke up just as I was contemplating telling my client why I was not on top of my game. Although I will answer any Migraine questions I can that you throw at me, I don't openly advertise my Migraine disease or use them as an excuse even when they are the root of my mind not working properly. Recently at work, someone on my team asked me if I was still getting Migraines. She could not believe the average number of Migraines I still get per month - not that she did not believe me.
Back to the dream. After I woke up from it, I did not know if I should have told my client about why I could not think and was fumbling all over in a very incompetent fashion. I started contemplating with myself what I would have done if this were real and not a dream. In the dream, I was truly embarrassed for how unprepared I appeared, but struggled with giving this real excuse knowing that not many people really understand Migraine disease. I feared this would sound like a feeble attempt to explain why I was so 'unprepared'.
I work for a large corporation that I am not sure would understand Migraines. Although my immediate boss does understand Migraine for the most part, I'm still not sure he knows how disabling mine can be at times even though he has experienced me at different cognitive stages. I think all of this feeds into my fear about using Migraine as an excuse. It's also something I've been working so hard on for so long to try to reduce. Even though I have made progress, I'm not where I want to be yet and this has definitely not been quick enough for me although my current doctor has been good so far.
I don't like excuses or even perceived excuses especially for myself no matter how real they are. Would you tell a client about your Migraines given these circumstances where you were not functioning properly on-site?
Friday, April 2, 2010
Progressive Spectacles
Another sign that I am getting older. At my last eye doctor visit, it was decided that I needed help with both distance and things that are close. Some of my friends had the progressive glasses so that seemed like the route I wanted to go as well. They filled me in on some of the helpful hints as it can take a little while to get used to them.
I picked them up last weekend. It really didn't take long for me to get used to them. I had a minor adjustment when I went to work Monday morning with transitioning between the paper and computer screen, but they had been really great until Thursday.
On Thursday, I got hit with a nice Migraine. This Migraine also brought about a very tough time with the progressive glasses. I felt like I just couldn't get them right. I really didn't want to go back to my old glasses because my prescription had changed enough plus they tell you its better not to go back to regular glasses.
I think on non-Migraine days the progressives were fine. But if I have a Migraine, I'm concerned that I'm going to keep having problems with them or is this just part of the my getting used to progressive lenses phase? I am better with the glasses today, but still not back to where I was yet. It could be because my brain is not functioning like it should yet.
Do you have any experience with progressive glasses and how your Migraines are with them?
I picked them up last weekend. It really didn't take long for me to get used to them. I had a minor adjustment when I went to work Monday morning with transitioning between the paper and computer screen, but they had been really great until Thursday.
On Thursday, I got hit with a nice Migraine. This Migraine also brought about a very tough time with the progressive glasses. I felt like I just couldn't get them right. I really didn't want to go back to my old glasses because my prescription had changed enough plus they tell you its better not to go back to regular glasses.
I think on non-Migraine days the progressives were fine. But if I have a Migraine, I'm concerned that I'm going to keep having problems with them or is this just part of the my getting used to progressive lenses phase? I am better with the glasses today, but still not back to where I was yet. It could be because my brain is not functioning like it should yet.
Do you have any experience with progressive glasses and how your Migraines are with them?
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