tag:blogger.com,1999:blog-63549196269251143032024-03-19T00:44:28.956-04:00My life with MigraineDaily thoughts from a woman suffering from Migraine disease, Fibromyalgia and Atrial Fibrillation....and maybe some other thoughts thrown in for good measure!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-6354919626925114303.post-32325697135236879692014-08-06T10:22:00.002-04:002014-08-06T10:22:40.797-04:00In Austin, TexasI have to apologize to anyone and everyone who ever stops by here and/or comments on my blog. For some reason, I was not getting notifications as to when someone would leave a comment so I just saw that there was about 7 comments from 2013 - I am so very sorry. I hate it when people don't get back to me and I'm sorry for doing that to you. I am going to work on switching addressing in which my notifications go to and hope that helps. I also hope to blog more once my life settles down a bit. I feel as if there are many plates spinning in the air all at once. The good thing is, my health is good. We (my husband and I) are on vacation in Austin, Texas right now - hello! first time on an airplane since 1998! I had a MAJOR anxiety attack! Thank god I have an awesome fibro dr who I was able to just be like "listen I don't think I'll freak (so wrong) but just in case can I have something just in case for the flight to and from" SOOOOO glad I did that!!!!!! Landing was fine, take off was DRAMA CITY! Oh man I felt like one of those people who end up on youtube video's! LOL
Anyway - I promise - now that my health is more regular (Migraines are like zip - maybe 3 in a bad month) Fibromyalgia is better in summer (the hotter the better for me, I feel much better in heat) - So hopefully I'll get back to blogging and be able to get back into talking with all of you. Again I am so sorry about the comments, I will change my notifications address and hopefully that will fix the issue. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQbAzjg8OOmXjybowEnQhzOeQkqLrpU9PVY7wRW4BniANCF79O8cixIgASCQVMNypLGHI4TXaJJopV0O_dazh1CoVfy0Gw_06ZFndUjFsXLTbVZVib6D0CLeUGl_1WAEpQ78dO_SYt4ZA/s1600/shawn+&+eileen+austin+skyline.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQbAzjg8OOmXjybowEnQhzOeQkqLrpU9PVY7wRW4BniANCF79O8cixIgASCQVMNypLGHI4TXaJJopV0O_dazh1CoVfy0Gw_06ZFndUjFsXLTbVZVib6D0CLeUGl_1WAEpQ78dO_SYt4ZA/s320/shawn+&+eileen+austin+skyline.jpg" /></a>
Thanks to all who are still reading. I am working out the kinks and hope to get back to this on a more normal basis and change my notifications.Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com0tag:blogger.com,1999:blog-6354919626925114303.post-52924931758521246862013-03-23T16:49:00.000-04:002013-03-23T16:49:10.038-04:00Comments....I have not blogged in a long ass time, I know - I am thinking I am going to get back into it. Just not today - today is try like hell to get your taxes done day. Anyway, I just wanted anyone who may still happen by here to know that I was not ignoring your comments - I just saw them today! I am supposed to get an email notification when I get one and I have not been getting them because I had like 30 comments and no emails! So, I am very sorry if you commented and were waiting to see it here, they are all up now. I am very happy to hear about the person who went and got a blood patch after a LP all because she read my post here! That really ment a lot to me - well, it ment more that she went and got help and felt better! To this day I think that was the worst pain ever! I have a bunch of blog ideas, plus I may start a new one on make-up and skin care too - but that would require me to actually be alive, awake and alert enough to use the computer. We shall see. My Fibro has been so outta control that I can hardly funtion lately....and the past two weeks I have been Migraining every day because of the weather. Just a sucky month I guess. Well that's about it for now. My wrist is starting to hurt and I have not even done what I came on here to do yet. I hope you are all well and living as good as you can.
I hope to 'see' you all soon.
Much love!
EileenEileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-74769720818935697932010-07-16T09:25:00.006-04:002010-07-16T10:09:49.538-04:00When Does It End?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i99.photobucket.com/albums/l285/jadegreen11/funny-pictures-cat-needs-his-medici.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 397px; height: 349px;" src="http://i99.photobucket.com/albums/l285/jadegreen11/funny-pictures-cat-needs-his-medici.jpg" alt="" border="0" /></a><br /><br />I have been away for too long again, I know. It just feels like every time I get ahead, I end up two steps behind.<br /><br />I was scheduled for shoulder surgery on 5/28. Unfortunately it did not go as planned. I went in to the OR, had the 1st dose of drugs to just sedate me so that I would be less nervous I guess. After that, I know nothing. I woke up to find 1. my surgery was not done and 2. I know have a heart condition!<br /><br />While getting ready in the OR, they hooked me up to the monitors and my heart was beating at 150 bpm (beats per minute). The normal heart beat is around 70 bpm so you can see why they were concerned! I went into <a href="http://www.mayoclinic.com/health/atrial-fibrillation/DS00291">Atrial Fibrillation</a> or "A-Fib". Never a dull moment when I'm around I guess!<br /><br />So the cardiologist explains what is going on and tells me what the deal is. He was going to admit me to spend the night at lovely St. Clare's Dover Campus when my heart, on it's own, returned to normal rhythm.<br /><br />The next day I went into the Cardiologist office and had an Echo. The Echo showed that I have a spasm in my inner heart wall - fun for me! He seemed concerned, but not overly freaked. He showed me the spasm which, of course, caused me to freak out!<br /><br />Long story short, I rescheduled my surgery for 2 weeks later and everything went fine. The doctors had to keep administering Cardizem during my procedure to keep my heart rate down. I am now on this medication daily....along with a baby aspirin.<br /><br />I have seen the cardiologist since and have also done a halter heart monitor. We are waiting for the results of that before we move forward. It seems that my heart beats at around 100-120 bpms on a regular. My question is why doesn't that help me lose weight??!!??<br /><br />On to other things....I go back to see <a href="http://www.jefferson.edu/headache/fac/">Dr. Young</a> at the <a href="http://www.jefferson.edu/headache/">Jefferson Headache Center</a> on Monday. I really don't know of too many people who look forward to having their head jabbed with needles and numbed out, but for those with <a href="http://www.healthcentral.com/migraine/">Migraine</a> who have experienced the joys of a Nerve Block, you know what I mean! My mother is coming with me for company. This will be the first time she gets to see up close and personal what I go through with my Migraine Disease. How come now at 33 is this the first time she will see this? Well, because I was diagnosed at 24 and have not lived with her since being diagnoses. Yes, she has seen me in pain, taking triptans and staying in bed for days on end, but I don't know if it ever fully hit her how bad I really am. I guess part of me wants her to fully see what goes on at my appointments and hear me talk to a medical professional about my illnesses. I think this may give her the jolt she needs to realize how serious this really is! Throw in the <a href="http://www.fmaware.org/site/PageServer">Fibromyalgia</a> and heart condition and you have one sick daughter!<br /><br />Due to the shoulder surgery, I have been on disability since May - and - still waiting for my checks to come in! I have to say that my head has been much better since not working in the psycho drama that I was working in. I have had no <a href="http://www.healthcentral.com/migraine/types-of-headaches-37335-5.html">Tension-Type Headaches</a> since leaving my job. I am worried that going back will be detrimental to my health and I'm really scared to do so. I really feel that my current job contributed to not only my heart condition (being under constant stress) but also my daily TTH and Migraines.<br /><br />Although the Migraines and Tension Headaches are not as bad, the Fibromyalgia is cranking at full speed. I have constant pain in my neck, shoulders, wrists, hands, ankles, hips, and legs. Yeah, that pretty much covers it! I find that especially with the current 90 plus temps, that the Fibro and heart issues are almost unbearable. I really don't know how I can go back to work feeling this all over pain - not to mention hardly even being able to walk 50 feet without being exhausted from my heart. I guess time will tell.<br /><br />I really do hope to get to blog more often. I think I got so used to not being able to use the computer at work, that I have forgotten all the things I used to do. Hopefully that will change and I will come back here with an update after Philly.<br /><br />Until then - stay cool and pain free!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com9tag:blogger.com,1999:blog-6354919626925114303.post-26685398155910479132010-04-14T20:29:00.004-04:002010-04-14T20:35:37.987-04:00So much to say....I have not posted here in such a long time! I have so much to catch up on and still don't really have the time right now. The best thing that has happened recently is that I got in to see Dr. Young at the Jefferson Headache Center in Philadelphia!!! He is amazing! I had a nerve block and trigger point injections. They worked better than I thought but are starting to wear off now.<br /><br />On the down side, I was diagnosed with Fibromyalgia back in February so that is not fun, but at least now I know what the deal is and why I'm always in pain (other than just my brain).<br /><br />I am going to need to have some shoulder surgery soon - that should be exciting. I also need to set up time to go back to Jefferson for the IV Therapy clinic. Dr. Young thinks it would be very beneficial.<br /><br />I hope to get back on here and write more soon. I just don't have enough hours in the day with my job and my health as of late.<br /><br />Hope everyone out there is doing well!!!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com6tag:blogger.com,1999:blog-6354919626925114303.post-87720150564014080972009-09-15T11:26:00.004-04:002009-09-15T12:21:47.237-04:00Lumbar Puncture - the good, the bad, and the very painful<a href="http://i99.photobucket.com/albums/l285/jadegreen11/syringe.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 214px; FLOAT: right; HEIGHT: 173px; CURSOR: hand" border="0" alt="" src="http://i99.photobucket.com/albums/l285/jadegreen11/syringe.jpg" /></a><br /><div>It's been a month since I had my lumbar puncture. It has taken me a while to feel "normal" again - although my normal and a healthy persons normal are two very different things.</div><br /><div></div><br /><div>I wanted to get my experience about my LP out there because if one other person can learn from my experience, then I feel like my experience was worth it.</div><br /><div></div><br /><div>Let me start by saying the lumbar puncture itself went great. I didn't feel a thing. It really was one of the easiest tests I've ever had done. I would even say it was easier than a CT, just because I didn't have to take off all my jewelery. I was having a lumbar puncture to rule out <a href="http://www.healthcentral.com/migraine/types-of-headaches-193359-5.html">Pseudotumor Cerebri, aka, Idiopathic Intracranial Hypertension</a>. IIH is increased spinal fluid that can trigger Migraines. I had quite a few of the symptoms: no trigger Migraines, tinnitus (ringing in the ears), headaches or Migraines upon waking, preventives that did not work, or worked for a short time, neck and shoulder pain, pain behind the eyes and nausea.</div><br /><div></div><br /><div>So I have the LP which, as I stated went very easy. Actually, the test itself was fantastic. I get back to my room feeling great. I'm laying down, which I was told I would have to do for at least two hours until they would release me (I did this as an outpatient in a hospital, which is where most of these tests are done). </div><br /><div></div><br /><div>I was feeling fine for the first hour or so.....then the pain started. The head pain was not like my typical Migraine or Tension Headache pain, this was different. It felt like the cloggy feeling you may experence when in a plane - but to the extreme. I let the nurse know and she wanted to give my Tylenol - yeah, Tylenol. I don't even take that for a TTH, much less THIS! I thought it would pass or not get worse. The nurse left and I took a Vicoprofen that I had with me. </div><br /><div></div><br /><div>On the way home (the hospital I went to was about 45 mins away from my house), the pain increased. I had Shawn stop for a bagel and some tea, so I could at least eat for the first time that day (it was about 1 or 2 pm by then) and also have some caffiene. My doctor had said caffiene may help with the spinal headache.</div><br /><div></div><br /><div>I rested the rest of the day - the Vicoprofen did nothing. The next day, Saturday, I felt a little bit better - at least for a while. By Sunday, I could not lift my head off the pillow without getting sick. The pain in the back of my neck and head upon standing was so intense, I would vomit almost immediately.</div><br /><div></div><br /><div>I spoke with a friend of mine who I knew had some difficulties with this test and she said go to the ER and get a blood patch. I called my doctors office and spoke with the covering doctor, who said my doctor would be doing rounds in the morning, and if I could wait, go to the ER first thing Monday.</div><br /><div></div><br /><div>Monday morning we were back at the hospital. I could hardly stand or walk and the only way I felt halfway comfortable was laying down flat. </div><br /><div></div><br /><div>The doctors took me in right away - pretty much as soon as I was checked in. I got some Zofran to start with an IV and went up to have the blood patch. For those who don't know, a blood patch is when they go back into the spine, just above where the LP was done, and inject your own fresh blood back into your spine to help stop the spinal fluid from leaking. Most of the time your body will heal quickly and close over the hole from the LP, but if not, a blood patch can fix that.</div><br /><div></div><br /><div>I was told to sit upright with my legs hanging over the bed. I crouched over and hugged a pillow as the doctor numbed the area with lidocane. By now, I had an IV in my right arm and the doctor was taking blood from the side of my left arm. He injected 20 CC's of my blood into my spine and said I may feel pressure when he does this. I felt the pressure, but also relief. My head was feeling better, or so I thought.</div><br /><div></div><br /><div>Again, I though I was "good to go". I returned to the ER - now taking 2 full bags of saline in less than an hour and a half. I was so dehydrated from getting sick all day, every day, for the last 2 days. I went home and rested thinking I would go to work on Tuesday and everything would be fine. Wishful thinking!</div><br /><div></div><br /><div>I went to work on Tuesday - even drove myself! I felt ok in the morning, but by about 11 a.m. I could tell I should not have attempted working. I was bent over my desk between trips to the bathroom to get sick. I called Shawn to pick me up. I stayed home on Wednesday and again thought I was o.k. to return to work on Thursday. Wrong again! I had called my doctor during all of this - and spoke with a covering physician. I did speak with my doctor on Thursday, and by that time, I was out of my mind. I was hysterical and didn't know what to do. She told me "go home, stay in bed, and don't even think of moving until at least Monday". And that is what I did.</div><br /><div></div><br /><div>My doctor also called in a prescription of Prednisone, to help get rid of the spinal headache. I was to be on a Prednisone taper for about 16 days, taking one less pill every four days until there were none left.</div><br /><div></div><br /><div>By about Wednesday that week, a week and a half after my lumbar puncture, I was finally starting to feel like I was human again.</div><br /><div></div><br /><div>I wanted to get my story out there to let anyone who has similar side effects know - if you feel as bad as I did after your LP, call your doctor and get a blood patch. Don't wait like I did. I wish I had known earlier, I could have saved myself a lot of pain and money by acting earlier than I did.</div><br /><div></div><br /><div>So I'm sure you want to know the result of my LP as well, right?</div><br /><div></div><br /><div>As it turns out, I don't have Pseudotumor Cerebri. My opening pressure during my LP was only 14. Even with the Diamox that I take, that is on the normal side. This was a disappointment to me at first. I thought that having IIH that it would answer so many questions about my Migraine Disease. I thought if I only had IIH, then I can finally treat my Migraines in a different way and know what some of the cause of my Migraines were. </div><br /><div></div><br /><div>Although I am happy that I don't have IIH, I knew I had to have this test to know for sure if I did or not. The only way to be tested for IIH is with a lumbar puncture.</div><br /><div></div><br /><div>I do not regret having this done. I would do it again if I had to, but maybe would be quicker and realizing my symptoms were not the norm for the test. Only about 10% of patients who have an LP get a spinal headache. It really was hell for a week and a half, but at least now I know 100% with no question, that I do not have Pseudotumor Cerebri.</div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com5tag:blogger.com,1999:blog-6354919626925114303.post-39593809883694810232009-09-08T11:07:00.003-04:002009-09-08T11:34:58.287-04:0030 Things About My Invisible Illness You May Not KnowEach year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:<br /><br />1. The illness I live with is: Migraine disease<br />2. I was diagnosed with it in the year: 2002? It seems like a life time ago.<br />3. But I had symptoms since: I was about 13 - I'm 32 now.<br />4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.<br />5. Most people assume: that Migraines are "just headaches."<br />6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.<br />7. My favorite medical TV show is: Grey's Anatomy<br />8. A gadget I couldn’t live without is: my computer<br />9. The hardest part about nights is: insomnia and nausea<br />10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly<br />11. Regarding alternative treatments I: have only tried aromatherapy<br />12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!<br />13. Regarding working and career: it's a challenge every day.<br />14. People would be surprised to know: I have some sort of pain every day.<br />15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.<br />16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.<br />17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.<br />18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late<br />19. It was really hard to have to give up: my former life.<br />20. A new hobby I have taken up since my diagnosis is: blogging<br />21. If I could have one day of feeling normal again I would: probably be too scared to do anything since I would regret it the next day!<br />22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.<br />23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"<br />24. But I love it when people: are willing to learn about the disease instead of judge me unfairly<br />25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri<br />26. When someone is diagnosed I’d like to tell them: learn all you can about this disease<br />27. Something that has surprised me about living with an illness is: how far we have to go<br />28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.<br />29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.<br />30. The fact that you read this list makes me feel: a little less aloneEileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com10tag:blogger.com,1999:blog-6354919626925114303.post-43249728148830510122009-07-29T19:00:00.007-04:002009-08-02T18:18:30.018-04:00Things A Person With An Invisible Illness Hate To Hear<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2Y148ysb5nmQSCJYZf21-VRfgLUGLR00bUpU5B5t57_SFaFUiPG0XlWA8HyldaR8ry98-aWnigi0IxwAbsIfgQiA07CCFkTh2M23hHcN56aj4oB51lYpSuSR3f6gMEmN-EEdaUfQQZQ/s1600-h/annoying.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 210px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2Y148ysb5nmQSCJYZf21-VRfgLUGLR00bUpU5B5t57_SFaFUiPG0XlWA8HyldaR8ry98-aWnigi0IxwAbsIfgQiA07CCFkTh2M23hHcN56aj4oB51lYpSuSR3f6gMEmN-EEdaUfQQZQ/s320/annoying.jpg" alt="" id="BLOGGER_PHOTO_ID_5365494198880713858" border="0" /></a><br />This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.<br /><br />This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?<br /><br />"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.<br /><br />I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.<br /><br />This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.<br /><br />"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."<br /><br />Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.<br /><br />Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.<br /><br />"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.<br /><br />"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.<br /><br />My friend Heather has a great little signature on her posts over at <a style="font-weight: bold; font-style: italic;" href="http://www.mymigrianeconnection.com/">My Migraine Connection</a>. It says: <span style="font-style: italic;">My disabling chronic illness is more real than your imaginary medical expertise. </span><br /><br />I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.<br /><br />I can't wait to hear what you all have to say! I'm sure this is not all of them!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com13tag:blogger.com,1999:blog-6354919626925114303.post-54577365962013568002009-07-14T18:57:00.003-04:002009-07-14T19:47:59.198-04:00Back by popular demand....well, maybe just back.Wow! I have not written in a very long time. Too long....and probably too long to catch up in one post.<br /><br />On the Migraine front, I am seeing a Migraine specialist in NJ. She is wonderful. I don't think I've blogged since I started seeing her. I forget and due to head pain this moment, I don't feel like reviewing my previous ramblings.<br /><br />I have been taking Diamox as a preventive. It is a medication primarily prescribed for myopia, but is also used for weather triggered Migraines, and also, <a style="font-weight: bold; font-style: italic;" href="http://www.healthcentral.com/migraine/c/123/5846/diagnose-cerebri/">Intracranial Hypertension</a> (IIH or PTC) which I have discussed before and convinced I have. I am really going to push my doctor during this weeks visit to order a lumbar puncture for me. I mean, if I'm willing to go through with it, what harm does it cause to order it? At least then I will know once and for all if I have IIH.<br /><br />The Diamox is working quite well. I do have occasional tinglies in my feet and knee caps, but primarily in my hands. I get the tingles throughout the day, but it's nothing I can't handle. I mean, it has cut my frequency and severity of Migraine down to maybe 3 a month....and that is a high number. Before seeing Dr. M, I was having about 22-25 Migraines a month. This is HUGE!!!!<br /><br />Currently, we are trying to see what we can do to decrease my tension headaches. I was taking Zanaflex for them, which was working pretty well, but now that I'm on the Diamox - for some reason my tolerance for Zanaflex has decreased. I used to be able to take 2 mgs. no problem.....keep working, driving, not tired, and no pain! Now, since the Diamox, if I take a 1/2 a Zanaflex - I can't stay awake at work. So, I try not to take it while working. I only take it once I am home for the evening. I also take it every night now which has helped my Migraine frequency as well.<br /><br />As far as life in general.....I recently lost a friend I had reconnected with. She was really funny and I don't remember a time I spent with her when I was not laughing. Kim, the friend that passed, and Sandy, another friend of mine, where around a lot when I was in grade school and starting high school. Sandy lived with us for a while, and she was BFF's with Kim, which is how I met her.<br /><br />The three of us ended up working at the local grocery store together....ran in the same circles....I was always the youngest and the tag along, although now the age difference is nothing. They are three years older than me, so at the time, they were in high school, and I was in 7th grade. Big difference when you are that age!<br /><br />I remember that during this time my father had shared visitation with my mom. I would have to go to his house every other weekend and half the summer. This sucked for someone who wanted to go to school dances on the weekends and hang out with my friends. There were no kids up at my dads. It was pretty boring. Kim and Sandy were like my sisters during this time. With Sandy living with us, there was always someone around to hang out with, and with Kim, well, being Sandy's BFF, she was always at the house.<br /><br />Kim would write to me when I went to my fathers over the summer. I will always remember that. It was pretty much Kim and my friend Emily who would keep in touch those six weeks, which in kid time, felt like FOREVER!!!! When I would come home, we would have ice cream and watch scary movies. I always wanted to know what was up in their love life, because they were older and I could live through them.....since I did not have a boyfriend.....I don't even know if I really even thought about boys all the much yet. I mean I did, but not as a boyfriend I don't think. I just thought they were cute.<br /><br />I was so happy when the three of us recently reconnected on Facebook. I found out that both Kim and Sandy were married and had children. Sandy now lives where I pretty much spent my childhood, right around the corner from my BFF Emily's childhood home. Kim's family lives right across the street from me practically. Kim and I both got married at Modick park, in the Gazebo. Her husband works for the fire department for our town, and I work for the town at the pound. It was like coincidence after coincidence....except for the kids part! LOL<br /><br />Kim and I had been trying to get together, since we lived so close. On July 3rd, I had taken the day off because the 4th is our anniversary. I know that Kim and her family hang out at the "Mud Hole" as they call it here, which is the community lake. Shawn and I were coming back from shopping and drove past the mud hole and I said "I wonder if Kim is down there". I was thinking of walking down after we put away groceries to see if she was there. I put away the groceries and went to lay down for a bit. I kept thinking I could hear someone calling my name from the mud hole. I would have sworn it was Kim.<br /><br />I got up and checked my email, facebook, and all that and saw a status comment from Sandy saying that Kim had passed away that morning. I could not believe it. How? Why? Kim had just lost her mom to cancer on Easter Sunday, and now she is gone too? No...no. this can't be happening. I really did think it was a joke at first until I read other comments and posts from people. I couldn't believe it. She was only 35. Way too young.<br /><br />Kim and Sandy were very influential in getting me away from my father. He was by no means a "dad". He definitely has/had some mental issues that needed to be addressed. Plus, by this time I had a boyfriend and didn't want to have to go to my fathers every other weekend. I wanted to be with my friends. They gave me the courage to stand up to him and say that I wanted to only go up there when I wanted to go up there and that was that. That was the last time I saw my father for a weekend. I think I saw him once or twice since then - but even so, that was over 13 or more years ago. He only used me to get back at my mom anyway, so it was a destructive relationship from the get go. Probably one of the best things I ever did was get away from him.<br /><br />This got me to thinking of where I was in my life....where I had come from. Thinking back to where I was then and where I am now. Also, thinking back to another huge moment in my life, when my house was struck by lightening. It was three years ago this past 4th of July.<br /><br />Since that time, I ended a toxic friendship. I had been "done wrong" by this person once before....fool me once, shame on you, fool me twice, shame on me. I started hearing a lot of things that this person was saying and doing (she was my roommate at the time when the fire happened) and it was not good for either of us to stay friends at that point, even if she didn't see it yet. <br /><br />I moved in with Shawn, since he was my next door neighbor, renting the apartment on the other side of the house. We started dating pretty quickly and started looking for a home after only dating about 3 weeks! We both just knew. We moved out of that house at the very end of November of the same year - yes, just 4 months after the fire.<br /><br />Two years ago, Shawn and I got married on the 4th. We just had our second anniversary. We will be together for three years on August 13th.<br /><br />I am one of those people who just don't want to ever regret things in my life. I don't regret anything thus far, since it has made me who I am. I feel like my life has had so much suffering that Shawn is my prize for enduring it all. I really could not imagine my life without him now. It's hard for me to think of a time before him. We knew from the start that we were going to be together. We both just knew. I don't know how else to explain it. So, if I were to regret anything I did, or take any of it back.....it would not have led me down the same path. I would not have the friends that I have, the husband I have, the life I have. I'm not saying it's perfect by a long shot, but it's mine.<br /><br />For some reason, I felt the need to get this all out today. I have felt very sad today. I have been thinking a lot about Kim and what she meant to me, and also of my sister in law, Becka, who passed three years ago now.<br /><br />Death sucks. Losing people you love, sucks. It is even worse when the person is young and has so much more to live for and experience in life. It is almost easier when the person is older. Maybe easier is not the best word, but when someone has lived to an older age, it does not seem as much of a shock I guess. All the deaths that have happened lately, well, the last three years, have been of people that were taken way too early. It sucks. It just sucks.Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com5tag:blogger.com,1999:blog-6354919626925114303.post-25339916122103930662009-02-24T10:21:00.003-05:002009-02-24T10:32:15.689-05:00Help Your Local Shelter!As some of you may know, my husband Shawn and I work at our local animal pound on the weekends.<br /><br />We have some video of some of the animals up on our <a href="http://www.youtube.com/ctuagentgray"><strong>You Tube Page</strong></a>, but there are always so many cats coming in, it is sometimes hard to keep up.<br /><br />Today, via @Romeothecat on <a href="http://www.twitter.com/"><strong>Twitter</strong></a>, I saw something really cool! Romeo the Cat posted a tweet: @Romeothecat Luv your local animal rescue? Submit it at <a href="http://www.romeothecat.com/" rel="nofollow" target="_blank">www.romeothecat.com</a> to be recipient of March donations!<br /><br />So, I am signing up our local pound to receive donations! I hope we win!!!<br /><br />Pleast check out the <a href="http://www.romeothecat.com/"><strong>Romeo the Cat</strong></a> website too! Very cool!<br /><br />Oh, and for those of you who don't know - the shelter we work at is the Hopatcong Animal Shelter in Hopatcong, NJ. We can always use old towels and blankets, bleach, spray bottles, scrub brushes, treats and food, among other things. Check out the cats and dogs up for adoption from the Hopatcong Pound at: <a href="http://www.petfinder.com/shelters/NJ162.html">http://www.petfinder.com/shelters/NJ162.html</a> - we have a bunch of really great cats. Please check us out!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com0tag:blogger.com,1999:blog-6354919626925114303.post-71872249041685194312009-02-10T08:49:00.002-05:002009-02-10T08:50:43.035-05:00Head hurtsToday I don't think will be a good day. I'm tired, my head hurts and I am very dizzy.<br /><br />More to come later.Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-4723828396905837602009-02-07T17:06:00.003-05:002009-02-07T17:22:51.911-05:00Headache on the Hill is 2 Weeks Away!!!<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnlcugL47XtE9MP9o6oRwjX-s1dEP2NTAA_CwrTmMJgknmO7JU_SzYj2EaAEMrJ3pbMErBIWpnLAqX4zB0lGJ3vcZNKxk8shAc_LdxfrqdcY2u9t6Kmp1xpkTsLnuRRZjvoGq_Pop2Xjo/s1600-h/AHDALogo160.jpg"><img id="BLOGGER_PHOTO_ID_5300183470255436402" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 160px; CURSOR: hand; HEIGHT: 80px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnlcugL47XtE9MP9o6oRwjX-s1dEP2NTAA_CwrTmMJgknmO7JU_SzYj2EaAEMrJ3pbMErBIWpnLAqX4zB0lGJ3vcZNKxk8shAc_LdxfrqdcY2u9t6Kmp1xpkTsLnuRRZjvoGq_Pop2Xjo/s200/AHDALogo160.jpg" border="0" /></a>Are you signed up for your action alerts? <a href="http://www.terirobert.com/"><strong><em>Teri Robert</em></strong></a> wrote a great share post over at <a href="http://www.mymigraineconnection.com/"><strong><em>My Migraine Connection</em></strong></a> letting you know how to sign up for Action Alert emails. We really need funding, guys!</div><br /><div></div><br /><div>Listen, if you are not going to sign up and help push for more funding for Migraine research, then you really can't complain about the treatment that you receive. Sorry, that's just the way it is. I don't mean to be harsh, but this is really important!!!!!</div><br /><div></div><br /><div>Please visit Teri's article: <strong><em><a href="http://www.healthcentral.com/migraine/c/123/58561/migraine-treatment">HERE</a>. </em></strong>Sign up for Action Alerts by clicking <a href="http://capwiz.com/headacheadvocacy/mlm/signup/"><em><strong>HERE</strong></em></a>.</div><br /><div></div><br /><div>Thanks!</div><br /><div></div><br /><div>From the AHDA website:</div><br /><div></div><br /><div>Headache on the Hill 2009<br />Colleagues We’re delighted to announce that the second Headache on the Hill (HOH) advocacy event will be held in Washington, DC on Monday, February 23rd and Tuesday, February 24th 2009. We hope that you can make this event. A FAQ, tentative agenda, and application form for HOH are available. <a href="http://www.allianceforheadacheadvocacy.org/Headache%20on%20the%20Hill%202009%20FAQ%20&%20Application.doc">CLICK HERE</a> for these documents. </div><br /><div></div><br /><div>The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. You might ask, why bother going to Congress now, when the prospects for increased discretionary spending appear to be so dim? First of all, we intend to make specific programmatic requests of Congress during HOH that should have lasting benefits but that will require relatively modest short-term increases in NIH expenditures. Secondly, this spring is a unique advocacy opportunity: the “honeymoon” of a new Democratic President and a Democratic Congress promises action on a broad legislative agenda. Furthermore, a new NIH Director will be chosen next year and, even in the leanest of times, NIH initiates some new programs and adjusts its priorities. Finally, successful advocacy is often a slow iterative process requiring continuous engagement. We are building on the legislative progress that began with the first HOH in September 2007 and resulted in language in the recent US Senate Appropriations Committee Report strongly urging increased NIH attention to headache disorders. If we are to realize these necessary changes in NIH funding, we must continue to make our issue heard before Congress. </div><br /><div></div><br /><div>We truly hope that you will be able to be join us at HOH. Your participation can make a difference. Please apply and reserve your hotel room as soon as you can.</div><br /><div></div><br /><div>Thanks, </div><br /><div>Bob Shapiro </div><br /><div>Bill Young </div><br /><div>Teri Robert </div><br /><div>Brad Klein </div><br /><div>Alliance for Headache Disorders Advocacy</div><br /><div><a href="http://www.allianceforheadacheadvocacy.org/">http://www.allianceforheadacheadvocacy.org/</a> </div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com0tag:blogger.com,1999:blog-6354919626925114303.post-17504398586177015432008-11-24T18:07:00.000-05:002008-11-24T18:07:00.660-05:00Awards and things.....<div><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnkVL4keNRXuZyLvwGUasSGuwq3ezzpa1wt3Q_FYqVyWIIcsA1dVYTM2wu3EEDC6FeoRcmSeuHBOBvQNrfU1sGnIciDt0_WqMMA8vzmz0Ind0pDB5PvJCM_VtAflyLoOxlbHlrEvgVCG0/s1600-h/lemonade_award.png"><img id="BLOGGER_PHOTO_ID_5272213587448277442" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 195px; CURSOR: hand; HEIGHT: 200px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnkVL4keNRXuZyLvwGUasSGuwq3ezzpa1wt3Q_FYqVyWIIcsA1dVYTM2wu3EEDC6FeoRcmSeuHBOBvQNrfU1sGnIciDt0_WqMMA8vzmz0Ind0pDB5PvJCM_VtAflyLoOxlbHlrEvgVCG0/s200/lemonade_award.png" border="0" /></a>My friend <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MJ</span> over at <a href="http://rhymeswithmigraine.blogspot.com/"><em><strong>Rhymes with Migraine</strong></em></a> awarded me a Lemonade award! This is for "blogging with the attitude of gratitude". </div><br /><br /><div>I love that we have little awards to give to other <span class="blsp-spelling-error" id="SPELLING_ERROR_1">bloggers</span>!</div><br /><br /><br /><div></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ__o5uiQl4ZtIaukepYKePBEZ6Ti0hjVULdnQE7DvAewOQAreWKtVHGTH1NlG5nlEEhQc2Kme6ZOkYvtg7c_BFnahw6IqP8fpnlI6mX-mBqt6Z-X_MqR4H1o8VKnkxSelCNdoINVs5Oc/s1600-h/Kreativ+Blogger+Award.jpg"><img id="BLOGGER_PHOTO_ID_5272213691660554386" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 200px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ__o5uiQl4ZtIaukepYKePBEZ6Ti0hjVULdnQE7DvAewOQAreWKtVHGTH1NlG5nlEEhQc2Kme6ZOkYvtg7c_BFnahw6IqP8fpnlI6mX-mBqt6Z-X_MqR4H1o8VKnkxSelCNdoINVs5Oc/s200/Kreativ+Blogger+Award.jpg" border="0" /></a><br /><br /><div>Since I've been somewhat out of the blogging loop - I also received a <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Kreative</span> Blogger Award from Megan <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Oltman</span> at <a href="http://freemybrain.com/"><em><strong>Free My Brain</strong></em></a>. </div><br /><br /><br /><div></div><div>I thank you both for the awards. </div><br /><br /><br /><div></div><div>With the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Kreative</span> Blogger Award - we are to list six things that make us happy.</div><br /><div>1. My <a href="http://halfofawing.blogspot.com/"><em><strong>husband</strong></em></a> and his support</div><br /><div>2. My family at <a href="http://www.mymigraineconnection.com/"><em><strong>My Migraine Connection</strong></em></a></div><br /><div>3. Doctors that LISTEN!!!!!</div><br /><div>4. My furry babies (the 5 cats that rule my house)</div><br /><div>5. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Triptans</span>! Yes, I know - that's an obvious one, but I know a lot of you who were diagnosed and suffering before they were available. I am happy that we have them and that we will never again be without them!</div><br /><div>6. The great group of guys and gals that blog about Migraine disease and getting the truth out there! I love you all!!</div><br /><div>Now, I am to give these awards to others in the blogging community:</div><br /><div>1. Sue over at <a href="http://innerdorothy.blogspot.com/"><em><strong>Inner Dorothy</strong></em></a></div><br /><div>2. Nancy Bonk for her great <a href="http://www.healthcentral.com/migraine/c/202/"><em><strong>Share Posts</strong></em></a> </div><br /><div>3. Arabella at <a href="http://migrainetruth.wordpress.com/"><em><strong>Migraine Truth</strong></em></a></div><br /><div>4. <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Leeloo</span> at <a href="http://aloofelf.blogspot.com/"><em><strong>Journey of a <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Migraineur</span></strong></em></a></div><br /><div>5. <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Abi</span> at <a href="http://abimigraines.blogspot.com/"><em><strong><span class="blsp-spelling-error" id="SPELLING_ERROR_9">Abi's</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Migrainous</span> Wanderings</strong></em></a></div><br /><div>6. MW over at <a href="http://sparklingwithcrystals.blogspot.com/"><strong><em>Sparkling with Crystals</em></strong></a></div><br /><div>Thank you all!!!!</div></div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-5950930878875238612008-11-20T17:00:00.000-05:002008-11-20T17:00:00.981-05:00My New Migraine Specialist!<a href="http://i285.photobucket.com/albums/ll45/DevastateJensen/LOL%20Cats/Determination.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 333px; CURSOR: hand; HEIGHT: 479px" alt="" src="http://i285.photobucket.com/albums/ll45/DevastateJensen/LOL%20Cats/Determination.jpg" border="0" /></a><br /><div>When I see a new doctor, I try very hard not to get my hopes up too high because, usually I am let down.</div><br /><div></div><br /><div>This was not the case with the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Migriane</span> Specialist I saw yesterday. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Mascellino</span> was wonderful! She is taking me off the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Lexapro</span> - she was excited to see that I wanted to try <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Zonegran</span>, since I'd done well on <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Topamax</span> for a little over a year. So, once I can get to the pharmacy, I'll be starting <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Zonegran</span>! Of course - even though I had called the other <span class="blsp-spelling-error" id="SPELLING_ERROR_6">neuro's</span> office that I had been seeing for about a year like 3 times before this appointment to make sure they sent over my records - they, of course had not. </div><br /><div></div><br /><div>She called over and got everything faxed over while I was there so she could review what had been done previously - it took two calls because the first they only send old <span class="blsp-spelling-error" id="SPELLING_ERROR_7">neruo's</span> office notes and did not <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">include</span> the lab work I'd had. So the next call was for them to send the REST of my file.So - full <span class="blsp-spelling-error" id="SPELLING_ERROR_9">neuro</span> work up and here is what we are doing:</div><br /><div></div><br /><div>Tapering off <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Lexapro</span> and starting <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Zonegran</span> - which can be done at the same time. (She said <span class="blsp-spelling-error" id="SPELLING_ERROR_12">tryciclics</span> and anti depressants are not her fist line of prevention - and are a last resort.) She also said no <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Verapamil</span> for me since I had a hard time with <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Inderal</span>, and although they are <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">different</span> classes of drugs, with my <span class="blsp-spelling-error" id="SPELLING_ERROR_16">BP</span> on a normal/low - she didn't want to go that way.</div><br /><div></div><br /><div>We are keeping the <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Frova</span>, <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Xanax</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Zanaflex</span> since they all work like a charm for me. She switched my rescue from <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Vicodin</span> to <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Vicoprofen</span>? I am not too familiar with that one, but it is the same <span class="blsp-spelling-corrected" id="SPELLING_ERROR_22">strength</span> as the <span class="blsp-spelling-error" id="SPELLING_ERROR_23">Vicodin</span> with a different make up. I had stressed my concern w/ <span class="blsp-spelling-error" id="SPELLING_ERROR_24">MOH</span> which I usually get from <span class="blsp-spelling-corrected" id="SPELLING_ERROR_25">Acetaminophen</span>. </div><br /><div></div><br /><div>She is adding in <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Parafon</span> Forte for my <span class="blsp-spelling-error" id="SPELLING_ERROR_27">TTH</span> as needed and also ordered all new blood work with metabolic work up, check my vitamin D since I've been taking 1000 <span class="blsp-spelling-error" id="SPELLING_ERROR_28">IU</span> since June. She also ordered <span class="blsp-spelling-error" id="SPELLING_ERROR_29">MRI's</span>, <span class="blsp-spelling-error" id="SPELLING_ERROR_30">MRA's</span> with and without contrast. I will be doing that later, once they are <span class="blsp-spelling-error" id="SPELLING_ERROR_31">precerted</span>.</div><br /><div></div><br /><div>All in all - I really like her! She was surprised that I had tried so little as far as preventives, seeing as I've been going to a neurologist in some form or another for 10 years. She said "don't worry - there are <span class="blsp-spelling-error" id="SPELLING_ERROR_32">soooo</span> many more we can try!!" (That's when I pulled out <a href="http://www.healthcentral.com/migraine/medications-161082-5.html" target="_blank">Migraine Preventive Options: Too Many To Give Up!</a> and said, "Yes, I know!" She loved the list! I don't know if she is familiar with <a href="http://www.mymigraineconnection.com/"><strong><em>My Migraine Connection</em></strong></a>, but when I see her next month I'm going to pass it along to her. </div><br /><div></div><br /><div>She is also the first doctor to want to COPY my <a href="http://www.healthcentral.com/migraine/tools-190553-5.html" target="_blank">Migraine and Headache diary</a> which is wonderful because having it in my file and looking at it is a heck of a lot better then skimming it for a second like all the others did, if they even cared!</div><br /><div></div><br /><div>Shawn came with me and thought she was good too. I was happy he was there, because he brought up things I forgot about. Also, it was great to have her ask if during my Migraines I get weakness or tinging - she was checking to see if I had <a href="http://www.healthcentral.com/migraine/types-of-headaches-38571-5.html" target="_blank"><span class="blsp-spelling-error" id="SPELLING_ERROR_33">Hemiplegic</span> Migraine</a> which was great, since I don't think any of the other doctors I'd seen previously ever asked! They also never ordered any testing what so ever - I had to request blood work with my last <span class="blsp-spelling-error" id="SPELLING_ERROR_34">neuro</span>.I think that is about it! </div><br /><div></div><br /><div>She is really nice and does know her stuff! I was really impressed considering I had not heard of her before.So, she wants to see me in a month, just to touch base and see how I am doing with the <span class="blsp-spelling-error" id="SPELLING_ERROR_35">Zonegran</span>. I think that is great too!</div><br /><div></div><br /><div>So we will see how it goes! I will keep you posted once I get my testing all done.</div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com8tag:blogger.com,1999:blog-6354919626925114303.post-8240406325123568432008-11-17T18:52:00.002-05:002008-11-17T19:05:12.327-05:00E is for.....<a href="http://s99.photobucket.com/albums/l285/jadegreen11/?action=view&current=decorated_letter_e_500-1.jpg" target="_blank"><img src="http://i99.photobucket.com/albums/l285/jadegreen11/decorated_letter_e_500-1.jpg" border="0" alt="Photobucket" /></a>Education! Education! Education! - the more you know about Migraine as a patient, the better treatment you can get for yourself. I am going to have shirts made that say "Everything I've learned, I've learned from Teri Robert!" Seriously! Her book <strong><em>Living Well with Migraine Disease and Headaches</em></strong> changed my life! Her friendship and constant support has changed my life. Pick up her book through Amazon.com - and visit her at <a href="http://www.mymigraineconnection.com/"><em><strong>My Migraine Connection</strong></em></a>!<br /><br /><a href="http://www.healthcentral.com/migraine/tools-195672-5.html"><strong><em>ER Treatment Forms</em></strong></a> - <a href="http://www.terirobert.com/"><em><strong>Teri Robert</strong></em></a> came up with these forms when dealing with uncooperative ER staff, or just the ER in general - and will also have a protocol in place as how your doctor wants the ER staff to treat you, if you need to go to the ER.Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-83577681106474803182008-11-01T22:15:00.003-04:002008-11-01T22:18:35.114-04:00A Confession.....I think I was a little too ambitious with the ABC's thing. I will get back to it. I have had no time and quite honestly feel like a truck hit me more often then not.<br /><br />I sit home again tonight, in pain, while my friends are at a Halloween party.<br /><br />I am just tired of being sick. I know it will get better. It's just that the right now - sucks out loud!!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com4tag:blogger.com,1999:blog-6354919626925114303.post-6730476812521742682008-10-13T18:19:00.004-04:002008-10-13T18:58:53.087-04:00D is for....<div>Depression - Almost half of Migraineurs experience depression. Why wouldn't we? Being in pain more days then not can get very depressing and lonely. Not to mention some of the preventive medications we can use have depression as a possible side effect. <a href="http://www.terirobert.com/"><em><strong>Teri Robert</strong></em></a> has written about Depression and Migraine being co morbid - meaning you can have both, but one does not need to exist for the other.</div><br /><div></div><br /><div><a href="http://www.healthcentral.com/migraine/news-196401-66.html"><em><strong>Depression Common in Headache Sufferers</strong></em></a></div><br /><div></div><br /><div><a href="http://www.healthcentral.com/migraine/news-159319-5.html"><em><strong>Depression in Woman with Migraine Linked to Childhood Abuse</strong></em></a></div><br /><div></div><br /><div>If you or someone you know suffers from depression, HealthCentral has a site for this as well. It's at <a href="http://www.healthcentral.com/depression/?ic=1102">My Depression Connection</a>. Depression is not something to fool around with. I have been battling with it since I was about 8 or 9, but not diagnosed until I was 14. </div><br /><div></div><a href="http://i99.photobucket.com/albums/l285/jadegreen11/kittie.jpg"><img style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i99.photobucket.com/albums/l285/jadegreen11/kittie.jpg" border="0" /></a><br /><div>Dehydration - This can be a huge Migraine trigger! It can also trigger a headache for those who do not have Migraine Disease. You would think the first sign of dehydration would be thirst, but nope! It's headache!</div><br /><div></div><br /><div>Diagnosis - When dealing with any new symptom or illness, it is crucial to get a proper diagnosis. Don't go guessing what you have - get to a doctor and have it checked out! You will save yourself a lot of aggravation, and maybe even your life by doing this! Trust me!</div><br /><div></div><br /><div>Disability - "According to a World Health Organization analysis, migraine alone is responsible for at least one percent of the total US medical disability burden, and severe migraine attacks are as disabling as quadriplegia." Migraine also makes up 9% of labor loss in the US alone.</div><br /><div><em>Statistics and quotes found at the <a href="http://www.allianceforheadacheadvocacy.org/letters/Headache%20Disorders%20Fact%20Sheet.doc"><strong>Alliance for Headache Advocacy Fact Sheet</strong></a></em></div><br /><div><em></em></div><br /><div>DHE-45 - Dihydroergotamine is an injectable drug used to abort Migraine. It also comes in a spray form called Migranal. This drug can be used in an IV treatment therapy as well. </div><br /><div><a href="http://www.healthcentral.com/migraine/treatment-161484-5.html"><strong><em>IV Treatment for Refractory Migraines</em></strong></a></div><br /><blockquote></blockquote>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-3416546481866715782008-10-07T18:57:00.001-04:002008-10-07T18:57:00.986-04:00C is for:<a href="http://i99.photobucket.com/albums/l285/jadegreen11/lolcats.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i99.photobucket.com/albums/l285/jadegreen11/lolcats.jpg" border="0" /></a>Cluster Headaches: Severe attacks in head pain, unilaterally, lasting 15-180 minutes. Cluster headaches can occur more then once a day. See <a href="http://www.healthcentral.com/migraine/types-of-headaches-38362-5.html"><em><strong>Cluster Headaches: The Basics</strong></em> </a>Also, for more information, visit <a href="http://www.clusterbusters.com/"><em><strong>Cluster Busters</strong></em></a>. Also, if you go to Cluster Busters, please check out the video linked on the front page.....it really puts into perspective how painful these attacks are.<br /><br /><br /><br />Caffeine: Ah, caffeine. This one can go either way for a Migraineur. It can help or make a Migraine worse. For me, I find that I end up with a Migraine if I don't drink it! Note: Caffeine Guy don't even think about commenting here!<br /><br /><br /><br />Coke Classic: The end all, be all of what I need when I feel like a truck hit me. I am not a soda drinker, but this is my all time fav!!!! It not only helps my belly feel better, but my head too!<br /><br /><br /><br />Chronic Daily Headache: or CDH - is a headache more then 15 days in a month. <a href="http://www.healthcentral.com/migraine/types-of-headaches-38369-5.html"><em><strong>See Chronic Daily Headache: The Basics</strong></em></a>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-38100822334124681002008-10-06T18:29:00.002-04:002008-10-06T18:57:39.142-04:00B is for:<div><br /><div><a href="http://www.healthcentral.com/migraine/types-of-headaches-40278-5.html"><em><strong>Basilar-type Migraine</strong></em></a>: BTM is a type of Migraine, a little more difficult to treat then some other Migraine or Migraine with aura Migraineurs. This is because most of the medications used to abort Migraines, are contradicted for BTM. Symptoms of Basilar-type Migraine may mimic other types of illnesses, so it is very important to rule out other possible illnesses by having a CT (CAT Scan) and/or an MRI, just to make sure there is nothing else going on.<br /><br /><div><br /><br /><div>Migraineurs suffering from BTM should wear an ID bracelet in case of emergency, since the symptoms of an attack can mimic other health issues.</div><br /><br /><br /><div><strong><em><a href="http://i99.photobucket.com/albums/l285/jadegreen11/botox.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand" alt="" src="http://i99.photobucket.com/albums/l285/jadegreen11/botox.jpg" border="0" /></a>Botox:</em></strong> I'm sure you all know what this is! Yes, it's not only used for cosmetic reasons anymore! It has shown great success with tension-type headache and other conditions. It is not exactly administered they way it would be if being used for cosmetic reasons. Botox for Migraine and TTH is shot not only in the forehead, but around the jaw, and also in the back of the neck.</div><br /><br /><div>If you are thinking of Botox for Migraine, please check out the following links:</div><br /><br /><div><a href="http://www.healthcentral.com/migraine/medications-2401-109.html"><em><strong>Treating Migraines with Botox?</strong></em></a></div><br /><br /><div><a href="http://www.healthcentral.com/migraine/medications-251202-5.html"><em><strong>Intradermal Botox for Migraine, Headache, Pain Disorders</strong></em></a></div><br /><br /><div>Just a fair warning though - there may be a lot of back and forth with your insurance, if you decide to go this route. So be prepared.</div><br /><br /><br /><br /><div></div><br /><br /><br /><br /><div></div></div></div></div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com7tag:blogger.com,1999:blog-6354919626925114303.post-82383827351748390892008-09-28T13:35:00.004-04:002008-09-28T13:35:00.575-04:00A is for:<div id="ms__id6586"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwIWfEeNSGP5CEJgXoqWxNZefEdv1bdkXSrekwjwKEPetIGpoaLy2zreF93UR7gsbWJzoKbxrN5nCWFyxjszuUeOSMrg_MoZ6FOmC0Hu46MMYRJiXtS-7kEuuZ7SVH8PG0VB5og-eMUm8/s1600-h/1a.gif"><img id="BLOGGER_PHOTO_ID_5250772679529012434" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwIWfEeNSGP5CEJgXoqWxNZefEdv1bdkXSrekwjwKEPetIGpoaLy2zreF93UR7gsbWJzoKbxrN5nCWFyxjszuUeOSMrg_MoZ6FOmC0Hu46MMYRJiXtS-7kEuuZ7SVH8PG0VB5og-eMUm8/s200/1a.gif" border="0" /></a><br /></div><div id="ms__id9485"><div id="ms__id6577">Aura: Only about 25% of Migraineurs experience an aura. An aura can be different things to different sufferers. Visual issues such as flashing lights, floaters, zig zag's, blurry vision or even loss of vision. My friend <a href="http://www.raingem.com/2008/09/visual-migraine-aura-simulator.html" target="blank"><strong><em>Rain</em></strong></a> just found a great video on aura, which you can see <a href="http://www.knownjohnson.com/?p=73" target="blank"><strong><em>HERE</em></strong></a>.</div><br /><div id="ms__id6581"></div><br /><div id="ms__id6578">Abortives: Abortives are medications that actually abort a Migraine attack. There are quite a few options in abortives right now, including Triptans (<a href="http://www.healthcentral.com/migraine/find-drug-33-150.html"><strong><em>Amerge</em></strong></a>, <a href="http://www.healthcentral.com/migraine/find-drug-63-150.html"><em><strong>Axert</strong></em></a>, <a href="http://www.healthcentral.com/migraine/find-drug-25220-25.html"><em><strong>Frova</strong></em></a>, <a href="http://www.healthcentral.com/migraine/find-drug-1069-150.html"><em><strong>Imitrex</strong></em></a>, <a href="http://www.healthcentral.com/migraine/find-drug-1116-150.html"><em><strong>Maxalt</strong></em></a>, <a href="http://www.healthcentral.com/migraine/find-drug-25358-25.html"><em><strong>Relpax</strong></em></a>, Treximet, and <a href="http://www.healthcentral.com/migraine/find-drug-1407-150.html"><strong><em>Zomig</em></strong></a>). Then there is <a href="http://www.healthcentral.com/migraine/find-drug-1133-150.html"><em><strong>Migranal</strong></em></a>, DHE, and newly back on the market, <a href="http://www.healthcentral.com/migraine/find-drug-48302-73.html"><strong><em>Ergomar</em></strong></a> which are Ergotamines. And last but not least, <a href="http://www.healthcentral.com/migraine/find-drug-1132-150.html"><em><strong>Midrin</strong></em></a>, which is a combination of Acetaminophen, Isometheptene, and Dichloralphenazone. Abortives can come in many forms such as pill, capsule, indictable, IV therapy, nose spray, and even wafers. Not all abortives are available in each form, click the links for more info on them.</div><br /><div id="ms__id6583"></div><br /><div id="ms__id6582">Alice in Wonderland Syndrome: Given the name because of famous Migraineur Lewis Carroll's book, Alice and Wonderland. This is a specific type of aura that can make a person feel like they are too big or too small. <a href="http://www.terirobert.com/"><em><strong>Teri Robert</strong></em></a> just recently wrote a great article on this: <a href="http://www.healthcentral.com/migraine/types-of-headaches-251140-5.html"><em><strong>Alice in Wonderland Syndrome: The Basics</strong></em></a><em><strong>.</strong></em></div><br /><div id="ms__id6584"></div><br /><div id="ms__id6580">Aphasia: The inability to speak or trouble speaking. Also may affect comprehension of words.</div><br /><div id="ms__id6585"></div><br /><p>Allodynia: Sensitivity to touch. </p><br /><p><br /><a href="http://anodynepaincare.org/Clinic_Staff.htm"><strong><em>ANODYNE Headache and PainCare</em></strong></a><strong><em>:</em></strong> This is where, IMO, the top Migraine and Headache Specialist set up shop. <a href="http://anodynepaincare.org/Clinic_Staff.htm#John_Claude_Krusz,_PhD,_MD"><em><strong>Dr. John Claude Krusz's</strong></em></a> office is located in Dallas, Texas. Dr. Krusz is know for IV therapy and treating the patient, not just the Migraine disease.</p><p><a href="http://www.allianceforheadacheadvocacy.org/"><strong><em>Alliance for Headache Disorders Advocacy</em></strong></a> (AHDA): A group of Doctors, patient advocates and patients working together to raise awareness and funds for Migraine research.</p><br /><p>ADVOCACY!!!!!: <a href="http://www.terirobert.com/"><em><strong>Teri Robert</strong></em></a>, the top Migraine Advocate! Advocacy is empowering yourself, sticking up for yourself, and teaching others to do the same. It's fighting for a cause. It's busting your butt, it's having a great passion for something. This is how I view the word Advocacy.</p><br /><p></p><br /><p>Wow - "A" is a big one! I didn't do them all, because you would lose interest in reading them, and I also wanted to give you, the readers a chance to add your own! Please feel free to add any other "A" words you feel fit in with Migraine, and give a definition.<br /></p></div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com0tag:blogger.com,1999:blog-6354919626925114303.post-17162545881312398312008-09-27T13:25:00.002-04:002008-09-27T13:33:36.462-04:00The ABC's of Migraine<div id="ms__id4892">So my friend Marijke Durning, RN over at <a href="http://www.helpmyhurt.com/" target="blank">Help My Hurt</a>, did a nice <a href="http://www.helpmyhurt.com/2008/06/30/the-abcs-of-pain/" target="blank">ABC's of Pain</a> blog post over the summer. Everyday during the ABC's posting, Help My Hurt had a new letter in the alphabet and what went along with it in the "ABC's of Pain".<br /><br />I thought this was a great idea! Yep, so therefore, I am shamelessly stealing it! Well, not really, I'm just taking the great idea and making it all about Migraine!<br /><br />I think this will help me post more often, having to have a daily entry.....<br /><br />So, kids, starting tomorrow will be the first entry in my ABC's of Migraine posting!!!!</div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com1tag:blogger.com,1999:blog-6354919626925114303.post-49828891135777463772008-09-22T20:36:00.004-04:002008-09-22T21:11:22.188-04:00Cymbalta and a night in the ER<div id="ms__id2148"><br /><div id="ms__id2094"><br /><br /><div id="ms__id2071">My neuro and I discussed a new preventive Migraine medication for me last week. We decided on <a href="http://www.healthcentral.com/anxiety/find-drug-25164-25.html">Cymbalta</a>. I thought great!, Cymbalta is weight neutral, if not that, it may help me lose a few lb's....low libido side effects, and can help me to not have Migraines! Where to I sign up??!!</div><br /><br /><div id="ms__id2072"></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFPwsCSEWpqIC9hO1_zX9C5rInWHlSua-3esJrcOpRueqbzV2rZ8k8pv33STW4Sa23etyyg2-TW5BWIsu_ueWjt4ekKtzyhjN-Cy-2AiLN2mWhHACWbbWPwsXSaLkwTbZAw85FBYvJB4/s1600-h/CIMG0453.JPG"><img id="BLOGGER_PHOTO_ID_5249017300451569938" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFPwsCSEWpqIC9hO1_zX9C5rInWHlSua-3esJrcOpRueqbzV2rZ8k8pv33STW4Sa23etyyg2-TW5BWIsu_ueWjt4ekKtzyhjN-Cy-2AiLN2mWhHACWbbWPwsXSaLkwTbZAw85FBYvJB4/s200/CIMG0453.JPG" border="0" /></a><br /><div id="ms__id2073">So Dr.G gave me a nice supply of samples, a months worth to be exact. I thought this was great. I went to dinner at my in-laws that night....had a great night, came home and took my first dose of Cymbalta. I went to sleep with no problems at my normal early bird bed time of 10 p.m.</div><br /><br /><div id="ms__id2090"></div><br /><div id="ms__id2074">Then everything changed. I woke up from a dead sleep at midnight and could feel the color drain out of my body. I had the worse nausea I've ever had in my entire life!!!! I got up, ran to the bathroom to get sick and didn't leave the bathroom for four hours straight!!!</div><div id="ms__id2076"> </div>I woke up Shawn at 4:45 in the morning to have him take me to the ER. By this time, I'm in some sorry shape. I was in the "bargaining phase". I would have given up my right arm at this point just to stop vomiting.<br /><br /><br /><div id="ms__id2092"></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp4lreKnVepvjoqpS4DBGgO-sQys7m1DkavA0ryRHlDIWEKYZwcUJU6d_cI0KQgNwQbq61M_5TzDco8Our8y9XjH3jI-c9Ifab78rKaCbFj_Nd7PyZAx66Z9n6QvSu2-7tPgQoKmwClKg/s1600-h/CIMG0434.JPG"><img id="BLOGGER_PHOTO_ID_5249015698857546738" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp4lreKnVepvjoqpS4DBGgO-sQys7m1DkavA0ryRHlDIWEKYZwcUJU6d_cI0KQgNwQbq61M_5TzDco8Our8y9XjH3jI-c9Ifab78rKaCbFj_Nd7PyZAx66Z9n6QvSu2-7tPgQoKmwClKg/s200/CIMG0434.JPG" border="0" /></a>Got to the ER (one that my doctors work for) and there was no one in registration. Being that I know my way around, I walked into the ER and just asked for help. I was stark white. Now for some of you who know me, you think "what else is new, you're pale!" But no, this was different. I had NO color. It was almost as if my freckles were gone too!!!<br /><br /><div id="ms__id2079"></div><br /><br /><div id="ms__id2080">I get to my hospital bed and Nurse Julie comes in to take my vitals and info that I didn't get to give at registration. In goes an IV - blood work, then saline. Everything came back normal. I get 2 doses of Zofran and I'm out the door. </div><br /><div id="ms__id2083">I get home, get a little rest.....call my boss, the insurance company and my doctor that scripted the Cymbalta. The nurse says Dr. G will call me back. </div><br /><div id="ms__id2085">Ten minutes later, the nurse calls me back and says Dr. G says cut the pill in half and try that. Um, hello....I was just up all night violently ill from this drug and you want me to keep taking it!!!???!!! Then I say I can't cut it in half, it's a capsule with little beads or powder in it. The nurse goes to double check - yep, cut it in half.</div><br /><div id="ms__id2086">I was shocked! The packaging says "Do NOT crush, split, open or bite. Swallow Whole". So now I don't know what to do. I have not taken the Cymbalta since, and have called the pharmacist who also says not to split it. </div><div id="ms__id2087"> </div>Since this happened, I also got curious to see if anyone else had this type of reaction. OH YES! I found a <a href="http://www.cafepharma.com/boards/archive/index.php/">forum</a> of sorts that all the drug reps can go and chat......the Eli Lilly reps, the company who makes Cymbalta - well the reps nicknamed the drug CymBARFa because of it's nasty little side effect.<br /><br /><div id="ms__id2063">No wonder I would lose weight on this drug - I can't keep anything down!!!!!</div><br /><div id="ms__id2066">So Cymbarfa, oops! Cymbalta - is not the drug for me. I am scared to try it again because I don't want to end up back in the ER. </div><br /><div id="ms__id2068">I am back with no preventive for the time being and also some wacky ear infection (well, the dr. said it's only fluid but gave me an antibiotic anyway). Since this happened I've been having odd Migraines. They are not ping ponging (switching sides each Migraine), they are all on the right and the pain goes down to my shoulder. I really hope the ear issue is the reason behind this and that it stops quickly.</div><div id="ms__id2070"> </div><div id="ms__id2204">Also, I should mention - there are a lot of people out there who get great relief from Cymbalta, both as a Migraine preventive and as an antidepressant. I'm just not one of those people.</div></div></div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com18tag:blogger.com,1999:blog-6354919626925114303.post-63945843621476644072008-09-08T19:28:00.005-04:002008-09-08T19:55:39.259-04:00Invisible Illness Week Starts TODAY!<div id="ms__id830"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTT5we3bWdFI8zCy5HfA7iiMuc7YR8SgAZxX8_ITCMj1HZc4CSQOc2W4R3P1JRztczeM6xb0IHGgxPkKlruXvGgfcW9ZuzJedbjqXnCoDiUs9PR9XPFWovrCmvzFQCLHtoSBEYaSJLi7U/s1600-h/New+Image.JPG"><img id="BLOGGER_PHOTO_ID_5243802606089514498" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTT5we3bWdFI8zCy5HfA7iiMuc7YR8SgAZxX8_ITCMj1HZc4CSQOc2W4R3P1JRztczeM6xb0IHGgxPkKlruXvGgfcW9ZuzJedbjqXnCoDiUs9PR9XPFWovrCmvzFQCLHtoSBEYaSJLi7U/s200/New+Image.JPG" border="0" /></a><br /><br /><div id="ms__id793">Today is the start of Invisible Illness week. </div><br /><br /><div id="ms__id812"></div><div id="ms__id813">I was reminded way too much recently that I have an invisible illness. I suffer from Migraine Disease. I also suffer from Depression. </div><br /><div id="ms__id794">The Depression may come and go, but the last couple weeks were just awful. It was brought back on by a drug, Inderal, that I was taking as a preventive for my Migraine Disease.</div><br /><div id="ms__id816">Yes, sometimes the drugs we take have adverse side effects that seem to put us back a few steps. I spoke with my doctor today and I am tapering off of it and seeing him next week.</div><br /><div id="ms__id817">And just for those of you who may think that living healthy or breathing deep will "cure" Migraines - I already do all of that. </div><br /><div id="ms__id797">I tried the natural approach for almost a decade as my Migraines got progressively worse. I hated the thought of having to be on a drug for the rest of my life. I tried to just suffer though an attack - not even take Advil - and you know where it got me? In the doctors office for some preventive medication!</div><br /><div id="ms__id795">If those things work for you - I really am truly happy for you. But please don't preach to me how your way is the ONLY way - I've tried it. The only way I can even somewhat function in my daily life at this time is with preventive medication. </div><br /><div id="ms__id799">Yes, we Migraineurs get a slew of different reasons thrown at us as to why what we are doing is not the right approach. That I can think of off hand, I've been told "no more caffeine", "get pregnant", "breathe deeply and relax", "try chiropractic", "try holistic healing".</div><br /><div id="ms__id801">Ya wanna know something people: <strong>I've tried it all!!!!! </strong>Well, except for the getting pregnant one. That one will have to wait for a very long time.</div><br /><div id="ms__id807">Having an invisible illness is a sad and lonely thing to go through in life. It take so much some days for me to wake up and face the day. I take a handful of supplements every morning, on top of my preventive medication. So it's not like I'm taking just the preventive. I take 6 different pills before my preventive, and that's just vitamins and minerals.</div><div id="ms__id805"> </div>Sometimes we all just want to scream <strong>SHUT UP</strong> to the "have you tried" and "you are attached to your pain" people.<br /><br /><div id="ms__id803">Walk a mile in my shoes and tell me that what I'm doing is wrong. Tell that to anyone with Cancer, Fibromyalgia, Diabetes, Depression, or Chronic Fatigue Syndrome. <strong>It SUCKS!!!</strong></div><br /><div id="ms__id802">But, as my favorite saying goes:</div><br /><div id="ms__id810"><strong><em>"The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." </em></strong>Ben Okri</div><br /><br /><div id="ms__id823"></div><div id="ms__id821">I will be greater then my suffering. This disease has made me want to make a difference for myself and for others. </div><br /><img id="BLOGGER_PHOTO_ID_5243802742742455394" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2MMqeMWATZw7RfQccpsF2UHCGlVFwpCRG_x2uewjoMJ8kw01sNH1j-94jhfJk0HGQ_8tCzh1SoB_QCX_E8HIrXJgafiEL2x9KiqgUhNfFKdCUkzLgWDvtl0eT661rGgAL2-ozdMlkJIY/s200/08ii_bloggingforiiweekbutton.gif" border="0" />Awareness is key. I intend to fight for a cure, to fight for better doctors, and fight for all of us out there suffering. "Safety in numbers" as they say. Together we will change the face of Invisible Illness.</div>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3tag:blogger.com,1999:blog-6354919626925114303.post-78207852994211389722008-09-04T08:35:00.003-04:002008-09-04T08:57:45.737-04:00Using a capital M<img style="WIDTH: 140px; HEIGHT: 169px" height="550" alt="Photobucket" src="http://i99.photobucket.com/albums/l285/jadegreen11/letterm2.jpg" width="239" border="0" />My lovely friend over at <a href="http://www.mymigraineconnection.com/" target="blank">My Migraine Connection</a>, number one patient advocate (yes, that's right, she rocks!), <a href="http://www.terirobert.com/" target="blank">Miss Teri Robert</a>, has written an awesome Share Post about the capital M.<br /><br />What is the capital M you ask? Well, it's the first letter in the word Migraine!<br /><br />I've spoke to Teri about this before, and I am in total agreement. Migraine should be capitalized!!!! It should not have to do with a person's name, if it is a disease, it should be capitalized! At least this is my feeling on the subject.<br /><br />If you would like to read Miss Teri's Share Post, and I know you do!!, you can check it out: <a href="http://www.healthcentral.com/migraine/c/123/39548/migraine-capital" target="blank">Migraine with a capital M</a>Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com1tag:blogger.com,1999:blog-6354919626925114303.post-58241805705449952992008-08-27T18:24:00.003-04:002008-08-27T19:18:36.193-04:00Seems like everyone has advice....Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.<br /><br />Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.<br /><br />For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".<br /><br />Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.<br /><br />You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.<br /><br />It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.<br /><br />The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.<br /><br />Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!<br /><br />I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.<br /><br />So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.<br /><br />There are a lot of great organisations and support out there if you suffer from Migraine:<br /><br /><a href="http://www.mymigraineconnection.com/" target="blank">My Migraine Connection</a><br /><br /><a href="http://www.allicanceforheadacheadvocacy.org/" target="blank">The Alliance for Headache Disorders Advocacy</a><br /><br /><a href="http://www.migraines.org/" target="blank">MAGNUM</a><br /><br /><a href="http://www.migraineresearchfoundation.org/Welcome.asp" target="blank">The Migraine Research Foundation</a><br /><br /><a href="http://www.headaches.org/" target="blank">The National Headache Foundation</a><br /><br />Oh, and I can't pass by this little tid bit either.<br /><br />If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of <a href="http://www.terirobert.com/" target="blank">Teri Robert's</a> Friends and Family <a href="http://www.helpforheadaches.com/lwfiles/family-mig-letter.htm" target="blank">Letter</a> and help educate them!<br /><br /><embed src="http://static.ning.com/illnessministry/widgets/video/flvplayer/flvplayer.swf?v=3.5.5.3%3A7317" FlashVars="config_url=http%3A%2F%2Fillnessministry.ning.com%2Fvideo%2Fvideo%2FshowPlayerConfig%3Fid%3D847406%253AVideo%253A5%26x%3DRKKm0wgc5UaFw701qgrZHS9oC4DAbHuB&video_smoothing=on&autoplay=off" width="448" height="364" scale="noscale" wmode="transparent" allowScriptAccess="always" allowFullScreen="true" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"> </embed> <br /><small><a href="http://illnessministry.ning.com/video/video">Find more videos like this on <em>Illness-Disability-Healthcare-Caregiver Ministry Network</em></a></small><br /><br /><br />I just wish for those who don't understand to maybe think before they make comments.Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com5tag:blogger.com,1999:blog-6354919626925114303.post-33078073329830361802008-08-26T08:44:00.001-04:002008-08-26T08:46:06.038-04:00Shop for a cause!!!The Migraine Research Foundation has teamed up with Macy's shop for a cause event!!<br /><br />I received an email about it today!<br /><br />"Shopping Shouldn’t Be A Headache!<br /><br />MRF is proud to announce its new partnership with Macy’s Shop For A Cause <br /><br />MRF is selling shopping passes to Macy’s Shop For A Cause. For only $5, you get a coupon for up to 20% off (exclusions apply) at all Macy’s stores and online on Saturday, September 20. To buy a pass, send $5 to the Migraine Research Foundation, 300 E 75th Street Suite 3K, New York NY 10021 or visit http://www.migraineresearchfoundation.org/Donations.asp (put “Shop for a Cause” in the comment field). Please include the address where we should mail your pass.<br /><br />All of the money raised will go directly to the Migraine Research Foundation!"<br /><br />So if you need to get your shop on, why not do it for a cause that is very near and dear to us??!!Eileenhttp://www.blogger.com/profile/06523624189939691422noreply@blogger.com3