This past October was literal hell. I ended up in a bad cycle and did everything to stop the pain. Steroids didn't work. Pain medications didn't work. Eventually I made it to the specialist with a screaming head, who gave me an infusion, whose work lasted all of 1 day. I've been test driving Darvocet for a week now and it seems to work better right now over my usual Vicodin. It makes me very sleepy, however.
I also had another TEE to look at my PFO. There is some confusion regarding the results of my TEE and the last TCD I had. My TEEs have shown that there is little shunting through my PFO, while the TCDs show that there is significant shunting happening someplace.
So, on December 1st, my new cardiologist has agreed to an IntraCardiac echo look at what's going on, and fix it if he can. One of my migraine specialists will be on hand to perform another TCD so that they can get a better look at the shunting. Is it another hole? The same one? Is my blood shunting through the St. Jude's device? We don't know.
I can only hope that this is a resolution of the problems I have had for years now. It's hard not to get overly hopeful; everyone wants to run from migraine pain in any way they can. It's why the snake oil industry works so well, and will continue to work well until people understand the truth about migraines.
I want this to be the option that brings me back to my life. I look with dread to finishing my social security application, because I've known forum members who have been denied disability because they post too much on the internet, which is ridiculous considering that the disease is different for everyone, and most of us need a link to the outside world since we are unable to get out in it as much as we'd like to. We've lost our lives to a disease we have no control over, and SS would like for us to have less control in order to qualify for disability. I don't want to leave my blog and my forums, which I may have to do anyway, if this option fails.
Tuesday, November 17, 2009
Thursday, October 15, 2009
When Invisible Illness is Discriminated Against
On MMC last week, a newer member posted this thread: Handicap Signs: Yes, There are Ignorant People!
It's a topic in which she describes the dirty looks and comments she receives from passersby as she uses her handicapped placard to her advantage (and her right), as a person suffering from Migraine Disease. Not only does she have Migraines, but she has a different form called Hemiplegic Migraine: Familial Hemiplegic Migraine and Sporadic Hemiplegic Migraine
Hemiplegic Migraine can cause a sufferer to go through stroke like symptoms, including half-side paresis, slurred speech, or other frightening symptoms. It can be very distressing for the sufferer and they may be unable to tell someone what is happening.
This member came back to her vehicle to find a note which read "YOU ARE BEING REPORTED FOR A HANDICAP VIOLATION".
WHY?
Because the individual who left the note could not see this woman's disability. She looked at a woman who could walk, and she thought she was cheating the system; using a spot that someone else who was "really" disabled could have used.
It struck me as funny when, on the Tyra Banks show last week, she talked to overweight women and how obesity was the last line of acceptable harassment and discrimination in the United States. I'm sorry, but it isn't. Persons trying to cope with invisible illnesses are just as put upon by people who don't understand their suffering. They are judged by people who won't stop to ask what is going on. Not that they should, because it isn't their business, but if I park in a handicapped spot with a perfectly legal tag, and you shoot me dirty looks because I can walk just fine, you know what? I'm going to ask you what the hell your problem is and why is it your business?
Sadly, I don't think anyone should have to go through a confrontation like that simply to defend their right to use a handicapped space. There are plenty of heart patients and cancer patients with whom disease is not apparent; we seem to think handicapped placards or plates are reserved only for the elderly who can't walk.
Instead of being enraged at someone's legal handicap placard when it's clear that individual can walk, because you don't know what their story is, be enraged instead at the individuals who use those spots for their own interests when they have neither tag nor plate.
I have no tags nor any plates that indicate I am disabled. I can still walk the parking lot to get to where I am going for the most part. And for the most part I do not run errands by myself anymore because I don't know what will happen to me while I am out by myself. However, I would never use the disabled spots because they are in place for people who need a shorter walk to the store for whatever reason. I get tired after just walking the mall. Some people get tired after less steps. It's not up to us to judge these people, but to ask them if they need help with anything, or, better yet, just let them get their things and get out so that they can go home and reserve their energy for their families.
It's a topic in which she describes the dirty looks and comments she receives from passersby as she uses her handicapped placard to her advantage (and her right), as a person suffering from Migraine Disease. Not only does she have Migraines, but she has a different form called Hemiplegic Migraine: Familial Hemiplegic Migraine and Sporadic Hemiplegic Migraine
Hemiplegic Migraine can cause a sufferer to go through stroke like symptoms, including half-side paresis, slurred speech, or other frightening symptoms. It can be very distressing for the sufferer and they may be unable to tell someone what is happening.
This member came back to her vehicle to find a note which read "YOU ARE BEING REPORTED FOR A HANDICAP VIOLATION".
WHY?
Because the individual who left the note could not see this woman's disability. She looked at a woman who could walk, and she thought she was cheating the system; using a spot that someone else who was "really" disabled could have used.
It struck me as funny when, on the Tyra Banks show last week, she talked to overweight women and how obesity was the last line of acceptable harassment and discrimination in the United States. I'm sorry, but it isn't. Persons trying to cope with invisible illnesses are just as put upon by people who don't understand their suffering. They are judged by people who won't stop to ask what is going on. Not that they should, because it isn't their business, but if I park in a handicapped spot with a perfectly legal tag, and you shoot me dirty looks because I can walk just fine, you know what? I'm going to ask you what the hell your problem is and why is it your business?
Sadly, I don't think anyone should have to go through a confrontation like that simply to defend their right to use a handicapped space. There are plenty of heart patients and cancer patients with whom disease is not apparent; we seem to think handicapped placards or plates are reserved only for the elderly who can't walk.
Instead of being enraged at someone's legal handicap placard when it's clear that individual can walk, because you don't know what their story is, be enraged instead at the individuals who use those spots for their own interests when they have neither tag nor plate.
I have no tags nor any plates that indicate I am disabled. I can still walk the parking lot to get to where I am going for the most part. And for the most part I do not run errands by myself anymore because I don't know what will happen to me while I am out by myself. However, I would never use the disabled spots because they are in place for people who need a shorter walk to the store for whatever reason. I get tired after just walking the mall. Some people get tired after less steps. It's not up to us to judge these people, but to ask them if they need help with anything, or, better yet, just let them get their things and get out so that they can go home and reserve their energy for their families.
Wednesday, October 14, 2009
The Agony of a 7 Day-long Migraine
Last week I was in Status. I missed an entire week of work. I am lucky that I did not lose my job.
All of this was thanks to Migraine. On Monday I was prescribed steroids. But Thursday I was still so miserable that I had a breakdown. I took a lot of medication on Tuesday; so I know I was likely in rebound too. On Friday I made an appointment to see my specialist, and had an IV infusion. My orders for Saturday and Sunday were to stay sedated with Seroquel. For the most part, this strategy worked, though I have woken up every day this week with a Migraine, I've been able to break them and keep them broken for a solid 8 hours or so. Unfortunately, my sleep has been terrible and I have been an anxious, insomniatic mess.
On Tuesday of this week I saw my new psychiatrist. I was too sick to drive myself, so my mother took me. We ended up being late due to the directions being confusing, and the paperwork took forever to fill out. My father had a history of Bi-Polar Type I, and I myself have a history of social anxiety and depression. He hesitated to diagnose me with Bi-Polar, but he didn't dismiss it either because I do have periods of hyperactivity without the Migraines contributing. Right now, though, we don't know if the hyperactivity is due to the Migraine disease process or if absent Migraine there would still be a few days where I cycled through to a crazy state. Do I think I am Bi-Polar? No. Am I depressed? Certainly. I had that breakdown on Thursday and I was in my bathroom screaming. It felt good to scream, despite the pain, I have to admit. However, I am generally a very even-keel sort of person. I don't get moody often, not even during my period. Maybe weepy, but not full-blown mood swings.
What does Bi-Polar have in common with Migraine anyway? Well, Bi-Polar may be comorbid with Migraine. In fact, more Migraineurs suffer Bi-Polar at the same time:
Migraine Disease and Bipolar Disorder, a Link
Whatever is going on upstairs, it's clear that it's going to take time to fix. I've been put on new medication, Lexapro, with Abilify. I am reluctant to come off the Zoloft and try something new, however, as the Zoloft works on my anxiety like a charm. I still may not be able to engage people in the eyes as I talk, but I can interact with them better. I can throw myself into the situation easily. Most of the time it works for my depression as well, but there are times when I think the Zoloft lets me down as well. So perhaps it's time for a change.
I'm going to jump back to last week. It was one of the most difficult weeks I have ever had. Financially, it was devastating. Emotionally, devastating. Morally, devastating. It took so much in me to want to keep on going, but I knew my warning signs and I took the initiative to make sure someone knew I was in distress on Thursday. My sister came and sat with me for a while until my Zanaflex kicked in and made me too sleepy to cry anymore. So the next time you are thinking that you can't make it, and you know yourself well enough, please make sure to reach out to someone who cares about you, and that you care about. It may not make your head pain go away, but it can save you nonetheless. Migraines have the ability to ruin everything but it's our relationships with the people who love us that are the most important to maintain, build upon, and work at. I could go into the entire spiel about people who don't understand, but there ARE people out there who don't understand but who do understand that you are in distress and cannot help yourself. It's these people that you can reach for, regardless if they understand Migraine or not. To those who do not want to help nor care to see your pain for what it is, that we reserve the phrase "they just don't get it."
All of this was thanks to Migraine. On Monday I was prescribed steroids. But Thursday I was still so miserable that I had a breakdown. I took a lot of medication on Tuesday; so I know I was likely in rebound too. On Friday I made an appointment to see my specialist, and had an IV infusion. My orders for Saturday and Sunday were to stay sedated with Seroquel. For the most part, this strategy worked, though I have woken up every day this week with a Migraine, I've been able to break them and keep them broken for a solid 8 hours or so. Unfortunately, my sleep has been terrible and I have been an anxious, insomniatic mess.
On Tuesday of this week I saw my new psychiatrist. I was too sick to drive myself, so my mother took me. We ended up being late due to the directions being confusing, and the paperwork took forever to fill out. My father had a history of Bi-Polar Type I, and I myself have a history of social anxiety and depression. He hesitated to diagnose me with Bi-Polar, but he didn't dismiss it either because I do have periods of hyperactivity without the Migraines contributing. Right now, though, we don't know if the hyperactivity is due to the Migraine disease process or if absent Migraine there would still be a few days where I cycled through to a crazy state. Do I think I am Bi-Polar? No. Am I depressed? Certainly. I had that breakdown on Thursday and I was in my bathroom screaming. It felt good to scream, despite the pain, I have to admit. However, I am generally a very even-keel sort of person. I don't get moody often, not even during my period. Maybe weepy, but not full-blown mood swings.
What does Bi-Polar have in common with Migraine anyway? Well, Bi-Polar may be comorbid with Migraine. In fact, more Migraineurs suffer Bi-Polar at the same time:
Migraine Disease and Bipolar Disorder, a Link
Whatever is going on upstairs, it's clear that it's going to take time to fix. I've been put on new medication, Lexapro, with Abilify. I am reluctant to come off the Zoloft and try something new, however, as the Zoloft works on my anxiety like a charm. I still may not be able to engage people in the eyes as I talk, but I can interact with them better. I can throw myself into the situation easily. Most of the time it works for my depression as well, but there are times when I think the Zoloft lets me down as well. So perhaps it's time for a change.
I'm going to jump back to last week. It was one of the most difficult weeks I have ever had. Financially, it was devastating. Emotionally, devastating. Morally, devastating. It took so much in me to want to keep on going, but I knew my warning signs and I took the initiative to make sure someone knew I was in distress on Thursday. My sister came and sat with me for a while until my Zanaflex kicked in and made me too sleepy to cry anymore. So the next time you are thinking that you can't make it, and you know yourself well enough, please make sure to reach out to someone who cares about you, and that you care about. It may not make your head pain go away, but it can save you nonetheless. Migraines have the ability to ruin everything but it's our relationships with the people who love us that are the most important to maintain, build upon, and work at. I could go into the entire spiel about people who don't understand, but there ARE people out there who don't understand but who do understand that you are in distress and cannot help yourself. It's these people that you can reach for, regardless if they understand Migraine or not. To those who do not want to help nor care to see your pain for what it is, that we reserve the phrase "they just don't get it."
Monday, September 28, 2009
Driving and Migraines?
Over at MMC, this post by Megan Oltman Migraines and Driving Don't Mix, highlights a problem largely under discussed. Right now there is an engaging discussion happening in one of our forum folders here: Can Migraines Affect Our Driver's License?
I will tell you right now that I am under the influence of a Migraine, vicodin, and a muscle relaxer at the moment I'm writing this. On a scale of 1-10, 10 being the highest level of impairment during a Migraine medicated with the above-mentioned drugs, then I am definitely a 10. I wouldn't be driving, and I certainly wouldn't be working. I'm writing, and struggling to keep my thoughts arranged in a manner that makes logical sense to my readers. So please forgive me if I wander off...I promise I'll come back to the path!
I'm not going to lie. I drive to work with mild migraines regularly. My pride is stubborn; I can't call my mom out every afternoon to take me to work. She lives 10 miles away. I do call her though, if I am in too much pain to drive but I think I can make it to work after medicating. I NEVER take vicodin and drive. I wouldn't take the Zanaflex and drive, either. My husband will help me too when he is home and available to do so.
However, the underlying summation here is that driving with a Migraine is akin to driving drunk. Migraineurs can and have had very serious accidents driving while in so much pain. Migraine tends to slow the brain down, and it can most certainly affect the timing of motor skills. I regularly run into walls or doors, or smack myself in the face with things. I can laugh at myself when those things happen, but it strikes fear into my heart that I have run 3 red lights and jumped an island all under the influence of a migraine. I am lucky that the lights were all late at night when no one was around, and the island? Well, let's not talk about it. I am just lucky no one was walking on it.
As a result I set myself into a hyper-vigilant mode before I get behind the wheel. This preparation is not always successful, as I tend to get lost in a very internally-directed thought pattern 99% of the time when doing routine tasks. I am terribly absent-minded because of this trait. It's useful for analyzing psychology, or writing papers, or studying the prison populations, but it's borderline deadly on the road. As a result, outside of getting myself to work, I let my husband cart my butt around. He gets to avoid my more mainstream taste in music, and I avoid killing people. It's a win/win.
Comparing driving with Migraine to drunk driving...Well, I would never drive drunk. I have NEVER driven home drunk before. Yet I drive with Migraine, and I openly admit I am an accident waiting to happen. Why do people such as myself do these things?
Well, I am enough of a burden on some people already. My work schedule is different from my husband's and if I could get one similar to his, I'd get rid of my car and just catch a ride with him. But being a burden is no excuse.
My job exists 8 miles down the service road in a straight shot, so it's an easy drive and the lights are predictable. Unfortunately the traffic is not, and I tend to get aggravated with the Sunday drivers who think it's OK to just whiz along the road at 10 miles under the speed limit. I am, however, a religious mirror checker and blinker user. I have handy-dandy bumper stickers warning people of my problems.
But it all means nothing when you are the party responsible for making sure your car doesn't meet another on that short path to work. There is no public transportation available between my residence and work, and I don't trust a lot of other people to drive.
I have to work, and I have to make money. I am barely working as it is. Losing your driving privileges is another loss of freedom when you are chronically ill. I don't go much elsewhere, and I don't put myself out for other people if I feel I can't do it.
It's times and topics like these that really push me to go for disability. I am happy just being at home. I don't need a lot of external stimuli to be happy or relieve boredom. I thrive on a quiet, peaceful atmosphere.
Migraines and driving...It makes you think, doesn't it?
What does one do to rectify this situation when it seems like there are no alternatives?
I will tell you right now that I am under the influence of a Migraine, vicodin, and a muscle relaxer at the moment I'm writing this. On a scale of 1-10, 10 being the highest level of impairment during a Migraine medicated with the above-mentioned drugs, then I am definitely a 10. I wouldn't be driving, and I certainly wouldn't be working. I'm writing, and struggling to keep my thoughts arranged in a manner that makes logical sense to my readers. So please forgive me if I wander off...I promise I'll come back to the path!
I'm not going to lie. I drive to work with mild migraines regularly. My pride is stubborn; I can't call my mom out every afternoon to take me to work. She lives 10 miles away. I do call her though, if I am in too much pain to drive but I think I can make it to work after medicating. I NEVER take vicodin and drive. I wouldn't take the Zanaflex and drive, either. My husband will help me too when he is home and available to do so.
However, the underlying summation here is that driving with a Migraine is akin to driving drunk. Migraineurs can and have had very serious accidents driving while in so much pain. Migraine tends to slow the brain down, and it can most certainly affect the timing of motor skills. I regularly run into walls or doors, or smack myself in the face with things. I can laugh at myself when those things happen, but it strikes fear into my heart that I have run 3 red lights and jumped an island all under the influence of a migraine. I am lucky that the lights were all late at night when no one was around, and the island? Well, let's not talk about it. I am just lucky no one was walking on it.
As a result I set myself into a hyper-vigilant mode before I get behind the wheel. This preparation is not always successful, as I tend to get lost in a very internally-directed thought pattern 99% of the time when doing routine tasks. I am terribly absent-minded because of this trait. It's useful for analyzing psychology, or writing papers, or studying the prison populations, but it's borderline deadly on the road. As a result, outside of getting myself to work, I let my husband cart my butt around. He gets to avoid my more mainstream taste in music, and I avoid killing people. It's a win/win.
Comparing driving with Migraine to drunk driving...Well, I would never drive drunk. I have NEVER driven home drunk before. Yet I drive with Migraine, and I openly admit I am an accident waiting to happen. Why do people such as myself do these things?
Well, I am enough of a burden on some people already. My work schedule is different from my husband's and if I could get one similar to his, I'd get rid of my car and just catch a ride with him. But being a burden is no excuse.
My job exists 8 miles down the service road in a straight shot, so it's an easy drive and the lights are predictable. Unfortunately the traffic is not, and I tend to get aggravated with the Sunday drivers who think it's OK to just whiz along the road at 10 miles under the speed limit. I am, however, a religious mirror checker and blinker user. I have handy-dandy bumper stickers warning people of my problems.
But it all means nothing when you are the party responsible for making sure your car doesn't meet another on that short path to work. There is no public transportation available between my residence and work, and I don't trust a lot of other people to drive.
I have to work, and I have to make money. I am barely working as it is. Losing your driving privileges is another loss of freedom when you are chronically ill. I don't go much elsewhere, and I don't put myself out for other people if I feel I can't do it.
It's times and topics like these that really push me to go for disability. I am happy just being at home. I don't need a lot of external stimuli to be happy or relieve boredom. I thrive on a quiet, peaceful atmosphere.
Migraines and driving...It makes you think, doesn't it?
What does one do to rectify this situation when it seems like there are no alternatives?
Tuesday, September 22, 2009
Petition to Stop the FDA from Banning Acetaminophen Products
Diana Lee over at Somebody Heal Me has posted a blog about the proposed FDA ban on acetaminophen and acetaminophen-containing products.
As most pain patients are well aware. taken responsibly, pain medication can make a positive impact on a chronic pain sufferer's life, and make their lives more fulfilling where otherwise they would be non-productive members of society.
Why does the FDA want to ban acetaminophen products? Because people have the potential to abuse it. That's right. If you don't see something wrong with this statement, I'm sure you're in a brain fog at the moment (as am I, just writing this today is tremendously taxing). Acetaminophen has been known to cause liver damage, and death when used inappropriately.
Personally, this movement smells of hypocrisy. What else causes liver damage when used in excess? Oh yeah! Alcohol! But alcohol is freely available in liquor stores and grocery stores around the country. A single night's binge could mean alcohol poisoning, or worse, death. Or drunk driving accidents. Yet to ban alcohol would mean the outraged cry of a country not allowed to make its own decisions on how it wants to spend its weekends. Thusly, we have taken measures to insure that the wrong people don't get a hold of alcohol, while trusting individuals at the same time to be responsible once they are out of the store and out of mind.
While we're at it, ban cigarettes too. They cause damage to the lungs, and sometimes they cause cancer. Yet we trust individuals know the decision and the risks they are taking when they light up.
Can you ban chocolate too? It makes me fat.
However, the crucial point here is that these medications are for people who are in pain. Chronically, or outside of a recent surgery. Take it from the patients who know - constant pain makes you an angry, depressed, anxious person with no will to do anything.
To sign the petition from the American Pain Foundation, go to: Acetaminophen: Educate, Do Not Regulate!
Diana Lee's blog is an excellent source of articles from the APF, so I'd suggest stopping by her site for more educational opportunities!
As most pain patients are well aware. taken responsibly, pain medication can make a positive impact on a chronic pain sufferer's life, and make their lives more fulfilling where otherwise they would be non-productive members of society.
Why does the FDA want to ban acetaminophen products? Because people have the potential to abuse it. That's right. If you don't see something wrong with this statement, I'm sure you're in a brain fog at the moment (as am I, just writing this today is tremendously taxing). Acetaminophen has been known to cause liver damage, and death when used inappropriately.
Personally, this movement smells of hypocrisy. What else causes liver damage when used in excess? Oh yeah! Alcohol! But alcohol is freely available in liquor stores and grocery stores around the country. A single night's binge could mean alcohol poisoning, or worse, death. Or drunk driving accidents. Yet to ban alcohol would mean the outraged cry of a country not allowed to make its own decisions on how it wants to spend its weekends. Thusly, we have taken measures to insure that the wrong people don't get a hold of alcohol, while trusting individuals at the same time to be responsible once they are out of the store and out of mind.
While we're at it, ban cigarettes too. They cause damage to the lungs, and sometimes they cause cancer. Yet we trust individuals know the decision and the risks they are taking when they light up.
Can you ban chocolate too? It makes me fat.
However, the crucial point here is that these medications are for people who are in pain. Chronically, or outside of a recent surgery. Take it from the patients who know - constant pain makes you an angry, depressed, anxious person with no will to do anything.
To sign the petition from the American Pain Foundation, go to: Acetaminophen: Educate, Do Not Regulate!
Diana Lee's blog is an excellent source of articles from the APF, so I'd suggest stopping by her site for more educational opportunities!
Sunday, September 13, 2009
Picking Myself Up
You know, some weeks are always better than others for those of us with any invisible illness. I've been left wondering where the cascade of severe migraines has come from this week.
My stomach finally came to a halt this evening. I've had stomach problems for about 5 days now, the worst of which hit on Saturday. Saturday was a day, surprisingly, that I did not have to get up and take my medications first thing. But by the time I got home, aura had struck. I napped. I couldn't avoid it. I woke up and my head was hurting. Today hasn't been much better. My husband finally woke me up about 2PM. I moved slowly, took some medications, gave my shower the least bit of effort it took to be clean, and waited for Jeremy to get back with our lunch. I had to force myself to make it to my in-laws' for dinner tonight. I am extremely tired. My in-laws are pretty awesome, and I don't put out energy for very many people, but I missed dinner with them a week ago so I did not want to miss again.
What is it about migraine that makes us so damn stubborn? We are so tired, in so much pain, that living a normal life is difficult, if not impossible, if you're chronic. But sometimes, I still think I am Supergirl and that I can make it if I just put my mind to it. I should know better. Migraines are slowing me down more than ever, so consciously or unconsciously I pick a couple of goals to achieve the next day and then that's what I try to accomplish. Not much more than that gets done...If it gets done at all.
Monday morning I have an appointment with a new cardiologist. I will likely be scheduling an Intra-Cardiac Echo with him, done by cath. On standby will be the tools to close my PFO if there is room in my heart to do so. I am putting myself through this again and again, I'm just a little worried about it. The procedure will be longer, and there's nothing quite like the migraine that brews in a hospital overnight when the nurses are checking you every couple of hours. So, I cannot say I am eager to face the cath lab again.
Will this procedure help my migraines? I don't know. That's not the point, really, but it is the point, at the same time. I just want to know that I am not wasting my time on medications I don't need (or wasting the money). I just want to know that we tried before we move on to any other treatment. I just want to know that everything was done that could be done.
I don't want to get my hopes up that this will be the end of my hell. However, having loads of doctors telling you it won't work makes you eager to prove them wrong, as well. After all, this is my life, and I have a right to live my life as well as I can under the circumstances. I want to believe that man is willing to fight for his fellow man's chance to life, that the politics involved are null and void and that there are genuine people there ready, willing to help. I have found so few angels through this trial, though who I have found has made a major difference in the way I view humanity and the way I fight my fight. So, for them, just as much as for myself, I'll go forward with this and I won't look back.
My stomach finally came to a halt this evening. I've had stomach problems for about 5 days now, the worst of which hit on Saturday. Saturday was a day, surprisingly, that I did not have to get up and take my medications first thing. But by the time I got home, aura had struck. I napped. I couldn't avoid it. I woke up and my head was hurting. Today hasn't been much better. My husband finally woke me up about 2PM. I moved slowly, took some medications, gave my shower the least bit of effort it took to be clean, and waited for Jeremy to get back with our lunch. I had to force myself to make it to my in-laws' for dinner tonight. I am extremely tired. My in-laws are pretty awesome, and I don't put out energy for very many people, but I missed dinner with them a week ago so I did not want to miss again.
What is it about migraine that makes us so damn stubborn? We are so tired, in so much pain, that living a normal life is difficult, if not impossible, if you're chronic. But sometimes, I still think I am Supergirl and that I can make it if I just put my mind to it. I should know better. Migraines are slowing me down more than ever, so consciously or unconsciously I pick a couple of goals to achieve the next day and then that's what I try to accomplish. Not much more than that gets done...If it gets done at all.
Monday morning I have an appointment with a new cardiologist. I will likely be scheduling an Intra-Cardiac Echo with him, done by cath. On standby will be the tools to close my PFO if there is room in my heart to do so. I am putting myself through this again and again, I'm just a little worried about it. The procedure will be longer, and there's nothing quite like the migraine that brews in a hospital overnight when the nurses are checking you every couple of hours. So, I cannot say I am eager to face the cath lab again.
Will this procedure help my migraines? I don't know. That's not the point, really, but it is the point, at the same time. I just want to know that I am not wasting my time on medications I don't need (or wasting the money). I just want to know that we tried before we move on to any other treatment. I just want to know that everything was done that could be done.
I don't want to get my hopes up that this will be the end of my hell. However, having loads of doctors telling you it won't work makes you eager to prove them wrong, as well. After all, this is my life, and I have a right to live my life as well as I can under the circumstances. I want to believe that man is willing to fight for his fellow man's chance to life, that the politics involved are null and void and that there are genuine people there ready, willing to help. I have found so few angels through this trial, though who I have found has made a major difference in the way I view humanity and the way I fight my fight. So, for them, just as much as for myself, I'll go forward with this and I won't look back.
Tuesday, September 8, 2009
30 Things About My Invisible Illness You May Not Know
As Teri Robert has asked, this meme is pulled down from her site:
30 things you might not know...About the illness I, and many others, live with.
1. The illness I live with is: Migraine disease, asthma, and CEBV
3. But I had symptoms since: I had Migraine syndromes as a child; AIWS and a lot of motion sickness.
4. The biggest adjustment I’ve had to make is: Leaving friends behind.
5. Most people assume: That I'm just whining. I'm not. I'm in real pain, and in real distress.
6. The hardest part about mornings is: Thankfully I don't have to worry about that most of the time.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: my iPod
9. The hardest part about nights is: The insomnia, and having to work
10. Each day I take: DHE and drink a lot of caffeine!
11. Regarding alternative treatments I: I have tried massage and meditation. I have nothing against alt treatments, but believe they should be used in conjunction with medical advice.
12. If I had to choose between an invisible illness or visible I would choose: visible, because then people take you at your word.
13. Regarding working and career: It is very difficult to work right now, and my school and career plans are on hold.
14. People would be surprised to know: That working through the pain is the most difficult part of all of this.
15. The hardest thing to accept about my new reality has been: The depression that comes with the territory.
16. Something I never thought I could do with my illness that I did was: Realize that maybe someone could take from my experience and find comfort in it.
17. The commercials about my illness: are terribly mis-informed!
18. Something I really miss doing since I was diagnosed is: Having the drive to go someplace anytime I wanted to with whoever I wanted to
19. It was really hard to have to give up: Some days with my husband
20. A new hobby I have taken up since my diagnosis is: Blogging about Migraine awareness
21. If I could have one day of feeling normal again I would: not know what to do with myself.
22. My illness has taught me: Some days are bad. Some days are worse. Some are good, and that's why I keep going.
23. Want to know a secret? One thing people say that gets under my skin is: people thinking I can take a couple of Tylenol and "get over" a Migraine.
24. But I love it when people: actually ask questions and want to understand.
25. My favorite motto, scripture, quote that gets me through tough times is: "I love you." -my husband
26. When someone is diagnosed I’d like to tell them: Be educated, don't fall for people who think they know what you're going through and how to cure it
27. Something that has surprised me about living with an illness is: I never knew how strong I was until I had to give myself injections during migraines when I could hardly fathom what I was doing
28. The nicest thing someone did for me when I wasn’t feeling well was: Helped me bathe, fixed me lunch, and let me sleep
29. I’m involved with Invisible Illness Week because: It's time people realized that many illnesses are invisible and just as debilitating as visible illnesses!
30. The fact that you read this list makes me feel: As if you want to know the truth and are ready to accept that having Migraines doesn't make you a hypochondriac.
30 things you might not know...About the illness I, and many others, live with.
1. The illness I live with is: Migraine disease, asthma, and CEBV
3. But I had symptoms since: I had Migraine syndromes as a child; AIWS and a lot of motion sickness.
4. The biggest adjustment I’ve had to make is: Leaving friends behind.
5. Most people assume: That I'm just whining. I'm not. I'm in real pain, and in real distress.
6. The hardest part about mornings is: Thankfully I don't have to worry about that most of the time.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: my iPod
9. The hardest part about nights is: The insomnia, and having to work
10. Each day I take: DHE and drink a lot of caffeine!
11. Regarding alternative treatments I: I have tried massage and meditation. I have nothing against alt treatments, but believe they should be used in conjunction with medical advice.
12. If I had to choose between an invisible illness or visible I would choose: visible, because then people take you at your word.
13. Regarding working and career: It is very difficult to work right now, and my school and career plans are on hold.
14. People would be surprised to know: That working through the pain is the most difficult part of all of this.
15. The hardest thing to accept about my new reality has been: The depression that comes with the territory.
16. Something I never thought I could do with my illness that I did was: Realize that maybe someone could take from my experience and find comfort in it.
17. The commercials about my illness: are terribly mis-informed!
18. Something I really miss doing since I was diagnosed is: Having the drive to go someplace anytime I wanted to with whoever I wanted to
19. It was really hard to have to give up: Some days with my husband
20. A new hobby I have taken up since my diagnosis is: Blogging about Migraine awareness
21. If I could have one day of feeling normal again I would: not know what to do with myself.
22. My illness has taught me: Some days are bad. Some days are worse. Some are good, and that's why I keep going.
23. Want to know a secret? One thing people say that gets under my skin is: people thinking I can take a couple of Tylenol and "get over" a Migraine.
24. But I love it when people: actually ask questions and want to understand.
25. My favorite motto, scripture, quote that gets me through tough times is: "I love you." -my husband
26. When someone is diagnosed I’d like to tell them: Be educated, don't fall for people who think they know what you're going through and how to cure it
27. Something that has surprised me about living with an illness is: I never knew how strong I was until I had to give myself injections during migraines when I could hardly fathom what I was doing
28. The nicest thing someone did for me when I wasn’t feeling well was: Helped me bathe, fixed me lunch, and let me sleep
29. I’m involved with Invisible Illness Week because: It's time people realized that many illnesses are invisible and just as debilitating as visible illnesses!
30. The fact that you read this list makes me feel: As if you want to know the truth and are ready to accept that having Migraines doesn't make you a hypochondriac.
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