If my Migraine disease has taught me anything - and continues to teach me anything - it's the value of slowing down.
We talk about slowing down all the time when we discuss chronic illness. Being chronically ill requires us to reserve our energy for those things that really matter, to evaluate what we can and cannot do based on how our bodies feel. While initially upon being diagnosed we can fool ourselves into thinking we can still operate our lives at "normal" speed (whatever that means), eventually our bodies demand us to make some hard decisions.
On an even more basic level than that, time slows down with pain. My Migraines and IIH together mean I'm in constant pain. Coping with that pain can slow down time - can you remember a time when a painful injury made it feel like an eternity until that pain was relieved? Chronic pain has a funny way of altering one's perception of time.
Slowing down also takes shape in the way we carefully consider choices where others might make snap decisions. Should I go out tonight, or stay in? If I get off the couch, will my symptoms feel better or worse? What is the best thing for me to eat tonight, based on how I'm feeling? If I take a shower in the morning, will that make it more difficult to get through a full day of work? Should I shower at night instead? How can I dress myself to go out so I'm comfortable but still feel stylish? Stopping to consider every little incidental action slows us down.
Since yesterday was Saturday, that meant a weekly trip to one of our local farmers' markets. DF and I buy the vast majority of our food directly from farmers. (There's quite a large backstory here, which I plan to post about in the future. The short version of our reasoning is that it's the cheapest way to get the quality of food I need to eat to help manage my multiple illnesses.) The seasonal market we used to go to ended at the beginning of October, so we're now going to a year-round one; since DF was working on Saturdays I got to go myself. Which was a nice change from our usual habits.
Yesterday I wasn't feeling very well because of some stormy weather that had passed through the night before. My body soon told me to slow down, a not-so-gentle reminder that even when I think I'm taking it slow, my body has ideas of its own. So I found myself in one of the farmers' stalls, surrounded by fresh produce, deeply breathing in the wonderful smells of earthy, spicy fall vegetables. Mmmm. And I found myself smiling despite how crappy I felt.
When illness and pain try to steal everything from my life - friends, family, health, happiness, fun - I find myself eventually refocusing on those things that are most important to me, and those simple things that bring me joy. In a world complicated by medications, symptoms, doctors, hospitals, treatments and bills, it is incredibly refreshing to enjoy the simple beauty of the first winter squash of the season. That joy doesn't make the pain and illness go away, but it does give me a way to step outside myself, even if just for a minute. And it gives me a moment of slowing down.
Be well,
MJ
Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts
Sunday, November 1, 2009
Saturday, October 24, 2009
climbing back on the horse
It's no secret to me - or anyone who's been following my blog - that I've been having a really tough time lately. My mother keeps telling me, don't despair. Chronic illness is certainly difficult enough to deal with all on its own, but add in the unemployment and sometimes (often) it is just too much to cope with.
My Depression and Anxiety issues have gone from lurking on the horizon to ominously looming over my daily life. I can squeeze out a few hours here and there throughout the week when I feel okay, or even happy, but sure enough the gloom comes back. Like dark, sticky cotton candy.
It seems like each week brings more difficulty to deal with. DF found out that the last day of his seasonal job is October 31; after that, he'll once again be unemployed with no new prospects. (At least this time, there was notice.) A few weeks ago, I quit one of my part-time jobs after it became very clear that the increased Anxiety was not worth the measly paycheck. And as I posted last week, there was the massive failure of my recent medication trial. Everything just keeps piling up.
In the midst of all this upheaval and getting used to a new work schedule, I've let some components of my treatment lapse. I haven't had a massage in several months; I had been going weekly. I've pretty much stopped keeping my headache diary. Last week I even skipped my Nia dance class because I still had the citalopram in my system. I've given myself permission to stop keeping my headache diary, as right now it's causing more stress in my life. I plan to start keeping it again either when I start another med or the beginning of the new year (whichever comes first). I have a follow-up appointment at the end of March with my headache doc, so even if I don't restart my diary until January, I'll have three months of records to show him.
Massage is a different story. I know it helps me to feel better by releasing the tension in my neck and shoulders, even if it doesn't directly help my Migraines. It's silly, really, that I haven't just called and scheduled an appointment, but in the murk of daily life it's easy to avoid making phone calls.
So, my goal for this week is to make that call and restart my weekly massages. I'm focusing on not being hard on myself for ignoring this part of my treatment plan. It's difficult to continually put so much energy into an intensive treatment regimen that seems to offer little return. But every little bit does help, and incrementally I hope I'll improve.
A big part of being able to cope with chronic illness is setting small, achievable goals and recognizing when I achieve them. I know this, but I'm writing it here to remind myself. This week's small goal is scheduling a massage appointment. Hopefully I'll start to overcome this inertia, this feeling of wallowing, by taking that first baby step. Then I can look at my other goals (adding a weekly tai chi class, for example) and start working toward those.
And maybe, just maybe, the regular massages will start to chip away at my stress.
Be well,
MJ
My Depression and Anxiety issues have gone from lurking on the horizon to ominously looming over my daily life. I can squeeze out a few hours here and there throughout the week when I feel okay, or even happy, but sure enough the gloom comes back. Like dark, sticky cotton candy.
It seems like each week brings more difficulty to deal with. DF found out that the last day of his seasonal job is October 31; after that, he'll once again be unemployed with no new prospects. (At least this time, there was notice.) A few weeks ago, I quit one of my part-time jobs after it became very clear that the increased Anxiety was not worth the measly paycheck. And as I posted last week, there was the massive failure of my recent medication trial. Everything just keeps piling up.
In the midst of all this upheaval and getting used to a new work schedule, I've let some components of my treatment lapse. I haven't had a massage in several months; I had been going weekly. I've pretty much stopped keeping my headache diary. Last week I even skipped my Nia dance class because I still had the citalopram in my system. I've given myself permission to stop keeping my headache diary, as right now it's causing more stress in my life. I plan to start keeping it again either when I start another med or the beginning of the new year (whichever comes first). I have a follow-up appointment at the end of March with my headache doc, so even if I don't restart my diary until January, I'll have three months of records to show him.
Massage is a different story. I know it helps me to feel better by releasing the tension in my neck and shoulders, even if it doesn't directly help my Migraines. It's silly, really, that I haven't just called and scheduled an appointment, but in the murk of daily life it's easy to avoid making phone calls.
So, my goal for this week is to make that call and restart my weekly massages. I'm focusing on not being hard on myself for ignoring this part of my treatment plan. It's difficult to continually put so much energy into an intensive treatment regimen that seems to offer little return. But every little bit does help, and incrementally I hope I'll improve.
A big part of being able to cope with chronic illness is setting small, achievable goals and recognizing when I achieve them. I know this, but I'm writing it here to remind myself. This week's small goal is scheduling a massage appointment. Hopefully I'll start to overcome this inertia, this feeling of wallowing, by taking that first baby step. Then I can look at my other goals (adding a weekly tai chi class, for example) and start working toward those.
And maybe, just maybe, the regular massages will start to chip away at my stress.
Be well,
MJ
Sunday, October 18, 2009
side effects and self-doubt
I've been here before. A brief trial of a medication, followed by confusing side effects and my doctor's orders to "discontinue the medication".
As I posted last week, I started a low dose of citalopram (generic Celexa, an SSRI) mainly to help with my Anxiety, and hopefully my Depression and Migraines as well. The first two days, the side effects were tolerable, but by the third dose, my body felt overwhelmed. I put a call into my doctor's office on Thursday morning to see if he thought I should wait out the side effects, and, not surprisingly, got a call back from his nurse telling me to discontinue the medication.
And now I feel myself plagued by self-doubt and "what ifs".
I know that any medication I try will have some side effects. I know that many side effects will improve with time. It's hard for me not to feel like I'm giving up on a medication when I've only taken four doses of it. Dr E told me it would take about six weeks to see if the citalopram would help me, and I know that it can take two to three months for a daily medication to kick in. So stopping after only four days seems like quitting.
Clearly, my body was sending me very strong signals that it did not like this medication. The side effects in question were those listed under the "call your doctor immediately if you experience these" category. (In the interest of not scaring off other patients who may be trying this medication, I'm not going to detail the side effects here, as this is a very effective medication for many people.) And obviously Dr E thought that the side effects were serious enough to outweigh any potential benefits.
But I still have that little voice in the back of my head, telling me that I should just suck it up, that everyone experiences side effects and I should stop complaining. That if I ever want to get better, I need to just push through it until it gets better. In the face of this negative self-talk, it's very difficult to maintain perspective on the situation. (And this kind of self-talk is a key characteristic of my Depression.)
Every time a medication is crossed off the list so clearly and quickly, it makes it that much more difficult to try the next one, as I try to push past the fears and anxiety about past side effects. Because I feel so sick all of the time, it's hard to push through the added sickness of side effects - and it seems massively unfair that I should have to do so. But really, what is fair about chronic illness?
So now I'm left marking time until the citalopram completely clears out of my system and my body has time to get back to its normal level of crummy. And I'm trying not to be too hard on myself in the meantime.
Be well,
MJ
As I posted last week, I started a low dose of citalopram (generic Celexa, an SSRI) mainly to help with my Anxiety, and hopefully my Depression and Migraines as well. The first two days, the side effects were tolerable, but by the third dose, my body felt overwhelmed. I put a call into my doctor's office on Thursday morning to see if he thought I should wait out the side effects, and, not surprisingly, got a call back from his nurse telling me to discontinue the medication.
And now I feel myself plagued by self-doubt and "what ifs".
I know that any medication I try will have some side effects. I know that many side effects will improve with time. It's hard for me not to feel like I'm giving up on a medication when I've only taken four doses of it. Dr E told me it would take about six weeks to see if the citalopram would help me, and I know that it can take two to three months for a daily medication to kick in. So stopping after only four days seems like quitting.
Clearly, my body was sending me very strong signals that it did not like this medication. The side effects in question were those listed under the "call your doctor immediately if you experience these" category. (In the interest of not scaring off other patients who may be trying this medication, I'm not going to detail the side effects here, as this is a very effective medication for many people.) And obviously Dr E thought that the side effects were serious enough to outweigh any potential benefits.
But I still have that little voice in the back of my head, telling me that I should just suck it up, that everyone experiences side effects and I should stop complaining. That if I ever want to get better, I need to just push through it until it gets better. In the face of this negative self-talk, it's very difficult to maintain perspective on the situation. (And this kind of self-talk is a key characteristic of my Depression.)
Every time a medication is crossed off the list so clearly and quickly, it makes it that much more difficult to try the next one, as I try to push past the fears and anxiety about past side effects. Because I feel so sick all of the time, it's hard to push through the added sickness of side effects - and it seems massively unfair that I should have to do so. But really, what is fair about chronic illness?
So now I'm left marking time until the citalopram completely clears out of my system and my body has time to get back to its normal level of crummy. And I'm trying not to be too hard on myself in the meantime.
Be well,
MJ
Friday, October 9, 2009
learning to ask for help
DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.
Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.
It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.
This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.
I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.
In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.
But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.
Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.
It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.
I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.
Be well,
MJ
Saturday, September 12, 2009
30 things about my invisible illness you may not know
The wonderful Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked me to participate.
I'll quote Teri's post here to better explain this meme:
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
I'll quote Teri's post here to better explain this meme:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.
Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.
Each 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.
Without further ado...
1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.
2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).
3. But I had symptoms since: at least my early teen years.
4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.
5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.
6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.
7. My favorite medical TV show is: House and Royal Pains.
8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.
9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.
10. Each day I take 19 pills & vitamins.
11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.
12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.
13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.
14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.
15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.
16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.
17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.
18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.
19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.
20. A new hobby I have taken up since my diagnosis is: knitting/crochet.
21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.
22. My illness has taught me: to say no.
23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.
24. But I love it when people: show compassion or honestly want to know more about my illnesses.
25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.
26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.
27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.
29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.
30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.
If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.
Be well,
MJ
Saturday, March 14, 2009
scars, pain and understanding
I had an interesting conversation with a friend, B, tonight. Without sharing too many of her personal details, she's in the middle of seeking a diagnosis for abdominal pain, originally related to ovarian cysts and now possibly an infection.
I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.
B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).
Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.
It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.
I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.
My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.
Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.
Be well,
MJ
I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.
B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).
Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.
It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.
I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.
My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.
Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.
Be well,
MJ
Monday, February 16, 2009
action alert: headache on the hill
It's no secret to headache and Migraine patients that we are in desperate need of more funding through the NIH for head pain research. Last year, the Alliance for Headache Disorders Advocacy (AHDA) was formed to address this lack of funding. One of the ADHA's primary advocacy efforts is Headache on the Hill (HOH), a two-day lobbying effort with the US Congress.From the AHDA's website:
The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. ... 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.
So, what can you do to help? It's very simple - go to the AHDA's website and sign up for email alerts. Next week during HOH, the AHDA email Action Alerts letting us know it's time to send emails to our representatives. The AHDA will provide basic letters to send and even let us know who our individual representatives are. All we'll have to do is personalize the letters and send, which can be done in less than 10 minutes.
Last year, the AHDA had some clear victories after their lobbying efforts. Teri Robert of My Migraine Connection writes,
We know that the emails prompted by AHDA action alerts last spring had clear, positive consequences. They led to led to the adoption of the House and Senate report language that the NIH is currently responding to.
Please sign up for these email Action Alerts. It won't cost you anything other than a few minutes of your time, and can greatly help all of us in the head pain community.
More information about the AHDA.
More information about HOH from Teri Robert.
Sign up for the AHDA's email alerts.
Be well,
MJ
Thursday, January 8, 2009
looking behind and looking ahead
Well, the holidays seem to have gotten the better of me, as I haven't posted since Thanksgiving. My humble apologies to all of my dear readers out there.
To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our gifts to others were very minimal this year.
Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.
We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.
There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.
Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.
But, I actually feel rather optimistic for 2009. And that is a good feeling.
At the beginning of last year, I wrote:
Something else I wrote about a year ago:
I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.
So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.
Happy new year, all.
Be well,
MJ
To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our gifts to others were very minimal this year.
Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.
We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.
There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.
Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.
But, I actually feel rather optimistic for 2009. And that is a good feeling.
At the beginning of last year, I wrote:
I don't believe in new year's resolutions, but I am rededicating myself to my healthcare. I have my first appointment with a new headache specialist next week. I am willing to do what it takes to find a treatment regimen that will get my migraines under better control.2008 certainly was not an easy year, but I feel like I did achieve what I set out to do: continue to learn about my disease and take my life back, piece by piece. I did lose ground to the Migraine beastie, when I had to resign from my board position with the AIA. But I feel I'm better able to cope with my illness than I was a year ago.
I am looking back toward 2007 as a year of growth for me. I've learned much more about my disease, and have started keeping a headache diary to better understand my patterns and symptoms. At least now I feel like I'm doing something toward getting better. I am looking forward to 2008 as a year to continue to learn about my disease, but also to take my life back piece by piece.
Something else I wrote about a year ago:
I've now been gluten-free for a year now. The full diet eliminates gluten, cow dairy, MSG, preservatives, artificial sweeteners and caffeine. I've also limited my intake of alcohol, sugar, salt, eggs, nitrites/nitrates and non-cow dairy. I eat organic vegetables and meat as much as possible. I'm proud to say that this diet has massively improved my IBS and cut out my (few) Migraine food triggers (MSG, some wines and artificial sweeteners). I've also lost about 45 pounds, and am a much healthier size 12.I think the time has come to make the jump and completely eliminate gluten, dairy and sugar. All three intolerances have a strong genetic run in my family (eggs, too). I think it's worth it to give this diet an honest try. If nothing else, I may lose some weight, which would not be a bad thing.
My problem these days is it seems like anything and everything will trigger a migraine. Stackable food triggers (or suspected triggers) currently include: MSG, sugar, soy sauce, salt, wheat, dairy. There are others I can't think of right now. I've already made the switch to organic meat (which tastes a lot better anyway).
I think that I just need to jump in with both feet and give this diet a real chance. I have migraine pain every single day. If cutting out these foods will cut down my head pain even a little, it's worth it to me right now.
I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.
So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.
Happy new year, all.
Be well,
MJ
Sunday, November 23, 2008
lemonade award
First, thanks to all of you who have expressed your thoughts, prayers and support for myself and DBF. We are coping pretty well. Financially, we're ok - we had set aside some money for a downpayment on a house, so we have enough savings to keep us going for a while. With the help of the career outplacement services paid for by our former employer, I'm confident that we will not only find jobs, but jobs that we like. It may take a while, but in the meantime, we're enjoying our quality time together during the holiday season.
In the spirit of gratitude, Maureen of Being Chronically Ill Is A Pill has awarded me with the Lemonade Award!
The Lemonade Award is given to blogs demonstrating an attitude of gratitude. I know Maureen has been an inspiration to me, with a positive attitude despite her chronic illnesses. She goes out of her way to express how thankful she is for friends, family and even our veterans. I'm honored that she's passed this award along to me.
In keeping with the tradition of the award, I am passing the award along to these 10 bloggers:
- Deborah of Weathering Migraine Storms
- Eileen of My Life With Migraine
- Ellen of WEGO Health
- How To Cope With Pain
- Kelly of Fly With Hope
- Marijke of Help My Hurt
- Megan of Free My Brain
- Rosalind of Working With Chronic Illness
- Suzie of Sparkling With Crystals
- Teri of MyMigraineConnection (and others)
Be well,
MJ
Monday, November 3, 2008
virtual book tour: Women, Work, and Autoimmune Disease
Today kicks off the virtual book tour for a must-read book, written by Rosalind Joffe and Joan Friedlander: Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!
Rosalind writes blogs at Working With Chronic Illness and Keep Working, Girlfriend, along with her web-based business, CI Coach. All are wonderful resources for anyone living and working with chronic illness.
For today's guest post, I asked Rosalind to talk about the five best and five worst things a woman with chronic illness can do for her career. All of these ideas, and much more, can be found in her book, so be sure to check it out. Tomorrow, stop by fellow Migraine blogger Diana Lee's Somebody Heal Me for the next stop on the virtual book tour.
.::.
My Top Five suggestions for managing your chronic illness in the workplace
Stay on top of the situation. When chronic illness (CI) symptoms are causing you to screw up in your job because of a CI, have a “sit down” with yourself and figure out what you want to have happen and what you can do to make that happen.
Get help when you need it. When you can’t accomplish a task on time or on your own, shut down the self critic and replace it with the following questions: what do I need, who can help me best, and what should I say when I ask?
Be mindful of how you discuss your CI. When you have to talk about your CI with colleagues, supervisors or people who work for you, keep your emotions to yourself (even if someone asks how you’re doing).
Be as sure as you can be that you can do the job. When you take a new job, keep your CI symptoms in mind and be realistic about whether this is something you can do on your good days and bad. You’re not in the astrology business so try to predict the future. But you can base your best guess on what you know rather than fears or wishful thinking.
Develop your talents. The best insurance you can have (and we with CI know that nothing is for sure) is to be the best you can be at what you do. When your talents add value, people will be more likely to support you when the CI is “acting up”.
Incessantly referring to chronic illness and talking endlessly and mindlessly about living with a CI, will cause people to tune you out. When you talk about your CI to anyone and everyone who will listen JUST because it’s on your mind, people stop listening. Even worse, they can easily start to doubt that you can really be as sick as you think.
Take a two week vacation one week after you return from a short disability leave. You could create bad feelings, Especially if everyone around you hustled to get your work done.
Wait until you’ve screwed up royally over and over again before you tell your supervisor that you can’t do the job in the time frame it’s expected because the CI is getting in the way.
Never volunteer for the extra assignment, offer to help others when they need it or do anything that shows that you’re a team player.
Keep to yourself and fail to develop relationships with co-workers because you feel ashamed, guilty or worry that someone will discover you live with a CI.
Rosalind, president of cicoach.com (http://cicoach.com), is the coauthor of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! and her blog is http://WorkingWithChronicIllness.com Feel free to reproduce or share the Top 5 list as long as you give her attribution.
Saturday, October 4, 2008
a long-overdue update
I'm ba-ack!
It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.
I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.
The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.
All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.
This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)
Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.
What a difference a 20-minute phone call can make!
A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.
When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.
I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.
I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.
He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.
So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.
What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.
I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.
I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!
Be well,
MJ
It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.
I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.
The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.
All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.
This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)
Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.
What a difference a 20-minute phone call can make!
A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.
When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.
I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.
I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.
He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.
So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.
What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.
I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.
I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!
Be well,
MJ
Saturday, August 23, 2008
guest post
If you haven't seen it already, I was featured as one of the guest bloggers on the Invisible Illness Week Blog: should I claim the label to my illness as part of my identity?
Be sure to check out the other guest bloggers featured there.
Be well,
MJ
Be sure to check out the other guest bloggers featured there.
Be well,
MJ
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