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 hope. Show all posts
Showing posts with label hope. Show all posts
Sunday, November 1, 2009
Wednesday, October 21, 2009
action alert: express Migraine to Congress
Betsy Blondin, editor of the excellent book Migraine Expressions, has put together a great way for us Migraineurs to increase our visibility with Congress. Betsy's efforts come at a terrific time, right on the heels of Cindy McCain "going public" with her Migraine disease.
This timely advocacy effort is called "Express Migraine to Congress", and it is very simple. Anyone can purchase a copy of Migraine Expressions and designate a specific member of the House or Senate to receive this book. Betsy is offering these books for Congress at a reduced price ($18.95) and will include a $1 donation to the Alliance for Headache Disorders Advocacy for every book purchased through this effort.
Last week, I purchased one of these books, which is now on its way to Senator Patty Murray (a member of the Health, Education, Labor and Pensions Committee). Betsy is keeping track of which members of Congress have been sent books so our efforts aren't duplicated.
I realize that in this difficult economy, you may not have room in your budget to purchase one of these books. If you do have the money, please consider sending a book to Congress. If you don't, please consider making a small donation to ADHA, or even just write a letter to your members of Congress. Betsy has kindly published a sample cover letter and given us permission to copy and paste it in our own letters. Every little bit helps, and now is a great time to join our efforts.
Let's show Congress that Cindy McCain has 36 million other Americans who are also desperately seeking a cure for Migraines!
Links:
Purchase a copy of Migraine Expressions HERE.
A list of the members of the Senate (including who has already received a book) HERE.
A list of the members of the House (including who has already received a book) HERE.
Betsy's blog post about Express Migraine to Congress HERE.
Betsy's sample cover letter to Congress HERE.
Be well,
MJ
This timely advocacy effort is called "Express Migraine to Congress", and it is very simple. Anyone can purchase a copy of Migraine Expressions and designate a specific member of the House or Senate to receive this book. Betsy is offering these books for Congress at a reduced price ($18.95) and will include a $1 donation to the Alliance for Headache Disorders Advocacy for every book purchased through this effort.
Last week, I purchased one of these books, which is now on its way to Senator Patty Murray (a member of the Health, Education, Labor and Pensions Committee). Betsy is keeping track of which members of Congress have been sent books so our efforts aren't duplicated.
I realize that in this difficult economy, you may not have room in your budget to purchase one of these books. If you do have the money, please consider sending a book to Congress. If you don't, please consider making a small donation to ADHA, or even just write a letter to your members of Congress. Betsy has kindly published a sample cover letter and given us permission to copy and paste it in our own letters. Every little bit helps, and now is a great time to join our efforts.
Let's show Congress that Cindy McCain has 36 million other Americans who are also desperately seeking a cure for Migraines!
Links:
Purchase a copy of Migraine Expressions HERE.
A list of the members of the Senate (including who has already received a book) HERE.
A list of the members of the House (including who has already received a book) HERE.
Betsy's blog post about Express Migraine to Congress HERE.
Betsy's sample cover letter to Congress HERE.
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
Tuesday, March 3, 2009
it's time to take action - TODAY!
As I posted earlier, the AHDA lobbied Washington DC last week to raise awareness of the lack of funding for Migraine and headache disorders. The time has come for us to email our representatives.
I just finished sending my email. Including writing my personal story, it took less than 10 minutes for me to advocate on behalf of the millions of us suffering with head pain.
This is what I wrote:
Just remember, if we don't speak up for ourselves, who will?
More information about the AHDA.
More information about Headache on the Hill from Teri Robert.
Email your representative here.
Be well,
MJ
I just finished sending my email. Including writing my personal story, it took less than 10 minutes for me to advocate on behalf of the millions of us suffering with head pain.
This is what I wrote:
At only 25 years old, I am both a chronic daily headache and chronic migraine sufferer. I have head pain every moment of every day. This constant, continual pain has made it indescribably difficult to function in the world for the past several years. Because of various migraine triggers, I am unable to shop in most stores, eat at most restaurants and work at many types of jobs. In fact, having recently lost my steady job at an architecture firm due to the economy, I've been having incredible difficulty not only finding any job, but finding one I am physically capable of performing.Now it's your turn. Go to the AHDA's website and follow the links to email your own representative of the House. It's free, it's easy and it will help the millions of us who will benefit from increased NIH funding.
I am only one of 36 million migraine sufferers, but I am one of the more severe cases. I, along with millions of other Americans, desperately need an effective treatment so we can continue to contribute to our country. I have already tried almost a dozen different migraine preventives available on the market. None of these medications were specifically developed for migraine; all are "hand-me-downs" developed for other diseases. None of these drugs have worked. Without NIH-funded research, I have no hope of ever trying a treatment developed specifically for my condition. Instead, I will rely on anti-seizure, anti-depressant, blood pressure or anti-psychotic drugs, hoping one will work for me.
Just remember, if we don't speak up for ourselves, who will?
More information about the AHDA.
More information about Headache on the Hill from Teri Robert.
Email your representative here.
Be well,
MJ
Tuesday, February 10, 2009
your help requested: Team Eye and Ear
I'll be going off the topic of Migraines today to raise awareness for another cause close to my heart.
Two of my family members are running the Boston Marathon this spring. They are fundraising for Team Eye and Ear, the charity team for Massachusetts Eye and Ear. So far, they've done an excellent job of raising money toward their goal, but I'm asking all of you dear readers to consider a donation to their team.
Why did they pick Team Eye and Ear? On their fundraising page, they explain:
Please take a minute to check out their fundraising page and consider donating. Even $5 can make a difference!
Thanks, everyone!
More about Massachusetts Eye and Ear Infirmary.
More about the Boston Marathon.
Donate here.
Be well,
MJ
Two of my family members are running the Boston Marathon this spring. They are fundraising for Team Eye and Ear, the charity team for Massachusetts Eye and Ear. So far, they've done an excellent job of raising money toward their goal, but I'm asking all of you dear readers to consider a donation to their team.
Why did they pick Team Eye and Ear? On their fundraising page, they explain:
Monica had sudden vision loss as a teenager caused by a degenerative cornea condition. Her doctor at the time told her she would eventually lose her sight in one eye and would need a cornea transplant. After moving to Massachusetts in 2001, Monica came to Mass. Eye and Ear to get a second opinion and transfer her care to our doctors. Her doctors and the staff at Mass. Eye and Ear gave her hope, telling her that she would not necessarily lose her vision and that there were things she could do to help prevent it. Monica explains, “Going to a world class institution and seeing the doctors who are really aware of and involved with cutting-edge research has made such a difference in the care I’ve received, and I want the opportunity to give back by raising funds to help continue that research.”
Please take a minute to check out their fundraising page and consider donating. Even $5 can make a difference!
Thanks, everyone!
More about Massachusetts Eye and Ear Infirmary.
More about the Boston Marathon.
Donate here.
Be well,
MJ
Friday, January 23, 2009
letting go of superwoman
Last Sunday, I went for my weekly massage with my wonderful therapist, N. After some trial and error before the holidays, I finally settled on N as a good fit for massage. Between the holidays, moving and getting sick, it had been close to a month since my last massage, so I was happy to get back.
During last week's massage, in addition to the complete relaxation I'm normally able to achieve, I was filled with a feeling I haven't had in a long time: unconditional self-love.
Contrast that with the negative self-talk and complete lack of self esteem I've been experiencing all week, after a painful accident. I was getting into the passenger side of DBF's van, when I opened the door and slammed myself in the head. If that wasn't bad enough, I hit my head right where my daily Migraine pain is centered, near my right temple/cheekbone. This injury has been triggering moderate to severe Migraine pain and symptoms all week, meaning I've spent much of my time lounging around the house like a slug. And berating my stupidity all that time.
Like many other chronically ill women, I've had to shed the Superwoman image pretty fast. When I was working, I simply wasn't able to work a full-time job, equally split the chores and errands and take care of myself. Even now, without the full-time job, I still am not able to divide the chores and errands equally with DBF. He's had to take on the lionshare of typical chores, as well as most of the cooking we do to maintain my strict diet.
Having to give up some of my independence for the sake of my health has been difficult, and is a daily struggle. Just yesterday, I posted on MMC that it's still frustrating and hard to ask for help, even if I'm asking DBF, someone who will never second-guess my judgment about my health. While I've rejected the image of Superwoman, her shadow still lingers and sometimes I can't let go of the (unfair) comparison.
But after a week of calling myself an idiot, I'm remembering the hour of totally unconditional self-love I experienced on Sunday. Love that is much more healing and healthy than guilt is. It wasn't just that I loved myself and my personality; I even loved my body, as imperfect and fragile as it is.
Here's the thing. I'll never be Superwoman. I will always have Migraines, Chronic Daily Headache and IBS. But I will also always have myself and my body.
Acceptance of my chronic illness is something I struggle with every day. Acceptance of myself and my body is no easier, especially with so much stress in my life. But finding that moment of unconditional love last week was inspiring, and enough to remind me that I am worth the effort.
Be well,
MJ
During last week's massage, in addition to the complete relaxation I'm normally able to achieve, I was filled with a feeling I haven't had in a long time: unconditional self-love.
Contrast that with the negative self-talk and complete lack of self esteem I've been experiencing all week, after a painful accident. I was getting into the passenger side of DBF's van, when I opened the door and slammed myself in the head. If that wasn't bad enough, I hit my head right where my daily Migraine pain is centered, near my right temple/cheekbone. This injury has been triggering moderate to severe Migraine pain and symptoms all week, meaning I've spent much of my time lounging around the house like a slug. And berating my stupidity all that time.
Like many other chronically ill women, I've had to shed the Superwoman image pretty fast. When I was working, I simply wasn't able to work a full-time job, equally split the chores and errands and take care of myself. Even now, without the full-time job, I still am not able to divide the chores and errands equally with DBF. He's had to take on the lionshare of typical chores, as well as most of the cooking we do to maintain my strict diet.
Having to give up some of my independence for the sake of my health has been difficult, and is a daily struggle. Just yesterday, I posted on MMC that it's still frustrating and hard to ask for help, even if I'm asking DBF, someone who will never second-guess my judgment about my health. While I've rejected the image of Superwoman, her shadow still lingers and sometimes I can't let go of the (unfair) comparison.
But after a week of calling myself an idiot, I'm remembering the hour of totally unconditional self-love I experienced on Sunday. Love that is much more healing and healthy than guilt is. It wasn't just that I loved myself and my personality; I even loved my body, as imperfect and fragile as it is.
Here's the thing. I'll never be Superwoman. I will always have Migraines, Chronic Daily Headache and IBS. But I will also always have myself and my body.
Acceptance of my chronic illness is something I struggle with every day. Acceptance of myself and my body is no easier, especially with so much stress in my life. But finding that moment of unconditional love last week was inspiring, and enough to remind me that I am worth the effort.
Be well,
MJ
Sunday, January 18, 2009
reforming healthcare to make pain less invisible
When DBF and I were laid off at the beginning of November, one of our immediate first concerns was continuing to afford treatment for my Chronic Migraines. Any regular reader of my blog knows that I haven't yet found a successful treatment regimen to manage my Migraines, though I have been working hard for several years now.
I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.
It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.
Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.
But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.
According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.
This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.
Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.
Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.
But what if it didn't have to be that way?
I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:
The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.
Be well,
MJ
I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.
It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.
Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.
But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.
According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.
This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.
Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.
Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.
But what if it didn't have to be that way?
I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:
- Better treatments for Migraines and other chronic pain;
- Appropriate prescribing of existing and new treatments;
- Individual treatment protocols for patients to address breakthrough pain; and
- Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).
The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.
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
Thursday, November 6, 2008
complementary vs alternative medicine
Therapies like acupuncture, massage therapy, biofeedback and many others are often referred to as "alternative" therapies, and have been for years. Recently, there's been a movement toward referring to them instead as "complementary" therapies. This choice of words may not seem like a big deal, but there is, indeed, a big difference.
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
Saturday, November 1, 2008
kreativ blogger award
I started Rhymes With Migraine only a few months ago, and I've been a bit lax in posting. That's the irony of living with and blogging about chronic illness - often the illness gets in the way of blogging. At least, it has for me, because I have a lot of trouble using the computer when my Migraines are bad.I was therefore (pleasantly) surprised to learn that fellow blogger Leslie of Getting Closer to Myself awarded me with the Kreativ Blogger Award!
Leslie is one of my favorite bloggers, and has been very supportive in the short time I've known her. So Leslie, many thanks for giving me this award!
As part of the Kreativ Blogger Award, I'm to list six things that make me happy, and give this award to six other bloggers.
Six things that make me happy:
- My very supportive family, friends and boyfriend.
- My adorable kitty, Madcat.
- The kindness, compassion and understanding of the entire chronic illness community.
- Sharing my own story to connect with others.
- Knitting, crocheting or sewing.
- A nice warm cup of tea.
- Diana, of Somebody Heal Me
- Ellen, of WEGO Health
- Janet, of The Migraine Girl
- Megan, of Free My Brain From Migraine Pain
- Suzie, of Sparkling With Crystals
- Teri, of MyMigraineConnection (and others)
Thanks again to Leslie for honoring me with this award. I encourage all of my readers to check out my choices, as well as the other wonderful blogs in my blog roll.
Be well,
MJ
Thursday, October 30, 2008
returning to the complementary medicine fold
I posted earlier this month about the options that Dr E gave me regarding my treatment, mainly to try another Migraine preventive, or to go see an herbalist. I decided to take the referral to the herbalist, Dr P. I did not feel mentally ready to trial another preventive med, and I wanted to make sure I was getting the most out of my supplements before I add on prescription meds.
My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.
She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.
Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.
Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.
On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.
This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.
It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.
I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.
Be well,
MJ
My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.
She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.
Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.
Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.
On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.
This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.
It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.
I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.
Be well,
MJ
Monday, July 14, 2008
July's headache carnival is posted!
The July Headache Blog Carnival - How Spirituality Helps Us Cope with Migraine Disease - has been posted over at Diana Lee's Somebody Heal Me. Yours truly has submitted an entry, along with many other worthwhile entries I'm still working through.
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.
Be well,
MJ
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.
Be well,
MJ
Friday, July 11, 2008
on migraines and a path to harmony
I did not originally plan to write a post about spirituality and migraines, as my faith is erratic at best. I'll admit to you now that after reading fellow blogger Megan Oltman's entry on the subject (God Grant Me the Serenity to Accept Migraines I Cannot Change), I felt moved to write my own thoughts. (Thank you, Megs.)
I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.
My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.
Listening to my body. Hmm. Turns out that's key to living well with migraine disease.
Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.
Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)
More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.
Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.
Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.
So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.
Be well,
MJ
I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.
My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.
Listening to my body. Hmm. Turns out that's key to living well with migraine disease.
Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.
Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)
More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.
Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.
Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.
So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.
Be well,
MJ
Thursday, June 12, 2008
out with the Topamax, in with the botulism
Just a quick post tonight before I retire for the evening.
I saw Dr E on Monday for my first Botox treatment. Much to my surprise, my new insurance company approved my doctor's request for Botox on the first try, no appeals necessary. My last insurance company denied the Botox, which turned out to be a blessing in disguise since it helped me to realize my last doctor was a turkey, so I fired her.
The procedure itself really was not as bad as I thought it would be. I brought DBF with me for moral support. After talking to me a bit about Botox, Dr E gave me about 12 injections, in my forehead, brow, back of head, neck and shoulders. The injections burned, for sure, but the pain was nothing compared to the migraine I had while I was there.
He also gave me the go-ahead to discontinue the cursed Topamax. I felt it was only giving me side effects and no benefits, and he felt that since I was on such a low dose I could go ahead and stop it. So right now, the only preventives I'm taking are magnesium and vitamin B2 (riboflavin). Plus the Botox.
I should know in the next few days if it's going to work for me. The day after the procedure was wonderfully low-pain. Yesterday I overdid it and ended up with my pain at an 8 by the end of the day. Today is somewhere in between. I'm faithfully tracking everything in my migraine diary and trying to be patient.
Dr E wants me to call in in three weeks to let him know how I'm doing. By then we'll have a better idea of my frequency and severity, and can discuss a plan from there. I have a follow-up Botox appointment scheduled in three months, but he plans to do some phone consults with me before then, and have me come in sooner if I need to.
(Let me just say again, I am so happy I found this guy.)
So, I'm keeping my fingers firmly crossed that the Botox will help. I'm not expecting miracles, but I'm hoping it will reduce my pain enough to give other preventives a chance to start working. And maybe, just maybe, one day I'll be rid of this migraine.
Also, if you haven't seen it already, check out June's Migraine & Headache Blog Carnival, hosted by the Migraine Girl.
Be well,
MJ
I saw Dr E on Monday for my first Botox treatment. Much to my surprise, my new insurance company approved my doctor's request for Botox on the first try, no appeals necessary. My last insurance company denied the Botox, which turned out to be a blessing in disguise since it helped me to realize my last doctor was a turkey, so I fired her.
The procedure itself really was not as bad as I thought it would be. I brought DBF with me for moral support. After talking to me a bit about Botox, Dr E gave me about 12 injections, in my forehead, brow, back of head, neck and shoulders. The injections burned, for sure, but the pain was nothing compared to the migraine I had while I was there.
He also gave me the go-ahead to discontinue the cursed Topamax. I felt it was only giving me side effects and no benefits, and he felt that since I was on such a low dose I could go ahead and stop it. So right now, the only preventives I'm taking are magnesium and vitamin B2 (riboflavin). Plus the Botox.
I should know in the next few days if it's going to work for me. The day after the procedure was wonderfully low-pain. Yesterday I overdid it and ended up with my pain at an 8 by the end of the day. Today is somewhere in between. I'm faithfully tracking everything in my migraine diary and trying to be patient.
Dr E wants me to call in in three weeks to let him know how I'm doing. By then we'll have a better idea of my frequency and severity, and can discuss a plan from there. I have a follow-up Botox appointment scheduled in three months, but he plans to do some phone consults with me before then, and have me come in sooner if I need to.
(Let me just say again, I am so happy I found this guy.)
So, I'm keeping my fingers firmly crossed that the Botox will help. I'm not expecting miracles, but I'm hoping it will reduce my pain enough to give other preventives a chance to start working. And maybe, just maybe, one day I'll be rid of this migraine.
Also, if you haven't seen it already, check out June's Migraine & Headache Blog Carnival, hosted by the Migraine Girl.
Be well,
MJ
Sunday, June 8, 2008
grieving my past life
I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
Be well,
MJ
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest
Be well,
MJ
Sunday, June 1, 2008
a thank you note to my new specialist
I went to see my new headache specialist about a week and a half ago, and the appointment went incredibly well. I posted about it on the MMC forums if you'd like to read the full story; I don't have the energy to recap it here again.
I was so impressed with the doctor and his staff that I wrote him a thank you card, which I will be dropping in the mail tomorrow. This is what I wrote to him:
Dear Dr Elliott,
On May 21, I came to your office for my first visit, in my ongoing search for treatment for my chronic migraines. You are the third doctor I've seen in the Seattle area since February 2007, but the first I have felt the need to thank.
From the first time I spoke on the phone with your office staff, I felt truly welcomed and respected as a patient and person. Everyone I have spoken to at Virginia Mason has been courteous, polite and caring - more so than I've seen anywhere else. At my appointment, your staff made me feel very comfortable in an otherwise anxiety-producing situation. And they smile!
You and I spent an hour discussing all of my history, symptoms and concerns during my appointment. You took the time to answer all of my questions and explain anything I didn't understand.
For the first time, I feel a renewed sense of hope that together, we can work to find an effective treatment regimen and I can live my life again.
So thank you for your thoughtfulness and compassion. It is all too rare to find a doctor willing to work with his patients as equal partners, and even rarer to find one with such an excellent staff.
While it still may take some time to find an effective treatment for my migraines, I now feel confident it is possible. Thank you for renewing my sense of hope, and please thank your staff for me as well.
Sincerely,
MJ
I was so impressed with the doctor and his staff that I wrote him a thank you card, which I will be dropping in the mail tomorrow. This is what I wrote to him:
Dear Dr Elliott,
On May 21, I came to your office for my first visit, in my ongoing search for treatment for my chronic migraines. You are the third doctor I've seen in the Seattle area since February 2007, but the first I have felt the need to thank.
From the first time I spoke on the phone with your office staff, I felt truly welcomed and respected as a patient and person. Everyone I have spoken to at Virginia Mason has been courteous, polite and caring - more so than I've seen anywhere else. At my appointment, your staff made me feel very comfortable in an otherwise anxiety-producing situation. And they smile!
You and I spent an hour discussing all of my history, symptoms and concerns during my appointment. You took the time to answer all of my questions and explain anything I didn't understand.
For the first time, I feel a renewed sense of hope that together, we can work to find an effective treatment regimen and I can live my life again.
So thank you for your thoughtfulness and compassion. It is all too rare to find a doctor willing to work with his patients as equal partners, and even rarer to find one with such an excellent staff.
While it still may take some time to find an effective treatment for my migraines, I now feel confident it is possible. Thank you for renewing my sense of hope, and please thank your staff for me as well.
Sincerely,
MJ
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