I recently read The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health, by Carolyn Bernstein, MD, and Elaine McArdle. I published a review of it over on MyMigraineConnection, which you can find here.
If anyone else has read this book, I'd love to hear your comments either here or at the review itself.
Be well,
MJ
Saturday, April 4, 2009
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
Monday, February 16, 2009
action alert: headache on the hill
It's no secret to headache and Migraine patients that we are in desperate need of more funding through the NIH for head pain research. Last year, the Alliance for Headache Disorders Advocacy (AHDA) was formed to address this lack of funding. One of the ADHA's primary advocacy efforts is Headache on the Hill (HOH), a two-day lobbying effort with the US Congress.From the AHDA's website:
The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. ... We are building on the legislative progress that began with the first HOH in September 2007 and resulted in language in the recent US Senate Appropriations Committee Report strongly urging increased NIH attention to headache disorders. If we are to realize these necessary changes in NIH funding, we must continue to make our issue heard before Congress.
So, what can you do to help? It's very simple - go to the AHDA's website and sign up for email alerts. Next week during HOH, the AHDA email Action Alerts letting us know it's time to send emails to our representatives. The AHDA will provide basic letters to send and even let us know who our individual representatives are. All we'll have to do is personalize the letters and send, which can be done in less than 10 minutes.
Last year, the AHDA had some clear victories after their lobbying efforts. Teri Robert of My Migraine Connection writes,
We know that the emails prompted by AHDA action alerts last spring had clear, positive consequences. They led to led to the adoption of the House and Senate report language that the NIH is currently responding to.
Please sign up for these email Action Alerts. It won't cost you anything other than a few minutes of your time, and can greatly help all of us in the head pain community.
More information about the AHDA.
More information about HOH from Teri Robert.
Sign up for the AHDA's email alerts.
Be well,
MJ
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
Sunday, February 8, 2009
courage
I went to see Dr E on Thursday afternoon for a follow-up appointment, and even though there was some confusion (they had canceled my appointment but forgot to call me), Dr E and his PA worked me into the schedule since I was there.
The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.
Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.
We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.
Overall, it was a very good appointment.
I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.
So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.
It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.
Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.
Be well,
MJ
The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.
Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.
We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.
Overall, it was a very good appointment.
I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.
So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.
It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.
Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.
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
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