Showing posts with label blog carnival. Show all posts
Showing posts with label blog carnival. Show all posts

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

Tuesday, January 20, 2009

grand rounds is posted

This week's Grand Rounds has been posted at MedPage Today. I'm proud to announce that my post, Reforming Healthcare to Make Pain Less Invisible, has been included. Be sure to check it out - I'm still working my way through it, but it looks like a great edition.

And congratulations to our new president, Barack Obama.


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:
  1. Better treatments for Migraines and other chronic pain;
  2. Appropriate prescribing of existing and new treatments;
  3. Individual treatment protocols for patients to address breakthrough pain; and
  4. Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).
Not being a medical professional, I don't have good solutions to these problems. But I firmly believe that we have an unprecedented opportunity for doctors and patients to work together with the Obama administration to address these problems. More funding of the NIH for research into chronic conditions is an important first step. Beyond that, it is up to all of us with a stake in the medical industry to work together and develop a plan of action.

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

Sunday, August 17, 2008

a bullet-point update

I'm a bit behind on posting, so let's see if I can summarize in a concise way.

  • On a related note, How To Cope With Pain is accepting entries for the August Pain Blog Carnival. No theme, just your favorite post. The deadline is August 22, so submit your entry here.
  • The August Headache and Migraine Blog Carnival at Diana Lee's Somebody Heal Me. This month's theme is "when people don't 'get' Migraine disease". Some great reads here as well (I'm still working through it). Once again, yours truly missed the submission deadline, so you'll have to wait for next month to see me included.
  • Diana Lee is now accepting entries for September's Headache and Migraine Blog Carnival. September's theme is "your best tips on improving communication between patients and their doctors". Entries are due by September 5, and you can submit them here.
  • Marijke Durning over at Help My Hurt has a new feature, the Topic of the Month. This month's is "how can you find help for your pain?" Check it out and comment with your ideas here.
  • Another plug for Help My Hurt. Marijke posted about the closing of the midwifery program at Miami Dade College in Florida. Read her full post here, including what you can do to help protect a woman's right to choose her method of delivery.
  • If you're a blogger on chronic illness, be sure to check out Invisible Illness Blog's call for submissions. National Invisible Illness week is coming up next month, and it's up to us to publicize it! Any CI sufferer, or their loved ones, will find great information at their website, here.
Okay, I think that's it for now. I hope to update again soon on a more personal level.

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

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

Tuesday, June 24, 2008

finally, a rescue (medication)

Since getting my first Botox injections two weeks ago, my pain levels overall have decreased, even though my ongoing migraine still hasn't quit. My base pain level is now a 2 out of 10, rather than 4. I still spike as high as an 8 weekly or so, but overall I'm feeling a bit better.

This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.

So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.

Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*

So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.

All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.

I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.

I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.

*sigh*

I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.


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

Tuesday, May 6, 2008

May Headache & Migraine Disease Blog Carnival

MAY HEADACHE & MIGRAINE DISEASE BLOG CARNIVAL
Somebody Heal Me

Don't forget to submit your entries for the May Headache & Migraine Blog Carnival, which is being hosted at Atomic City.

The May theme is "Migraines and Exercise: How Do You Remain Active?" Entries on any topic that is particularly interesting, educational or inspirational for headache & migraine sufferers are also welcome. Your blog need not be limited to the topic of headaches and migraines to participate. If you have relevant posts to share, you're encouraged pass them along.

Entries are due at midnight on Friday, May 9th. They may be submitted through the form on the carnival website or directly to Diana by e-mail.

The carnival will be published on Atomic City on Monday, May 12th.

If you would like to be added to Diana's carnival mailing list to receive updates and reminders or are interested in hosting a future edition, please send Diana an e-mail at somebodyhealme (at) dianalee (dot) net.