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Great Post re: Opioids & Pain Patients

Such a great post by Dr. Nagel for the National Pain Report! Opioid addiction should be seriously dealt with (although I have almost NO confidence that prohibition is the answer), but not at the expense of legitimate pain patients. According to Dr. Nagel, pain patients outnumber addicts 20:1. I am sorry that a bunch of addicts took legitimate pain medicine and used it recreationally, BUT why does that mean that others can’t continue to use these medicines appropriately? Yes, opioids have been overprescribed by some doctors and abused by some addicts, but let’s find a solution to that problem that doesn’t take opioids off the table for everyone. AND let’s fund pain research that will eventually make opioids obsolete. Pain patients want that more than anything else, but the feds are currently spending more money on the DEA and addicts than finding new treatments for pain. We need more Dr. Nagels standing up for their patients.  I know the DEA is scary, but….

The Opioid Abuse Crisis; an Opportunity for Those with Chronic Pain

Also, in the past two weeks I found out that my GP is leaving her practice and my alternative MD is also closing down his practice. Aaaaaaargh. Not a good thing for a patient with migraine, celiac, hashimoto’s thyroiditis, severe food and airborne allergies, infertility, sleep apnea, and the latest and greatest – severe menopause symptoms; what did I forget?  Sigh….

Here are some other great links I ran into this week. Thanks to my dogs for keeping me sane. Stay positive people (sorry, I know I’m struggling to do so)….

Breakthrough in the Migraine Funding Crisis

Cost of Migraine: Heavy economic, personal toll

Cindy: Health Activist

Chronic Migraine: Bloggers Reveal Top Tips

Living in a box: stories of chronic pain

People with Pain Matter Campaign

Migraines were taken more seriously in medieval times – where did we go wrong?

Finding Meaning

I have been thinking about finding meaning when one has a chronic illness a lot lately, although finding meaning is something that most people think about, whether they are ill or not. I don’t have any answers, but here is my latest train of thought.

The end of my long-term relationship has brought the “meaning issue” back to the front burner for me as well, which is a good thing.  I think that sometimes being in a relationship can create an environment of false-meaning or what I like to call “living in a bubble”, or at least it did for me. Fixing up our house, taking care of each other, growing my partner’s business, taking care of our dogs – all of these things gave me meaning, and they were very meaningful in the end. But they were also very focused on just us, not others, and not us as individuals. What do I need and want? The difficult ending of my relationship has also challenged my faith in myself, people and the rest of the world out there. Especially since I lost my own identity in my relationship, as many of us do.

But where to begin? I can say that just trying to work 20 hours a week right now is a draining experience. Should I try to find a job that has more meaning, so I can kill two birds with one stone? I had a job in animal rescue in my late 20’s, early 30’s and working in that industry was pretty rewarding AND draining in and of itself – nonprofit burnout. Adding extra hours to the workweek in the form of volunteer hours is also demanding. That’s the avenue I’ve been traveling lately, and I feel like I’m mostly letting down the people I am volunteering for. Whether I am or not, it’s difficult to be consistent when you are struggling to put in your hours at your regular gig.

Maybe “finding meaning” isn’t really about putting hours into an organization. Maybe I need to expand my universe a bit here and figure out what really gives me meaning personally. I can imagine that questions like these are really based on who is asking, so the solutions are as diverse as we are. I have been in a really dark place lately with my life, wondering what the point to all of this pain is, especially when I’m so lonely and too sick to visit friends and family very often. I probably just need a tiny glimmer of light to lead me out of my dark place. I know these thoughts aren’t revolutionary, I’ve thought these things many times in the past, but maybe it’s good to look into them again

I should be happy that I’m simply alive.

This is an oldie but a goodie. Recently I fancied the thought that I’d like to give my remaining years to someone who is dying and could really use them productively and happily. Why do some of us with incredible lives die too young, and others of us live longer with constant pain and suffering? Well that’s just life, so I should focus on being productive and happy myself, instead of on some stupid hypothetical. Being able to ask the question about giving my life meaning is meaningful. Having a computer to be able to type these words is wonderful. Having a roof over my head, food to eat, people who love me – these things are a true gift.  There hasn’t been a me before, and there will never be a me again. That’s gotta mean something??!! When I’ve heard these words before, I’ve thought, “Yeah, but try that when you’re in pain 24/7.” It’s true that those of us with chronic illness are more challenged by these ideas, but maybe their simplicity is the key here. It only takes a second and no money or training to switch your thoughts from “I’m in too much pain to be be happy I’m simply alive” to “I’m happy to be alive in this moment.” And then work on the next moment.  Just like the “beginner’s mind” in meditation, there is no destination or expertise here; just try to feel better from one moment to the next, and then start all over again.

Simplifying my life and thoughts may give me more meaning.

If I can work on blocking out the noise and things that don’t really make a huge difference to me personally (politics?), I may be able to focus on what really matters in life. So much of my unhappiness may just be my mind ruminating on what’s wrong instead of what’s right. Focusing on little things – getting outside for a walk, making myself something healthy to eat, making my dogs happy, calling my mom – that’s where I want to spend my limited energy.  Recently I cut way back on my FaceBook usage, and although I really enjoy connecting with people there, since it’s difficult to be social when you’re this sick, I think FB was somehow doing me more harm than good. There are wonderful stories there (plus all of the happy dog videos), but there’s a lot of pettiness and a lot of hate too. I have always been attracted to the simplicity movement. All of the stuff we accumulate in our lifetime is just stuff to be thrown away. I want to live with a lot less, and I need to due to a sharp decrease in income. I want to live with less stuff, less noise, less space and less stress.

Live in the moment.

There’s a cliche for you! But it’s rather simple. The past is gone. It’s not forgotten, but it certainly can’t be changed. The future isn’t here yet. We can make plans, but we can’t worry about things that have not happened and may never happen. Making plans according to our past experiences is smart. Obsessing about the past and future is stupid. This moment and then the next are the only reality we have anyway. If you fail to remember this, guess what? In the next moment, you can try again.

I know I have gone full circle from getting meaning from helping others to helping myself, but there is that rule we all hear every time we get on an airplane – “Put the oxygen mask on yourself before you put it on someone else.” I know what you’re thinking. It’s impossible to think about these grander issues when all of my effort goes to getting out of bed, making that next doctor’s appointment or holding onto a job that I desperately need. I get it. I have been there, and I’m still there. All I’m saying is that I’d like to start to have a bit of focus in my life. It’s not fair that everything is more difficult for us, but life isn’t fair. Starting from that point, how can I make this unfair life a little better?

It’s not going to be worrying about who the next president is, or why the government is taking away my much needed medication (although I will keep advocating). It’s going to be really honing in and focusing on what really matters in my little day-to-day life, which for now, is the little things. Making my dogs happy, working one more hour today, learning a new skill that will help me get some bookkeeping work that I can do from home, living with less.  The second and third things aren’t really what I want to be focusing on with a chronic illness – we should be able to focus on being as well as possible – but that’s just not my reality. Having enough money to pay my mortgage and go to an alternative doctor is going to contribute to my piece of mind as well. Not everything is about the meaning of life and reaching nirvana. But who knows?  Maybe in the next moment those things will become my new focus.  Stay positive people!


SPG Block

Hello Positive People! Headache on the Hill, Part 2 is on its way, but for now I wanted to show you a SPG block- done at home by me! The sphenopalatine ganglion is a group of nerves, which is linked to the trigeminal nerve, located behind the nose. The trigeminal nerve is very involved in migraine, so by treating it with anesthetic, we are hoping to help prevent migraines. My treatment is with .6 cc Bupivacaine in each nostril, twice a week for six weeks. Cross your fingers!

I thought you’d be interested in seeing the catheter at work – my online migraine buddies sure wanted to see it. Here we go….  

I didn’t film drawing up the meds, but here’s a video of treatment on the left side. It was a bit tough at first, and I feel and look horrible today, but I wanted you to see how it works. 

And the right side:

So, anyone who wants to call me a junkie, because all I want is my opioids, can kiss my &#*~%. The reason I say that is lately online whenever I defend the right for chronic pain patients to have access to opioids, I get called a junkie and worse.  It’s frustrating, because I will try any non-opioid treatment out there, including sticking a catheter WAY up my nose. Tee hee!!!! Don’t even get me started on the nerve stimulator surgeries I had a few years back. Four surgeries in three months, MRSA infection, shaved head, horrible scars for life, yuck. And the damn thing had to be removed. Remember this? Seems like five lifetimes ago….


Migraines suck, but migraineurs fight back & try anything. We’re a resilient bunch, aren’t we? 🙂 My goal is to get rid of my pain – any way I can. Let’s hope this treatment helps. And I LOVE that I can do it myself….
Stay POSITIVE people!  

ACHE SPG Block Info

Headache on the Hill 2016, Part 1

Bless me father for I have sinned.  It’s been AGES since my last post!  Lots of good, bad & ugly since then.  Let’s quickly catch up (with pictures!):


  • Botox, LDA shots, vitamin & fluid IVs & lack of Effexor (more on that later) helping my migraines overall
  • Tissue transglutaminase IgA (blood test for celiac) down to .45 in Nov ’15 from 4.64 in Aug ’14 – I guess not eating gluten really works for celiac – although I’d like to see it even closer to zero
  • Helped my ex “divorce” his business partners and start his own firm: Blanco Architecture, where I can work part-time on my own schedule and not get continuously hassled & discriminated against
  • Started another blog & website: Gluten-Free Beer Babe with lots of help from Ariane @ Do You Own Thing
  • Met one of my favorite producers, Ron D Moore (Star Trek: TNG, Battlestar Galactica, Outlander), who talked to me & nine other fans about his work and life at Pac Bell Park after a Giants game – for two hours – and bought us drinks – nice guy! 
  • Started hiking with my friend Sandra, her dog Spencer and my dog Bella, when I feel well enough  
  • Went to Vancouver with one of my brothers to see the Women’s World Cup final and witnessed, in person, the Carly hat trick in first 16 minutes of play  


  • Dissolution of my eleven year relationship
  • One of my dogs, Hoss, passed away  
  • Denied disability again – on a technicality this time
  • Took months and months to get off Effexor, which was giving me MORE migraines and depression instead of less (this is an extremely difficult drug to get off of – it literally  changes your brain chemistry – including getting “brain zaps”)

Not going to discuss the Ugly.  But enough of all that.  Here I am in DC again for my second round of Headache on the Hill!  Traveling here is challenging and expensive, but I never hesitate to come to one of the best cities eva.  And I LOVE being a part of the legislative process (sort of) for one day.  

HOH is an event organized by The Alliance for Headache Advocacy, which is a coalition of many advocacy groups.  Doctors, patients, caregivers & advocates come together to meet with our Representatives’ and Senators’ offices.  Sometimes we get to meet with our legislators, but mostly we meet with legislative assistants, many of whom focus on health care issues.  If we make a good case, these assistants bring our “asks” to our legislators for action.  Last year’s asks included increasing NIH funding for migraine research & getting support for legislation that would increase funding & awareness for veterans with migraines, an increasing problem unfortunately.  Last year’s group:

It looks like there will be one group of us from California this year (last year we broke into two groups) visiting the following offices: Feinstein, Boxer, Pelosi, Eshoo, Huffman, Brownley & Lieu.  Not only are these some serious hard-hitters, but we have seven meetings in one day!  Wow.  We have serious hard-hitters on our team too – top neurologists from all over –  including Dr. Cowan, head of Stanford’s headache clinic & Dr. Rapoport, a neurologist from Santa Monica, who works with UCLA.  And that’s just the California team!  Wish us luck this Tuesday Feb 9th!

More to come about my trip and the day of lobbying….

AHDA Member Organizations:

  • Alliance for Patient Access (AfPA)
  • American Academy of Neurology (AAN)
  • American Headache and Migraine Association (AHMA)
  • American Headache Society (AHS)
  • Clusterbusters
  • Headache Cooperative of New England (HCNE)
  • Headache Cooperative of the Pacific (HCOP)
  • Migraine Research Foundation (MRF)
  • Miles for Migraine Races (MFM)
  • National Headache Foundation (NHS)
  • National Migraine Association / MAGNUM
  • Ohio Headache Association (OHA)
  • PFO Research Foundation (PFORF)

#Headache2016 #HOH2016 #Migraine

DC & Headache on the Hill, Part Two

Sorry it took me so long to continue my posts about Headache on the Hill….

I had a beyond wonderful day Tuesday, my only day to myself.  I walked from the hotel to the tidal pool and lounged in the sun at the Jefferson Memorial.  I made it all the way around the tidal pool and walked back to a salon near the hotel to get purpled.  I think I walked about six miles, and my head cooperated!  Yay!

IMG_5840 copy DSC00334 copyDSC00337 copy 2DSC00370 copy


Wednesday was really fun too.  I went to the Capitol Bldg and met up with Eileen, founder of Miles for Migraines, a wonderful organization that I have supported in the past.  We were escorted up the back stairs to a room of people waiting for their photo op with Senator Barbara Boxer.  We waited and waited, which was okay, because I had a chance to get reacquainted with Eileen.  We had met a few years back at one of the Miles for Migraines events.  Anyway, Senator Boxer came up the hallway, took a picture with a few groups, then came up to us.  It was so quick that there wasn’t really anything said, but I did whisper in her ear that I was born and raised in Marin (she used to live in Kentfield).  She then said, “oh great”, and was off to another group.  Quick, but pleasant.  What a beautiful part of the building – it was a privilege.

Senator Boxer pic 2

Then Eileen and I cabbed our way back to the hotel and walked over to the Marriott Convention Center, where she attended a Alliance for Headache Disorders Advocacy ( board meeting, and I met up with one of my best online migraine buddies, Rosa.  It was SO great to see her again, and we sat and chatted forever.  Our training for the Headache on the Hill advocacy events took place at the Marriott, where the American Academy of Neurology was having its meeting, so it was a quick walk to meet up with Teri Robert, the #1 migraine patient advocate on the planet and another one of my best online migraine buddies.  If it wasn’t for Teri, I’d still be at home feeling sorry for myself and wondering what the hell migraine disease is anyway.  It was so great spending some quick minutes with Teri, and the training went really well.  I was frankly exhausted and headed back to the hotel to collapse.


Thursday was my big day.  We all met at the Capitol Building for some quick early morning pictures and found our group members.  There were seven of us total from California, so we were divided into two groups.  I was in group two, my lucky number, so I knew things were good.  Dr. Shashi Kori and Adam & Rhonda Chase and I found a coffee shop and quickly got acquainted.  We met with Senator Boxer’s office and Reps Swalwell, Speier, Honda & Huffman’s offices.  Our three “asks” were:

  • The Subcommittee on Primary Heath & Retirement Security hold a public hearing devoted to the topic of the NIH’s (National Institute of Health) efforts to account for disease burden in its researching funding priorities. It turns out that many diseases and conditions receive NIH research funding at levels far below those warranted by their impacts on Americans. Pain and headache disorders are prime examples. Migraine research funding by NIH is approximately 10% of the amount directed towards diseases with similar burdens – $25 million. We’d like to see that eventually raised to $250 million, where it should be. Diseases with much less burden on Americans, such as end of life issues, are receiving much more money, because they have celebrities or some other reason for publicity. Migraines and other headache diseases hit Americans in the prime of life, when they are the most “productive” – mostly women in their 20’s – 40’s. If we could get some of the 36 million American migraineurs back on their feet, we’d save some of the $31 billion dollars in indirect economic costs that we lose annually. There has been one prescription developed for migraine EVER, and it has helped many people. But NIH under-funding has resulted in too few headache research scientists and little interest in submitting grants for NIH funding.
  • We also requested a letter sponsored by Senators Coons & Ayotte to be signed and sent to VA Secretary Robert McDonald highlighting the direct connections between military service and post-traumatic headache. Traumatic brain injury is one of the “signature injuries” of the wars in Afghanistan & Iraq (20%, 20%!!! of service personnel sustained concussions or mild traumatic brain injuries). 98% of those with concussions reported headaches during their final three months of deployment. Recent studies suggest that combat exposure itself may be a risk factor for chronic migraine and PTH. We all know how difficult it is to treat migraine and headache disease, but combine that with veterans coming home from service and navigating the VA system, which I know anecdotally has NO IDEA how to deal with chronic headache, and we are really letting down our veterans. Again.
  • Finally we asked Congress to renew and support existing funding of research on headache disease in the Department of Defense Congressionally Directed Medical Research Program, apparently a separate pot of money that Congress delegates to further research.


I felt like we did a great job. Adam Chase is a fourteen year old migraineur, whose mother and sister also suffer with severe migraine. He was amazing – speaking so well to all of the different Congressional staffers. His mother Rhonda was totally amazing, considering she is trying to take care of herself AND two kids with severe medical problems. I don’t know how she does it! And Dr. Kori is a research neurologist currently working on a research program at Stanford to help cluster headache sufferers. He is a wealth of scientific migraine and headache information and extremely well spoken. He was the one who kept pointing out that we have millions of chronic migraine sufferers at the prime of their lives, who cannot be the best that they can be. Like me, so many have had to give up dreams of careers and family. And believe me, this problem is just going to get worse. As women marry less, they will end up on their own, without financial help from a spouse and unable to work. As feminists we are encouraged to put our careers first, and hells yes, be self-sufficient! Even if we increased migraine funding 1,000%, which we think would get us to just an equitable level with other diseases, it would be years before drugs and treatments would become available.

In the end, all of my follow-up communications failed miserably.  None of the staffers even sent me an email saying they received my emails.  It was very disheartening, but I hope that if I attend again next year, and start building on relationships, it can only get better, right?  Anything is better than zero, right?  I apparently caught the flu from some wonderful passenger on my trip east, because my flight home was horrid, and I was sick for a good two weeks after the trip.  No good deed….


Positives for the Day:

  • As long as we fight and push our legislators, we can be heard.  It may not lead to substantial action, but there is a lot of value in being heard.
  • I had a really good time and enjoyed the advocating/political life!
  • #HOH2015

Talk at ya again soon, and as always, stay positive! Sara

DC & Headache on the Hill, Part One

The trip to DC was great!  Priority seating with Virgin America is still mostly worth it, although it looks like you board with most everyone else now.  I was seated very close to the front, the seat in the middle was empty, and my suitcase fit right in the overheads close to where I was sitting.  Need a stress-case like me ask for anything more?  Virgin’s wi-fi – that’s another story.  Too expensive and no video streaming or downloading.  WTF?  Needless to say, I was video-less the entire flight, because my iPad is full of something that is not video.  And my work laptop is a video-free zone.  Probably a good thing for someone with a screaming migraine from the change in altitude, being squished in a metal box, the re-circulated air, lack of gluten-free food, take your pick – “the stress of traveling” pretty much sums it up.  I had already decided that pain meds were going to be mandatory on both flights.  I ended up working and listening to tunes, which was great, because of course, I am behind at work.  I will have to fit another couple of hours in during my trip, maybe at night while I am trying to stay on California time?

The shuttle ride from Dulles was very interesting.  Our shuttle was full to the hilt – I was in the front seat, which actually ended up being awesome for Ms. Sickie/Ms. Sightseer.  Not feeling social, I acted like a teenager and was glued to my phone, occasionally looking up to see the freeway and traffic.  Finally I looked up to see a sign “Pentagon”.  I had never seen the iconic building before, and of course, it doesn’t look like a pentagon from the road, but it was actually quite nice on the two, or maybe three, sides I saw.  Of course the security looked like…..  Hmmm, I was going to say Fort Knox, but I think “it looked as secure as the Pentagon should look” works here.  Dropping off some folks in Pentagon City, I didn’t know there was such a place, and Arlington (or maybe Pentagon City is in Arlington?), we took off across a bridge to DC.  I’ve been to DC twice, but seeing the Washington phallus, hmmm, hmmm, Monument from afar is always a great start.


Then we quickly drove next to a beautiful old railroad bridge and right by the Jefferson Memorial.  I realized it was time to put away the stupid phone and engage (and you can’t really take decent photos with an iPhone through a shuttle window while moving fast anyway).


Next we hit the Capitol and Supreme Court, dropping off a few passengers in a beautiful neighborhood right east (I think) of there.  I was thinking, people live in beautiful brownstones a block away from the Capitol?  One of the things I love about DC is that there is so much regular right next to so much spectacular.  It’s just all mushed together.  Maybe all East Coast cities are like that, but it’s so different from the West Coast (well, San Francisco is a lot like that).  I guess it’s exciting to this gal, who grew up in the suburbs.  Back to the ride.  As the GPS lady said, “turn left on Pennsylvania Avenue”, I mentioned at this point to the driver and the one passenger left that this ride was better than any paid tour.  The second to last stop was the Wilard Hotel next to the Treasury building, which blocks the White House from view after all, but it was quite a building itself (that lucky European passenger got off here).

Off to the hotel where I am staying for the week.  The shuttle driver from Cameroon was super nice, and we chatted about Africa, Canada, California, and how hungry we both were.  Luckily I was his last passenger of the day, so off he went home to find some food.  I, on the other hand, didn’t find any food.  After unpacking and taking a much needed bath, I took off to find the neighborhood Whole Foods to load up on gluten-free whatever I could find.  (Have I mentioned that I have celiac disease and can’t eat a lick of gluten?  I’ll save that for another post.)  I heard some thunder and lighting, but I thought, whatever –  a spring rain will be lovely.  Not!  I turned the wrong way and minutes later was soaked through my stupid jeans, hoodie and mule tennis shoes.  And lost.  I do have a good sense of direction, usually, and so made it back to the hotel just fine.  I was forced to eat a protein bar and potato chips for dinner, but it could have been much worse.  Thank goodness for my protein bars – I brought a case with me!  After an episode of GOT, a good night’s sleep and some coffee (looks like all I can “eat” at the hot food buffet – even the Danon yogurt has gluten – and who knows what’s in the eggs), I am off to finally find that damn Whole Foods and load up on food and breakfast.  I have the whole day to myself, so hopefully my head will cooperate, and I’ll see some good stuff. Georgetown?  American History Museum? Inside of the Jefferson Memorial?  My “only” sightseeing goals for this trip….

Positives for the Day:

  • Being driven all the way to SFO by sleepy, awesome boyfriend
  • Remembering everything you need (so far) and having Adrian tease me about how much stuff I brought! (my two “carry-on” bags weighed no less than one ton)
  • Being in a multi-cultural capital city with unlimited things to do
  • #HOH2015

Talk at ya again soon, and as always, stay positive!     Sara

Working with Migraine Disease – BlogPost #2

Or maybe I should call this post “Not Working with Migraine Disease”.  Migraines are difficult.  Trying to work, whether at home or an office, with migraine disease is extremely difficult.  Trying to work with chronic migraine disease can be impossible.

One thing I have learned about migraine disease and migraineurs is that we are ALL so very different.  Instead of generalizing about working with migraine disease, I will just tell you my story.  As I mentioned last time, my first migraine happened while I was working 23 years ago.  I was able to take the rest of the day off, go home, and recuperate.  My boss, my job and my life were not permanently affected – my migraines were still episodic.  (Please see below for the difference between episodic and chronic migraine).  No permanent damage was done to my career.

The next time I remember my job being affected by my disease was when I was working for an animal rescue group in Utah.  This was also around the first time I was diagnosed with depression, a comorbid migraine disease (more about that in a later post).

Rosie and I at the Utah sanctuary

**********Rosie and I at the Utah sanctuary**********

A few of my colleagues, my bosses and I went on a business trip to Chicago.  At that time, I didn’t know that travel, especially air travel, is one of my triggers.  Hell, I didn’t even know what a trigger was.  After an extremely stressful flight and a night out in Chicago, I ended up in the ER.  For years I blamed this 100% on drinking too much.  Now I give the drinking about 25% of the blame (although drinking on a business trip is NEVER a good idea).  I had plenty to drink on other occasions in my life.  I even had plenty of horrible hang-overs without ending up in the emergency room.  The migraine disease is what pushed me over the edge.  Shortly after this, I was laid off.  There were definitely other reasons why I was laid off.  Whatever.  Ending up in the ER during a business trip after a night of drinking forever damaged any credibility I or my migraine disease had in the eyes of my employers.  Right or wrong, it just was.  There’s always an up-side to these life events, and mine was that I returned to the Bay Area (I didn’t want to remain in Utah), went back to school and graduated with my MBA with honors (Beta Gamma Sigma).  My migraines ran rampant during my second visit to university, but I was able to succeed with the support of my professors, parents and friends.  And Rosie, of course….

Job Loss #2.  At the beginning of 2009 during my first post-MBA finance job, my migraines were chronic, and I was totally miserable trying to keep up at work and everywhere else.  My incredibly wonderful GP (who still supports me every single day) had been suggesting for quite a while that I go on disability.  Going on full-time disability would have meant losing my job, because I was the only person doing my job, and rightfully so, they would have had to hire someone else in my place.  Six months later I found out I could go on temporary part-time disability (though the state of California for one year) and still keep my job.  THAT sounded like a good compromise.  I started on disability in June 2009.  To that point, all my down time and personal time was spent on the couch in pain and depression.  Guess what happened next?  At work I accidentally received a copy of the Craig’s List ad bill advertising for my replacement.  To make this long story shorter, I came to an agreement with them that I leave.  But in reality, I was fired.  Or I would have been if that Craig’s List bill hadn’t crossed my desk.  After applying for permanent private disability insurance through my employer and SSI through the Feds, I was denied.  It went something like “We understand that you have daily migraines, but we believe that should not affect your ability to work forty hours a week.”  So I had to find full-time work again.

Fast forward to 2015, and basically the same thing has happened in my current job.  I went on part-time disability again in February.  The near future will tell what happens with my job and career.  I’ll let you know when I know more and can’t really say more than that now.

Many other migraineurs have similar experiences.  With no test or MRI available to definitely prove we have migraine disease, many doctors, employers and others use this as an excuse to simply not believe us, not support us, and treat us like crazy, whining losers.  Some of us wish we had cancer or our arms had been chopped off.  Then society and community would rally around us.  Instead we are thrown back into society to fend for ourselves.  I seriously thought I would end up homeless at one point in 2010; a thought that was unimaginable to me a few years before.

I think the worst part of all of this is having to give up my dreams for my career.  My work-life was always a sense of pride and accomplishment for me.  I felt productive and smart.  I felt like I could help people, animals and/or society.  I didn’t pay USF something like $70,000 for my MBA so that I could hang a piece of paper on my wall.  I have had to accept that I will never be able to have a great finance/investment job that I wanted after USF.  I can’t be a marine biologist like I wanted to be in elementary school.  And I’ll never be able to open that animal sanctuary – Rosie’s Ranch – that I often dreamed about.  I have grieved for those losses and am looking forward to a less active future, just trying to stay afloat, just trying to work at something, anything a couple of hours a day.  While depressing, it’s better for me to try to be realistic.  To try to put my energy into something doable.  I think working is important for chronic pain patients, but work can be many things.

  • Working at home to make life better for us and our dogs
  • Advocating for others in pain
  • Spending some time in the garden
  • Learning more about migraines
  • Keep working at my current job as much as possible

As you can see, it’s a work in progress…

Here are a few more things that help keep me positive:

  • Soccer, especially the US Women’s National Team (I can’t believe I forgot this last time!)
  • Memories of my 2003 bicycle trip through the UK

Day 1 Land's End GroupDay 2 Dartmoor with Repetti and TimDay 10 Forth Bridge Group 2DSC03352Sandra and Sara Stonehenge croppedDSC03512

Helpful Links:

Talk at ya again soon, and as always, stay positive!     Sara

Back from the Abyss for Headache on the Hill

Let’s go back to the beginning. Shortly after college when I was 22 and working at a bank, I had my first migraine. They say that everyone remembers their first migraine, and hell, they are right. I had to leave work, lie down in a dark room and be sick. My mother was there with me, and the only thing she could do to help me was to stroke my back very, very lightly and tell me I wasn’t going to die.  I could barely stand to have her touch me. I had never felt anything like that pain in my entire life.  To this day, my mom can tell when my pain is bad, just by looking at my face.

Now that I am 45, my migraine disease has progressed to the point where the pain and other symptoms are daily.  My entire life has been affected, and things keep progressing in a bad direction.  My doctors are becoming increasingly more difficult, because we have tried almost everything, and I don’t think doctors like to “fail”.  BUT I really wanted to start blogging about the daily struggle I have staying positive while in pain.

Here are a few things that help keep me positive:

  • My Dogs –
  • Friends and Family
  • Gardening
  • American Headache and Migraine Association (AHMA) –
  • My Online Migraine Buddies
  • Outlander
  • Science Fiction

In two weeks I am attending Headache on the Hill for the first time, an event where patients meet with congressional leaders to advocate for increased funding for headache research.  I am SO excited to attend, and DC is one of my favorite places to visit.  The traveling will be difficult, but worth the risk. I get a lot of satisfaction from advocating for myself and other migraineurs.  So hear’s nothing!

Talk at ya again soon, and as always, stay positive!     Sara

Sara cropped