Denial

AKA the Crouching Woman from The Gates of Hell

Apparently I’m in denial.

Big huge, hiding under the sheets, denial, about of all things… my migraines.

At lunch on Saturday my best friend Jo, and I were discussed our migraines. A very common topic since we both suffer chronic migraines. Jo said (as we sat down at Laughing Planet with our gluten free, corn free, dairy free, sugar free, but very tasty meal) that I was really good at forgetting how often I have migraines. She said it with such authority that I was a little stunned. I’d always thought of myself as a very scientific person – being an unreliable narrator to my own life seemed very un-me. Then she pulled out several specifics and I had to admit my self-reporting sucks.

Always nice to have friends good enough to call you on your BS.

I probably would have filled this under interesting but not actionable if I hadn’t just come in late for work that Thursday after a migraine hit so hard at 8am (the office opens at 9) I ended up shooting myself with imitrex and vomiting until I dry heaved (sorry graphic I know) thanks to modern meds I made it to work by 10:45 am unsteady but on my feet.

It just days after my conversation with Jo when my Boss mentioned she was convinced she never saw me out of migraine space the year I’ve been working for her. That one hit hard, since I’d just missed work and I hate missing work and overall I thought I felt better. But two Level 10 migraines in a month is even a lot for me.

I thought about this for awhile.

As animals we really aren’t good at remembering pain – the obvious painful memory comes to mind childbirth – and our brains are wired to keep us going and keep us reproducing, protecting our families, and so of course distinct memories of pain would be an evolutionary liability. I also know that my daily optimism is rather insane – that fact that I can work at all, that my co-workers not to mention my Boss put up with the days when I say blue for green or say Wednesday and mean Friday is a constant joy to me. Even writing this, coming off a migraine by the grace of drugs – I have trouble word finding.

Not to mention that a Canadian study showed that chronic pain may hamper memory creation so there are probably huge pieces of the last three and a half years I don’t remember anyway. So in addition to not remembering to survive the pain I also don’t remember because I can’t form memories because of the pain. This study also showed a problem with spatial relationships which is the beginning of understanding how I could have gotten lost in a part of Portland where the streets are numbered up from the river and in alphabetical order from B for Burnside on. I’ve lived here all my life.

Thought about it for a bit longer and realized I need to remove my memory from the self reporting process…

I remembered a few studies I read where researchers were using apps to ping people at various times of the day to report on everything from health to happiness. Apparently having an app that asks you a series of questions a few times a day is less arduous than putting pen to paper. Not having a smart phone (I know, I know, sometimes I am so ahead of the curve i.e. beta user of Hulu – and sometimes so behind it is laughable i.e. smart phones and NCIS) I decided that maybe Google docs would be good enough – available from just about anywhere, permissions based on email user names, and I can sort data, build graphs et al.

I’m a week into my trial and it’s working pretty well.

I report to myself 4 times a day: Morning, Noon-ish, 5-ish, and Night. If I don’t have the computer handy I walk myself through the questions and seem to be able to hold that information until I can log it in. There are a lot of variables, and I’m in the process of changing several key behaviors, so I’m not sure if the data will really provide anything more than my non-scientific self-remembered reporting but I’m sure my Neurologist will be excited to see the data mid year.

 

There are two interesting things that have come about since this epiphany 1) I’m giving myself a break – If I’m really in migraine space all the time (prodrome to hangover) then I’ve decided I am a kick ass woman just for surviving and holding down a job. 2) I made a deeper commitment to the anti-inflammatory diet that I started two weeks ago. I’ve tried just about everything else so it looks like it is time to really commit to trying something new.

~ Tess

Day 4 – Singing Cole Porter

Wiki Commens - Ulysses and the Sirens by H.J. Draper

Wish I had better news.

It is the morning of Day 4 and I’m only 1/3 through the re-write of the story. It’s been a battle every day to sit down and write.

Migraine mostly.

Right now I’m sitting here with my coffee on one side of the keyboard and an Imitrex on the other. I’ve conditioned myself not to take Imitrex unless the migraine is over a 6 on my 1-10 pain scale. I only have a 5 but I need a good day.

9:35 and one Imitrex down.

Here’s hoping for a better day.

On the plus side I discovered a few things.

When I’m having a plot problem I need to walk away and do something else for awhile. I just have to remember to come back. I think this is a similar process to complex decision making. I distract myself and my subconscious process all the data and then sends me the results via my “feelings”.

My house is more organized than ever. Apparently I have to have everything in place, put away, and picked up for me to write. So, this has been a lovely ongoing side benefit. The Bedroom is still one big closet but you can’t have everything.

An ice pack on my neck, a heating pad on my back, and rest is still one of the best ways to best ways to get rid of a mild headache. (Even better when I can add an Imitrex to the mix)

I’m developing a new pattern. Two hours of writing, go do something else, two more hours of writing. I’ve had this theory that writing is like distance running. You have to work up your stamina and focus. Although it is possible to get up one morning and decided to write for three days straight, preparation and training make it easier.

There are my insights and words of wisdom as I begin Day 4. They aren’t much but then I feel like I’m in purgatory. The funny thing is, I did an edit on the rewritten section this morning and loved it. So it’s worth the pain.

Back to it.

~ Tess

A Bump in the Road

See, I told you I’d talk about my migraines at some point.

Yesterday was a bump in the road.

I hate bumps but sometimes the road is all bumps for months on end so I shouldn’t complain too loudly about this last one. It was a little bump.

The thing is – I had work to do and it took me three to four times as long to do it plus I had to rely on a friend and the client for a level of feedback I don’t normally need. Stringing words together yesterday was like trying to move a mountain.  

And I didn’t fight through just one day. The day before yesterday was rough and today I’m whipped. You see, a migraine isn’t just a headache.

The headache is simply my version of Stage 3 of a migraine. And Migraine is a very complicated and poorly understood process.

Stage 1, Prodrome, causes me to have trouble concentrating. I feel sluggish and stupid.

Stage 2, Aura, leaves me with language and spatial problems. I have difficulty finding the right word or completing a sentence.

The worst was the day I needed the word ‘faucet’. I could not come up with it to save my life. I was frustrated and angry but it didn’t do any good the word wouldn’t come.

There was also a period of time when things were so bad that I would get lost. I’ve traveled all over the country and have a great sense of direction but I was getting lost in my own city. A city I know so well that I don’t even use a map.

Stage 4, the hangover or postdrom, is my favorite part because I’m exhausted and a little stupid but I know the worst is over.

I once spent ages stuck in Stage 3. Constant headaches and nausea for months on end with no surcease. So the fact that they now end leaves me lighthearted – even if the fun isn’t over because Stage 4 usually lasts a day or so and is directly proportional to the migraine often even if I caught the worst of it with drugs I only escape the pain but not the aftermath.

Like I said – we are not talking about a headache.  

Stages 1 and 2 can happen in a few moments or over a couple of days. Sometimes they hang on like a storm cloud on the horizon. Always threatening thunder but never actually arriving. You want the storm because it clears the air – but you dread it all the same. Those stages drain you and make you feel less than human.

I’ve had migraines all my life, but a year and a half ago something changed. My migraines used to be bolts out of the darkness, more frequent than a Blue Moon but not as frequent as a new one. Then all that changed and they became chronic – nearly untreatable and completely unmanageable.

Because so little is known about them, what they are, what they actually do, and what causes them, people have a difficult time relating.

When my migraines became chronic I told my doctors that I’d rather be diagnosed with cancer. It’s something people understand and we have developed cultural norms about how we deal with it. Migraine is something else – we can’t see it or test for it and worse it’s all in our head – so suffers are often treated as having a psychosomatic problem and not a disease.

Yet migraine is a neurological disease. A disease that causes American businesses over $18 million in lost productivity every year.

Today is better and even though none of the drugs helped yesterday I got through it. Tomorrow is a tossup but I’m getting used to that. I’ve learned to forgive myself the bad days, work through the middling ones, and live to the fullest when I have a good one.

~ Tess

Oh, and I tried to find a picture for this but I couldn’t find anything that approximated my level of pain. Everyone looked too pretty. Where were the dark circles, the bad hair, and the hooded eyes?

Healthcare?

I was thinking about the migraine that’s been sitting behind my left eye all day. It made me remember last year when I had a migraine that lasted 31 days (yes DAYS not hours).

That made me think about Healthcare.

You see, I’d never really thought about healthcare until I needed to get help for my migraines. Real help! The kind where you know that you can’t keep going if you don’t get some assistance. Nothing I was trying was working and I needed a specialist. Plus I was concerned that if I didn’t get better I would lose my job.

I did get better – then I got laid off. It could have been worse.

But while I was suffering through the maze of healthcare and HR I realized that it was the most inefficient system I had ever seen in my life. My friends and former co-workers know that I don’t do well with convoluted systems – and from what I can tell my experiences were mild compared to most – but the system is broken. But fixing it… that is all about change and as much as we may rail about the system, it is our system, we are used to it, and on some level it works.

I don’t think the Healthcare debate is really about Healthcare. I think it is about change – and it is rare for people to embrace change. We may also have used up our ability to handle change after voting in President Obama. That was change on a grand scale – and it took unprecedented visionary leadership – and guts. Guts for all of us to believe that change was possible.

We are the only industrialized nation without universal healthcare. You can read all the stats on who’s covered, who isn’t, all the horror stories of healthcare gone wrong, all the stories of waste and malfeasance. But none of those are going to make you change your mind… because for a lot of us, what we have works for us and we are afraid that by moving to a different system we will have less.

Fear is what keeps us here. Fear of change.

Isn’t the first thing you do when your company changes healthcare providers is check to see if your doctors are on the list? Or when you change jobs? Who wants to change? To walk into the unknown? Even though change is usually… what?

When something changes… how often is the change bad, good, or just more of the same? And the corollary – where do we have to be before we actively pursue change?

I like that… where do we have to be before we actively pursue change?

If it is our health – is it the X year class reunion, when your doctor says you are going to die of a heart attack in 2 years if you don’t, a major milestone of a birthday, or something else. What tips you into changing your behaviors?

If it is the Presidency – did we really have to go into freefall before the country woke up and said “No More!”

If it is your Healthcare – how bad would it have to get or how good would the option have to be to get you to change? And are you looking at this from a personal standpoint or from what is right for the Nation as a whole?

I could quote you more statistics here but as Benjamin Disraeli said, “There are lies, damn lies, and statistics.” Although 1+1=2 in stats numbers are a lot like words, and words can say whatever you want them too.  

The question is what do you want? If we could find the top three things that defined a vision of Healthcare that spoke to everyone – could we then change? Right now we are bandaging the scrape on the knee when the leg is broken. This is a fix. What we need is a reimagining of the whole system. Something that I’m not sure we are capable of.

Our Founding Fathers did a great job making sure that any changes of a momentous nature to our country were slow. The system, with all its checks and balances and division of powers, is meant to make sure that all aspects of a problem are weighed. I don’t think they ever imagined how huge and convoluted our government would become. All systems do this – they build complexity until they drown in it.

No one can wave a magic wand and make this work and without a clear vision we don’t know where we are going – and that scares us.

It took me two months of daily migraines to get a referral to the Neurologist that finally helped me. Would I have gotten in to see him sooner if the system changed or would I have been left waiting for months? Migraines are rarely life threatening so I’m not so sure where I would be on the importance scale.

The thing is – I’m ready to face the change, even if it causes inconvenience for me in the short term because I believe it is where we have to go. We need everyone to have access to Healthcare – everyone to have access to preventive care – well baby checkup – screenings for breast cancer/colon cancer/diabetes/heart disease – whatever you are at risk for. Then we can catch things early – save money on late stage care – and start providing preventive rather than reactionary care. Wouldn’t it be nice if the Healthcare system was about keeping you healthy rather than just fixing you when you’re broken?    

So yes, I want change. It won’t be easy, it won’t be pain free. Hell, we may go backwards before we go forwards – but where we are will just collapse in on itself costing us more and providing us less.  

 ~ Tess