Monday, July 30, 2012

Head above water

Keeping my Head Above Water, swimming in the Methow River

For me, keeping my head above water with migraine doesn't mean just keeping up w/ household tasks and chores.  It means choosing which things are most important in my life and figuring out how I can "show up."  The chores that don't get done are always waiting for me when I'm ready or my kind husband steps up to the plate.

Being w/ Family
I not only love my family, I like them too, and taking the opportunity to hang out with them is one of the things that gives me great pleasure and a feeling that I'm still in the middle of my life, a participant.  This picture was taken at Christmas time in Zihuatenejo, Mexico.  There's not much that tops being with people I love in a place that is very special to me.

Friends  Yesterday, after our work party, all the girls decided to go for a pedicure, my first!  It sounded like fun and it was, but during the whole gabfest and process, the fumes began to get to me.  Later a slight headache and then the real deal this morning.  You know what?  It was worth it.  An experience I won't repeat in the same way, but I'm not sorry we all had such a good time together.  My swell friends are already offering to "do it ourselves" if we can't find a fume-free venue.

Me, Myself and I

Art  One of the hardest things about having headaches   all the time is that it saps my energy.  Even when I don't have a headache, I may be recovering from one - most of a day.  Severe fatigue is a prodrome for me - afternoon, evening of another day.  My preventative meds are sedating - another drain.  But if it's a choice between doing the dishes or working on my latest art project, art wins out because I totally loose myself.  Everything else fades away and I'm in control, or sometimes the art takes over.  It gives me energy.

Water   Being on it or in is magnificent.  I relish the smell of the river or the bay, the sound of the oars, the motion of the boat in the water.  My husband and I usually go out together so If I get tired, he rows and I can sit back and enjoy it.  We have two rowing stations set up so sometimes we row doubles and that's a whole other trip.  I have to plan this kind of stuff in advance.  If I know we're going rowing or swimming somewhere, I rest up.  If I need to, I take extra meds, etc.  Sometimes we have to put it off until the next weekend, but if it's cleaning the house or taking to the water, the choice is a no brainer for me.

Rowing the Nooksack

My Students   I teach English as a Second Language to my mostly Mexican students.  My time teaching and learning from them is precious.  I work 2 nights a week in the evening.  I have the morning to prepare my lessons and the afternoon to prepare my body.  If I'm headachy, I rest up and use all my tricks and techniques, so by evening I am usually feeling well enough to leave the house by 5:15 to drive to class, teach and then arrive home at about 10:00 pm.  Often I come home feeling better than I have all day long.  They energize me, get my mind off my own problems and help me realize what a privilege it is to get to know a little bit about their world and watch them work hard to overcome the obstacles in their lives 

Thursday, July 19, 2012

$ How much?

How much does it cost?  Simple question, no?  And it deserves an answer.  But try asking when you go for a medical procedure or heaven forbid, if you end up in the hospital.  No one can answer it and very often they're surprised when you ask.

Cost-of-care questions are a  no-no

After my first appointment with the cardiologist, before my ablation, I went to the desk and asked the woman to give me an estimate of cost of this procedure.  She looked nonplussed and said they didn't do that here.  I would have to go to the hospital to "financial services." So I did.  But financial services apologized profusely and said they didn't do that at the hospital.  It had all gone corporate and I'd have to call Eugene (Ore.) - maybe.  I returned to the Cardiology office when it was fairly quiet and repeated my request, politely explaining that the hospital had no information they could give me.

There I found a terrific woman, actually 3 terrific women who spent the better part of an hour working to answer my question, going down to the basement to find someone else who did the coding, making multiple phone calls.  They finally came up with an estimate of about $ 40,000 excluding the anesthesiologist's fee.  I have pretty good insurance, thanks to Medicare plus a secondary policy, but of course, it still means I'll have to pay 10 to 20% which is not just chicken feed for us.

Seriously agitated
Same subject, different venue:  my hospitalization through Michigan Headache and Neurological Institute.  On admission to the hospital head pain unit, I asked for an estimate of cost of service.  They were bewildered.  It took me three days to come up with three answers:
1.  They didn't know, and there was no way they could know.
2.  The hospital room costs $ 1000.00 per day
3.  They offered to explain my own insurance coverage to me.

I said, "I know what my own coverage is, but what I want to know is an estimate of how much you charge for the services you offer on the Head Pain Unit."

I never got an answer.  It was all very polite, but astonishingly absent any answer to that original simple question, "How much will it cost?"

We've all been taught over the last few years, not to ask how much our medical care costs, and medical institutions have been allowed to get away with not providing this information.  I know all the reasons why, but this is really wrong, and it's one thing that is driving up the costs for all of us.

By the way, the drawing and collage above (part of a larger work) really were fun and made me feel somewhat purged of frustration.

Saturday, July 14, 2012

Heart of my heart

Wednesday, beginning at 8:00 am in the morning, my heart was electrified, probed and poked until it did it's odd, unsettling, rhythmic thing of sending out extra errant beats.  Then that little wild piece of me was forever silenced, cauterized.

Image of ablation of my heart.

They punctured me, symmetrically, and inserted   catheters through my femoral vein and up into the heart of my heart and changed it.  It feels odd, like I've lost a little piece of me.

But the thing is I've felt, for a long time, there may be some connection between the skittishness of my heart and the pain in my head.  When I go through a phase of a lot of severe headaches or changes of medication, I experience more palpitations.  Some of these result in conversion to a different rhythm plus rapid heart beat.  Sometimes, after a few minutes, these episodes self correct.  Sometimes they don't.  Then I have to go to ER for treatment, conversion to a regular rhythm and speed.

I've avoided doing anything about this scary little heart habit for years, putting up with episodes that sent me to emergency rooms from the Northwest to New Mexico.  I have lived in the knowledge that I could have an episode out on the water in our boat, hiking on Chuckanut mountain or even in Mexico.  I have been in the classroom at the beginning of teaching a two and a half hour class, only to have my heart begin to race.

Time to follow my instinct as well as the suggestions of the doctor and do something about it.  Surviving and benefitting from the Michigan hospital experience for treatment of my migraines somehow gave me the courage to have this heart procedure.  The procedure went fine and my doc is 95% sure he got it.  But of course, I paid for this whole experience with 2 days of migraines capped off by a 3rd day with the mother of all migraines.  Not eating nor drinking until 2 pm in the afternoon on the day of the procedure was a big contributor I'm sure.  I'm feeling much better today, and I'm hopeful.

Does anyone else have PSVT - tachycardia and migraines, and if so, have you noticed any relationship?

Friday, July 6, 2012

Here Comes Summer!

Today is July 5th.  Where I live in the far northwest corner of the Pacific Northwest, we say summer begins after the 4th of July.  Today was the first beautiful, sunny, summer day and I'm content though not headache free.  I just feel more optimistic when the clouds lift and the temperature finally warms up enough to put on my sandals "permanently" until October.  I plan, but it doesn't always go my way, and I try to leave things loose enough to always have a back-up plan.

Last summer my husband and I went on a road trip from Washington State to Santa Cruz, Calif. to see my youngest son.  We did a side trip to Crater Lake in Ore., which is at about 8,000 feet.  We camped in chilly 40 degree night-time temperatures and headed down the mountain the following morning.  The elevation dropped quickly and temperatures began to rise rapidly.  My head began to throb, and soon I knew I didn't have it in me to deal with cooking and camping in our van.  We headed to the nearest motel in Redding.  By the time we arrived I was feeling pretty sick and my internal thermometer had gone haywire.  I was on the way to heat exhaustion.  Air conditioning, a long, cold shower and an ice pack brought my temperature down, and my headache began to respond to meds.  Eventually we went  to dinner at a low key Mexican restaurant (with air conditioning), and food also improved my state of body and mind.  Being tuned in enough to admit what I needed, when I needed it was the the key.  In the past I have tended to ignore all the warning signs until I'm on the point of collapse, but I'm learning.

All in all our road trip wasn't easy, but I learned that unaccustomed heat is a trigger for me.  We continue to plan road trips in the summer, but now we know that staying in a motel can be a good option.  And, you know what?  I'm ok with that.