Sunday, November 11, 2012

Traveling w/ my achilles heel(s)

Presently, it so happens, a friend and I are in Santa Cruz, CA house sitting for my son for a few days, exchanging the cold drizzle of northwest Washington for crisp, sunny, Santa Cruz fall days.  This trip has been especially trying because not only am I dealing with daily migraines, I am also hobbling around, literally, with constant pain of achilles tendonitis.  But I refuse to stay home even though it would, no doubt, have been easier.

It takes a huge amount of determination sometimes to just go ahead, make plans, and carry them out even if I'm not feeling at all sure I can actually pull it off.  But I have, once again, set forth, in spite of everything.  And I'm not sorry.

I've gotten to spend some time with a friend I value in a beautiful place that I love.  I would have been limping around at home anyhow.  There have been some lovely moments this long weekend.  Great restaurant meals:  I recommend, unreservedly, Paula's, for breakfast, and Vasili's any time of the day, breakfast, lunch or dinner, if you like Greek food.  An added plus for us is that the owner and chief chef is Julie White, sister of my son's sweetie.  It's incredibly good food.

Foot cloud appears as I am taking above photo
Whenever I travel - with migraine disease -                  
I go prepared with all my meds, both preventative and rescue.  I also take pain pills, fiorenal with codeine, so I can make it through any severe episode with less discomfort.  I carry lidocaine patches, which help when I have a severe headache and crystalized ginger for nausea.  I package my supplements in little bitty plastic bags, one morning bag for each day and one evening bag per day.  All the am little baggies go in a larger zip lock labeled morning, and the pm baggies go in another zip lock labeled evening.  It works well.  I always take
my individual prescription bottles so I can substantiate any 'challenges' that might arise, but then I have a week-long plastic pill keeper that allows me to pre-sort my prescription meds into morning, noon, dinner, and bedtime dosages for seven days.  It's a hassle, but I've got it down now, and it works so I don't have to fret.  Needless to say, I plan ahead so that I have enough or more than enough meds to keep me going for 5 days (on this trip) or two or three weeks, whatever the length of my trip.  Another great thing about traveling is that I take a vacation from worrying about

  1. I'm having too many headaches
  2. I might be taking too many pills thus setting myself up for rebound headaches
  3. Doctors appointments
  4. Physical therapy appointments
  5. Massage appointments
  6. Any appointments
  7. Headache diaries
  8. Work
  9. etc. etc.
I just take it one day at a time and enjoy myself.

I used to obsess about the woes of having to take all this medication (and I still do from time to time), but then I read a book that I grabbed from the communal hotel library while on vacation in Mexico.  It was a great read and immensely helpful:  Prozac Diary by Lauren Slater.  I don't take prozac, but the point is, she has to survive (and thrive) by taking lots of meds.  Well, so can I.  And you can too.

Tomorrow we fly home, but I'm looking forward to my next trip, our annual jaunt to the Mexican beach town of Zihuatanejo in just a month.  I can't wait to immerse myself in the warm blue-green waters of the Mexican sea.  I hope my foot is healthy enough to do a lot of walking, which I love, but if I'm still limping for limited distances, I know I'll be able to swim, which I look forward to all year.





Sunday, November 4, 2012

Grateful for what i SEE

These last 10 days have been verrrrry difficult.  I am on a, so called, drug holiday from methergine, which comes around every 6 months like clockwork.  I've been through this before, but this time I am also taking Venlafaxine (generic for Effexor) which has not been a good medication for me.  I've had a paradoxical reaction, which means for me it has heightened my anxiety and hypersensitivity to all sorts of perceived negative stimuli.  This was all somehow offset somewhat by the methergine.  Since I discontinued the methergine, I have been unable to sleep more than 4 or 5 hours a night.  I am strung out on the one hand, like I've had too much coffee, and drooping from fatigue on the other.  Needless to say, this is driving me CRAZY!!!!

In spite of all this and in part, because of it, I have begun to take walks every day.  And what I see as I walk is one of the highlights of my day.  Because I actually - see - incredible things.

For that, I'm very grateful.










Sunday, October 28, 2012

Migraine teeth and a DENTAL RANT

plus a list of suggestions for those of you who suffer the same fate.


Toothy pumpkin w/ crazed eyes
I've always had great teeth and, with fairly good/ ordinary dental hygiene practices at home, no major issues.  

That all ended 5 to 8 years ago when they began to pile on the meds to try to prevent my migraines.  This was not a readily apparent cause and effect relationship until recently when I began to look into it. Then, when I went to MHNI (Michigan Head Pain and Neurological Institute) in April, I learned that almost everyone, that is all the patients, had the same story:  lots of decay resulting from multiple medications changing the chemistry in the mouth.  Is this starting to sound familiar to some of you?  I'd like to know.

My dentist began to hound me about doing better home care of my teeth, implying I was neglecting them even though I brush and floss daily.  While he made me fill out a list of current medications like competent dentists do, he apparently never bothered to look at this list and consider that it might be connected to my ongoing troubles.  Over the course of three or four years things continued to go down hill.

I bought a fancy electric toothbrush which I now use regularly because it's supposed to be better.  I began to use special, very expensive ($ 15.00 a tube) floride tooth paste recommended by my dentist.  I began carrying a water bottle (in my new 'water-bottle-enhanced' bag).  I bought some Biotene spray and mouthwash, which I don't use enough because it tastes like shit - to me.

Next trip to the dentist brought still more bad news, more cavities (plural).  It also gave me a headache, which nearly always happens when I go to the dentist because he's cramming his hand and all sorts of nasty equipment into my face and mouth and using machines that have really irritating high-pitched sounds.

It also made me furious for days afterward because he suggested once again that I wasn't flossing.  I do, every night like clockwork.  He said it didn't look like I had dry mouth.  And he suggested maybe I should just change my headache meds, which, by the way, have been working fairly well lately.  At an earlier appointment he suggested maybe I should find a new headache doc since he obviously hadn't "cured" my headaches.

That's when I realized this guy has not a clue, not even a tiny inkling of an idea of what I'm dealing with everyday; thus his advice is, to say the least, not exactly on target.  I just wanted to walk out and never come back and find a new dentist instead of this quack.  BUT, he is the family dentist.  Everyone in my family goes to him, and I would probably just have to start over and educate a new guy about all this.  SO I'm going to work to try mightily to bring this one up to speed.  This is a story that will be continued no doubt.  In the mean time, here's what I've learned from my own research that might help you.  The jury's still out.

What're you gonna do?
1.  I use a Philips Sonicare FlexCare+ toothbrush, which costs somewhere in the neighborhood of $ 100.00 on Amazon right now.
2.  I use Fluoridex toothpaste which is pricey at a cost of about $ 15.00 per tube.
3.  I try to brush 3x daily, once w/ the Fluoridex and the other times w/ no toothpaste or with Uncle Harry's tooth powder which has very few ingredients since I'm pretty chemically sensitive.
4.  I try to drink a lot of water.
5.  Since I don't like Biotene, I'm exploring other over the counter remedies for dry mouth including the following:  Oasis, Salvart, SalivaSure, Mouth Kote, Nature's Answer PerioWash, Omni Oral Care Products, and Orajel Dry Mouth.  The problem with many of these is they have some questionable chemicals in them for those of us who are sensitive.  Anyhow those are some options.
6.  There are some dietary suggestions I've come across as follows:  
  • Eat apples and cheese, especially at the end of a meal because they provide a strong stimulus for saliva production and they do not contain rapidly fermentable carbohydrates.
  • Brush your teeth immediately after eating.
  • Don't eat a lot of between-meal snacks.  The more often you eat, the more caries or cavities you are likely to get.
  • Eat a diet that helps you maintain an alkaline balance which includes many fresh vegetables and some fruits.
7.  Before I go to the dentist, I take half a klonopin, which is a benzodiazapine like zanax.  It helps me stay relaxed, which reduces the likelihood that I'll get a headache after my appointment.

Good Luck!



Wednesday, September 26, 2012

FRUSTRATION!!!

I have come to the point in my life where I usually face my headaches and associated symptoms,  fatigue, drugs, side effects and more with some level of equanimity or at least resignation - for good or ill.  My therapist thinks I should cry more, but I just rarely do.

My left funky foot
However, the last few days combined with the last 3 months of foot trouble have left me gnashing my teeth in frustration, crazy with irritability, pissed off at my doctor and yesterday, definitely on the verge of tears.

Lying around is not easy for me, especially when I don't have a headache.  If I'm toasted by fatigue, pain in the head, recovery from migraine, I'm only too happy (in a way) to take it easy.  But, basically by nature, I'm not a good sitter.  Also walking is a big deal for me.  One of my major life fantasies is walking off my illness.  It's also a technique for dealing w/ the frustration of migraine disease.  Even with this avenue effectively closed off for a while, I'm not entirely without ways to cope, but I am off kilter, literally and figuratively.

So, in spite of it all, I deal w/ frustration by:

1.  Walking and riding my bike, sometimes working in the garden.  Anyhow I get outside.
2.  Seeing a mental health therapist every other week, which is a big help.
3.  Journaling and doing art work.
4.  Writing
5.  Going to the beach whenever and wherever I can.
6.  And last but not least, asking my husband to light a fire and make me popcorn in the evening.
                                                                 
         



Sunday, September 23, 2012

Full Circle

Two or Three weeks ago, I went back in time to the Town where I was born and raised, lived until the age of 18.  I left and have never returned.  And I haven't spent much time thinking about it since then.  But an article in Orion Magazine, Jan. Feb. 2011, "Colonization of Kern County" by Jeremy Miller brought me "home" again with an abrupt yank.  I grew up in the desert oil fields of Taft, California, and my father was an engineer working in the industry.  Miller's article details the vast destruction the oil industry has wrought in the area.  http://www.orionmagazine.org/index.php/articles/article/6047/

Steam extraction of heavy crude oil















As a child, I lived in a lovely, old house with a wrap-around screened porch and an oasis-like garden.  I roamed roads of our oil-lease home on my bicycle, built forts with tumble weeds, played on the hillside "cliff," balanced on pipes across ditches, went rabbit hunting with my dad.  It was a good place to be a kid.    


The post WWII oil boom peaked in 1985, and the once prosperous oil town of Taft has shrunk to half it's former size.  The air smells of hydrogen sulfide.  All the houses where families once lived on the oil leases have been torn down, obliterated.  They have been replaced by a dirt-bike raceway with a gated entrance where we once came over and down the hill onto the lease with a view of the office where my dad worked, the shops, neighbors and our home.  The high-wage oil industry engineering and management jobs have been outsourced to San Francisco or Los Angeles.

Honolulu Oil Lease, office, shops, neighbors & playmates
Revisiting my hometown was surreal.  In the last few years, I've begun to experience episodes of anxiety, usually brief and most often associated with several days of headaches without much respite.  Then the anxiety began to surface when I was in situations that challenged my supersensitive nervous system.  This return to my old home "place" brought forth wave upon wave of anxiety.  I don't really know why:  whether it was the haunting, dusty, depletion of the town, the environmental destruction in the area, some association with the time and my family, house and neighborhood (or "lease"), the complete eradication of home and 'hood' or some combination of all three.

Anxious me
We didn't hang around for long, just one night.  That was enough.  The next morning we packed up and headed back to the coast, the ocean, the beach where I always find respite and ease.

Lovely beach and ocean, Morro Bay




Wednesday, September 5, 2012

Coming out of the closet

Talking about migraine disease



How do I do it?  I can only address this topic with a look back ..........  It has been a long process for me to admit than I have severe chronic migraine and that it affects my life on a daily basis.  Now, at the age of 66, I am (usually) very frank about how I'm feeling at any given time.  I don't broadcast it unless I'm feeling bad and can't make it to work or to some other commitment because I don't want it to enter into every conversation, but I don't hesitate to explain if the need arises.

Me & the kids

There have been many steps in the long process of opening up.  It began first at home, out of necessity.  When my kids were young, it was very difficult to admit that I couldn't always be there for them when I wanted to.  At that point, I didn't know, hadn't faced the fact that I had a chronic health problem, much less "migraine disease."  And it fluctuated.  I would have periods when I was fine for a while.  Then depending on many factors, my headaches became more frequent and impacted my life and those around me.  Over the years, I have had to take at least 4 or 5 leaves of absence from work plus a permanent reduction of hours at my present job.  In order to do this, I had to make clear to my administrator what the problem was and why I needed the time off.


Janet
Tucker
More recently I have come out to my friends in a fairly clear way.  My husband and I belong to a small group of families who exchange work.  We move from house to house on a monthly basis doing, mostly, gardening and other outdoor projects.  We convene on
Sundays.  We work for 2 to 3 hours and then eat together, potluck.  


Scott
We are all very good friends and this has become a really wonderful way to get together, share and have a good time doing it.  Sometimes I just can't do it.  At first I felt really bad about this, but the longer we've been at it, the more comfortable I've become just doing what I can when I can.  I've gotten nothing but support from everyone.  Sometimes I do it all.  Sometimes I can't participate, and I just have to stay home.  And sometimes I come and eat and socialize and skip the hard stuff.  Having this freedom and support, with good friends, has been a big deal for me.
Ben

Like many of you, I come with a family history of migraine.  Sadly, that includes my 36 year old son.  When I first realized he had serious migraines, I was quite filled with guilt and dread - for him and what might lie ahead.  Now, I somehow truly know this is not my fault.  And I have a close confidant with whom I can share ideas and lessons learned.

This spring, for the first time, I went to a nationally-recognized headache treatment center, Michigan Headpain and Neurological Institute, for a 10 day hospital stay.  It was a huge step, a kind of surrender to the fact of my headaches as well as a plea for help.  Since asking for help isn't easy for me, this was yet another step in opening up.

Finally, I've begun in ernest to write publicly about living with migraine and it has become a part of my visual art too.  Being more open about living with severe chronic migraines has helped me open up to other things and people in my life.

Headcase

I often don't talk about my headaches with other people because, at any given point in time, I'd rather talk about my kids, my grandson, my art, my students, books, travel or hear about their lives.  On the other hand, if I feel like it or I'm having a bad day or I've learned something new or funny or disturbing about migraines, I speak up.  That's what it's all about for me.






Friday, August 24, 2012

My left foot

On Vacation w/ Hypersensitivity intact -


My husband and I are on vacation, a road trip in our new/ old van from Washington State to Calif. to see our son in Santa Cruz and make numerous stops and side trips including one to Taft, a little California town in the remote, desert oil fields where I was born and reared.  I haven't been back since age 19, so it should be quite interesting - and about 100 degrees.

Motorcycle art in Moss Landing
First stop was Portland to hook up with my husband who was attending his 50th high school reunion, his only one ever.  He drove down a couple of days earlier.  I went down on the train, and we stayed at the hone of old friends.  Next stop, a beautiful forest service campground 4 mi outside of Shasta, Calif.  We made it the following day to our kids' sweet little condo in beautiful Santa Cruz.  We're on our 3rd day here, comfortable, and I'm finally returning to what passes for some sense of equilibrium for me.  

Crustacean at Monterey Acquarium where I became 
seriously over stimulated, nauseated, and dizzy.  Still
it was fantastic!


I've known for a long time that I was especially sensitive to many things, including vibes from 
people, noise, light, personal space, environment around me to name just a few.  But this trip is bringing home to me how much I am buffeted by it all, minute to minute, even though I have actually developed, over the years, many tools to make myself more comfortable and centered.  And, I seem to be getting more sensitive as I get older.  Needless to say, all this has an impact on my headaches and my vacation!  

Each stop so far on this trip has required readjustment on my part and taken a little toll even though I have enjoyed all of them.  Added to my "usual" hypersensitivity is the problem with my left foot, which I injured in a trip/ fall over a month ago.  It is sore, a little swollen and discolored in spite of all my best efforts w/ ice, healing creams, anti-inflammatories, massage, etc.  I can't walk comfortably very far, and I can't ride my bike, both of which I love to do.  It leaves me feeling off center and clumsy, adds to my fatigue level and decreases my resilience.  I'm still having a good time, and spending 4 or 5 days w/ my son in Santa Cruz has given me some recovery time; however, this has all brought home to me that I need a new set or level of coping skills.

Shielded!


I am just beginning to look into developing a shield, a visualization that involves surrounding myself with a protective bubble or layer that buffers the impact of stimuli and protects me.


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