Wednesday, September 26, 2012

A possibility of progress. . .

I finally managed to get to a new Endo this month.  My GP has wanted me to go now for years. But it's just not been something I was able to handle financially, or emotionally.

In July, I reached the point where I felt confident this was something I could manage all the way around, and my own research had led me to some conclusions that could explain so much about my life, my medical history, and health issues I've been dealing with, many of them for my entire life.

Irony of ironies, having only just found my way to the information myself, sitting down with an Endo and describing all the minor, but life long issues we've never fully been able to deal with, she said "I'll be stunned if it isn't CAH."  I didn't lead her to it, just told her what I've been dealing with for so long. To hear her reach the same conclusion without even suggesting it, well it was at once empowering as it was frightening.

CAH is Congenital Adrenal Hyperplasia.  Over simplified, it means, that at some point during pregnancy, something didn't quite go right, and I was born with a messed up body.  Depending on it's severity, it can kill outright, usually within the first few weeks of life, or leave one with a lifetime of problems.

You can figure out which one I got.

Yes, a flash picture of salt.
One of the biggest indicators of this has been a series of jokes with my family and friends, and instructions from my childhood doctor.  You see most people need to watch their salt intake to prevent them from getting too much and risking health problems.  A fairly normal, healthy diet and you'll get just enough salt to do fine.  For my whole life, I've had to consume frankly astonishing amounts of salt.  Even to this day I'm refilling the salt shaker on the table once a month or so, and I'm the only one that lives here.  So to the right of course is more than a pound of salt, and in most houses this will last more than a year. In my house, I go through three pounds a year at least.  If I don't, I get sick.  My blood work shows as being off, which of course in the worst case, means dehydration and IVs.  This is just not exactly normal. It's the variant of CAH known as "Salt Wasting" and the one that usually kills in the first weeks of life.  Simply put, it means I go through salt way quicker than most people, and have to constantly replenish it. My childhood doctor told my parents that "for whatever reason" my body goes through salt much quicker and that not only was it okay for me eat lots of it, that I actually should.  And of course nothing crazier for parents to see than their child hit a salt craving and watch as I'd just pour salt into my hand and lick it up.  Over time, that hasn't changed at all.  Though now when I get hit with a salt craving, I'll dive into a jar of dill pickles and not come out until it's empty, juice and all.

Tomorrow early I'll be checking into the hospital as the spend time running tests on my blood. It promises to be great fun, if you like being stuck with needles as the take blood out of you, and inject stuff in.

Once they release me, a few weeks later, I'll have the results and another meeting with the Endo.

She's assured me, that if this diagnosis is correct and confirmed, it's treatable and I can live a normal healthy life.  But the upside to all this is that many of the health issues that I'm taking meds for, well they probably won't need medication before to long, and I'll be able to shed weight again with proper diet and exercise.  Which in the last seven some years hasn't been working.  I'll be thrilled to get rid of this extra weight, and be taking less meds.  But eventually it's going to mean buying new clothes, but fitting back into my old jeans.  I look forward to that part.  So there's a possibility of progress on the wind, and of course major health benefits, including but not limited to being able to sleep through the night for the first time in years.  That will be awesome!

Since the meeting with the Endo I've been running the stages of grief. And just in time for my day with the leeches (kidding folks) I've made some kind of peace with it I think.  This is a battle in one form or another I've been fighting most of my life and my father in particular always chalked it up to me being crazy, which meant more head doctors than time with someone who could really help.  Yes, without question CAH causes moodiness, depression and plenty of other problems as your body tried to keep you going as your electrolyte levels and hormones swing madly. But it doesn't mean you're crazy. Feeling like I've spent my life fighting a monster that really was under the bed that everyone said was all in my head?  Well it's depressing and feels like a life, not exactly wasted, but stolen from me once again.  Thus the stages of grief.

In the end, it's not what was, or could have been that really engages me here, it's a possibility of progress.

Sunday, September 16, 2012

The smell remembers when . . .

Imagery can be a powerful thing.  It's central to many kinds of relaxation techniques including guided visualizations and meditations.  But sometimes it can yield breathtaking surprises when least expected.

Scents, those tiny air born clusters of atoms can trigger relaxation, even memories.  Think of how you feel when you're at the beach, imagine the way it sounds, close your eyes and picture in your minds eye the way it looks, and now that awesome smell you associate with the beach.

If you had any success with this brief exercise in guided visualization, the beach you felt, heart, saw and smelled is a specific beach that you have been to and enjoyed.  You've also accomplished a well known stress busting means of relaxation. Congratulations!  If you didn't don't feel bad, that was a really quick, simple example. Usually there is more involved.

If you didn't, or have never been to a beach to visualize (oh the horror!) then try visualizing everything about a special place that you know well.  See how that works? How that feels? Even smells associated with the place?

In our often hectic life, we can be surprised by a sight, sound, or smell that makes us think of somewhere else far away.  Guided visualization techniques not withstanding, I'm sure each of you reading this has experienced something like that.  Specific places often have a complex mixture of cues that remind us of a specific place.  It's the nature of memory.  So just as no two types of flowers smell the same, different beaches have their own complex signature. Beaches not withstanding, think of the difference between the way the air smells in the fall, and in the summer time. Two very different scents yes?

As I've mentioned before, I'm a Stargate franchise fan. I've watched pretty much every episode and movie (except Universe) repeatedly for my own enjoyment.  I've had many dreams where I've been involved with the program, at the SGC, on Atlantis, or on the various ships they have, working with the amazing people there.  I've been through the gate many, many times, but will always remember my first time so clearly.  The Gate system is also involved in some of my meditations.  Specifically one particular planet that I travel to often.  So often I have an apartment there. My apartment is a few short blocks from a glorious beach that I go to quite often to relax.  For me the experiences, and the memories they are tied to, are no less real than places I've been to on earth.  Like a Star trek: Next generation era holodeck, my mind fills in all the details, ones I don't often notice but are etched into my memories with or without my notice.

Before I go any further, let me mention I've not yet been, in this lifetime, anywhere near the Mediterranean Sea on earth. Never spent time at any beach on the Med so I have no scent linked memories that go with it.

My beach on 427 (P4C-427) however is etched indelibly into my heart and mind in ways I'd even not expected. It is a wonderful place and I can often be found sitting there meditating at all hours of the day and night. It brings me great peace. Often when I'm meditating here on earth, in my mind I first go to my beach on 427 and do my sitting there.  So even though I've not fully explored the area, there are scents drifting on the breeze that cannot be missed or mistaken.

I tend, here on earth to eschew scented products most of the time. The chemicals and such they use hardly ever get the smell right.  Which is part of why I'm fond of incense.  It's made of more natural materials.  So imagine my surprise when I bought a bottle of Dawn that was labeled as Mediterranean Lavender and promptly forgot about it until the one I had open was finished.

When I finally did open it and start using it I stopped what I was doing completely stunned.  That was my beach the scent they had put into the soap.  It honestly surprised me so much I had to stop and read the label since I'd forgotten what I'd bought.  honestly I'd not even looked at the label when I got it, I picked it simply because it was purple.  No, I'm not kidding.  But it smells just like my beach on a completely different planet.  That really caught me up short.

I'm reminded of the Trisha Yearwood song "The Song Remembers When."  In it she sings about how a song on the radio can bring back a rush of memories.  I so get that, and it's a common theme, so much so that there are other songs that say basically the same thing in different ways.

In this case however "The Smell Remembers When."  And I have a new dish soap that I'll keep on buying. If only because it makes me think of my other home, far from here.