Unicorns

 

Unicorns are said to be "uncatchable" but nothing is impossible.  I feel that way about adrenal insufficiency sometimes.  After fifteen plus years of adrenal insufficiency, I still have to adjust and readjust hydrocortisone.Sometimes adrenal insufficiency seems impossible.  Sometimes, I feel like I've caught it by the tail.

For  couple of years, my blood pressure has been high.  Every time I'd go ANY doctor or medical professional (orthopedic guy, PAs, DO, dermatologist, ob/gyn), I'd bring up the high bp to no avail.  No one cared.  I told them that high BP was not normal for me, not normal for someone with adrenal insufficiency and not normal for someone who gets as much exercise I do.  I told them all that something was wrong.  I eliminated all supplements for a while, adjusted my thyroid meds, exercised more and less, adjusted florinef and sodium.  All the while, I was losing my hair in handfuls.  I didn't put the high BP and hair loss together.  AK did that for me. None of the things I tried for the hair loss and BP worked.

The only thing left to change was HC.  Those of you who know me know that I think we should err on the side of more HC so we don't die or feel like crap unnecessarily.  I SLOWLY titrated my daily base dose down by 2.5 mg.  I held the 2.5 mg decrease for TWO WEEKS before I decreased by 2.5 mg again. 

How could I not know that my HC was too high?  I was swollen, had headaches, impaired sleep, hair falling out but I wasn't gaining weight.  Everyone blames weight gain on too much HC.  I was waiting to gain weight before I could believe that my HC was too high.  We are all so different.  I don't gain weight from too much HC.  I didn't have insomnia.  I just wasn't sleeping great.  I thought you had to have "insomnia" and be awake all night long.  Sigh, you'd think I'd know better by now.

On less HC, my BP came wayyyyyy down and my heart rate went wayyyyyyy up.  I started getting really tired at about two pm.  For me, this is a sign that my base dose of HC is too low.  As per a suggestion by AK, I upped by about 5 mg/day.

 For the moment, I've caught the unicorn by the tail!

Live your life, learn your lessons

This isn't really about adrenal insufficiency.  I guess indirectly it is.

I came home from Arrowhead and got a bad case of bronchitis.  I'm relatively sure it was brought on by the cold temps, big effort and an hydrocortisone taper (bad timing on my part).  I was unable to teach my classes or do much of anything for a couple of weeks except run a mile, cough and sleep.

When I got back to teaching while still coughing one of my students said, "Did you learn your lesson?  You might not want to do things like that."  I smiled and nodded.

My real answer is that, yes, I learned my lesson.  My lesson was that putting myself out there was worth being sick or risking injury.  She doesn't know about the adrenal insufficiency and how being out in Northern Minnesota entailed more potential dangers to my health than she could imagine.  For all the times I've taken risks while having AI, I've suffered very few times as a result.

Every time I've had a negative outcome by doing something dumb or beyond my capabilities, I've learned far more than when I sat home on the couch watching TV.  I also came out of the experience with great stories.  Ask Paul about the time we bikepacked through the LaSals in snow without enough food.  What did I learn?  Check the weather conditions.  Bring enough food.  Listen to old ranchers when they impart wisdom.  Don't cry like a baby when someone rescues you.  Strangers are generally far kinder than we give them credit for.  Take more hydrocortisone than you think you need.

We all have different definitions of "putting ourselves out there".  That's OK.  Despite adrenal insufficiency, get out of your comfort zone.  Often the risks don't materialize and the worry prepares us to avoid the potential pitfalls.  Sometimes, the worry and anxiety wasn't even worth the energy.

Make sure you're prepared by having your injection kit with you.  Know how to use it.  Be prepared for your circumstances.

Live your life, learn your lessons!

"As for sickness: Are we not almost tempted to ask whether we could get along without it?" Nietzsche

As for adrenal insufficiency and hypothyroidsm, could I get along without them?  The simple answer is, "yes".  More complex answer is, that I wouldn't be who I am now without them.  Chronic illness forces you (if you want to be healthy) to eat well, sleep well, maintain a degree of fitness, learn about your condition and to advocate for yourself.  After you're done doing all of your pills for the week or month, all of the above items are nearly a full time job.  We are forced to be efficient with our time so we can fit it all in.  Our social networks change, to be healthy we have to socialize with others who have similar conditions so that we can find knowledge and experience.  Doctors simply are incapable of understanding and comprehending what it takes for us to be healthy physically.  Often, they are such poor advocates for us, they make us feel worse physically by neglecting to know anything about adrenal insufficiency.  Hell, sometimes they attempt to kill us by withholding emergency injection kits or will not allow us to have enough steroids on a daily basis to live a decent life.  They have no clue about comorbid conditions and then have the nerve to tell us we are hysterical or depressed.  (You all know how I feel about most physicians.  I'll stop.)

My point is that I and probably you are not who we would be without our sickness.  I constantly fear dying either by a doctor's mistake or by my own stupidity.  For this reason, I live every day to its fullest.  I set my goals high.  I do stupid things that would make for good stories if I die doing them.

Yes, I could get along without sickness but I wouldn't be who I am today. I don't think I would want to challenge myself as much physically, mentally and emotionally if I knew I had time and knew my body was going to hold up.  Would I live each day with the fear of death like I do now?  Probably not.  Would I get as much accomplished if I didn't have sickness?  No, I'd think I had time.  I don't and you probably don't either.  Get out and do while you can.

Another thing I could not get along without are the friends I have made and become reacquainted with along this 16 year journey.   I love you all and appreciate you.  I thank you for being here for me when I need you, when I need a sounding board, when I just need to vent and for a kick in the ass when you think it's appropriate.  Without sickness, I would not have you.  I could not get along without each and every one of you.  You are the voices in my head when I need help (Wanda!).  Sometimes you're the voice on the other end of the phone when I need my husband talked through giving me a shot at the peak of a hurricane (Ashley!).

Thanks to you all for reading this and for being part of my life, many of you for lots of years.  Love and hugs to you all!  Happy and healthy 2018 to everyone.