Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Sunday, August 17, 2014

Failing at recovery, lost independence, pulling my head out of my ass, whining like a baby

On August 6th, I had surgery on my right shoulder.  I ended up having a lot of work done on it, more than anticipated.  Between the surgery "extras" and the doctor's philosophy, my right arm is strapped down to my side about twenty some hours a day for six weeks.  Although I was warned that this was a painful recovery, I didn't believe anyone's story would apply to me.  I thought I would be different.

I am very, very lucky.  My husband has good health insurance on me.  One of my best friends flew out for twelve days to take care of my husband, my animals and me.  I don't have a job so making other arrangements or worrying about the loss of my finances was not of concern to us.

Because I usually post positive things and people get the impression that I'm like the Energizer Bunny, I wanted to share this difficult part of recovery.  I AM ABSOLUTELY NOT LOOKING FOR SYMPATHY OR FOR ANYONE TO FEEL SORRY FOR ME IN ANY WAY.  I want to be sure that I post a balanced picture of my situation.

Seriously, I thought I was going to be able to read, play games and take care of basic things around the house.  How hard could it be?  As it turns out, hard.  Each morning for the last ten days, it's taken an hour to mentally prepare to take a shower.  Nancy was feeding me, my husband and my animals, she was keeping my house clean and walking the dog.  All I needed to do was take a freaking shower.  I went on and on here and then deleted it.  Try putting your hair in a ponytail with one hand.  That's really all I need to say.  A shower and getting dried and dressed after is an exercise in frustration and pain.

I hit the rocks hard the other day.  It was mental and physical.  Constant pain, extreme disappointment in wasting days, lack of exercise and fear of getting fat.  Between no privacy (I am sleeping in the TV room in the middle of the house), pain/pain meds, loss of independence (try driving a stick shift left handed) and no routine, I freaking lost it.  I had to put myself in time out to cry alone, I had nowhere to cry except out by the trash can.  Embarrassing. My crying and bad attitude caused my friend to become more frustrated with me than she already had been.  I was a total bitch.  I am sorry it happened.  I threw a fit and drove away and cried for hours in the car. I nearly blew my life to hell.  I considered going to a bar and having a drink.  I seriously considered it.  After a year of sobriety, probably not a good idea because I've never in my life been capable of having one drink.  Luckily, I threw such a baby fit that I left the house with no shoes.

The following day, I did almost nothing but cry and watch TV. On a positive note, I finished watching both seasons of Orange is the New Black.

Was this a hydrocortisone issue?  Probably.  No appetite, crying, sadness, being unreasonable, crying more.  Why can't I see this as it's happening?   Could I have handled it better?  Absolutely.  What can I do differently from here on out?

  • Apologize to Nancy
  • Take sodium throughout the day, I am cramping from the pain meds.  If you've had this experience, please let me know
  • Split my hydrocortisone (the extra that i take on top of my regular dose) into 5 mg X 2 instead of 10 mg at once.  Take more HC on a daily basis until it's obvious that I DON'T need it.  Fucking steroid guilt is so useless and hurtful.  
  • Get back to a regular schedule punctuated by resting and arm exercises
  • Stop bitching and get back to walking, create a training plan for upcoming races.  I'm not allowed to run for three months.  I am allowed to power walk.  My running is nearly the same speed as my power walk.  Goals keep me moving and give me hope.
  • Set goals the day before.  I am inherently lazy and will do nothing but bitch and moan if I don't have a list for the day
  • Clean one room a day since cleaning the whole house is currently impossible and I have some issues about keeping the house clean
Want to hear more whining?  If not, stop.  If so, continue.

I've been described as compulsive or OCD.  I own it.  It's a coping skill.  My OCD revolves around cleaning, running and writing letters to my grandmother.  I can do none of these things right now and have a lot of anxiety.  Hmmmm, not a great situation.

My weight is a HUGE issue.  I know that it is for many people, especially those of us to take hydrocortisone.  For those that don't know, there is no way to measure whether you are on the right dose of hydrocortisone or not except by symptoms.  When one is sick or going through recovery from a surgery, how do you know how much hydrocortisone to take?  Enough to make your symptoms "normal" for your situation.  If you don't know what the "normal" reaction is to illness, how do you know how much hydrocortisone to take?  The answer is, you don't. Too much hydrocortisone will cause us to gain weight.  Couple that with an extreme decrease in exercise habits, what do you get?  A fat, sick person!  I really thought eating with my left hand only would slow my eating down but it didn't.

I weighed about 118 presurgery.  A couple of days after surgery, I weighed a whopping 129 due to the high dose of steroids, fluid retention (high dose of mineralocorticoids in the high dose of steroids caused me to retain fluids), IV fluids and having fluids pumped into my body to do the surgery.  Happily, I'm close to the weight I'd like to be at but it will be a constant battle.  I need to start exercising again.

That's enough pissing and moaning.  I want everyone to know that I'm not always a bitch on wheels.  sometimes, I'm just a plain old bitch.

Off to apologize.




3 comments:

W Brandenburg said...

Dusty,

I can only imagine how miserable you are having the restrictions. You already know your cortisol was too low when you had the melt down. You should know any weight you put on now .......you will take off later when back to full speed!!

Please take it easy and let yourself heal!!!!

Wish you were here....you could pick blueberries with one hand. :o)

Big bear HUG!!!
Wanda

Anonymous said...

Dusty,
You posted that on my 54th birthday. The day before I finished a timed bike ride - in which I improved my time from last year by over TEN MINUTES!!!

These things I have done with a lot of help from you. You helped me to see that Addison's is just something to deal with - not something to revolve around. There is just too much else going on - or that I want to go on.

I manage my own adrenal insufficiency smartly, thanks to you. I have referred people to you. Heck - we even met! :) Which was pretty cool.

Your rantings are just that. And they are temporary. I keep a journal, so that on the good days, I can look back at the bad days and know that they ended - just as I knew they would.

You will do the same. You are smart. You are tough and you are determined. Weight will not be an issue. The shoulder will only be an issue for a while. (Two friends had shoulder repair - it truly IS the worst thing ever - according to them... BUT - they are both fine now and have non-painful shoulders.)

You hang in there. Let us love you. Let YOU love you. you will heal. You will be strong. You'll be back to your old self soon.

Much love -

Gina in Asheville. (Tuffenuf22) :)

Dusty Hardman said...

Gina!!!!!!!!!!!!!! I miss you!!!!!!! When I listen to the Decemberists "This is why we fight" I think of you.

Happy birthday!

Thank you for the encouraging words. I really appreciate them.

Wanda, you know I think you are the bomb!

Thank you both!

XXXOOO

Dusty