Tuesday, August 26, 2014

Three week post surgery update-weakness

Last week, I went to Tampa for my follow up.  Lots of talking ensued.  The doctor was impressed with my shoulder.  He gets paid the same if he puts in one anchor or six.  He put six in my shoulder.  Some people can take their sling off at four weeks, not me!  I have to wait six weeks.  Some people can start running at two months, not me.  I have to wait three because I had such impressive damage.

He told me I'm allowed to walk as much as I want.  I asked him what my limit was (anyone who is an ultrarunner knows this is a very reasonable question).  He couldn't come up with a number as no one has asked him that question before.  His biggest concern for me was that I walk on a treadmill inside so I don't grow fungus in my armpit.  At the moment, I'm not capable of walking.  It's too painful and my energy level will not permit it.  We are in the middle of moving and packing and cleaning one armed is sucking the life out of me.  Next week, I begin to walk long distances!

I do want to sneak in here that I am streaking still.  I didn't tell the doctor.  I'm at day 913 of my one mile a day running streak.  I am running carefully, nonbouncingly and minimally.  Mentally, it has saved me.

Speaking of mentally.  I'm doing crappy.  I wouldn't say I'm depressed but maybe I am by some definitions?  I am tired and frustrated.  I had such big plans for post surgery.  Play games, catch up on emails, read and hang out with friends.  None of that came to pass.  Mostly, I stared at the TV once I found a position that was not painful.  I was unable to focus or concentrate enough to finish anything at all except switch TV channels.  

A couple of my friends have gotten very, very mad at me for not being who they needed me to be and for me not doing what they needed me to do and especially for me not behaving the way THEY thought I should.  I am sorry.  I have nothing to give right now.  Nothing.  A few people have asked how I was doing and when I said, "Bad" they just carry on and tell me how great everything is with them.  The vast majority of people have been so kind and wonderful.  They have gone out of their way to cut me slack, make me laugh, offer me advice and listen to me bitch.  For that, I am eternally thankful.  It's not fun to be weak.  It's a lot easier accept the quality of weakness when I'm treated with kindness.

Back to packing and cleaning.  We are moving out of this house in Punta Gorda on Friday and to a new home in Vero Beach, Florida.  I will miss my friends here!  I will miss the birds!  Don't worry, my husband has hired muscles to move boxes and furniture. For once, I will not have to carry heavy shit!!!

Thanks again to the friends who have been so wonderful and accepting of me and my current situation.  Thanks to my husband for making dinner each night.

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.

Sunday, August 10, 2014

Failure and surgery and recovery

Long time no post, as usual.  I hurt my shoulder on June 20th, 2014 and I DNFed (Did Not Finish) Vol State for various reasons.  I hope to post about Vol State some other time.  I have some great pictures.

I injured my shoulder badly enough that I needed surgery.  I am hesitant to post anything about this because I am NOT looking for sympathy in the slightest.  I DO want to post about my surgery because it's the first time I've been under General Anesthesia since being diagnosed and I think it will help others to know how I handled it.

I have to apologize to others on my forum and in the past for acting like, "Well, just print everything out and tell them how it is!"  That was not how it worked for me (although close) and I can see how things could have gone very differently.

First, I printed out two of the below documents.  I am at a loss as to how to link the documents here.  My brain is not working

Surgery Guidelines
NADF Guidelines

When I met with the surgeon about the surgery, I gave him the Surgery Guidelines with my procedure requirements circled and he immediately called the anesthesiologist.  The anesthesiologist insisted on testing my sodium the day prior to surgery (fine but, in my opinion unnecessary).  I did not meet with the anesthesiologist until just prior to surgery.  I did not end up handing him any of the guidelines.  

Here was our discussion.  

Me, "I have adrenal insufficiency and need 100 mg Solu-Cortef prior to surgery."
Him, "OK, that's what I usually do, sounds great."
Me, "I present differently than many people with AI when I go into crisis, my BP goes high."
Him, "Yes, that's different, most of the time it goes low, right?"
Me, "Yes.  Would you mind giving me 50 mg Solu-Cortef through the IV after surgery so I don't have to worry about trying to take it orally?"
Him, "Do you want Solu-Medrol or Dexamethasone?"
Me, "No, I need the mineralocorticoid and fast acting Solu-Cortef."
Him, "No problem, you've got it.  I'll let them know in post op."

I have to say. there was more  and I felt very comfortable with his knowledge and that of his coworkers as far as AI goes.  Perhaps this is how people get in trouble?  Regardless, everything went fine.

Here was my protocol on the day of surgery:
10/10/10 HC in the morning before surgery (no food or water after midnight)
2 hour surgery at 2 pm with 100 mg Solu-Cortef
50 mg Solu-Cortef post surgery
2 hour car ride home


Day of surgery (Wednesday)
For the first time in my life after surgery, I was NOT nauseous.  I asked for a hamburger and fries as I was waking up.  I ate the whole way home in the car and had meatballs when I got home.  I actually did not feel terrible.  The amount of HC I got for surgery might have been slightly too much for a 1-2 hour procedure BUT I am glad that is what I got. 

Day 1 post surgery (Thursday)
Took HC (65 mg or so?  My usual is about 35) and pain killers as needed.  Felt better than I should because of the block on my arm.  No nausea.

Day 2 (Friday)
HC about 55 mg and painkillers at the end of the day.  No nausea.

Day 3 (Saturday)
Forgot 10 mg of HC in the morning that I should have taken and got nauseous.  Pain killers after noon.
50 mg HC.

Day 4 (Sunday)
I will have taken 50 mg HC by the end of the day and pain killers before bed.

Apparently, with shoulder surgery and rotator cuff injuries, sleep is a big issue.  The last 6 weeks have been tough sleeping.  Since surgery, sleep is about two hours at a time for about 6 hours.  Good thing I can function OK on very little sleep. Pain is not terrible considering the damage was extensive, they did extra procedures and put in extra hardware.  

If you have any questions, please let me know in the comments.