Rant: Think your surgeon knows what he's doing with hydrocortisone dosing for surgery, think again

http://www.asaabstracts.com/strands/asaabstracts/abstract.htm;jsessionid=B8A9D5FA13A9A47553678ED64622BC4A?year=2015&index=16&absnum=2911

A1219 October 24, 2015 1:00:00 PM - 3:00:00 PM Room Hall B2-Area C

Survey of Pediatric Anesthesiologists Regarding the Use of Peri-operative High Dose Steroids for Children With Adrenal Insufficiency

Hardave S. Gill, M.D., Kristine Urmson, M.D., FRCPC, Jennifer O'Brien, Not Applicable University of Saskatchewan, Saskatoon, Saskatchewan, Canada

Disclosures: H.S. Gill: None. K. Urmson: None. J. O'Brien: None.

Background: Adrenal insufficiency is a disorder of the adrenal glands where they do not produce enough of certain hormones, mainly cortisol and aldosterone. Management of patients with adrenal insufficiency presenting for surgery in regards to steroid supplementation remains unclear. Congenital adrenal hyperplasia (CAH), one form of adrenal insufficiency, is a disorder involving a deficiency of an enzyme involved in the synthesis of cortisol, aldosterone, or both. Current guidelines are clear that high dose steroids are recommended for children with CAH undergoing anesthesia. High dose steroids have potential risks such as bradycardia, hypotension and asystole, increased risk of infection, blood glucose disorders, liver & gastrointestinal effects, and psychiatric syndromes. Given the risks identified, it is important to examine if current recommendations reflect clinical practice in providing optimal care for patients. Methods: Local research ethics board approval was obtained prior to study commencement. A cross-sectional survey was distributed following pretesting and pilot-testing. Invitation to participate in the survey was distributed via the Canadian Pediatric Anesthesia Society members’ email list. The initial email invitation was followed with two additional invitations to complete the survey. Responses were analyzed using standard tabulations. Results: 55% of respondents would not provide stress-dose steroids for a cystoscopy and 21% would not do so for a laparotomy, despite the Endocrine Society Clinical Guidelines on CAH. See Table 1. Discussion: Our results demonstrate variation in clinical anesthetic practice regarding stress dose steroids in children with CAH undergoing anesthesia. Even when guidelines are provided, many respondents indicated they would not follow them. Our data also highlight that the decision to provide stress dose steroids is related to the proposed procedure. Finally, given the significant variation of practice, a need for future research is identified with an eye to change current practice recommendations.

Disappointment and recovery

It's been over six months since surgery.  Recovery, mental and physical, has been painfully slow.  I'm not exactly the type of person that expects quick results or miracle cures.  I worked for nearly five years to accomplish my first 100 mile race.  I set goals every year and plan how I can accomplish them.  I have approached this shoulder no differently.  Slow, incremental changes and daily practice.  The son of a bitch (my shoulder) can lift my hand to wash my hair, I can sleep without pain, and I can put a coffee cup into the cabinet although I am not graceful at it.  I have to think about nearly every movement of my arm over shoulder height.  I have to cheer on the shoulder like it's a three year old child.  WTF?!  I hurt it doing kips, pull-ups and push-ups (on top of 20 years of abuse) and now it needs to be tended to like a child.  This is a very disappointing feeling.

I am grateful that I can lift my arm.  I am grateful that I can reach up to the bar for the Gravitron at the gym.  I sure wish I could adjust my ponytail on the fly but I can't.  I'm SO GLAD I can wash my hair two handed and with regularity.

I think the hardest thing to accept with this whole recovery is that I failed at the Addison's aspect of it.  Trust me, I have learned from my failure but it's hard to accept that I think I know so much and can't even manage myself properly.  Without proper management of Addison's, brain fog sets in, pain is greater than it ought to be and there's a lot of crying.  I did great with surgery and immediately post surgery.  In the days that followed, it was hard to determine how I was "supposed to" feel.  I have only had surgery a few times and never since Addison's.  I didn't know what was normal.I didn't take enough HC.

What I felt mentally and physically was NOT NORMAL.  I thought I was taking enough hydrocortisone (hell, I was taking much more than suggested but I was freaking symptomatic-no appetite, weight loss, brain fog from hell, inability to think straight, crying about freaking nothing and watching Jerry Springer) but I clearly was not.  I was unable see all of the symptoms.  A couple of people kindly suggested I take extra HC (Thank you C :) ) but I didn't feel it was necessary.  In retrospect, I should have doubled my HC intake even though it would have caused a heart attack if most doctors knew how much I would have taken.  It's entirely possible that I might have only needed crazy high amounts of HC for a few days or a week before I leveled out to an "acceptable" amount of HC but I never gave myself the opportunity to know.

The result of not taking enough HC was devastating to me mentally and emotionally.  I was unable to handle much of anything.  It didn't help that I was kicked off the Parrot Outreach board two weeks after surgery and we moved cross state three weeks after surgery.  With my arm strapped down for six weeks, I was basically unable to do anything that was a coping skill for me (cleaning, running). I'm a person who needs my space and for three MONTHS, I slept on the living room couch.  I wasn't taking enough HC.  I was a fucking mess.  It's been a slow recovery from the mental damage that I did to myself.  I got so far behind in life that I felt I would never get back to it being normal again.

The first thing to come back were my legs.  I was able to run and walk which also meant I was able to get out and explore and get dirty so I could cry about taking a shower.  Taking a shower was way harder than adventuring.  I was able to run a couple of races so I was able to socialize again.  Unfortunately, my brain took a long time to recover.  It got better slowly but until after Christmas (surgery was early August) I was unable to think very clearly and I was unable to accomplish things, even basic tasks.  Christmas was a disaster.  I was unprepared and didn't give a shit except I did want presents!

In the last six weeks, I've accomplished more than I have in the last six months combined.  I am thankful for that.  It's nice to know that I don't have a drawer full of lists to sort and complete.  I have revised my website and started my business Addison's Support Advocacy, LLC.  The house is clean, the animals are tended to and I'm ready to start plowing through my 2015 goals.

Seven weeks post surgery to current

Surgery pictures, inside my shoulder

The surgeon told me this was going to be a slow recovery and said, "If you think you are going to be different, you are wrong."  I was wrong.  I did think I'd be different.  I did think I'd recover faster than most people.  I did not and have not.

At six weeks, I was allowed to start moving my arm and take off the sling.  The first six weeks after surgery, I was confined to the sling 24/7 except when I was showering.  As a result, all of my muscles cramped up and I was on painkillers.  Bad combo for Dusty.

As soon as I was allowed to move my arm and start physical therapy, I stopped using painkillers (and haven't taken one since) and the pain diminished immediately. Physical therapy has been good.  I picked a great place with fun people.  As you can see from the pictures below, my progress has been slow.

I was cleared to run on October 31st.  I kept doing the mile a day streak and had my 1,000th day of streaking on November 8th.  My first 50k post surgery was Mutual Mine on October 26th.  It was a great race where, once again, I finished Dead Fing Last (DFL).  The second week in November, I was Jim Schroeder's crew for Icarus 6 day.  He did 250 miles in his first six day attempt!  On November 15 and 16, I paced my friend Margie to her first 100 mile finish and I got 50 miles in the process.

Jim Schroeder on the 1km loop at Icarus

Beautiful sunrise at Icarus (Fort Lauderdale)

Margie and I after her 100 mile finish at Wild Sebastian!

Nearly four months postsurgery, I was able to lift my arm to the front over my head!  A few days later, I washed my hair with TWO HANDS for the first time since June 20th.

This weekend, I'm going to attempt another 100 miler.  I may not be in great shape for it but not bad shape either.  When I signed up for it in July or August, my husband thought I was crazy.  I knew I needed something big to motivate me to keep moving and not give up.  It was the right thing to do.

2015 will be full of running and adventures.  All but one of the adventures are tentative.  I am ready to do great things (great things=memorable, not necessarily "great") even if I'm unable to lift my right arm over my head more than three times in a row!

All pictures below were taken beginning six weeks post surgery and I'm lifting my arm to the front.  A few pictures are missing because I didn't have enough clothes on.

Shoulder update-Four months post surgery, the first six weeks a retrospective look

This is too long, sorry.

Three days post surgery, doesn't look too bad, felt awful!

On Saturday, it will be four months since my shoulder surgery and five and a half months since my initial injury.  This has been one of the hardest things I've ever done.  I have learned a lot about myself, my friends, adrenal insufficiency and feeling like shit.

In June, I ruptured two of my rotator cuff tendons in my right arm and tore a third one.  We only have four tendons and they help raise and lower the arm. How did I do it?  Well, the ultimate activity was a "girl" push up but there was a lot of history behind the push up incident.  Pain I had felt in my pectoral muscle for about 20 years was a tendon slowly giving way.  Falling off mountain bikes, rock climbing, cleaning houses, shoveling Idaho snow (which I did at my house, and two clients houses), and weight lifting all ultimately contributed to the rupture.  The push up that blew the tendons could have just as easily been a very aggressive swim workout or unpacking a moving truck.  It was bound to happen at some point.

Looking out of our garage, snow is not that deep in front of the door but note the piles next to the driveway.  Heaving snow up and over them was not great.  Unlike many parts of the country, we had to shovel snow from September through May in Idaho.

I found a surgeon and had a pretty positive experience with him and the anesthesiologist for the surgery.  Immediately post surgery, I felt better than I had expected.  Post surgery, the shoulder had to remain immobile for six weeks.  Keeping a formerly active limb immobile causes a lot of pain and cramping to all the muscles attached to the limb.  Biceps, triceps, lats, etc.  By four weeks post surgery, I was wracked with pain.  I was taking pain killers and they were making me insane.  Everything was cramping.  It didn't help that we moved during this time as well. Any way, the first six weeks were not only painful physically but emotionally as well.  I have my issues and I don't deny that!  To work things out in my head, I run, I clean, I am active, I spend time alone.  I was sleeping on the couch in the living room, no privacy.  I was specifically told I was not allowed to run for THREE MONTHS (I didn't listen and ran my mile a day), my energy levels were low and my left arm was not great at obeying my brain.  To give you an example of my screwedupness, taking a shower was a pretty awful, painful, stressful part of my day.  It took forever.  Try strapping your arm down and then wash your hair and dry off.  It takes about twice as long.  Add exhaustion, crying and a lot of pain in getting the sling off, clothes off and then clothes back on.  Because showering was so awful, everything went downhill from there.  Pain pills made me a crying mess.  I do think my hydrocortisone intake was pathetically low.  Thank you Cathy for your frequent texts that I totally did not listen to.  I wish I had followed your advice!!!!!  I have a lot to say about post surgery hydrocortisone guidelines but not right now.  My brain was completely off line.  I was watching Jerry Springer and crying a little about the paternity cases. NOTE:  If this happens to you, take about 25 mg of HC right then and there.  Crying while watching Jerry Springer is NOT NORMAL and a symptom of LOW CORTISOL.

Basically, I was very, very fucked up for the first six weeks after surgery.  I was a blob.  I was a crying mess.  I couldn't accomplish anything.  I watched trash TV. I cried and cried and cried.  It was awful.  What hurt the worst was Pam kicking me off the board of the Parrot Outreach.  I'm still tearing up about that now.  I love those damned birds and miss them.  She tore a piece of my heart out at a time when I needed it.  Shessh.  I'm crying about it right now.  The saddest part was that she never gave me any reason for it.  She was a coward and it appeared that she only wanted to hurt me badly when I was down.  I guess that's because I was leaving her and the birds and she wanted to make the first strike.  Sadly for the birds, I was committed to writing grants and trying to get the Parrot Outreach money for operating expenses. Sigh.  I think the craziest thing was that the people that I thought could relate to me the best and understand what I was going through the most were the ones who saw me as a failure because I was completely and utterly unable to cope with life.  They abandoned me and kicked me while I was down.  Perhaps I'm pathetic all the time and when I was even more pathetic, they cut me loose?  I guess that's fair.  Whatever.  I'm sorry that the birds have one less person to love them and care for them, even if from afar.

On a more positive note, there were so many wonderful people who stuck with me, sent me cards, called, emailed and texted.  Getting clips of people's children doing cool things, seeing funny pictures, getting things in the the mail always made my day better and brighter. A couple of amazing friendships (Jim!) have come from this awful time.  Having so many people stick by me at such a rough time was a wonderful thing.  Thank you everyone.  I appreciate you all so much.  Thanks to my husband, Paul, as well.  I had my doubts about how he would handle me and my bad attitude twenty four seven but he did pretty well for the most part.  Toward the end of the six weeks of immobilization, I think he might have been thinking about killing me in my sleep but he refrained.  Thanks, Paul!

My next posts:

• Post surgery hydrocortisone guidelines are bullshit
• Seven weeks to current shoulder update
• Shoulder in pictures
• What the future holds

If you have any questions or topics regarding my surgery and rehabilitation, please put them in the comments or email me at dusty@addisonssupport.com

Eleven weeks since surgery

I have started feeling better since my last whining post.  With increased use, mobility and strength, the pain has decreased to nearly nothing most of the time.  I have been able to sleep as well.  Most notably, my mind has returned to functioning.  All of these things make for a much better attitude and more productive days.

I started physical therapy at six weeks and I think I only have one more week left.  After that, I will be discharged and given exercises to do at home.  My physical therapist recognizes that I'm self motivated and overly compliant.  Speaking of physical therapy, I picked them from my list of seven providers from the insurance website.  I got so lucky.  What a great group of people!!  The physical therapist did not believe shoulder rehab should be painful.  It has not been painful.  Yay!

Our new home on the east coast of Florida is very nice.  We moved from Punta Gorda to Vero Beach.  Vero is more suited to us.  We are in a quiet neighborhood and about fifteen minutes from the beach.  The town of Vero is more diverse and has a lot of museums and activities.  There are a bunch of grocery stores and Sam's Club is just five miles away.  So many of my ultra friends and one of my Addison's friends are close.

I'm not supposed to be running but I, of course, kept my streak going.  After visiting the surgeon at my six week appointment, he told me that I couldn't run because he didn't want me to fall.  Let's just say, I have not yet fallen.  I'm signed up for a race on Sunday and plan to walk the vast majority of it.  I am looking forward to being in the woods with my ultra family.

I am finally catching up on thank you cards and getting projects done.  It's getting easier to hang pictures although I have to put the nail in my right hand, lift my right hand with my left and pound the hammer with my left hand.  At least I sweat less and shake less when I do this!

Overall, I'm feeling so much better.  I'm grateful for those who have stuck with me and supported me.  Thank you to those who have made me laugh through my tears and have encouraged me when I was down.

The pictures below have nothing to do with this post.

Vero Beach sunrise

Sweet, old Dolly

Keiko the pistol

Walk way to the beach

Sunrise

Sunrise

Train tracks before sunrise

Lucky to live here!

Found in my neighborhood during one of my daily miles!

Like Idaho with palm trees

Beautiful, peaceful view out the back of the house

No more grizzlies, just gators

He didn't want his picture taken

Oslo Conservation area!  Trail near my house

I love mud

I love bridges

Panoramic from the "observation tower" at Oslo Conservation area

Sunrise at St Sebastian River Preserve State Park.  The trail SUCKED but the sunrise was pretty.  I will be pacing my friend Yogi in mid-November (surgeon approved)

Also at St. Sebastian.  There's a white tail deer in the middle of the picture but you can't really see it

Getting better, slowly but surely

"Absolutely ridiculous" is how I'd describe some of my behavior over the last two months.  Unfortunately, not "absolutely ridiculous" in a great, fun way.  I thought I'd be the exception rather than the rule, I'd get shit done, this surgery wouldn't slow me down.  I was so wrong.  Over the last two months, I've gotten so very little done.  My behavior has ranged from pathetic to really pathetic.  Nearly two months post surgery, I'm still in pain, still exhausted.  Three and a half months after my initial injury, I've slept very poorly nearly each and every night.  The pain is normal, the lack of sleep is not only normal but expected for at least another month.  Recovery from surgery is three to six months and full recovery is one year.

The good news is that I stopped taking pain meds ten days ago and within the last seven days, I've stopped crying hysterically for little to no reason.  I only cry for pretty good reasons now.  I've been exercising more, walking mostly.  The best news is that nearly SEVEN weeks after surgery and nearly total immobilization of my shoulder, I am in physical therapy and out of the stupid, sweaty, stinky sling.  I can do a little more than before.  Sweeping and mopping the floor is not excruciatingly painful.  Cooking and cleaning up after cooking is still very awful.  Thank you deli section and your rotisserie chicken!  Thank you Sam's Club and your gigantic, mixed, organic salad.

Did I mention that we moved from one coast to the other three weeks after surgery?  Yes, we moved from Punta Gorda to Vero Beach.  Vero is lovely.  We are close enough to the beach to go often.  There are grocery stores near our home.  The community has more to offer.  Our new neighborhood is new, nice and quiet.  There are few children (no offence people with kids!) but it's not a retirement community or, like our last neighborhood, hospice community.

I'm still taking, what I consider, a shit load of hydrocortisone.  I'm starting to wonder if my thyroid meds are too high, sigh.  I have no doctor here.  How does one order labs when she has no doctor.  Yes, I will call my PG doctor but do not have high hopes.  If he will not order the labs, it's time to make appointments, wait and interview doctors and then see if they will help me. Sigh.  Just thinking about setting up an appointment is taxing.

Well, I'm going to go take a nap.  Enjoy the pictures from Vero Beach.

Vero Beach sunrise

Vero Beach

Vero Beach, here comes the day

Vero Beach

Vero Beach, graffiti

I can pull my underwear up with two hands

Yeah, pulling your underwear up with two hands might not sound like a big deal.  It is.  After six weeks of pulling my underwear up with one hand, it's a thrill to easily slide them up and on.  I can nearly reach my left arm pit with my right hand (without propping the right hand up on something).  Progress is happening.  Slowly.  Very, very slowly.

This shoulder surgery has been the hardest thing I've ever done.  It may even be harder than being undiagnosed with adrenal insufficiency.  I have become virtually useless, short tempered, my mind doesn't work, each and everything I do takes twice as long, my driving is dangerous (stick shift and a useless right arm), constantly exhausted and on the verge of tears at all times.  I have been humbled.  I am so dependent upon others (STILL) that it's not even funny.  I nearly burst into tears if I'm in the grocery store and someone helps me empty my cart on to the belt.  Every night, I'm thankful to fall asleep and not have to need anything or wish I had help doing things.

Sleep is another matter.  Since I hurt myself on June 20th, I've rarely slept well.  Each and every time I turn or move, the shoulder lets me know and wakes me up.  I haven't slept on my right side in three months.  For the last six weeks, I have only been able to "sleep" on my back.  Ugh!  

Each day, I wake up hopeful that it will be better than the last.  I hope that I will accomplish something.  I wish, each and every day, that I had someone to put my hair in a pony tail so I look like less of a wreck. I am hoping that the circles under my eyes are not permanent.  Each day is getting incrementally better for the most part.  The pain has lessened.  I am allowed to be out of the sling.  I can use my hand and forearm more.  The right arm, even if it's out of the sling, does not work well.  It hangs limply by my side or is tightly held against my chest.  I can only walk about a half mile with it out of the sling before it gets very uncomfortable.  Sigh.  

Physical therapy starts Monday.  I will fall into another ring of Hell.  I have been told by several people, including an ortho friend,  that shoulder physical therapy is very painful.  I like opiates and all but, damn, I'm tired of them.

I wonder, if I had known how awful this time post surgery would be, would I have had the surgery?  Would I have opted for being slightly disabled?  Time will tell.  I hope that this arm works once I've regained strength and range of motion.  I really hope that all this mental and physical pain was worth it.  

Perhaps I need to show more gratitude?

I have been getting out and walking on the beautiful beach.

I've been spending time with my sweet bird, Keiko.

The view out the back of the house is amazing. I have really been enjoying it.

Sandhill Crane

Amazing view out the back windows

I'm also thankful for my husband for putting up with me.  Thanks to Jim S., Yogi and Molly for texting/Facebooking me every day with great stories of the things they are doing as well as support and encouragement when I need it most.  Thanks to Milissa, Donna, Allison and my mom for the late birthday presents.  I love getting something in the mailbox when I least expect it.  Thank you, Bonnie, for the cards.  Thank you, Heather, for the funnies that appear in my inbox with regularity.  Thanks to everyone who is sending good thoughts my way.

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.

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.

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

Results:

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.

Struggles:

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.

Africa here I come

In the last two days, my ankle feels so much better.  I feel hopeful that it will not hurt in eight days when the race begins.

I have a hectic 24 hours ahead.  Murphy's Law is in full force.  The two weekends before my trip (last weekend and this weekend) are full of preparations for my clients.  One client flew in and out of town last weekend and the other client this weekend.  What this means for me is lots of cleaning and driving to and from airports.  I'm very happy to have such great work but I sure wish it were at a different time.

I've run a couple of days this week.  Half run and half walk actually and that's when my ankle started feeling better.  Probably just coincidence.

Once I go to and from Jackson Airport for my clients tomorrow, I am hoping I can focus on Itinerary, packing, medicine prep and just getting focused.  I leave for Morocco on Tuesday.  I am also hoping to put together a few posts with info on my trip preparation in case it can help someone else to plan a trip or so it will help me in the future!

Addison's, hypothyroid and minor injury

Just a quick post here with some observations about the last week.  As you all know, I whined about spraining my ankle.  It seems to be fine and healing quickly!  It looks gross and green but the swelling is down and I'm not limping any more.  It never got so bad that I had to stop doing my mile a day...the streak LIVES! 396 days of one mile a day!!

This post is not an effort to get sympathy.  I don't want any.  I'm fine and my ankle is getting better quickly.  Tomorrow I'm starting heat training.  This hiatus from running has given me an opportunity to organize my stuff for MdS.  I leave on March 29th!

Here's the point, although the physical pain of a dumb sprained ankle was not disabling and my life is going well, I have had some big troubles with my emotions.  I don't know if I'm self-medicating with the exercise or my hormones are greatly affected by injury and pain but 5 of the last 6 days have been emotionally tough.  I'm not one to admit this stuff and Addison's people think everything is usually hunky dory with me.  It's not always great and I don't always feel awesome.  You Addison's people all need to know that!!

I've been tearful, sleepy and unmotivated, very untypical of me.  Here's the timeline of my meds:

• Wednesday, fall down go boom, take 40 mg HC extra on top of 25/day usual
• Thursday, owie and mental stress of 17 year old son and doctor appoitnments, 50 mg HC for the day
• Friday, extra 10 mg on top of 25/day.  Son suspended for 5 days (Me punished for 5 days for being a bad parent is more like it, the kid gets a vacation!). I WAS A WALKING DISASTER.
• Saturday, talked to Ashley and had a good talk, suspect thyroid might be implicated in my crying and whining behaviors.  Took temp, 97.1 took an extra 6.25 mcg of T3, crying slowed to a crawl and temp went up to 98.1
• Sunday, tired and took it easy, whiny
• Monday, feeling more like myself especially after a good, strong mile.  Slightly tearful.
• Tuesday (today) temp low, took an extra 6.25 of T3.  Still feeling a little icky.  Ankle feels much better.  Meeting with PT today and will discuss self-medication with exercise!

What I'm getting at is that my emotional state DOES NOT MATCH MY PHYSICAL INJURY.  There's more going on here whether it's lack of exercise or injury causing other hormones to be off.  Addison's people, it's important, when you're injured, to talk to someone else and get an objective opinion about your situation so you can feel better quickly.  Are you taking too little HC, too much, need to increase T3, need to go for a walk?  Remember, you're not alone.  

There's little to no research on Addison's and exercise, Addison's and minor injury, we've got to work together and share our experiences to come up with practical solutions!

Inconvenient bump in the road, I mean pothole.

See that little pothole above this caption?  It was covered by a puddle.  I jumped the puddle and put my right foot right into the pothole, rolling my ankle in very hard.  In a split second, I managed to bruise both my knees and an elbow, twist my ankle, get wet from the waist down (puddle, not pee), and induce severe mental stress.

Wednesday evening, I thought I was being so graceful, leaping the puddle.  It was not to be.  I looked like an idiot.  I was on my hands and knees next to the highway screaming profanities.  Yes, I twisted my ankle, hard.  I was nauseous and dizzy when I stood up after the fall.  I was so out of it, I didn't even realize I had hydrocortisone with me.

Kitty gave me a ride home and helped me into my house.  When I got into the house, I took 20 mg of HC.  Freaking out, I had my husband drive me to the hospital for an X-Ray.  I needed to know if my Morocco trip on March 29 was to be or not to be!  The ankle hurt very badly and my brain hurt worse.  I think the mental pain was worse than the physical.

The bruising about an hour after the twist

While in the hospital, I got no pain killers and the service was slow (it was busy).  I got no painkillers but didn't really need them after about 3 hours.  I texted Ashley who did my thinking for me, I needed to know if I needed more HC.  She told me to take 50 mg.  I took another 20 mg immediately getting my post injury intake up to 40 mg.  I felt comfortable with that.  Luckily the PA on duty, Lis, at our small hospital is really athletic and knows about MdS.  She was very sympathetic about my mental pain.  She said all the right things to me, that it wasn't broken and it would be well enough to run on by the April 3 start of the race.  She got me in with Dr. Brown at 11 am the next morning.

Thursday morning before my appointment with Dr. Brown I contacted Dan at Streubel Physical Therapy.  He got back to me immediately and Sharon got me in to see Marijke right after my appointment with Dr. Brown.  Sometimes living in a small town is so satisfying!!!!!!  I got great care from start to finish with this whole debacle.  All of them were so compassionate, including Sharon the receptionist/massage therapist at Dan's office.  They all are athletic enough to know what a big deal MdS is to me.  I doubled my steroids all day on Thursday.

The UNBROKEN ANKLE

Marijke's expert taping job to help with the swelling.

I used these tissues on Thursday.  Thursday was a tough day.

Friday I took an extra 10 of HC.  Today, Saturday, I might take 5 mg later.  I can feel the fatigue setting in.

Any how, the verdict overall is that I will be fine.  I have enough time to heal.  It doesn't hurt so much as ache and feel swollen (as it is).  I'm RICEing it.  Dr. Brown told me that I could walk my mile on it so my streak is not over!!!

I am feeling quite a bit of fatigue.  Very disproportionate to the severity of the injury.  I think I'm going to start an aggressive core and upper body workout program.  I might be able to ride a recumbent bike if my ass can handle it, the ass falls asleep on the recumbent.  I think exercise does more for me than keep me in shape, I think it fights some fatigue!  The ankle is bruised on both sides today and gross looking.  The pain is not bad but I don't feel like running on it or even walking much.  I'm going to take this time to get bills paid, schedule the next two weeks and take care of business so I can run in three weeks!

If you're wondering why I went into so much detail here about meds, how I feel and what I've been doing the last three days, it's more for my records than yours.  This is the only consistent diary I've got and I'm taking advantage of it. :)