Part Two

This week started off great.  I felt "normal".  I have been getting the kids off to school on my own for the last few weeks by my self, not needing help.  That is a pretty huge deal.  Last year, I can count on one hand how many times I took my Wyatt to school.  I was just too ill.  I could not rise out of bed, especially if I had tried to work the day before or tried to clean.  My body needed an entire day to recover.  So, Monday I woke up at 6 am on my own with a desire to READ and sip a cup of coffee in the quite.  SO I DID! Peaceful Monday morning I love you! An hour later my oldest son, Logan woke up, I have not witnessed this on a school day in two years.  I talk to him... do motherly things like help him get ready...nag him. It was great.  Off to school he goes.  Then, my little ants come marching down the stairs.  I feed them.  Get them dressed and we watch real cartoons.  Not the junk they have out now, but the good stuff like Tom and Jerry.  Wyatt is off to school first and Sissy to heads to preschool last.  Tuesday's are my regular infusion day. I spend my day making phone calls and getting crap done. I felt motivated.  After the infusion was the junior high choir concert.  Again, I felt proud to watch my son sing, and to be there for him. Wednesday I posted about already. We had the field trip to the farm. I felt my heart grow, and my sense of self grow as well.  Feeling like a failure as a mom for so long, and finally having a week that went so well does more for the soul than you can imagine.  Thursday I had planned on just taking the kids to the doctors with me, but my mother in law said she would pick them up from school and I could just go myself.  Freeing up some cousin time with one of my favorite people J.  J is more than a cousin is a sister/friend/everything.  I was excited to spend time with her, and to tell her about the peace I was feeling and how well I felt this week.  Fast forward to doctors appointment.. make all necessary appointments, get orders, yada, yada. Time to go to Logan's last 8th grade football game.  It was awesome! They played great, Logan did so well. He came home in a terrible mood, which in turn made me have to play bad cop.  Ugh! Killing my vibe kid! Anyhow, I just let him have his fit, told him to rethink his methods if he wanted his Ipod for the weekend. End of that story.  Now for the shit storm.

I don't believe in coincidence's at all. I believe the universe tells us things and we just fail to listen.  

So, when my phone started dinging 5-6 times at 5:40am I really should have paid attention.  It was an audio text from a friend who I adore, but we rarely talk.  And I have never gotten an audio text from her.  I thought Geez-o-petes! And rolled back over.  I should have thought, hey I have been waking up at 6 every morning.  I should probably get up, respond, drink some coffee, and read.  There is a reason I am getting these texts. The dinging was like an alarm going off.  

So, an hour and a half later when I wake up with a migraine, I cannot move, severe nausea, and I know in my head something is very wrong.  I am not okay.  I had to wake my husband. I knew I was heading towards an adrenal crisis.  I tried to sit up, so I could give myself an injection.  But,  I literally couldn't move. My muscles felt tied up. I could rock back and forth on my side. Which is usually what I do when I am in severe pain with a migraine (I find it soothing).  My husband gave me the injection of 100 mg solu-cortef, I didn't even feel it.   I must have had a bad site through out the night.

In  PART ONE I told you about traditional treatment for Addisons.  I am not one of those "traditional patients".  I have a geneotype that the two variants either speed up the metabolization of medication or slows it down.  It isn't really clear how I will clear a medication because of those two variants.  If I had just one they would know I am an ultra metabolizer, or a slow metabolizer.  But we did test my clearance of cortisol and I clear it at a rapid rate.  I would take hydrocortisone and in 1-2 hours I would have it out of my system and be crashing, with low cortisol symptoms.  I am now on a pump.  It is not FDA approved in the U.S.  I hope one day it is.  Basically, it feeds me a continuous flow of steroids.  I have rates set up in the pump like a diabetic would but it is customized for me as a person with AI.  So having a bad site when you rely on a pump is a pretty big deal.  I receive my peak levels of cortisol in the early morning hours. This allows you to wake. The pump sounds pretty simple explained like this, but trust me it is a lot of research, and testing. It is Also very hard to find a specialist to jump on board in the U.S. and  be willing to take the task on as well as difficult to get your insurance to cover the pump, and supplies. Which makes it costly as well as complicated to get started if the physician is not schooled in how to get the pump going.  So please do not read this if you have AI and think the pump is just something you can just hook up and go.    

After, The shot I immediately started to cry.  I cried because I was helpless in that moment.  I was scared.  Scared of a lot of things.  I was solely dependent on my husband in that moment.  On a normal day he would have been gone by 4am.  How would I have gotten help without him? My kids would have been the ones that had to do it.  And that scares me more than anything. Traumatizing them.  I cried because I had to deal with it.  I hate Addisons.  It impacts my life in this huge way. It has taken this part of me that I can't restore.  I hate it.  After roughly 20 minutes I started to feel a little better.  I could move.  My migraine was lifting.  Wyatt (who is 6) was in bed with us woke up.  He said "Mommy, if you need to go to the hospital just lay down in the back of the car, and Daddy will take you".  I will love you.  I told him I did not need to go to the hospital, I was okay.  I laid down next to him and snuggled him up.  This conversation ensued.

W:  Do you remember when you used to run and run and run? And you used to jump on the trampoline with us? Way before you had the pump on you.

M:  Yes, I remember that.   

W:  I miss those days.  Like when we were at the beach, and we found a star fish in the ocean.   I really liked that.  I think that if you just, like really, really, tried hard that you could feel better like before.   

M: I miss those days, too.  (I did not tell him that I was sick when we went to the beach.... let him have the memory) Do you think that I am not trying, Wyatt 

W:  No I know you are.  I just think if you tried just a little bit harder that is all.  You see this (he drew a giant air heart in front of us) That is my love for you.  I have so much love for you mom 

M:  Oh, Wyatt I love you too.  I will try harder.  I love you so much.  

I wanted to cry, scream, and protect his little heart from anymore confusion all at once.  But, seeing me cry more would only make him feel like he hurt me.  Screaming....well that would do no one any good.  And, protecting his heart......  I just read something in a book I am reading by Anne Lemott called "Small Victories" it says "I didn't want my child's heart and life to break like that again.  But you don't always get what you want: you get what you get.  This is a real problem for me.  You want to protect your child from pain, and what you get instead is life, and grace.  And while theologians insist that grace is freely given, the truth is that sometimes you pay through the nose.  And you can't pay your child's way." .

Okay, out of bed we go.  I tell myself my day is not ruined! I am going to have a good day!  My week was glorious.  I have another Infusion then I will come home and have family time.

The infusions I have every Tuesday and Friday are because I cannot maintain my electrolytes.  Mostly, potassium, and I become dehydrated constantly.  But I will get Iron infusions as well.  My last crisis in February they placed a picc line in, and later in May they inserted a Port.  My once beautiful veins are now shot.  I  traded busted veins for allergic reactions to tape and skin burns from whatever they clean me with.

When I arrive to my infusion they get me all hooked up. They did my normal labs.  My nurse started to act all weird.  Taking my temperature, the machine took my BP a lot more often than usual.... Positive thinking will win.   Then the nurse comes in and tells me my magnesium is low, and the doctor ordered a bag of magnesium as well. And my calcium was low.  After the bag of mag they are going to repeat the calcium and we will go from there.  Chloride was high, and CO2 was low as well. The only thing not out of whack was my potassium. Ahhh life. I have not been to the ER since I started these infusions.  Last year, I had to go to the ER on average 3-4 times a month. For dehydration, or crisis. I have not had a crisis since February.  Positive thinking will win... I am certain that if it comes back abnormal again he will admit me.  He knew I had to inject this morning.  My husband has a big mouth.
THANK YOU sweet baby Jesus. The ionized calcium was normal! I went home dog tired. Took a nap, and I am currently resting the rest of the weekend.
See! I told you Positive Thinking Will Win!

Below is a picture of when I was on oral medication and could not figure out how to dose myself.  No matter what I did I felt like I was dying.  So I took to journaling my symptoms and doses of medication.  WARNING! I look like a crazy person.  But.... I was. I was going crazy trying to feel better, convinced this God forsaken disease would kill me.  Journaling like this helped me so much. It also gave me a tool to show my doctor.  She could see day by day what I was doing, how I was feeling, and the symptoms I was having.  We forget once we get in the office, so this was perfect. 

Addisons Disease Part One

This will be a two part post.  l knew I would have to eventually have a detail post about it, and then an accounting of how it has personally effected my life.  I will be honest.  I cringe every time I think about having to talk about it. I am not comfortable in my own skin to wear this kinda of vulnerability on my outsides.  BUT........ in starting a blog I'm stepping out in faith and courage with the hope of helping others that go through the same.


Addisons Disease is also known as Primary Adrenal Insufficiency.  There are other kinds to name a few: CAH, Secondary Adrenal Insufficiency, I have "met" people with both Addisons, and Secondary, and Idiopathic Insufficiency.  It does not matter in my mind how you have gotten to this diagnosis, the fact is your adrenals are not working, or your brain is not telling your adrenals to work.  Statistics say only about 1 in 100,000 people are diagnosed with Addisons disease.  Doctors for the large part do not understand the disease, and under treat it, mistreat it, and in turn the patient suffers. Usually, treatment is steroid replacement and aldosterone replacement. An inexperienced doctor will say take three times a day you will be fine.  But that is far from the truth.  We are finding, mimicking the natural circadian rhythm the body would produce is far more effective.  Which can be hard to do, if you have any absorption issues, don't clear medication at a reasonable rate..etc.etc.  We also need to anticipate our need for steroid replacement during illness, surgery, times of stress (happy or sad).  A normal persons body would spike cortisol for them in any time it felt a burst of energy or the age old saying "fight or flight" that is your adrenals.   Having Adrenal Insufficiency you have to try to do that on your own.  
The problem with that is when you fall low on cortisol you can't really think straight.  You think you are fine and can even become combative.  Or it can get bad before you even get a chance to correct the problem and you will end up in an ADRENAL CRISIS.  Every person that has AI should carry an EMERGENCY INJECTION KIT for this reason.  Adrenal Crisis' are very dangerous and come on can be quick and fatal.  
An Adrenal Crisis is when your body has low cortisol, possibly electrolyte imbalance, low blood pressure, and you need help NOW.  Here are some symptoms of a CRISIS

Weight loss

Increased abnormal sweating

Slow movements

Dizziness

Nausea

Vomiting

Reduced blood pressure

Electrolyte abnormalities

Low level of adrenocortical hormones

Low cortisol level

Abdominal pain

Fatigue

Headache

Fever

Loss of appetite

Joint pain

Severe weakness

Increased heart rate

Increased breathing rate

Chills

Dehydration

Confusion

Coma

Now I will talk about the symptoms of Addisons Disease.  But, they are board.  And I have found that everyone with AI has had symptoms that are not on the doctors "list".  Tradition symptoms: fatigue (it's a fatigue you can't explain), extreme nausea, weight loss (I know some people have even been told they have an eating disorder), tanned skin, low blood pressure, and salt cravings.  Yes, salt cravings. It is a running joke in our support group online about pickles, because almost all of us drink pickle juice.  I have eaten a spoonful of salt before.  We are salt wasters.  We sweat it out, we pee it out. Our bodies crave it.  Alright, that is it for part one.  I will tell you about my day, yesterday in part two.  There will be more letters and details about my constant companion Addison.  She has be a destructive bitch, but I think she has been trying to teach me lessons and give me perspective.  So, I am trying very hard to see her as another blessing.  That I get to see the world in a way that the people around me can't see, because of her.  

If you have Adrenal Insufficiency I would love to point you over to the Facebook support groups.  They are closed groups so no one knows you are in them and you can be surrounded by like people and have privacy.  

A very large group of people with such a vast knowledge about what we are going through.  

I also recommend SECOND CHANCES, it is a eBook on Kindle.  It is all about AI. People with it, telling their story. 

and Take a look at Clearly Alive's Blog.  She has AI, and she was the first blog I followed when diagnosed.  

Disclaimer: I am not a medical professional... I am just a someone who googles web Md a lot! and is an advocate for herself.  I encourage you to do the same... SO with  that being said don't tell your doctor Crystal said this or that so I did this.. Use your head.  Make sound medical decisions that are right for you.   But above all else be your own advocate. No one else will.  My dear friend C just posted a quote "Be a voice not an ECHO" 

 Make it a good one!!