it is important to find balance

The focus on this post will be about the importance of electrolyte and vitamin balance.  From my understanding, most addisons have issues with balancing sodium (too low), and potassium (too high).  Almost everyone I have talked to has multiple vitamin deficiency.  Some common vitamin deficiencies are Iron, Vitamin B-12, Vitamin D, Potassium, Magnesium, and Calcium.

Primary addisons requires I take a mineral steroid call Fludocortisone.  It is a synthetic corticoid with moderate glucorticoid potencey and a high mineral corticoid potency.  It is used for a lot of ailments.  But, we use it to keep is from salt wasting and to keep down our potassium levels.  As well as keeping out low blood pressure normal.  Keeping this steroid stable is a bit tricky for me.  I have low potassium as well as low sodium.  The answers for this problem are the bi-weekly hydration infusions with 40MEQ of potassium in addition to the supplements I take daily.  

Symptoms of Low Potassium-Weakness-Fatigue-Muscle Cramps-constipation-Abnormal Heart Rhythms 

Symptoms of High Potassium-Fatigue-Weakness-Feeling Tingling or Numbness-Nausea/Vomiting-Palpitations-Chest Pain-Breathing Problems 
Symptoms of Low Magnesium-Tics/tremors-Musble cramps-Seizures-Anxiey-Irregular Heart Rhytms -Headaches-Insomnia-Depression-Chronic Fatigue-and many many more
Symptoms of Low Iron-General Fatigue-Weakness-Pale Skin-Shortness of Breath-Dizzyness-PICA-Tingling or Crawling Feeling on Legs-Brittle Nails-Headaches

Notice the overlapping of symptoms.   And the importance of having blood work ran regularly.  The vitamin deficiency symptoms mimic some low cortisol symptoms.  Making it difficult to know if you need more steroid coverage.  A perfect example is: at one point I was on over 64 mg Steroids a day, and still felt horrible and was gaining weight rapidly.  Once I had a series of iron infusions I was able to wean down to 22mg daily.  Feeling far more functional, and I have lost weight.  

My goal in posting this is to show you how vital it is to know if you are haing vitamin deficiency within your body, and to know if you are having issues regulating your electrolytes. 

The red signifies the symptoms I deal with and manage.  

Pump it up part one

I will start by saying this is not medical advice, I am not a professional I am a patient.  I write about my personal experience, Every body is different.

I was first diagnosed with adrenal insufficiency while I was going back to school to become a hairstylist.  I started to feel fatigued, lightheaded, foggy-headed, and sharp pains in my left flank. After "dealing with it" for a little bit I went to my GP and asked WHAT IS WRONG! He ran tests, the standards.  My blood pressure was extremely low, and my electrolytes were out of whack so he attributed it to dehydration.  That the fatigue was because I was a busy mom of three going back to school.
After a few weeks I did not feel better, I felt worse.  So, as I have said in my other posts I went to Dr.Google.... WebMD.... you know everything you are not suppose to do.  I went to him with information on Addisons Disease, and asked for my cortisol, and aldosterone to be checked.  This is where the specialists come in.. the run around.. the adventure.

I was referred to an endocrinologist, and had the ACTH test done to determine if I indeed had Adrenal Insufficiency.  And that is how the steroid war began.  I was prescribed 30mg Hydrocortisol.  (10mg three times a day) without any information on how to care for myself.  Over the next several months I still did not feel any better.  I wasn't thriving at all.
The exhaustion I felt by 1pm was indescribable.  Sometimes I couldn't move my hands, let alone hold a pair of shears to cut someones hair.  My legs would go numb, and I fell a lot.  I started having issues with slurring my speech (I started to think I had something else going on, or I had a stroke).  My drive home from school was always a haze.  Most times I did not remember how I got home, or I would catch myself falling asleep/passing out.  I drove with my window down to try to stay alert.  It was not safe to drive, I lived in a constant state of fear.

At home I had stopped doing everything. Cooking.. Cleaning.. interacting with my children, friends, and family.  Matt thought I did not want to be there with him and the kids, so we fought a lot.  He did not have an understanding for what I was going through, how could he when I didn't know what was going on with me.  Most times you look healthy. It is often the case with most invisible illness'.

Time to switch doctors.  I went to my first visit thinking he had to know SOMETHING.  He was previously at the U of M, so I had hope. 
I went armed with more information, more research.  I knew I needed to find out if I had PRIMARY or SECONDARY Adrenal disease.  I knew I  needed to find out if I needed a mineral steroid, Fludocortisone added to my medication list.  This medication helps regulate your electrolytes and blood pressure.  I also knew I needed an emergency injection kit.

The appointment was a disappointment.  He wouldn't prescribe the emergency injection kit, which is live saving.  He said I was too pretty to be on a high dose of steroids, I looked healthy and tan so my vitamin D was good no use in testing it  (hallmark sign of Addisons Disease is tanned skin).  He did not think Fludo would help, and he proceeded to tell me my adrenal insuffiecancy was caused by a brain tumor.  Before he bothered doing an MRI!
I was defeated, and hopeless again.

By this time I was so unstable I was having crisis' 3-4 times a month, I would work 2 days a  week but stay in bed the rest of the week because I needed to recoup.  I stayed with this doctor a few months hoping he would figure something out.  BTW it was not a tumor, but I still had no more information.

Time to switch doctors.  This time my husband suggested the Cleveland Clinic.

My first appointment with my doctor at the Clinic was emotional.  She walked in and was a breath of fresh air.  Within 15 minutes she looked at all my lab work & tests, and had a diagnosis.  Primary Addisons, due to autoimmnity.  By the end of the appointment I had blood test s ordered, Solu-cortef and Fludocortisone prescribed. 
Part two of the pump will be my decision to push for it, the struggle to get the pump, and the reseach it took myself, and my doctor to make it happen. 

The past two weeks I have found it impossible to write.  Since January of this this year our family, and friends have had one blow after another.  Some things I cannot talk about directly, but wish I could.  I think I would feel better, but in the grand scheme of things it is not about me feeling better.

This year has been impossible.  From a tragic death of a young family member, the death of a dear friend, issues within my marriage, coping with all that this disease has brought to our life, and watching someone you love silently suffer through depression.
My husband is in therapy, and it has helped him immensely.  He started to go to get help and guidance on how to live as a caretaker of someone with a chronic illness.  But every week it goes on, he goes in with a heavier heart with another dilemma to talk about.  He always leaves her office feeling more grounded, and with better understanding.
This week when he went in he said she actually looked like she was going to start crying.  All I could think of what a wonderful woman to have such compassion, and GREAT he broke the professional now what are we going to do.

When the world seems like it is handing you more and more you cannot handle, how do you cope?  I am pretty good at picking myself up off the floor, dusting off and saying lets keep it moving.  Until yesterday I was doing this very well.

Addisons disease has taught me so much about my limitations with stress, and I am getting better at calming my body into  not have it revolting against me.  But having this new strategy of calming myself makes me feel like I am not totally dealing with everything.  That maybe I am swallowing it down for another day. To just survive this next wave of events.

I read a blog by a spiritual guru named Teal Swan.  And it was exactly what I needed to hear.  I will place a link on the page if anyone wants to read it.  I am open to all that is coming our way and I am trying to take it with the knowledge the universe and God truly love me, and that nothing is made for me to suffer.
http://blog.thespiritualcatalyst.com/the-alchemy-of-fear-and-love/
Just a quick jot of thoughts

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!!

No Fear

No Fear

I have wanted to start writing for years, but have been too afraid.  What could I possibly have to say? I have finally just conceded the fight.  I have something pulling at my heart, and I need to just go with it.  My blog won't be dedicated to one particular subject.  It will be about my life, which is pretty intense at times.  One day I may right about my children, and include something I have written them in their journals.  Another day I might write about my husband, and how he drives me nuts but sometimes sweeps me off my feet.  Other posts might be more somber and express my deep feelings of loss of a friend. 

Certain parts of the post will be particularly confusing for some because I will write about an illness I have call Addisons Disease.  I am on a journey of not letting this disease define me.  Trying to figure out how to live a new normal, and not feel guilty about not being the "old me".  I will write an introductory post about Addisons.  Keep in mind what I experience with Addisons is not always what someone else experiences.  I am not a medical professional, although most of us that have adrenal insufficiency could be with all the research we have to do on our own.  I will probably talk a lot about the ugly word cancer, too.  That God forsaken disease  has weaseled its way into my life (as I am sure you have) more times than I want to count.  Taken loved ones, currently watching loved ones fight that bitch, watched too many young and old have to fight.. 
Now that was a little intro about what I will most likely be writing about.  Here is a little intro about me.  

My name is Crystal, and I am a mom of three.  A 14 year old boy full of all those lovely hormones but who is the most like me.  A six year old boy who is All boy and ALL empathy.  A 4 year old girl who is a ball of fire.  No one is stopping her, and I love this about her.  I have been Married for 14 years, to my husband.  I was a stay at home mom for many years, until I was 31.  I decided to go back to school to become a hairstylist.  It was a passion of mine.  While going to school I became very ill, and was diagnose with an Autoimmune Disease called Addisons Disease.  It made finishing school very difficult, but I did it.  I also went straight into a salon I loved!  I stayed there for two years, and then went on to booth rent.  I eventually had to leave work because of my health.  That is where I am at now with my career.  Maybe someday I will be able to work again, it is my hope. Right now it is not my focus. Wellness is. 

I look forward to this journey of honesty with the world wide web. Putting your heart....your words out there is not an easy thing.  Especially when you believe words are so important, and you keep your heart so guarded.