Who are the warriors in your life?

Who are the people in your life that impact you the most?

Who has changed your heart, just by knowing them?

I feel so blessed to have so many people in my life I can look up to, and learn from.

This year we lost two people that were one of a kind.  Never in this world will you meet anyone like them.

My husbands cousin, James, passed away unexpectedly in January.  Leaving behind a wife and two little girls.  We were rocked to our core,  He was a man who always laughed and his eyes were filled with genuine love for all people he encountered.  That quality is special.  To touch lives the way he did just be being a lover of life.  It evokes deep sadness to know that his gift is gone from this world. But for me it also stirs inspiration in my heart.  To take whatever quality adored in him and use it to better yourself.  To laugh more, be more carefree, and to follow the things that fill you with passion.  He was filled with life and passion... We all should be.

Later, when our close friend Laura Strong (www.publiclookin.blogspot.com) was diagnosed with stage 4 MET breast cancer.  We were again crushed.  But I knew her spirit and knew she was going to give it hell.
To simply talk about Laura being strong is not enough.  She was sassy, forthright, generous beyond generous, a brat, a lover of life, her family and God.  And by family - I tell you her friends and community were her family.  Her spirit makes you want to be a kinder person. To do for others all that you can.  To have more compassion for everyone you meet.  She continues to make me want to be a better wife, mother, and person. The lessons I have learned from her life and death are the reason I am taking stock in my blessings.  She was the ultimate warrior of carrying on when things were hard and heavy.  Sharing her journey with the world through her blog with honesty.


I have another friend who is kind and has the heart of a lion.  This year I watched her battle for what means most to her.  I saw her often times hurt by the sly tongues of people rooting against her- but still I watched her RISE.  Letting it strengthen her resolve and character.  I am often in such awe of her I do not know what good I provide her life, or if I have anything to give back to her.  I am always taking from her whether it is advise, strength, or borrowing courage.  She is my lioness, The person I watch as she gracefully handles all life gives her.

My Aunt Pam has been living with stage 4 MET breast cancer to her liver.  She lives her life not defined by her diagnosis.  She LIVES.  She also brings me hope and support for every decision I make. She champions me.  She is the female role model I hope to be.  She loves me, like i am her own.  Protects me all she can.  She is my rock.  Full of positive energy and love.  I try to emulate these qualities.  She is my love and light in the dark hours.  She is THE warrior in my life.  The Alpha/Omega of feminine strength, bravery, and love.

I have an old friend, who is near to my heart and has been for 14 years.  We have ups and downs, fights and make-ups but more importantly a deep trust.  I don't call on her often, but she is a listening ear when all I need is to be heard.  I know all I have to do is call her and she will be there.  Hearing all the ugly truths we face and offering genuine love.  I have vowed to always tell her the hard truth- we all need truth tellers in our lives.  She is my prayer warrior.

My cousin, Jamie has been a constant in my life.  She and I are on the same spiritual path. We think alike, we understand each other.  We also laugh until it hurts.  She is my sister, my spiritual family.  I feel an intuitive connection to her that I have with no one else. She is my soul sister.

I could list more blessings, because I have more.  Like Matt and his family.  But I wanted to write about the people that impact my soul.  To give thanks for the strong people in my life that guide and inspire me.

So... Who in your life has changed you for the better?  Who has helped mold you into a softer, kinder person?

My hope is you take time to take an inventory of the warriors in your life, Thank the universe for your blessings. Learn from those courageous, beautiful people. Out of the dark-light is born.  I believe it happens when you put down your sword and let the beauty and the adversity in your life do its work on your heart.  It will change you.... if you let it.

Love and Light
Crystal

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. 

What I wish you knew

Growing up with 3 brothers and 3 sisters, and two sets of parents was and is precious to me. Although, the man that raised me, whom I called dad had sexually abused me; I can still look back on this experience in life and see that it did not break me.  That I forgive him, and that there is no shame in saying I loved him.  He was my dad.  When I told my family about the abuse when I was 24, I was disowned by an entire side of my family.  Including my two of sisters and my mother. My mom later came around, but I did not talk to her for three years.  I was considered a liar, whore, and as my sister put it "a waste of human flesh".  It took me years to forgive them for the abandonment.  It took years for me to gain the prospective that they may have.  He is there blood relation, and it is near impossible to believe that someone you love and trust so much could be capable doing what he did.  Even after he admitted to abusing another family member, he denied my abuse.  I am still an outcast to the people I still hold so dear in my heart.  

I learned so many lessons from that life experience.  As painful and devastating as it was.  I learned.  I also learned to let my hurt subside and love again.  I love the family I grew up with and eventually lost.  I still miss them.  But, I am not angry anymore.  I have compassion and I am leaving my heart open for the day my sisters, and nephews can possible come back into my life.  

I wish I could tell them in person how much they have missed, and that my sister I was closest with could see my babies.  She would love them, they would love her.  My kids would have loved the family traditions we had.  They are some of my fondest memories.  This is the part that is the hardest for me.  That the part of my childhood that did not suck, is also linked directly to the part of my childhood that brings me the happiest memories. My cousins, aunts, and uncles, holidays, and being apart of a family is a hard thing to surrender for breaking the silence of what was happening to me.  My big brother stuck by me and my cousin until the day of the trial.  He testified in grand jury against his father, and suffered the wrath of family members because of it.  The day of the trial when my step dad was sentenced was the last real conversation I had with my brother.  He has never met my two youngest children, and has not responded to my invitation to connect.  I understand that life was difficult for him through the trial.  That it is painful for him to have me apart of his life.  That by association he too was losing the family he loved. 

All that being said, I don't regret speaking up.  Sexual abuse is too often swept under the rug when it occurs within a family.  But, the truth is it happens so much more often then most people realize.  More victims need to speak up... need to be given the positive reinforcement to have the courage to speak up.  Every little boy and girl should feel like they have a voice, and they are heard.  Unfortunately, because of the stigma attached to the issue, and the fears instilled into the child it is so hard to make that child feel safe enough to talk.  Victims so often feel responsible for their abusers feelings, and well-being that they protect them.  Add in the complex feelings you have for the abuser.... It is almost impossible to come forward without shame, fear and ultimately the weight of your family's future  on your shoulders.  

This post is mostly for my own therapeutic needs, and also to bring a light to the dark and complex world of sexual abuse.  It has taken me ten years after coming forward to banish the shame I have felt my entire life.  I am almost 35 and have spent ten years over coming the damage done.  I truly believe I never could have found closure, and acceptance if I had stayed silent.  What I wish I knew as a child is that I had a voice and that it would be heard.  I wish I knew my worth and loveability was not tied to what happened to me.  My wish is more people will start having that tough conversation within their family, and bring awareness to the children in their lives.  It is a hard conversation to have, but it can be the chance to change a life. Literally.  Maybe many lives if the cycle of abuse is stopped.  
Below is a link that I hope is helpful to someone out there.


https://rainn.org/statistics

Four Months

It is almost 4 months.  I miss you.  I have written letters in my journals to you, talked to you in the car, sobbed like a baby, laughed at memories, and been angry at the world since you left.  This earthly place is different without you.  The bearded man is different without you.  L is so grown up, When we go to the house she hangs out with the adults.  It is like she is soaking us all in.  She is more social, more like you.  She gives the guys a hard time.  I know that makes you proud.  When I asked her if she was ready for school she said no.  That someone needed to stay home and keep her dad "in  line".  K isn't as quiet.  He and Wyatt play more.  Wyatt says he is his best friend. C is Tinley's favorite.  She gets excited to see her. She will carry her around like a baby on her hip.  I don't go over as much as I want to, to be honest.  But you know that.  I am suppose to go over this week and do the girls nails for Halloween.  Matt, in the beginning was over every night with Chris.  They all coped with each other.  I think BM helped them with the grief of losing you more than they helped him.  I think Matt and Chris are still in denial, still trying to wrap their heads around it.  We all are.  How do we live with out you?  How do we fill the void?  I feel like we were not done learning from you.  The kids definitely were not done.
In the months after you passed I know you were sending people to my life, that only you would send. It was something I could feel.  Everywhere I looked I would see Monarch butterflies.  I would think, Laura.

I look at your facebook page and I almost get pissed off.  Breast cancer this, Breast cancer that.  Pink puke everywhere.  It is almost like everyone forgot who you were.  The force of nature you were. That all that remains is that you had breast cancer.  That you died because of that beast.  That they forgot the beast you were!  AND IT PISSES ME OFF.  You weren't breast cancer.  It was a tiny  chapter in your life.  It was apart of the journey, it wasn't the entire destination.  You were a mother, wife, friend, giver, lover, brat, sass, you were blunt, and funny! You pushed people out of their comfort zone, and helped them grow. You made mistakes and apologized for them but never apologized for who you are! You were so much to so many people.  And now that you are gone I go to your facebook and see breast cancer.  I hate breast cancer.  I hate it for taking you.  I hate it for the role its playing in my life.  I hate it for spreading through my Aunt P.  I am going to be writing her a letter on here someday and it makes me sick.  I pray L&C never have to deal with the pain and suffering you did.  I pray they remember the Sass, and the love more then the chemo and and pink puke.  I hope K finds a woman as bold as his mother was.
I love you.  I miss you.  I hope you get to read all the books you couldn't down here.  And I will be watching you bring him to Him. You still are a force of nature.. you are still teaching me...

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.