Friday, April 8, 2016

I have addisons disease. I am also one of those people who get or do, or be the thing that is rare. It has its blessings, but it also sucks beyond measure.

I am writing this blog for my own slef. I can't imagine that it will help anyone else, but for me, i am hoping to get some kind of voice inside myself, to remember what happens, and to be encouraged by what I have been though in maybe in later days.

I have a tremendous amount of brain for currently. My cortisol level has been at a .2 and with iv fluids and cortisol per iv 100 mg every 6 hours.  in the hospital, only went to 2. I was sent home as the hospital did not know what to do with me. Having a cortisol this low is part of an adrenal crisis.  I have been on IM shots, ,prn. Iv fluids with Cortisol, and oral meds. My body is apparently hanging on to meds, but not using them.

after seeing a doc in Detroit for the second time, and having him say to me that he is puzzled and most people dont react this way, and he doesnt know what to do or look for, I then went last week to a new ENDO in GR and he was very knowledgeable about my illness, he switched me to a oral steroid I have never been on, Dexamethasone. 4x a whole day normal dose times 4 times a day.

I am jittery, my heart feels like someone is pulling down on it. I cannot do much, i.e. get dressed, shower or even walk a block. I am in bed almost 24/7 and no energy to do anything. I FEEL like I am on a large amount of steroids, because I am. But it once again, doesnt seem to be doing its job. I have done 5 fecal tests and multiple blood tests and no one seems to know why I cannot process the medicine. ....If this does not get fixed, I will go into extreme crisis, coma, or death,

I am sick of being tired, sick of being sick. Sick of having people not now what to do with me, and I just want to know what I am to do.  Do i quit and let go. Do I keep "living" until I cannot...

My husband has stage 4 metastatic kidney cancer in his lungs. I am supposed to be here to care for him. To enjoy life with him. to prepare our home to be comfortable. I miss walking the dog!!!  I miss being alive. I want so badly to go outside and move flowers, to make a garden. I want to be able to help others again, care for THEM...my mother in law needs me to help her and I miss her terribly, but I cannot function clear or well enough to go there.

I realize this is a big fat disappointing blog, but i need to get these thoughts out.

things i know.
I am still here
I am trying hard
I am blessed with what little strength or stamina from my Lord.
I am going to heaven when I die.
I have been to hell and back in my life, I have died once and almost, lots.
God has a purpose for me
He has a purpose for all of this
I know he can heal me, I don;t believe he will until I am in his arms
I love my family
I cannot remember alot of things due to the brain fog
Not sure sometimes if I am just freaking out because I am literally unable to process my health and wellness or if it is really and truly this bad
I have been given amazing grace
I have a loving relationship with my girls.
I have screwed up alot
I have apologized for all of it
I regret all the pain I have caused and mistakes I have made that negatively impacted my children
I miss kyaing
I miss the lake
I miss being joyful on the outside
I want to live to see my grand kids grow
I want to find a way out of this cortisol hell and make more of a difference in the world
I want to leave a legacy that is worthy
my whole body hurts
I miss working.
I miss making a difference in someones lilfe
I miss doing hospice
I miss the body I knew, the mind I knew, the me i knew
I do not NEED things.

I am leaning, trying to trust. Trying to not get buried in the depths of this illness. I have never let it own me, and now is seems that it does.

I am thankful for my home
my kids
my husband
my experiences
my dog
the people who love back
my Lord and Savior
My redeemer lives
all of the hands that helped to make this house precious and comfortable
diett coke, even though I cannot taste it
Thankful that my husband, though he gets tired of my health, and despite his, he makes small gestures of love, like pronto pups, (even though I cannot taste them) walking our dog, making sure I have things to drink, getting me treats I dont need but that help to keep me "afloat". I am thankful that he is here with me and I am not a burden to my kids. Thankful that he takes time to come sit with me in my bed because he knows I am just to worn to come out to sit in the living room. I am thankful he can work and has the abilities to pay the bills and to keep my brain from the stress of all of that.

I am tired. Very tired. I am loved. I am cared for. I am blessed with unmistakable grace.

Sunday, February 26, 2012

Walk a mile in these...


Just thinking today of the stresses we all carry....the things that just get on our nerves...the mom who looks haggard, the girl or guy who walks with their head down, or the opposite of that...body at an angry "make my day" pose...we all go through something, we are all IN something at some time....we trust God or...we don't...


Today, I am thinking it's tough the be the one carrying the thing...the thing that has hold of you somehow some way, the worry...the stress of letting go, or letting someone make mistakes. That is tough to sit back and watch. 


My heart aches today, somewhere inside me is the desire to fix it all. My life certainly is not one that I would recommend anyone try to copy...but for some reason, maybe the mother in me, I want to help people heal.

I don't always see the good side of people, I am quick to judge, so this little note is a reminder to me.  When I see...people who look angry, people who are doing wrong things, people who live better, or not as well as me....people who think they have it all....I have to do the thing that is toughest for me....let go. Love them with Gods heart, see them with His eyes...


and maybe ... take a look at their shoes and dare to walk a little in in them.



1 John 4:8

New International Version 
Whoever does not love does not know God, because God is love.