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.
No comments:
Post a Comment