Friday, November 6, 2015

Out of Gas at 2:38 Am and on the dark road alone

How I got LOST and Out of Gas on a Dark Lonely Road

It is 2:38 am November 6, 2015. I am not sleeping. Why?  I had fun yesterday. Fun sometimes carries a penalty when you have adrenal insufficiency. So here I am in a mild crash and since I am responsible to bring me back to life, I have to bolus my insulin pump that actually runs cortisol, not insulin, into my body.  It is my exterior adrenal gland. I never know exactly what I need, so my foggy head is guessing and adding a unit or two at a time and waiting to see how my body responds. 
It is a task that could boggle the mind of the most capable person on this earth. Everyone's body is different and so there isn't any manual that will tell you how much you need to give your body. I am "Out of Gas", my term for running out of cortisol because cortisol is the gas that runs your body's life, 
Each time I am out of gas, I have to figure out how low the tank is, and what it will take to fill it so my body can run ok again. There are so many issues that can play into this decision.  How bad was my previous stress?  How am I feeling in health, generally? Am I low on blood sugar? Do I need to eat also?  
So I am tanked this morning and I begin the process. One little unit, two little units, three? Take a break. Let my body catch up a few minutes and see how it has responded. Nope, not enough. Repeat the process. Then I raised my pump up to 110 percent. That allows my normal cortisol to go up a bit for a few hours. A bolus is a one time deal, but the pump is set to run 24 hours with a dosage that suits my body's normal activity. But if I have gone beyond my normal activity, I can raise that dose by a percent, and it can help me pull out of low, or it can be used to do activity and provide the gas I need at that time.
The problem is that this girl doesn't always use the preventative method and add more gas when I am under stress, or just plain having fun activity. Then of course I pay the penalty, as I am now at 2:38 am. 
I didn't get back to sleep until 6:30 am.  As my brain is sorting out all of this, I am genuinely scolding myself for not raising my percent when I rode my motor scooter an hour and a half yesterday. Shoot Terry, when are you going to get smart about this stuff?  Here you are now suffering again. Once again. Yes it has been like this for many years. Suffering comes in many forms when you have AI.  (Adrenal Insufficiency).  

How it all started?

Well I will try not to bore you with all the lonely dark details of this disease process, but rather give you a quick recap. I mostly want to spend time sharing my experiences along the way to help others on this journey.
Some where back down that lonely dark road about 15 years ago, I started having migraine headaches very frequently. They happened the most, if I did stuff the day before, and then I woke up with them. It was years before I understood part of the problem was dehydration and years later before I found out it was low cortisol that caused the dehydration and the migraines.  Anyway I had them about 20 days a month which is a bit of pure hell! 
I went to doctor after doctor for tests and tried all sorts of drugs but nothing helped.  It was discouraging. With this came the fatigue and the beginning of alot of bed rest. Terry was simply pooped out. I was raising a large family of teenagers through it all, as we have nine children. Four by birth and five adopted.
That sure was hard because my youngest two have fetal alcohol syndrome from exposure in the womb by their birth moms. I was in the schools a lot and trying to help them all with this horrible fatigue and migraines all the time.

Well so now we get to the start of some answers. My family doctor tested my adrenal glands and thyroid. Both were very low. He then sent me for an ACTH test which proved I had secondary adrenal insufficiency.  What was next?
PILLS! Hydrocortisone pills and thyroid meds.  Boy this was the beginning of Endo School for me. I spent the next seven years at least researching everything I could about this illness. I began to believe something was wrong with my pituitary and by now I had an endo doc. He didn't really listen to me. 
Things spiraled  down to endo HELL and I was waking up in the morning DYING daily.  It was horrible.  I kept telling my endo doc  what was wrong, but he just didn't have answers and didn't understand this all well enough himself. He actually determined that I was having anxiety attacks and told my doc to put me on anxiety meds 24/7.  What a hoot. My doc suggested that I might be a steroid seeker.  Could not have made me feel any worse really. I knew what was wrong, but no one was LISTENING!
Eventually I found a doc in Integrated Medicine who tested me further and she actually tried to help me. She proved that my pituitary was not producing ACTH at all and there was such a low cortisol level in my blood that I was close to dying every morning. ANXIETY MY FOOT!  I was DYING!
I also got an MRI for an ear issue and found out I had an Empty Sella Sac in my pituitary. NO WONDER it didn't work. It was all fluid!  Endo hung his head in shame when we found that out, but he still didn't help me further. He was stuck on "all adrenal patients live on 20 mgs a day of cortisol".  Well I nearly died one day. I woke up in the lowest of lows and walked down stairs to put my dog out. I spoke to her and my voice came from another place. WHAT THE HECK?  I was so weak I could barely walk and I turned around and nausea about threw me down to the floor. Adrenalin was screaming through my body, as my adrenals were trying to make cortisol but they couldn't, so they made adrenalin instead.  
I called my son and asked him to come over, as I wasn't sure I was going to make it out of this crash alive. He called 911. I refused to go. I had been in the ER previously with an adrenal crash when I had the flu. They don't get it either. I was given a 100 mg injection of cortisol and it pulled me out, but it was forever before they did that. I was afraid I would die before they helped me there. 
So I was taking hydrocortisone under my tongue and laying down until it kicked in. I told the ambulance guys that I was going to be ok. They left and I continued to save my life gradually with a large stress dose that my doctor didn't really approve of. 
 I did call him later and told him what happened. He told me to get a medical bracelet and called me in an emergency injection to have on hand, but nothing more then that. I continued to be at risk for a couple more years.

The Pump
In my research I discovered that some people were using a diabetic insulin pump for cortisol. I also found out that some people do not absorb the pills too well and it was beginning to look like that was the case with me.
A miracle soon happened and I found an endo doctor at the Cleveland clinic who understood my issue with the pills and was willing to give me the injections first and the pump later. That was the beginning of LIFE~

Hive Hell
Well I took the injections and whoopie they got me out of bed!  After 15 years of life there and an extra 100 lbs, that meant the entire freaking world to me!  YEAH! I was able to garden and do stuff and of course I WAY overdid it!  
Two weeks later I ended in the ER with my heart flipping out. They could not determine the reason but thought maybe my thyroid meds were too high, but the next day HIVE HELL landed on me.
It was a prerequisite to the hives or similar to an allergic reaction that affected my heart.
Hive hell took me into adrenal hell again for many months and after 7-8 ER visits and one hospitalization, I finally figured out help for the hives. A very low histamine anti candida diet and it is helping alot.

ER Docs
This brings me to the place where I want to comment on what ER docs will do with AI patients. They treat you like you are making up your symptoms. In fact I had one doc outside the ER actually accuse me of making this up.  He thought it was all in my head. UM, gosh all those tests must have been wrong?  The way I lived and felt, was made up?  Did anyone realize that I wanted to LIVE and DO LIFE?  This is all so very misunderstood. All of us who have this, have the job of educating the doctors instead of the other way around. We won't survive if we don't. We are responsible for our very own lives.

Today Gas is still a bit low

Now I have given you a snapshot of my history with this disease. This blog is going to be education to the world about living on the pump. I want to help others get this who are suffering like I was.  I have lots more to share and will interject those things in my blog posts.  If you are someone suffering from this illness without help, I pray you can find it. Yes my life now still holds nights like last night without sleep, as I am still working out the kinks in cortisol replacement to do life. But all in all, I am doing life now much better then I was. I am not dropping into the worst places anymore. Last night was mild and uncomfortable and I am very tired today. However it is preventable. Come with me as I learn for myself how to prevent running "Out of Gas" from doing life.  I want to share with you my journey to wholeness.  

No comments:

Post a Comment