Saturday, November 14, 2015

Steroid fear is easing.........




Yes it is getting easier to stress dose!

Well I have now been healthy for a week, and I learned some huge valuable lessons. Stress dosing for two days not only saved my life, but I recovered far faster than the norm.

God created cortisol to mend our bodies, as well as daily gas. It is the fuel for all the hormones in the body.
 I also ended up losing some weight instead of gaining. That makes this girl a happy camper.


AI Is not for the faint of heart!
  Life with adrenal insufficiency can be a pretty bumpy road. I mean how many people are entirely personally responsible daily for keeping themselves alive? 
I know there are other diseases that fall into this category including diabetes, but at least diabetes has some ability to figure out how much medication you need. Blood work. 
Cortisol blood work is in the works though, and when it arrives, it is my strong hope that the FDA will approve injections and the pump so that more desperate people can get this help. Too many are critically
Disabled like I was, on the pills.


Our cortisol needs
 Our bodies create cortisol around the clock. Today's Endo docs expect patients to take one or two pill doses daily and be ok. Hydrocortisone pills last six hours in the body. You get a high concentration to start out, and as those six hours pass, the level in your body wanes down.
 Then if you take a second dose in the evening, you bring your dose up higher than the normal body would make it. This can affect sleep. I had to end up taking other medications to help me sleep and sleep was terrible on the pills.

Then I discovered that I was crashing in my sleep. The body makes cortisol 24/7. I wasn't giving it to myself 24/7 because my doc didn't order it that way.

I was DYING!

Well this was the beginning of AI HELL! I was waking at 5:00 average with terrible migraines and nausea. I was DYING every morning and didn't even know it. This went on for years! I would look at myself in the mirror and see a ghost! Sunken eyes that were dark and no one resided behind them.
 I kept telling my doc how sick I was. He basically listened and did nothing. Eventually he ended up calling my other doc and told him to put me on anxiety meds 24/7.

I was having anxiety but that was not my main problem. Low cortisol will cause anxiety. I was rather zeroed out on cortisol though. It was later that my new integrated doc did blood work on my morning cortisol and almost nonexistent! 
ACTH, that we discovered the problem. My morning cortisol was 1 and my ACTH
 Ok....my gas tank was empty every single morning! How was this body supposed to run? 

 I went to a hormone specialist and found out also that all my sex hormones and DHEA were also
ZERO!  Um this body was so empty that I am literally a miracle to be alive!
 Every morning I got up sick with vacant eyes and I Gulped a large dose of water, sea salt and my hydrocortisone.
Within an hour I began to feel like I could live, but living was pretty rough daily.  I pretty much existed, not lived. I could not do much beyond get out of bed to feed myself and sit or lay down all day. Thank God I had a computer.


"Endo School"

I had already spent a few years in "Endo" school (on my own, online) studying the thyroid issues, and now I was learning about the pituitary, adrenals and other hormones.
Basically I spent about 7 years in "Endo" school total and when I finally had this disease figured out, I was looking out for a doctor who would treat me With the pump. 


Praise God
He led me to the Cleveland Clinic and my current Endo, dr,
Hattipuglo. She saved my life!!  First she put me on injections and I went on them small doses every three to four hours around the clock. So I set an alarm to wake myself at 5 am and took an injection. I also took one before bed. No longer was I waking up close to death.
 The body actually starts rising cortisol a couple hours after you fall asleep. How was my body to sleep normal and wake up normal, when I was flat lining my gas, in my sleep?  It wasn't! I was dying daily!
  As I blog about my pump, I will educate you more and more about how the pump replicates the normal cortisol rhythm that your body makes.


Thank you Lord today for Steroids. They have saved my life. 




2 comments:

  1. Terry that's exactly how I feel every day. I feel like a empty turtle shell. I just do what I have to do then I crash out.

    So far I am not in bed all day long, but wasn't that a part of your time with your knee surgery?

    I am working 50 plus hours a week, thank God I do that I sit at a desk almost all day. When I get home I eat something fast and try to crochet to relieve some stress. I always crash out and my last visit to Dr(yesterday) he said my body is not handling carbs at all, and that's why I crash, he asked how I lost 5 pounds I told him eating M&M's he said think about it if your eating sugar after carbs are you crashing? No I'm not, I am back to wide awake. He said Becase my body is not holding Sugar at all.

    Well I just ate a pizza sub and started crashing till the dog locked my nose a few times, I grabbed about 6 M&M's and I'm up and typing to you.

    I am very tired of this disease,I am tired of feeling like crap,I have no life, with working I've used all my spoons and some of the next days. The pain, the headaches, constant diaria, feeling totally depressed and not wanting to do anything, the emotions of jealously as you said, watching someone go for a walk can make me break down and cry.

    I'm out of gas and don't know what to do anymore. I feel like a total burden on my husband as he has to always wake me from these crashes, he has to worry when he leaves will she wake up? I'm finding I can sleep 11-12 hours and not care just want to sleep more. We can't go do any of the things we used to do because I crash. In just tired!!!!

    Thanks for letting me rant! I oh know how you have felt.

    Love you kiddo!
    Dawn

    ReplyDelete
  2. Terry that's exactly how I feel every day. I feel like a empty turtle shell. I just do what I have to do then I crash out.

    So far I am not in bed all day long, but wasn't that a part of your time with your knee surgery?

    I am working 50 plus hours a week, thank God I do that I sit at a desk almost all day. When I get home I eat something fast and try to crochet to relieve some stress. I always crash out and my last visit to Dr(yesterday) he said my body is not handling carbs at all, and that's why I crash, he asked how I lost 5 pounds I told him eating M&M's he said think about it if your eating sugar after carbs are you crashing? No I'm not, I am back to wide awake. He said Becase my body is not holding Sugar at all.

    Well I just ate a pizza sub and started crashing till the dog locked my nose a few times, I grabbed about 6 M&M's and I'm up and typing to you.

    I am very tired of this disease,I am tired of feeling like crap,I have no life, with working I've used all my spoons and some of the next days. The pain, the headaches, constant diaria, feeling totally depressed and not wanting to do anything, the emotions of jealously as you said, watching someone go for a walk can make me break down and cry.

    I'm out of gas and don't know what to do anymore. I feel like a total burden on my husband as he has to always wake me from these crashes, he has to worry when he leaves will she wake up? I'm finding I can sleep 11-12 hours and not care just want to sleep more. We can't go do any of the things we used to do because I crash. In just tired!!!!

    Thanks for letting me rant! I oh know how you have felt.

    Love you kiddo!
    Dawn

    ReplyDelete