Thursday, January 30, 2014
There is just no good reason. That's right I said it. THERE IS NO GOOD REASON THAT CUSHIES AEE SUFFERING TO GET DIAGNOSED AND TREATED.
Always in an effort to put these dots close together for our medical professionals, I am posting a Moxie favorite. This lists the most common symptoms of Cushing's. Print it and fill it out. Add other symptoms.
If your doctor dismisses you, don't get too discouraged. Dismiss her/him! On the spot! Please don't allow anyone to ignore and silence you. Like bad boyfriends and bad girlfriends, don't waste one more minute on a bad relationship.
You are a bright shining star, and when you get better, you will shine bright again. Get yourself there.
Wednesday, January 29, 2014
There is no such thing as a minor surgery or a simple outpatient procedure. This is one if many ways that life without adrenals changes. A normal body uses cortisol to cope with the trauma that occurs to the body during these "easy" procedures.
Before you have dental or medical procedure, please understand how to increase your steroid coverage to keep yourself out of adrenal crisis.
Follow this link to very detailed information outlining how much steroid to take for different procedures and operations.
Tuesday, January 28, 2014
It has been 28 days since my BLA on 12/31/2014. The day of my surgery, I was given 300 mg of hydrocortisone intravenously. I was given 150 mg the next day. I have been tapering down since then. I left the hospital on a dose of 45 mg hydrocortisone at 7:30 am and 15 mg hydrocortisone at 3:00 pm. I added 0.05 mg fludrocortisone, a replacement for the hormone aldosterone), twice a day since I was post-op day 6. Every week or so, I decrease my hydrocortisone dose to something near 15/5. I am getting pretty close so that is good. My doctor will like that, because if I take more than my body needs, the extra hydrocortisone gives me Cushing's again. EEK! NO!
Last Sunday, I dropped my dose again from 20/5 to 17.5/5. I took the former dose for 7 or 8 days. Even that small of a drop takes the wind out of my sails. On Sunday, I woke at 7:30 am and was back asleep for a nap by 11:00 am. This, too, will pass.
I discovered that my dear friend Karen shared her post op BLA experience online and she provides clear explanation.
So today, I'll let Karen explain everything. I hope you feel well again soon.
Friday, January 24, 2014
Wednesday, January 15, 2014
Tuesday, January 14, 2014
Monday, January 13, 2014
Sunday, January 12, 2014
Saturday, January 11, 2014
I'm post op BLA day 11 and made it through day three at dose 25/5 (hydrocortisone 25 mg at 8 am, 5 mg at 3:30 pm). I dropped from 35/7.5 (12.5 mg is a little too big of a drop) because I had symptoms of high cortisol again: insomnia, 5 new pimples on my face, a small boil on my chest, and couldn't take a nap during the day for two days. Oh the misery! Haha Also, my mom pulled my husband aside and asked about my medication. She said I had been talking nonstop all day (no, really?!)
** A cortisol meter one day would be nice although I'm pretty impressed with my CUSHDAR. **
On 25/5, I am extremely fatigued by 1 pm and I have happily resumed napping for 2-3 hrs in the late pm. I have no other signs of AI. I am doing pretty well, but I wanted to post and explain my absence. My online and FB presence is spotty, and frankly what I see in the first 10 mins gets my attention for the hour I'm online. I wish everyone well and hope you are enjoying 2014. I love it. Best year yet.
PS. Did I already post about dropping dose and talking too much? Shoot. I don't even remember anymore.
Friday, January 10, 2014
Cushing's Patient Education Day, 2014
The CSRF is holding a Cushing's Patient Education Day in Atlanta, GA, February 28 - March 1, 2014. You can register to attend through our website.
Wednesday, January 8, 2014
** double checked many times for accuracy
Monday, January 6, 2014
Sunday, January 5, 2014
Adrenal glands, red in this image, are buried under all that human organ stuff in the abdomen.
I used to see BLAers, a term of endearment for those Cushies who have opted for surgical intervention with bilateral adrenalectomy, and watch them with awe and amazement, thinking they were BRAVE-- so brave to face uncertainty of Addison's because they knew, just knew, that shutting off the spiget of cortisol was the right thing to do. Taking that leap into the unknown is a very difficult thing to do, especially when the medical community and even family and friends warn you of the risks, lifelong changes, and irreversibility of the procedure.
Now that I have had my BLA, I *know* that we Cushie BLAers are brave, and that I am brave, too. This group of brave souls will save each other's lives over and over. We do so gladly. We reach out to one another for help and we hold on to one another in crisis. We are forever bonded by what we lack: adrenals.
I have been napping a lot, and my mind is calm. My pain level is good--under control. I was hoping to feel this good a few weeks from now. I'm so HAPPY! My brain and body are no longer fighting each other. They now work together towards the common goal of health and wellness. Have a good Sunday, everyone!
Current dose is 40 and 15 hydrocortisone, or 40/15 for short.