Three year BLAnniversary

It's my BLAnniversary! Three years ago, I had my malfunctioning adrenal glands removed in an effort to cure myself of Cushing's disease. I underwent two unsuccessful pituitary surgeries, medication therapy with ketoconazole, a drug that lowers cortisol, for 15 months, before deciding to undergo what many doctors call "a surgery of last resort." Not exactly the words that make a patient feel warm and fuzzy, yet I moved forward like many of Cushing's friends did before me and after me, and I pursued a life free of excess cortisol. Big risk, big rewards?

In the last three years, I have had some good days and many bad days. I can't say that it has been easy. In fact, it has been very difficult.

It is not so important to me to recall all the details of the journey. For this New Year's wish, I choose to focus only on the fact that I educated myself and took care of myself enough to survive that past 1095.75 days. My only job now is to keep going, every day that comes my way, in hopes of spending many more days with my daughter and husband plus my lovely friends.

Happy New Year to all y'all.

READY FOR BLA: keychain case

My bilateral adrenalectomy is scheduled for Tuesday, December 17th. These pesky adrenals come out in two weeks. I look forward to the day.

I have a list of things to do a mile long that I plan to share with you. I'll feel better going into surgery knowing I have taken care of some details.

Today, I share this nifty keychain with pill container that I found for $1.99.  I bought it today, and there is plenty of room to store hydrocortisone. The description says the case can hold six pills, but I found it to hold much more.  I easily loaded 15 pills of 20 mg Cortef and 15 pills of 5 mg Cortef in the container.  That's nearly 400 mg of hydrocortisone with me at all times to cover me while I'm on the go. It is also BPA free and food grade plastic. I also like that the sliding button, shown in blue, keeps the container closed to prevent accidently opening.

One thing off the list. I'm off to a running start. ~M

Day 6: Around the Cushie World in 30 Days~Danielle

Hi everyone.  Today, I want to show you how too much cortisol can destroy a body and force it to pack on weight.  I share with you a post from Danielle's blog Life with Cushing's:  my journey through diagnosis, treatment, and aftermath of Cushing's disease.

In her post simply entitled Pictures, Danielle shares with us what happens when one can *stop* cortisol from being overproduced in the body.  Danielle looks AWESOME.  She further charts her weight gain and subsequent loss after her bilateral adrenalectomy here.  

Thank you for sharing and making us part of your recovery and healing!

My Friends with Adrenal Insufficiency

     Patients with Cushing's disease and those with Addison's disease face the same bully every day.

     Cortisol is an omnipresent force, always lurking and lingering, so ready to remind you that you do not control your body. The cortisol does.

     Cortisol runs through the bodies of healthy people and continues about its job without notice. Its predictable, daily function is required to sustain life. 

     For those enslaved by the adrenals' whims, it is a constant thorn in your side. You see, Cushie bodies make too much cortisol, while Addisonians make no or insufficient cortisol. While each disease respond differently to the cortisol malfunction, both patient sets deal with the life-threatening risks of adrenal crises.

     Cushies walk in the shoes of their Addi cousins after pituitary surgery (to stop excess cortisol production by renegade ACTH tumors) or adrenal surgery (to remove the cortisol-making once and for all by removing adrenals. Just look what happens when adrenal glands do not respond to signals from the pituitary gland properly.

     Both Cushies and Addis can suffer symptoms of low cortisol and the devastating consequences if these symptoms are not treated in time. 

     What starts as mild adrenal insufficiency can turn into acute adrenal crisis very quickly, putting the patient at risk for shock and sudden death.  Think you can go to a paramedic or hospital for help. Think again. As you may have caught on by now, there is nothing easy... or even FAIR... about Cushing's disease.

• Imagine if the medics in the ambulance didn't know what could save your life.
• Imagine if the medics knew, but the state has laws in place that prevent them from keeping a supply of it in the ambulances.
• Imagine if the medics refuse to administer the Solu-Cortef injectible medication you have with you, along with an adrenal crisis letter from your physician, but too disoriented to give yourself, because of state regulations limiting its availability
• Imagine getting to the hospital only to find emergency room staff ignore both your CRISIS letter from your physician and medical alert bracelets, necklaces, and even tattoos-- all intended to save your life and speak for you when you can not.
• Imagine waiting for hours and hours for your medical team to run enough tests to *believe* you are sick, and then to follow the still squabble over following the protocol outlined in your crisis letter.
• Imagine if the hospital, like the ambulance, does not carry the Solu-Cortef injectable at all, or, insist on giving you a lesser grade of cortisol shot that acts much more slowly and will not bring you out of the near coma you are in or about to fall into, despite clear instructions in the crisis letter
• Imagine your friend or family member getting hauled away by security and thrown out of the hospital for advocating emphatically on your behalf.

THIS JUST CAN NOT CONTINUE TO HAPPEN ** ANY MORE. ** 

     Do you think I may be overdramatizing things?!  Well, I can add a name to every *Imagine* line above, a name of a person who nearly died because solu-cortef and its life-saving formula was kept from them from ambulances and hospitals who are supposed to protect and save them. If you are the prove-it-to-me-one-more-time type, you can read plenty of personal testimonials for yourself.

     Access to Solu-cortef should be as standard in ambulances and ERs as glucagon shots for diabetics. Deaths due to adrenal insufficiency heartbreaking and so preventable. 

     I want to thank the Adrenal Insufficiency United organization for creating the wonderful video below. On behalf of Cushing's patients everywhere, we thank you for their efforts to increase access to Solu-Cortef for all patients with unpredictable or absent cortisol production.

     In addition, a shout out to the CARES Foundation which supports patients with congenital adrenal hyperplasia.  Like the Adrenal Insufficiency United organization, CARES advocates for the widespread availability of Solu Cortef in ambulances and hospitals -- without question -- for any patients who may face low cortisol levels.  

     In light of the dangers presented in this post, it is always best to administer Solu-cortef before you even go for medical help.  The patient or the caregiver must be ready to administer the injection on his/her own.  Here are some instructions to download, so you are prepared to save your life no matter what.