Rant: Why is adrenal insufficiency mismanaged?

It's been so long since I've ranted.  Hold on to your hat!

So many people, especially the undiagnosed and newly diagnosed ask me, "Why didn't my doctor know what tests to do?  Why didn't he* tell me X, Y or Z?"

It's incredibly simple.  Your doctor doesn't know.  Your doc doesn't know the tests, how to interpret them, what other hormones to check for or how to instruct you to take your meds.**

How could your know anything about AI?  The incidence of AI in the general population is 40-60 cases of AI per million.  That's not many people.  The chances of your doctor having any experience with AI are very small.  More than likely, your doctor might have had someone who became secondary because of steroid treatment for a different disorder (like lupus) or because of an organ transplant.  Let's give your doctor the benefit of the doubt, he's got FIVE AI patients out of hundreds of other patients.  FIVE.  How much time can he spend researching and reading about AI?  Why would he?  He learned a little blurb in med school, give the patient steroids once or twice a day, they will have a poor quality of life but they will live.  If your quality of life is slightly above poor, he's not going to try to do more.  You are ahead of the curve why should your doctor do more?!!  Numerous studies say that people with AI have poor quality of life.  If your quality of life is poor, well, that's what happens with AI and it's acceptable.  Why do more?

How to avoid being a mismanaged AI patient.

This is going to be so boring for some of you.  Sorry.

• Learn about AI Adrenal Insufficiency & Addison's Owner's Manual
• Insist on an injection kit.  If your doctor won't give it to you, he wants you dead and you need to find a different doctor.  IN MOST STATES, EMTS AND PARAMEDICS ARE NOT PERMITTED TO CARRY OR INJECT THE LIFE SAVING SOLU-CORTEF.  
• Adrenal crisis in treated Addison's disease: a predictable but under-managed event.  CONCLUSION:  The endocrinologist has a responsibility to ensure that Addison's patients have adequate access to life-saving emergency injection materials and repeated, practical training sessions in how to use them, while the general practitioner plays a vital role as in arranging prompt emergency admissions.
• Join a forum that fits your needs and provides support.
• Replace all missing hormones in the appropriate order.
• Test and retest for comorbid conditions.
• Lose weight if you are fat and stop drinking all types of soda (OK, that's my personal bias)
• Get 30 minutes of exercise every day of the week to maintain some semblance of health, get more exercise if you want to be healthier.

So you've done everything above.

Now you know your shit.  You've got the AI info down, you know what your hormone status is.  You need to educate your doctor.  Be kind, be thoughtful, hand him info to put in your "file".  If you take the nice approach and this dude is totally unwilling to discuss the benefits of physiologic dosing, DHEA, or the basics that will keep you from keeling over, stop right there and either fire him or back out of the room.  Get another doctor who treats you like a living, breathing, intelligent human.

Next!

• Let's say you've found a good doctor.  
• Make sure you get copies of ALL of your radiology reports and blood work.  Put them in a neat binder by date.
• Read about AI, read, read.  Use reputable sources (medscape, pubmed, scholar.google.com).  Share the info on a forum. LEARN.  

IF YOU ARE THE EXPERT, YOU WILL SUCCEED!

*I'm not sexist.  Just using one pronoun instead of he/she.
**I'm SURE someone out there has a super fab doc that knows EVERYTHING and has done EVERYTHING right.  Please post his name, address and phone number in the comments section.  The very competent AI docs are few and far between.  If you're not comfortable posting publicly, post on my forum at www.addisonssupport.com or addisonssupport@googlegroups.com.

July's 2012 non-Vol State pictures

A local park.  I only ran a little because it was right after VS and I was tired.  Despite my exhaustion, I ran my ass off when I got swarmed by mosquitoes

A really big bat house at the park

In Florida they don't serve pollo, they serve Polio.  I'll pass on that one.

I considered going to Wednesday Wellness Day for the "free massage vibrator".  Oooo , la, la!

My sweet Grandma Margie.  I visited her before I did Vol State.  Isn't she cute?  She's 100 years old, 101 in January.  I love her.

First things first

First, thanks so much to all the people who contacted me and offered support and suggestions for my future career.  I was touched and amazed by how many people reached out and made suggestions and gave me encouragement.  It means so much to me!  I'm constantly amazed at how many friends I have whom I've never met and some that I haven't seen for many, many years.  Thanks to you all!

Since I've written the "Help me build a door" post, I have to admit that I've gotten a little overwhelmed.  I think overwhelmed is a constant state of being for me but more on that in a minute.  My plans have not changed much.  I am still going to get my personal training certification through ACE and hire myself out as an independent contractor as a stop gap measure.  Because of the encouragement of friends, I will be writing a book about the management of adrenal insufficiency.  I sent the general outline to a few friends and I'm completely thrilled at how much feedback I've already gotten.  Onward!

On being overwhelmed, I used to think it happened here and there.  No, not exactly.  I think I'm perpetually overwhelmed.  There's so much to do in this life, so many places to see, exercises to do, friends to contact and miles to log.  There are things to learn, people to appreciate, books to read and toilets to clean.  How does one do it all?!  Where to begin?  This is all rhetorical of course.  Only I can come up with my path, only I can prioritize.  I am the only one who can empty my pesky inbox (a constant source of stress and failure for me).

Thanks to all of my friends who support me and love me unconditionally.  Some of you contribute to the fundraising I do, some of you run with me (for reals or virtually), some send me a text or email and ask how I am, some send me presents in the mail, others contact me and update me on their circumstances and how they have changed.  On my forum, you gals and guys are the best.  Thanks to each and every person who is in my life and supportive in any capacity.  I may not have mentioned you specifically, I might not have mentioned the thing you did but you can be sure that I've been touched by your generosity and I've quietly thanked you and appreciated you very recently. [Kim, I put something away today and touched the box Ken made me with reverence.  I miss you.].

Any how, I'm trying to catch up here on this blog.  It's been so valuable to me as a journal of my health  circumstances and my Life.  A repository of pictures, moods and increasingly silly accomplishments and injuries.  It's been a great way to help people with AI who've been in the same circumstances as I.  My memory is faulty but this blog keeps things in perspective and somewhat accurate.

There's so much about adrenal insufficiency running through my head.  Expect a few "rant" blog posts with palate cleansers of pictures.

Thanks all,

Dusty