RANT: Believe in you (similar to the last one but a little different)

The last rant was about self-confidence.  It was intended mostly for getting better medical treatment.  This rant is about believing in you and why you should believe in you.

We all experience life differently.  We all have different genetic make ups, physiology, diet, exercise and deficiencies and/or excesses (known and unknown).  We all manage our AI and other issues differently.  As a result of all of these differences and many more, we all will experience life very differently from others.  At different points in our lives, we may experience similar situations differently.  For example, I used to be a puker.  Now, I'm not.

When you experience things, good or bad, write it down.  Have proof of the things that are happening in your body.  No offence, you probably don't have a photographic memory (OK, you over there, you might, most of us do not).  Written proof of your experience is evidence of how you feel and when you felt that way.  We all need this information to believe in ourselves and to see patterns.  I digress!

Even if you don't write things down so that you can see concrete patterns (or total chaos), if you have symptoms, you have symptoms.  Believe it.  Do not let a friend, relative or medical professional tell you that it's not possible for you to feel something.  Just because people might tell you that something is not possible, it doesn't make your experience less valid.  Yes, you can be fatigued on 20 mg of hydrocortisone.  Your thyroid numbers might be "normal" (according to unresearched medical professional who is ignoring all of your obvious symptoms).  If you are tired, you are tired.  If you have a doctor invalidate your experience, get a new doctor IMMEDIATELY.  If friends and family tell you that you're not tired or what you are experiencing is not actually happening, I don't know what to tell you but personally, I wouldn't share information with them any more because they are jerks.  Friends, family and medical professionals should believe in you and your experience.  They should listen and feel empathy.  They should help you find solutions to your issues.

If you don't have a good support system that listens and empathizes, find one.  You deserve it.  You will get well faster if you believe in you.  If you believe in you, you will feel that you deserve to get well and you will find ways to make that happen.  BELIEVE IN YOU.

Rant: Self-Confidence, get some, get better treatment

After 15 years working with and talking to people with adrenal insufficiency, I've determined that the only ones who get treated decently by the medical community are those that are lucky or who have self-confidence.   I will not go into the lucky part here.  If you have a great doctor, feel great and have all of your adrenal insufficiency and hormonal imbalances addressed, this rant is not for you.

If you lack self-confidence and are not lucky enough to feel fabulous, you need to get some self-confidence.  You might wonder how self-confidence can help you get better treatment.  Here's how.

If you walk into a doctor's office knowing your adrenal insufficiency information, you know more than the doctor.  You've probably read more and you have definitely experienced more.  Doctors like to say adrenal insufficiency is complicated.  It's not.  If you don't understand AI, it IS complicated.  What they are saying is that they don't understand adrenal insufficiency.  You can't expect them to understand it.  YOU have to understand it.  When you come in acting self-confident (not overbearing) and matter of fact, you will make them feel like they ought to step up and fake their own self-confidence.

A self-confident person walks into the office and says:

1.  Here is a paper listing my current meds and dosing schedule.  At the bottom is a list of the refills I need with the name of the med, the strength and the number of refills.  .
     a.  I call the nurse a month before my appointment and ask for orders so there is something to talk about in the appointment.  Without the numbers, a doctor should not even know where to start making changes in your meds.  Get your results ahead of time, know what they mean and go in being an informed consumer.
     b.  Know about each and every test you want ordered.  There's no excuse for not knowing what tests you need.  NONE.  If your doctor has refused in the past, bring ONE piece of excellent, reputable, medical documentation that backs your position.  Ask what the harm would be in getting DHEA-S tested, for example.  What would be the harm of replacing one of the most abundant hormones in the human body to mid-range levels, it's good for bone density and an androgen precursor!
     c.  State all of these things as matter of factly as possible.  No big deal.  This is what you always get done.  Even if it isn't what you always get done, pretend it is.

2.  If you have issues that need to be addressed, put the top three on a separate piece of paper.  You have one copy, the doctor has another.  Bring a pen and paper and eagerly await his answers.  Write them down.  Insist on follow up testing and a follow up appointment to discuss results and their meaning.  Do all of this at once so you can streamline the conversation.

What self-confidence comes down to is educating yourself and clearly asking for what you ought to have tested and treated as someone with adrenal insufficiency.

Call it what it is, adrenal insufficiency

Adrenal insufficiency, Addison's disease, PAI, SAI, hypoadrenalism, hypocorticolism, Sheehan's, Polyglandular Autoimmune Disorder on and on.

Yeah, I know my blog and website and business are all called "Addison's Support" but I made that call nearly a decade ago.  I'm not changing it now.  Live and learn.

When you don't produce cortisol, you don't.  95% of the time, it doesn't much matter what causes it*.  The treatment is the same, the monitoring is basically the same, emergency protocol is EXACTLY the same.  *Yes, I know 5% of you have a ginormous tumor or some odd thing going on or CAH.

For the most part, it's really stupid to use any terminology besides "adrenal insufficiency" in a medical setting (unless you're at the veterinarian, they seem to have a clue) unless you want to die a little faster or get poor treatment.  Addison's Disease means nearly nothing to most lay people and medical professionals.  You can't get good treatment if your doctor doesn't know what's going on!

Call it adrenal insufficiency.  Anyone who thinks about the words can figure it out.  Adrenals are not working right.  Sure they will probably jump to adrenaline but at least they will know what gland has an issue.  "Addison's Disease" says nothing more than some dude thought he was important enough to name a "Disease" after himself.

I put "Adrenal Insufficiency" on my emergency bracelet.  EMTs have less training than a doctor and will be on site first.  Do you think they will stop and look up "Addison's Disease"?  My guess is no or if they do, it will slow down the process of getting you to the ER.  They can't give you a shot (in most counties of most states in the US) so they have to transport you to the ER FAST.

In an emergency, there was some talk that secondaries didn't need 100 mg Solu-Cortef.  I'm not sure why.  If you don't make ACTH, you can't make cortisol.  If you can't make cortisol due to lack of ACTH stimulation or damage to the adrenal cortex, you can't make cortisol.  No cortisol in an emergency=death or brain damage.

Primary or secondary, you need to have the exact same hormones monitored.  Interestingly, many people are misdiagnosed as secondary because they had ACTH tested at the wrong time of day and protocol was not followed.  If a person is truly secondary, growth hormone should be monitored.  If a person is secondary, the adrenals can eventually atrophy and cause issues with sodium.  All the same stuff needs to be monitored.

No matter the cause of your AI, you need HC, maybe florinef, sodium monitored, thyroid monitored, sex hormones monitored.  If you're deficient, you need them replaced.  It makes no difference what you call your issues.

Make it easier on your heath care professional, call it adrenal insufficiency.  Heaven knows they have a hard enough time treating us properly without making them look things up.