Sometimes, you just have to share.

I haven’t posted in a very long time.  I’m sorry for that.  Life has gotten in the way of many things that I’ve previously enjoyed.  It’s been an endless cycle of ups and downs.  Some days are amazing.  Some days are very, very bad.  My health has been at the top of the priority list for the past year after a very scary incident involving my Diabetes last November.  I have been under the care of my physician, and finally, after almost 9 years of being Diabetic, an endocrinologist.

My health has gotten somewhat better in a few areas– I’ve lost 35 pounds, gotten my Hemoglobin A1C down to a reasonable level, and followed every direction given to me by the medical team (which, if you know me, is a HUGE accomplishment all on its own because I am non-compliant with taking pills regularly).  This is all good.  And, I’m pleased to a degree.

But, as many know, with the good comes the bad.

I’m still not well.

I’ve stopped losing weight no matter what I do.  I can no longer regulate my blood sugar levels (even though my A1C suggests that I am doing just that).  My breakfasts consist of 9-10 pills (depending on the day of the week) and an injection.  I am exhausted.  All. Of. The. Time.  It doesn’t matter if I sleep for 2 hours or 20 hours— I feel as if I’ve been hit by a truck all the time.  My muscles ache all the time.  My head pounds just about every day.  The depression and anxiety are almost unbearable.  I bruise if I just think about bumping into something.  My hair is falling out — everywhere except my face.  I’m getting ‘grandma whiskers’ all over my chin. I break out with little pimples all over my jaw line that do not heal for weeks.  I cannot concentrate on things for very long.  I forget a lot of stuff.  I appear 5 months pregnant– even though my last children were born almost 11 years ago.

Repeated complaints to the doctor only earn me new pills to try.  I finally told the endocrinologist that I needed answers.  His response?  “You almost certainly have sleep apnea.”  I felt my stomach sink a little and said, “I sure hope so seeing as I’ve been on CPAP for the past 3 or 4 years!”  He appeared surprised and said “well, we need to get rid of the extra weight.”

Again, my stomach sank.  I cannot tell you how many times I’ve been told I’m fat and need to sleep more.

I finally told the endocrinologist that I wasn’t leaving until he came up with tests to run to figure out what is going on– because, as I told the doctor, I’ve lost 35 pounds and have a cpap machine, and I feel worse. Not better.  Worse.

He finally decided to check my adrenal functions.  It was a simple blood test for cortisol that had to be completed before 9 AM.  I failed.  I then had to do a second test called a dexamethasone suppression test in which I took a low dose of dexamethasone that should have suppressed my cortisol production to an almost nonexistent level.  I failed that test, too.

If you’re not familiar with what cortisol is– it’s the stress hormone.  It is a steroid.  It helps with sugar, protein, fat and carbohydrate metabolism,  anxiety/stress, blood pressure normalization and much more.  In most people, the pituitary gland will send out a hormone called ACTH that signals the adrenal glands to produce cortisol.  The system is alleviated of the stress or symptom and the adrenals stop producing cortisol until triggered again.  I find it fascinating.  It’s a pretty cool to learn how these things all work together to make a body function appropriately!

Unless it doesn’t function appropriately.

Like mine.

Apparently, I have an abundance of cortisol.  Something is going haywire in my system and it is wreaking havoc on my entire body.

This ‘something’ is called Cushing’s Syndrome.  From WebMD,

Cushing syndrome is a rare endocrine disorder characterized by a variety of symptoms and physical abnormalities that occur due to excessive amounts of the hormone cortisol, a type of glucocorticoid. Glucocorticoids are a class of steroid hormones that are important in the regulation of the metabolism of glucose and also modulate the response to stress. Cushing syndrome most commonly affects adults between the ages of 25 to 40. It can be caused by prolonged exposure to elevated levels of glucocorticoids produced within the body (endogenous) or introduced from outside the body (exogenous).

Cushing’s is usually caused by an over use of corticosteroids– which I have not used.

It’s also caused by a tumor on the pituitary gland or the adrenal glands.

It can also be caused by an ectopic tumor elsewhere in the body that produces ACTH and continually triggers the adrenal glands.

The problem with Cushing’s is that it is ‘rare’, so, it is often misdiagnosed as something else because the symptoms can all be attributed to many other conditions.  For me, it’s been labeled as depression, anxiety, diabetes, obesity, migraines, sleep apnea, fatigue, peri-menopause, and a number of other individual ailments.  Instead of looking at the whole picture and seeing a pattern, I’ve been treated for each individual problem.  This is the norm.  And it truly sucks.

Don’t get me wrong, I am very glad to FINALLY have an answer to why I cannot feel better no matter what I do.  But I’m also angry.  I’m so angry at the number of years I have had these symptoms and been told to lose weight and get some rest.  When I was a teenager, I got the migraines– the neurologist tried me on a bunch of different medicines that never seemed to help at all.  My senior year of high school, I blew out my hips in Cross Country– docs told me Bursitis.  Went to college and gained a lot of weight– which I attributed to the ‘freshman 15’ and the booze, but it wouldn’t go away after I left school and quit drinking.  It just got progressively worse.  The hump on the back of my neck that I thought was a herniated disk that has been there forever.  The double chin and thick neck.  The huge stomach but thin legs (finding pants is a NIGHTMARE, btw).  The crazy stretchmarks on the insides of my arms, the back of my calves, my lower back and my whole abdomen that I’ve had basically as long as I can remember.  Yes, I had a set of twins– so, it’s now more difficult to discern which stretch marks were there before the huge baby belly.  The facial hair.  The receding hair line.  The thin skin and easy bruising.  The horrible dark circles I have under my eyes that, if I look back in the old pics my father sent, I had even as a kid.

How long have I had this awful disease???  How many years have I lost???  Will I EVER feel better?  The migraines and bursitis date back to my teen years.  Those are both symptoms of Cushing’s.  The diabetes I’ve had for almost 9 years.  The huge stomach and thin legs.  Both symptoms of Cushing’s. The bruises, the stress fractures in my foot.  The numbness and tingling in my legs when I walk.  All symptoms of Cushing’s.  Not all because I’m “fat”.

The many  nights I cried myself to sleep begging God– or whoever would listen– to just let me not wake up because I couldn’t possibly make it through another day like this.

I’ve been lucky to be put in touch with a gentleman that has the same disease and has not only survived but thrived.   Surprisingly, he lives about 5 minutes away from me.  I say surprisingly because the statistics are that only 2-5 out of every 1 million people are diagnosed with Cushing’s each year.  I didn’t expect one would live so close.  He has helped me tremendously to understand what is going on with my body.  He has helped me realize that I’m NOT crazy and most certainly NOT a hypochondriac.  He has helped me realize that while this diagnosis sucks, it is also the start of finally regaining my life.

I am still in the diagnostic stage– there are LOTS of tests.  Right now, we do not know where the tumor is or what course of treatment I will need to undergo– surgery to remove the tumor, radiation if the entire tumor cannot be reached or removed, chemotherapy if it’s an ectopic, cancerous tumor or medication if it an inoperable tumor…

So, why am I sharing all of this now?  Because.  It proves that old saying that you know your body better than any one.– and to not give up trying to find answers.  If something feels off, it probably is.  If it doesn’t fix itself, it likely won’t.  Don’t allow the doctors to simply put a band aid on each problem.  Don’t just sit back and wish, beg, or wait to die like I have all these years.  Do something.  Insist on seeing the right doctors.  Insist on blood work or scans.  Fight for your own health because you are the only one that will.  Be able to put your symptoms into words.  Write them down.  Document the frequency and if anything calms or agitates them.  Be proactive in your healthcare.  Ask questions.  Lots of questions.  Ask more questions.  Most importantly– tell someone else what is going on.  Let people in.  They may not understand what you are going through– and that is okay.  They don’t have to.  Sometimes it helps just to know someone is there if you need to talk, cry, scream, or even rejoice.



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