When No One Wants To Talk About It


Everyone in my close knit circle knows that I’m sick.  It’s nothing new, really.  I have been referred to as the hypochondriac of the family for years.  

The thing is though, the Autoimmune Disease is genetic.  It isn’t like I wanted to feel “off”.  So, all of those times, when I complained that I just didn’t feel good.  I seriously did not feel good.  My friends seemed to always be good-to-go out on a whim; but I wasn’t.  When I wasn’t in school or work because of some maladies (headache, fever, desire, etc.) I wasn’t going to manage midnight showings of Rocky Horror Picture Show or someone’s brother who is in a Cover Band.  It was easy to grow frustrated with me over it all.  And oh yes, I have felt it all…

  • Ear infections -had to have tubes as a child and adult.
  • Sore throat -tightening or burning
  • Headaches & Migraines (before Imitrex was a pill, I would either go to the ER for a shot or I had a dose in shot form that someone else had to give me -kinda like the EpiPen for Migraines.  The pill is much easier now.  Thank you Pfizer Pharmaceuticals)
  • Vertigo -being nauseous 
  • Vision problems
  • Asthma 
  • Allergies
  • Weight Issues (luckily my athletics calendar through middle and high school kept things controlled)
  • Insomnia/ Day Sleeping 
  • Food Sensitivities/ Smells
  • Broken Bones
  • Sharp Tongue/ Mood Swings
  • Rashes/ Hives/ Acne
  • Salt Cravings
  • Hiding foodstuffs from others
  • Utter Intolerance to Heat

What a mess!  I was a mess.  You couldn’t tell though.  I always dressed the part and even pretended to be “fine, just fine, thank you.”  Is this the socially acceptable response to offer, should anyone ask?
I have a doctor who is open to Eastern Medicine as well as Western and I think that she’s pretty cool.  I went to my yearly appointment and said “I have a weird thing I think I should tell you about…”   She was filling in my chart and writing out refill slips.

I got my purse, opened the little zipper pocket and pulled out a container with tiny white rocks in it.  


She stopped writing, looked at the container, looked at me, asked if she could smell inside, and seemed very concerned.  I told her “It’s salt, Sea Salt.  I crave it like crazy.  I put it in my cheeks or under my tongue until it dissolves.”  I always craved salt -as far back as I could remember.

She took a deep breath and admitted her initial thought, “it looks like Crystal Meth or some other street drug.”  She was relieved that it was just sea salt, but then a whole different look of concern spread across her face and it wasn’t followed up with a smile.

“How much do you use or suck on per day?”, she asked.

“Pretty much the whole container.  I don’t think this is normal.”

“You got that right!  Let’s run some tests.  Clearly your iodine levels are out of whack…  any other little containers in your purse that I should know about?”

“No.  Just the salt.”  I felt relieved.  I simply needed a mineral… I wasn’t crazy.  

The test results were not what I expected.  I was needing a lot of Minerals and Vitamins.  My stomach and intestines weren’t absorbing what they were supposed to from food -which was bad; but explained so much regarding my daily aches and energy levels.  

My mind started to see “the light at the end of the tunnel”.  I knew how this works… doctors take blood, make decisions, patients do what they are told, figure out the prescriptions, then POOF! Voila! Everyone is happy.

Now my family and friends are going to see me feeling ‘ON TOP OF THE WORLD!’  Right?  


Unfortunately it/this is not the case.  The Autoimmune Disease had already dug its tentacles into my tissues and organs.  I visualize the antibodies to be that little green phlegm guy and his family from the Mucinex commercial making themselves comfortable in my body.  

Doctors know that I have felt off all along.  I put up with the naysayers and the name calling; I even survived IBS trips to public restrooms in high school -mortifying.  

I just want to scream at the top of my lungs, I AM NOT A HYPOCHONDRIAC! My insecurities are NOT “unfounded!” I had to pretend to feel “fine” for so long; it’s no wonder I always doubted myself…   You failed for not believing me!  You!  Not me!  




Now what?  It’s official that I can’t fight off infections or common colds because of this invisible disease (sneer, eye roll, mean face)  I have offered status updates of the tests, results, to-do’s, and what the doctors plans are for me by telling you-my lovely close circle of friends; but,  you are not listening.   My husband said, “It’s just hard to believe you because no one ever gets sick this often.”  

 I have looked at each of you desperately trying to get you to have a conversation with me about what it’s like and anything you are curious about.  


You have to know that the Autoimmune Disease is genetic (hint:   you or your children may have it too).  Did you know that most patients are misdiagnosed, and suffer because they don’t have the proper medication (s) that they need to manage their symptoms.

Hashimoto’s can go undetected or be mistakenly labeled as something else more often than not.  The Federal Government hasn’t spent money to find a cure since it was first discovered in 1914.  (WWI began quickly thereafter and that was that.)  Today, hypo and hyper thyroid problems are fairly common.    Especially in women over forty.  I wonder how many doctors have been assuming that Menopause was the answer… Eeeeeeek!

  

Having the “Triple Threat”  -Hashimoto’s, Hypothyroidism and Autoimmune Disease (triple threat) is not a regular conversation piece.  It’s not on the news or part of a “Reality TV” show…  

Unfortunately if misdiagnosed The Triple Threat quickly feed off of eachother and become five over night -at least that’s how it was for me.  The two extras are Adrenal Fatigue and Mental Illness.

Too often this gets labeled as bipolar disease, but it’s not.  It’s Hashimoto’s, Hypothyroidism and Autoimmune Disease with Adrenal Fatigue and Mental Illness.  The complete debilitating flare-ups are random and usually stress related.  The irony of this is that I become more stressed when I’m going through a flare up thus an unrelenting cycle of flare-ups and stress.

I have done sooooooo much research on this that I want to share it with everyone who wants to listen; but no one wants to talk about it.  After all, I don’t look sick.


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4 thoughts on “When No One Wants To Talk About It

      1. B- I hear you my dear. Been there done that. And now I am old and having “normal” aging issues too. I have Crohns, arthritis, fibromyalgia, IBS, hypothyroidism, depression et al. Autoimmune diseases, all of them. I try not to complain. No one likes to hear us talk about what hurts. Some days I could tell you more easily what does not hurt. I take my meds and try to stay positive and exercise. Walking is the best ex and good for the depression that all this brings on. I am sure your intestinal surgery has made it so your body does not absorb nutrients as it should. The Crohns causes the same issues and I am anemic. Get some sun as often as you can and concentrate on the good in your life. Like our animals! Love you pumpkin and I do sympathize. XXOO AP

        Liked by 1 person

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