The Thought Thief: Fibro Fog

We all experience our symptoms differently, even those of us with the same diagnosis.  Because we simply are different people, we have different DNA, and we have different collections of health problems that invariably impact our individual chronic health experiences. 

For me, fibro fog is the oddest of my regular symptoms and I struggle to explain it.  People understand pain.  They understand exhaustion.  But let's be honest: fibro fog is one bizarre beast.  It's a thief that slips in and jostles our thoughts, scrambles our conversations, and wipes our memory.  It comes and goes, seemingly at will, but comes most often when I am sleep deprived and either leading into or while in a flare. It's like listening to the world while underwater: I can hear, I can see, but the world is garbled and unintelligible. 

Don't Call Me a Survivor

You're a survivor.  You're so brave.  You're so strong.  G-d bless your...whatever.

Singular words can't possibly encompass the experience. I find it infuriating.

The days before diagnosis.  Of symptoms and feeling sick, pain, and fear.  Of doctors appointments and referrals.  Labs, and X-rays and scans.  Referrals to specialists.  Of self doubt and fear.  Of increasing copays and bills and no end in sight.

Then of diagnosis.  Of relief and dismay.  Fighting with the insurance company and expensive medications.  Of both support and unhelpful suggestions from family and friends.  Of spiraling down the Google river and learning more than you ever thought possible.

How Asthma Changed My Awareness

I spent nearly a decade working for pediatric therapists, and because of this I was always surrounded by children.  Not once did I ever get the flu!  Ear infections?  Sure.  Strep?  Of course.  But I've always been big on getting my annual vaccine, and I chalked my "flu free zone" to just that: vaccines rock.

I've been in my new corporate job for just under two years.  Since I've been here I've had an ear infection, bronchitis, and the flu, twice!  Turns out adults are just as yucky as kids!

About a year into my new position I was diagnosed with asthma.  This was a whole new ballgame for me: if there's one thing that's always worked well, it's my lungs.  Well, I usually get an upper respiratory infection a year, but breathing, in general, always worked.  I may have a decent assortment of diagnoses (fibromyalgia, gastroparesis, interstitial cystitis) but hey, breathing?  This has been completely off my radar until asthma came along.

Acceptance and Raging Jealousy with Fibromyalgia and Chronic Illness

Just because I've long accepted my chronic illnesses doesn't mean I don't periodically wish for more. 

I've accepted who I am and feel well adjusted to my reality.  My limitations.  The fact that I can, in theory, do whatever I want but may be in great pain while doing it, pay for it greatly later, or completely peter out while in the middle of it.  I am still a loving, kind person who volunteers, helps friends, who is optimistic in light of many personal roadblocks.

But I'd be lying if I didn't voice the other side of it.  The feelings of raging jealousy at those who can do the things I'd love to do.

The 4 Types of People You Meet In Chronic-Land

Chronic-Land is a different kind of place: every member of the community has a diagnosis of some sort, or lives with substantial symptoms of something yet diagnosed.  It's members are on medications, use mobility aids, use heating pads, are on special diets, and have adapted their lift to the best of their ability to have the most function possible.  Chronic-Land covers the world, and nobody actively seeks to be part of it.

Members of Chronic-Land meet a lot of people after you've gaining citizenship.  This is an outline of some of the people I've met after joining, but it's also a guide to others.

Some of these people you'll meet have been part of your life forever, others will be new introductions.  But when it comes to being chronically ill, disability, and/or an invisible diagnosis, I've found that they fall into a couple of set categories:

1.  The Disbelievers
These people don't get it.  Maybe you don't "look" sick enough, or you don't need to use a mobility aid all the time, or have a diagnosis that is made primarily by exclusion.  Whatever it is, there is a part of them that thinks you may be faking it or that it just can't impact you on a serious level.  Like Tom Cruise, these people think that a healthy amount of exercise and vitamins will cure you, and they're frustrated that you don't get that.

What's in a Name? The Power in Naming Your Health Condition

I once read that it was helpful to be able to specifically yell at your illness or health problem.  Please, don't ask me where I read this, I have no idea.   But the point of the article was that there was power in naming whatever "it" was, both in terms of diagnosis but also in having something specific to direct your frustrations towards.  That you'd have a name to literally yell at.

At the time I only had fibromyalgia - now, that's quite the fancy name for this not so specific problem, but it was also a bit a mouthful.  And what would I be even yelling at?  My back pain?  My brain for not letting me fall asleep?  It felt...not quite right and lacking specificity.

Why Access To Health Insurance Is Important

Health insurance is one of my greatest voting related issues, because let's be honest, it's important.  It makes my medications (mostly) affordable.  Covers doctors visits.  Makes a $6,000 ER visit $600.

It hits me personally.   In my mid 20s, BCBS denied my application for individual health insurance.  I appealed three times, including a letter from my healthcare provider, but I was still denied.  I was working part time and applying for individual health insurance due to a trifecta of problems, including attempting to complete a graduate program thesis while, dealing with a new diagnosis of gastroparesis, and soon to be no longer qualifying for insurance under my parents.