#dSavannahDefects – I is for… (pt 2)

My theme this year for the #AtoZchallenge is #dSavannahDefects, aka “What’s it’s like dealing with #InvisibleIllnesses”. Or, in short, {some of} what’s wrong with me.


I_2This is part 2 of my I post, since I ran out of time to write everything I wanted to in Part 1.

… imaging

In the medical world, imaging is “creating images of the human body or parts of it, to diagnose or examine disease” (thanks, Wikipedia, for the easy definition). Types of imaging include X-rays (my topic for the letter X in the 2015 challenge), MRIs, CT-Scans, ultrasounds, endoscopy, and more. (I have had all of these tests done.) (Last year, I had *ten* imaging studies done. *Ten*. And they still don’t know what’s really wrong with me.)

For an x-ray, you basically stand up against an x-ray detector (sorta like a wall) and they shoot you with a camera thingy that sends a form of radiation toward you. It then takes a picture of “hard stuff” in your body, such as bones. It can also show you have a lot of gas. (Thanks for embarrassing me there, spinal doctor assistant…)

Or, if you have an “Upper GI Series”, you drink one of the foulest substances known to man, barium (also known as a chemical element {symbol Ba and atomic number 56}), and then you do a bunch of moves that I call “extreme funky modeling”, which then shows the amount of acid in your esophagus, etc. (This was before electronic images, so sadly, I don’t have those photos to share.)

My maternal grandmother had a hip replacement, and later, got dementia. My dear aunt, who kept track of and took Grandmother to appointments, one day (after dementia) had to take Grandmother for a followup on her hip. This involved getting an x-ray.

Dear Grandmother swore up and down she had never had a hip replacement. She also was very put. out. that she had to go see the doctor and have the x-ray taken.

Well. Her whole entire life, Grandmother wore a cardigan, and in the pocket of said cardigan, would put her key in the right pocket. She forgot to take it out for her x-ray, which resulted in this image:

grandmother's hip

Yup, it looks like Grandmother has keys growing out of her hip.

She was NOT as amused as her doctor or her family.

As for me, here’s the most recent x-ray showing my poor spine and its little jaggedy scoliosis bend:

imaging_dg_scoliosis

MRIs (Magnetic Resonance Imaging) involve laying in a tube as still as you can while this horrible noise batters you – the magnets doing their thing. Thank goddess I’m not claustrophobic, is all I’m saying.

It takes about 30 minutes of pounding for the tech to get a complete set of images, and then they hand you a CD with all of them on it. Which I can only look at on my hubs’ really old PC, for some reason. And then I have to take a photo with my phone if I want to share it. (High-tech, right there!)

A few days later, you get a report from a radiologist who “reads” your images. Or your doctor gets the report, and you have to request a copy, because you need to take the CD and the report to further doctor visits.

Last year I actually had *four* MRIs done, because they don’t just do an MRI of your back; they have to specify what part of the back, or shoulder, or whatever. Here is one of the images (no idea which “study” it’s from. Sorry again.):

imaging_dg_headshouldersneck

I’ve also had two CT Scans, which feel like they work similar to an MRI in that you have to lay very still. But they shoot radiation at you, a whole bunch more than an x-ray. Here is a CT scan of my sinuses (the only one that provided actual “film” to take to my doctor; I snapped a picture of this with my phone while he had it up on the lightboard):

imaging_dg_sinuses

Most people have heard of an ultrasound, especially when it comes to looking at babies in the womb. Ultrasounds can also be used for other things. Like, my pain doctor did an ultrasound on my shoulder, and that’s how I learned that I had a tear in the rotator cuff, ac joint degeneration, referred pain from bicep tendon inflammation, and bursitis. Fun, huh?

I’ve also had an ultrasound of my ovaries… and … I cannot begin to tell you how shocked I was when my gyno did an ultrasound of my girlie parts with … what was essentially a dildo. But without the fun.

Endoscopy is essentially a tube with a camera on it. I’ve had several of these in my life, including an endoscopy before I had my stomach surgery (more about that in N). I had one last year to re-check how the repair was holding, as well as colonoscopy (same thing, different end). And I had a micro-fiberoptic endoscopic examination (say that three times fast) for a look in my sinuses.

Thankfully, no pictures will be shared from that, tho they do exist.

… insomnia

I am suffering insomnia right at this very moment as I type. It’s Thursday, April 14, 2016, at 4:55am EST. And I haven’t.been.to.sleep.yet.

Insomnia is a chronic condition where you canNOT fall asleep. If Mr. Google is to be believed, about 3 million Americans have it.

I have pretty much had it my whole entire life, but I especially remember having it in high school, where I would lay in bed for hours trying to get to sleep so I could, you know, function at school the next day.

And it sadly, has NOT gone away.

And yes, I’ve tried everything. And then some.

And yes, everyone has times when they have trouble sleeping, either getting there, or staying there. But chronic insomnia sufferers have it much, much worse.

My writer friend Andrew Butters also suffers from insomnia, and he wrote about it quite eloquently in this most excellent post for Stigma Fighters. Go read it. I’ll wait.

… insults

Being a member of the #InvisibleIllness tribe, you get insulted a lot. And yes, it’s inadvertent. And yes, the people doing the insulting mean well when they say the things they do. But they hurt, still the same.

The biggest ‘insulters’ are actually doctors. So many times, they dismiss you. They act like you’re wasting their time. They don’t listen. They throw a pill (or three) at you and shove you out the door. If it doesn’t show up in a blood test, they tell you you’re fine. (And again, there is NO blood test for many autoimmune diseases.)

I’ve had several health issues gone undiagnosed and ignored by the medical community.

One of these issues was with my uterus. (If you’re squeamish, you might want to look away… this is gonna be a teeny bit gross. In parts.)

I had horrible, and I do mean horrible periods my whole life. Cramping, giant, disgusting blood clots falling out of me, etc. One doctor, when I was very young, suggested that I try to pull my hip ribs apart to give my uterus more room. (Surprise! Didn’t work!)

One doctor put me on the pill to stop you having periods every month, which resulted in 19-days of blood pouring out of my vagina. And when I asked what I should do about it, I was told “You can stop taking that pill. If you want.” Erm, what?

No one seemed really concerned with my symptoms. Til I was 40, and I finally found a doctor who was willing to give me a hysterectomy, even tho I’d not <start sarcasm> had a child as God intended every woman to do </end sarcasm>.

Turns out, after they yanked that sucker out and did biopsies, not only did I have fibroids, I also had endometriosis, adenomyosis, and scar tissue, probably from all of the above.

And again, doctors didn’t listen to me.

Other insults come, like I said, from well-meaning people.

My very least favorite is “You are too young to” … “be this sick”… “be sick at all”… “have all these problems”… etc.

So, what they’re saying is that it’s okay for the elderly to have these conditions? That I’m perhaps making it up? Cuz yeah, no matter my age, I do have these conditions. I am sick. Telling me I’m too young is not comforting. At. All.

… identity

I know, this I post has gotten super-long (not quite, but almost, my longest yet in this challenge), but I still want to talk about identity.

First of all, it’s very difficult to remember, but I am NOT my illnesses. I am NOT just a bag of defects. I am more. I am more.

Yet.

Yet.

Who am I?

I am an artist who doesn’t create (much). A painter who doesn’t paint. A crocheter who is afraid to crochet because of the state of her hands. I am a teacher who doesn’t teach. A marketing guru who does nothing of the sort anymore. An editor who rarely gets to edit. A writer… wait. I’m doing that now. :) A singer who no longer has a band. A terrible friend who isn’t there for people. A giver who can’t give anymore. A photographer who doesn’t shoot because it hurts. A boss with no employees. Someone who did the right thing all her life as regards to money who is now broke and living on credit cards. Someone who has been told, repeatedly, that she is very talented, yet she can’t do any of those things. A reader who can’t concentrate.

So, who am I? I ask myself, besides an #InvisibleIllness suffererererer.

I’m still passionate, compassionate, organized, witty, goofy, a survivor, wife, mama to three fur-babies and one turtle, daughter, daughter-in-law, niece, aunt, friend (when I can be), reader (as I can), Amazon reviewer, twitter, blogger (duh)… (that’s all I can think of at the moment.)

And, in a moment of serendipity, one of my fellow warriors just posted this on Facebook, so I’ll post it here, to remind me:

illness-warrior

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #AtoZchallenge2016, #dSavannahDefects, age, artist, author, depression, dreams, family, giving to others, hard work, health, history, illness, insomnia, memory. Bookmark the permalink.

11 Responses to #dSavannahDefects – I is for… (pt 2)

  1. Elaine LeDoux says:

    Wow! Please don’t take this the wrong way…you have the most amazing family photos! Girl, you have been through way too much! You are so ready to live healthy and pain free!❤️

  2. So much of this posts resonates with me. I know I’m a terrible patient, but most of the doctors I’ve had to spend time with are terrible doctors, so maybe we deserve each other.

    @mirymom1 from
    Balancing Act

  3. Pamela says:

    So much of this post feels like you were looking inside my head. The insult (not meant as one) that I hate is when people think I’m fine because I’m at work, functioning, and trying to enjoy the days I feel really well.
    My favourite quote that helps me is: “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
    ― Mary Anne Radmacher

  4. patgarcia says:

    You don’t ever have to apologize for being sick. My grandmother used to say when she was living, saved for the grace of God, that could have been me, whenever she saw someone that was worse off than she was. So don’t feel sorry for yourself and don’t apologize.
    Do what you can when you can and I hope and pray that some of your hours in the day will bring a smile to your face and lighten your load.

    Visiting from the A to Z Blog Challenge.

    Shalom,
    Patricia @ EverythingMustChange

    • dSavannah dSavannah says:

      Hi Patricia – thanks for stopping by again. I look forward to catching up on the story on your blog.

      I am trying not to feel sorry for myself, or blame myself, but that’s a lesson I must continually learn.

  5. A doctor suggested that you pull your hip ribs apart to give the uterus more room. Huh? *dumb look on face*
    So how many other patients had he suggested this to? How many times did it work before? You were the first?
    He was probably just grasping at straws…trying to find a solution…SOMETHING that would work…poor man.

    I think you are a strong and amazing woman. A warrior. A fighter. A survivor.
    God bless you as you walk this amazing journey that you are sharing with us, but that only you can truly understand.
    Writer In Transit

    • dSavannah dSavannah says:

      Yeah. That. And yes, true story. I have no idea how many other patients he suggested that to. That was when we lived on St. Thomas, USVI, and didn’t have many options for health care.

      Thank you so much for your very kind words. I appreciate them, more than you can know. <3

  6. Betsy says:

    Looks like the “i”s have it. HA! You are also a BT!

Whatcha think? Tell me, tell me!