Posts Tagged ‘autoimmune’

makenicethingsI could easily admit Sjogren’s Syndrome when I was diagnosed. I was scared, but I could easily say that yes, I have it. And Fibromyalgia didn’t scare or surprise me, mainly just irritates me.
The new specialist I’ve been seeing about my ovaries diagnosed me with Polycystic Ovarian Syndrome. It’s not something I scream from the rooftop, but I can still admit it.
But I can’t deny the one disease, of all diseases, I have dreaded being told I have. Because Thursday, it snuck up on me, in blood work I never imagined it appearing on. Diabetes.
Mind you, I have not been a diabetic. I have my blood drawn and checked a bizarre amount. I just had it checked right before my dental stuff. But there it was, plain as day, looking back at me. And when the nephrologist that had drawn the labs called me, I hoped he would say it was a fluke. But nope. It’s all mine. A new diagnosis.
And I don’t like it.
I literally fought the diagnosis, denying that it could honestly be happening. But today, I can’t deny it anymore. I started to feel horrible at work, and sure enough, when we checked my blood sugar, it was elevated. Very elevated.
The best guess anyone has as to why I have had normal blood sugars, and now not normal blood sugars, is a combination of horrible genes and my last steroid treatment being such a high dose so many times a day, that it pretty much caused a steroid induced diabetes.
Basically: The medicine to help the rest of me not be sick, woke up another sickness. (Which, I must say, is bullshit. Stupid body.)

But, why am I throwing all this out there? Because I am ashamed. And I shouldn’t be. I don’t want to be. I’m posting this because I need love and support to get me through it, and I won’t have any of that if I pretend I don’t have it.

Diabetes is a disease that, in both Type 1 and Type 2, is frequently misconstrued by the media and society in general as something to be embarrassed of. People suddenly think it gives them a license to be an asshole to you, because you obviously “did it to yourself.”

Diabetes is an autoimmune disease. So, why don’t I want to treat it like Sjogren’s, where I can just as easily say that I have Diabetes as I do with Sjogrens?

I don’t want to perpetuate this idea that I need to be ashamed.

And I am going to fight like hell to turn this mess around, not so people don’t judge me: but so that I can live this fabulous, adventurous life I have dreamed of.

 

~Angel

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Fun fact: I just realized Wednesday night I have A LOT more medical debt than I actually was aware of. So just as I figured out a game plan to get my life all situated and ready for progress, I’m hit with the cold truth I have three times as much four-digit debt than I assumed.

And you know what?

mattsmith4

That being said….

I’m still working on getting it all paid down or off, so that I can move forward. I would love to have my own home in the next year or two, but financial circumstances keep getting me into weird messes. And even though I have no plans to quit my job right now, things are getting pretty rough here, and I can’t even promise they’ll keep me if push comes to shove.

So, what will I do about all this mess?

The answer: The very best I can.

I will continue to live and travel and plan and make myself happy now. Because you know what? I need to be happy NOW. I can’t be guaranteed that there will be a tomorrow if I don’t take care of myself today. My body freaks out under stress now, something I used to handle A LOT better pre-Sjogren’s flare-of-doom in 2012. But now I am constantly reminded: Cut back on some stress, or it will only continue to get worse. My body has made this point to me, too.

KIDNEYS

Yet, stress keeps building: bad news, big news, dread, debt, work, health, everything.

Last night and today have been particularly rough, and I want nothing more than to go curl up in bed. But duty calls, and I must do that which must be done before I can focus on my body.

And while I do have some good news to share, that will come with the next post.

~Angel

aconstantbattleThere is nothing we can do to stop the progression. We can only monitor the progress and manage the symptoms as best we can to make you comfortable.

I’ve known this. I thought I even came to accept this. But at the follow up, I came to realize my reporting of everything going on became almost a plea with the rheumatologist to just fix it and make it ok, because I don’t want to deal with this every day for the rest of my life.

Yet, she gave me that sad look of “I’m sorry, I can’t help you.” And I know this. I understand this.

I know. I knew it then. I’ve known it for a while.

But for some reason, I left feeling so brokenhearted, so lost. Getting my blood work back Wednesday didn’t help how I felt about it all, either.

There are many, many worse things that I could be going through. I don’t doubt many people are tired of me and everything going on health wise. But you don’t really understand until you’re the one sitting there while a stranger is telling you that you are going to be battling the rest of your life with your own body, and it’s going to dramatically change your life. It’s scary. It’s unreal. It’s certainly a hard concept to take it. You can’t just take some medicines or have a surgery or anything and make it fade into a distant memory. It’s here for the long haul.

People forget too easily that we are all mortal, we all have weaknesses, and we all get scared sometimes. We will all die someday.

And here I sit, an ache still eating through my chest, because I still don’t understand how to cope yet, even though I pretend I do.

There’s hope that with a little less stress on me when my 90 days at work are up, I can give my body a chance to strengthen some, and maybe slow the progression naturally.

not just survive Because I am exhausted all the time. And sore. And miserable. My eyes burn and I feel like I haven’t tasted water in a century, even if I’ve just downed two bottles of water. I’m in this terrifying fog that I get lost in, and I’m scared I’ll forget how to get back out of it. I want my energy back. I don’t want to worry about my organs. I don’t want liver damage when I’ve purposely avoiding drinking alcohol. It isn’t fair. (Yes, I’ve fallen back into the ‘Why me?!’ crap, I’ll be over it soon.)

Truth be told, I want my life back. I want me back. And I’m working at it, I’m getting scraps of myself back. Sometimes it’s vague or fades quickly, but sometimes I get chunks that last longer. Like, I think my writer-ly brain is starting to wake up again. It’s about damn time.

Speaking of – you remember the craft analysis that I was worried about? For my Creative Nonfiction class? Totally got a perfect score on it – 100/100 points. She even wants me to email it to her as a reference for future classes as an example. 😀 But back to the point…

Basically, this is going to be a constant battle, one that I won’t always be willing to fight. I have to, however. Partially because I’m stubborn. Mostly because of the people that need me. So it’s time that I write like a good little writer and try to make something of myself. At least then I’ll feel like I’m worth something again.

Until next time, when we will have a much lighter subject matter-

~Angel

“I’ll be dead before the day is gone.”

deadbeforethedayisgone

Taken in my field earlier.

Stress is a happy little erosion eating every single bit of happiness from my life. I lose sight of everything because I can’t get a grip on anything, and before I know it, life is spiraling out of my control. It’s crunch time. I don’t need this right now. And it never fails – one step forward, ten steps back. Get something handled or some good news, only to have it all followed up by a series of bad. No matter how hard I try to keep moving forward, I get kicked in the teeth and knocked on my ass.

I am tired.

After my surprise (and somewhat miserable failure) going away party for Skylar, when I was pulling into my driveway, I stopped in the field and got out of the car. Because I’m stressed, and sick, and exhausted, and honestly.. I’m just not sure what to do anymore.

And there it is. The forest. The field. The sunset. Calling me. Some desperate begging from the earth to just go. Leave. Forget everything and explore.

Obviously, I didn’t run off on some grand adventure. But I did walk around for a few minutes, taking in the quiet and letting myself calm down. I don’t feeling one-hundred percent better, but I’m not having a panic attack at least.

And it’s peaceful in the deep
Cathedral where you cannot breathe
No need to pray, no need to speak
Now I am under all

And it’s breaking over me
A thousand miles down to the sea bed
Found the place to rest my head
Never let me go

I really could use that vacation right now. Is it the 17th yet? Because I’d greatly like to not be Angel for a little while. Oh well. Until later,

~Angel

Each way I turn, I know I’ll always try
To break this circle that’s been placed around me
From time to time, I find I’ve lost some need
That was urgent to myself, I do believe

Life is weird. I say this a lot, actually. Sometimes because my life is being weird, sometimes because the whole world is going insane around me, and sometimes as just a gentle fact. But here it is, staring me dead in the eye, being all weird and whatnot, saying “Behold my grand symphony of destruction and creation.” I’m just supposed to sit back and survive the ride, but I’d like to actually enjoy said ride. Even if it’s crazy. Even if I think I might die with every twist and turn. I need to grit my teeth and hold on and try to enjoy it.

Tonight I think I’ll walk alone
I’ll find my soul as I go home

So, one of my very best friends – Skylar – is about to leave for the army, and it’s eating me up inside. I know she’ll be back. I know it’s for the best, and I’m so proud of her for being so brave and jumping out there int0 this great wide world. But it doesn’t change the ache in my chest, and it certainly doesn’t change how much I’m going to miss her. She leaves the day before Brittaney and I head to Orlando. Then, while we are in Orlando, the anniversary of Eric’s death will roll around. It’s going to be the first time I haven’t spent the 23rd of June at the cemetery, and I’m somewhat terrified. I guess a part of me is worried he’ll be let down. I know I’m worried about how I will handle it when the day actually comes. But I know that if I stayed here, dealing with Skylar leaving, Eric’s anniversary, and the approach of Whitney’s birthday… I couldn’t handle it. Not this year. Not right now. So I need to be away. Fate gave me an opportunity and I took it. Even though there is peace when I’m alone at the graveyard with him, I know that someday I will have to leave the land of the dead and learn to hold myself up as one of the living.

Something that helps me rejoin the land of the living: Going to the zoo with my maniac friends. Hell, adventures with them in general is just.. Yeah ❤

ZOONINJASCREEPSHOW

I failed miserably at finishing my manuscript in time for my self set deadline (well, I wasn’t off by too much until work got in the way), which is why I haven’t posted really for some time. I was trying my hardest to make sure I accomplished that. But, things happen. I’ll get it done. But first, I need to finish my photo shoots with Little Red – aka Skylar – before she leaves.

Plus, I’m learning to deal with the Mysterious Sickness of Doom — erm, my bad — Sjogren’s. But explaining that is a post all it’s own.

“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important.” — Steve Jobs

Anyway, that’s all for tonight. I shall post more hopefully this week.

~Angel