Why Do I Forget to Do This?

I suffer and go on and on, knowing it's low Cortisol that's causing the problem, counting down the minutes to the next med time.


Yet for some stupid reason I always forget!!

Duh- UPDOSE! Updose! Take a bit extra! You know it will help!
What the heck are you waiting for?!!!

I've now updosed, relief from this day is on the way! I'm settling in for a nap!

Advertisements

Rotten! Spoiled! Nasty! Ick!

I'm on the third day of everything tasting rotten, spoiled, and just plain nasty! I think my tastebuds are broken.
Firm, juicy grape- yuck!
Watermelon- yuck!
Coffee with creamer- yuck!
Sour cream- yuck!
Cake- yuck!
Fresh guacamole- yuck!
Tortilla chips- yuck!

This list goes on and on to everything I try to eat. I've thrown out so much food- but I think it's my tastebuds not the food!

What craziness is this?

I'm hungry!
Ick!
Ick!
Ick! 🤢

Days Like Today…I Sure Don’t Feel Strong~


It's days like today, and yesterday, and…
It's days like today, and probably tomorrow, and…
Does it ever end?
Seriously I'm sick of these days!
Yes I have days where I smile, I laugh, I accomplish something.
Yes, some days are better than others.
But it's these days, days like today and…

That make me wonder why, why it has to be like this, why I have to fight so darn hard, why. Why. Why.

That make me wonder what triggered this time; weather, diet, stress, medication, or Nothing at all!

That make me wonder how long will this flare last? How bad will it get? When is my next good day? Am I strong enough to hold on?

BECAUSE I SURE DON'T FEEL THAT STRONG!

Don't worry, I'm not thinking of ending my life! It's just days like today that I question more of my life.


It's just that carrying illness every single day gets heavy sometimes, feels like more than I can continue carrying. I'll pick it back up, I'll continue. I just need to catch my breath again.
For today I scream into the pillow! For today I'll be pissed off.

Yes, to you I may look weak today! To you I may look like a drama queen. But the reality is, it's days like today that I am fighting the hardest.

Days like today.

What You Don’t Know (and probably don’t care enough to learn)~

I was talking with a friend tonight when she said "it's sounds like you are feeling better!" I was stunned, I seriously made a face to my phone that said are you freaking serious? Then I asked her what I had said that makes her think that.

I know that those of us with invisible illnesses get this a lot, "but you don't sound sick" "but you don't look sick" and it's maddening. I'm glad you are relieved that I am doing better based on the sound of my voice, or the posts I post on Facebook, but there is so much that you don't see- hence invisible illness!

You did it see my body convulse with muscle spasms for the first hour of laying down last night!
You didn't hear me cry out in pain, pain that rips me from sleep.
You don't see me fall to the floor because the pain of a misplaced knee bone caught me off guard.
You didn't watch my breath get sucked away simply because I tried to turn over finding a comfortable place to sleep only to be ripped awake again because my Cortisol has gone low and I hurry as best as this body will let me hurry, praying I make it to the toilet before explosive diarrhea or projectile vomiting releases the gut wrenching cramps from my stomach.
As I sit there on the grand thrown my hair gets drenched in sweat, towels of moisture beading from cold skin, my body involuntarily curls and disfigured due to more pain in my stomach.
You don't see this.
I finally stumble back to bed for a bit more sleep.
When morning comes I wake with the worst hangover headache you could imagine, my face is swollen and my eyes are sunken and red! You don't see how I shake, mellow tremors, or how I stumble like a pin ball down the hall.

You don't see the extent of my memory issues, my loss of words and slurred speech are funny to you- you only see a portion, minutes at a time- you don't see the other minutes/hours/days/weeks/years that I struggle for cognitive clarity and intelligence.
You don't see me forget to take this medication or that one and the price I pay for it; rather it's lightning bolts of pain in my head or my stomach on fire, you don't see that.
You don't see me struggle to eat something with those meds when I know anything I eat will make me sick.
You don't see me try to stand in the kitchen for a load of dishes, hunched and knees giving way to the excruciating pain spasms.
You don't see the struggle to stay awake just ten more minutes, you don't see the 3-4hour nap I need. You don't see the depressive insomnia, the nights I doubt my worth for living.
You don't see how a walk to restroom will raise my heart rate and make me nauseous and dizzy.
You don't see me sink to the shower floor or crawl out simply because my body would no longer hold me up.
You don't see how it takes me almost an hour or more to recover from that shower.
You don't see the exhaustion that applying makeup causes!
You don't smell the days I cannot even muster the energy for a shower- again.

I am not telling you this to make you feel sorry for me, I am telling you this because it gets really old that people don't think I am that sick! They think I could do more. I don't know what they think I do or how much they think I should do, but you can bet if I had a casted leg, stitches in my stomach, or loss of hair from chemo they would never expect these things, they would see my ailment and have compassions, patience, love, and understanding.

But mine cannot be seen so it is insignificant.

I push myself harder than you could ever push me, your comments indicating I am okay or okay "enough," hurt- they cut like a knife, because I assure that I am already pushing just to do what I do.

Some days I wish you could feel what I feel, not so you will suffer but so you will understand, so you will be more compassionate and less judgmental.

I'll end this post, this rant, because I know those that most need to know this, will not read it anyway. But it did feel good to rant it out!!!

Ps- tonight you don't see the 7month pregnant looking swollen belly I am resting my hands and phone on…

Celebrating Life! Celebrating Me!

I know some of you are already shaking your heads about this post, go ahead and shake it right on outta here if your head shake is disrespecting.

Having a chronic illness can make birthdays both a blessing and a curse; a blessing because whoohooo I survived another year! And a curse because now I am getting older and those pain will add to the how much longer must I suffer like this?!

So many with illnesses/diseases just like mine are not gifted another birthday, their family doesn't have next year to plan for. Birthdays become reminders of sadness and loss.

I'm turning 41 in a few days, another year I didn't expect to love to see.

I look back at my 40th year and am in awe! My health was not good- as always, but I have grown more emotionally in the last year, I am stronger and happier with my self than in all of the previous years combined. I guess that's another blessing with illness, you basically loose all of who you were and get to soul search for who you really are.

I have no idea what the next year will bring, but I know I am brining one hell of a fight plan along. I will see another birthday! These illnesses will not win!

So yes? I will celebrate life, celebrate ME for not only the rest of my birth month, but every day of every month, because I am worth it.

So to me, to you, to all of us surviving chronic illness; HAPPY BIRTHDAY TO YOUR BADASS SELF!!! 🎉🎉🎉

Can someone please tell me…

Being as sick as I am, as Often as I am, I know my body very well! I usually know what pains belong to which Disease and what triggers those pains. But every now and then…

A few days ago my left knee felt like it went out, I could walk on it, any pressure or bending it would double me over in pain. Then the next morning the pain is gone! Not even sore.

Then on the right side my ribs felt like they too were out of place! Turning, raising my arms, breaths- it all hurt! I couldn't even get myself undressed that night.

Last night before bed my right hip did the same thing, only the pain was still there this morning just to disappear this afternoon.

Yes, I am very aware of how fibro moves around! And yes this may be some new intense fibro symptom that in 20+ years I have never experienced. But it just doesn't feel like fibro.

So far everything fixes itself eventually, if I lay down and just relax it (or I think that's what's fixing it!) but it's weird…

So, can someone please tell me if this sounds familiar, what it sounds like, what I can do to stop it! My other illnesses are debilitating enough, I don't need whatever this is.

The Effort is Exhausting~

Some days I just sleep, I sleep all of the time. Other days The pain just takes over, leaving me in bed but somewhat mentally functional- those days are the worst!

The worst days mean I hurt to much to move but my brain is awake, it wants to do stuff, it thinks to much, it gets angry and depressed. I just lay there, not moving, it hurts to bad to move, yet sleep eludes me. I wish sleep would come so my thinking would stop.

I try to keep busy with TV, reading, blogging, astrology stuff, but it's hard to concentrate when the pain is this high. So I just lay here, more thinking, more praying for sleep that won't come.

The effort of staying positive is exhausting! The effort of not sinking into a river of self pity is exhausting! I paddle for a while look I finished a blog post, see here is today's astrology report, the feeling of accomplishing something is amazing, but the effort it took is exhausting.

Then the guilt overloads the sense of accomplishment I should have spent more time on that post, I should have added the Oracle readings, I should be cooking dinner- I forgot the potatoes in the roast. Then poof, right back to the river of self pity.

Yet I try! I try to keep paddling!
Oh but the effort is exhausting.