Medication Organization + Brain Fog=

Medication Organization + Brain Fog=

I don’t even know!

Organizing my meds is an all day thing on a good day, add brain fog and well.

I don’t even know.

It’s a good thing my tongue recognizes and counts meds as they go into my mouth because some weeks I have terrible brain fog and have to wonder how I even survived that week. Not enough of some meds, none of others, a whole weeks worth in one day sometimes, and other times it’s just indescribable! One time I didn’t even recognize the medication that I had in one days slot!

Yet once a week (usually Tuesdays) I sit down at the table with my box of “extras” (the replacement stock for when I run out,) the bag of daily meds, the empty organizers for morning (green=good morning,) bed time (pink for PM,) daytime (the big one,) and on the go (black leather with colored mini organizers.) Once a month or after a seriously stressful time I pull out the Emergency (pink leather looking & Blue injection kit) kits and reorganize those too, which I have to do today after last weeks stuff!

Anyway, I sit down at the table and start refilling by time medication is taken. By the time I am starting the 3rd dose of the day, after counting and cutting, my neck, back, and shoulders hurt so bad I can no longer sit! I write on a sticky note where I need to start again. I get up and lay down for a bit, sometimes 15 minutes sometimes 2 hours!

Then I’m back at the table; mid morning, lunch, and mid afternoon doses cut and counted. Rest time again.

Whose idea is this anyway? If I didn’t have to have “special” medications I would order the pre-packed pills!

Back to the table to finish dinner and bedtime organization! Done!

Haha yeah right!

Double check!

Now I’m done!

Till next week and it starts again!

Oh wait, I left out the calling in refills and re-ordering any supplements I’m running low on! Because some of my medications are special I have to call some in directly to the pharmacist and others I use the automated system. I go through supplements fairly quickly so I usually order 3-12 of those bottles per supplement at a time. (Hence the “Extras” box!

It takes hours some days just to refill my weekly organizers! It’s mind numbing and physically painful!

Do any of you have tips or tricks that makes med day easier? Would love to hear suggestions.

*edited to add…

I wrote this during the break for the mid morning pills! I forgot to write the sticky note and it took probably 5 minutes to figure out I had already filled the mid morning slots. I was so confused. Then I ran out of a medication part way through the week so had to make notes of that to fill when I get the medication from the pharmacy. Grrr.

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When What I Can Do Isn’t Enough~

I always start a post with the title, except today, I don’t know what to name this post. It’s 4am and I’m still awake!

The pain is keeping me searching for a comfortable position to no avail. I have to be strong, I have to hide this pain, or at least that’s what I keep telling myself.

Maybe I should start over.

Friday morning, 5:47am and I’m woke up by my phone ringing. My sons name and smiling face lights up my screen. Groggy from only about an hours sleep I answer. He does exactly how we had planned. “Mom you need to triple dose and call me when you are more awake!” Wait! TRIPLE dose? No, the plan is double dose. My sleepy brain shutters awake!

I tell him okay that I’ve taken the triple but am not waiting to hear this news till I wake up- it’ll take 45minutes for this to kick in… BTW- I didn’t triple, I only took my normal early dose!

The news is my husband had just been in a bad accident with a semi-truck.

I TRIPLE DOSED!

The highway my husband and son take to work is known as “Death Highway” I call it the “widow maker!” They take separate vehicles to work and our son doesn’t have to be to work as early, but is almost to the crash scene.

Not thinking, I take a shower! It’s to early, my meds haven’t kicked in, the pain is bad, my Cortisol isn’t ready for this…

My daughter in law knocks at the door, she’s come to sit with me to make sure I’m okay. We wait.

He is okay! The semi pulled out in front of my husband and at 70mph he couldn’t get stopped! He shouldn’t be okay! But he is and I’m thankful. The impact knocked the semi onto its side. My hubby is okay. No widow made today.

I’m still super stress dosing!

Fast forward>>>

He wakes up this morning (Saturday) and is sore but I can barely move. My pain is high and he says he’s not bad at all. Who was in the accident? Who is feeling like they got run over?

Be strong! He’s the one who’s been in the accident so hide my pain! Stuff it away! I have to be strong for him.

I watch him as he moves, the adrenaline wearing off and the pain starting.

I am still stress dosing.

I’m feeling incompetent! My own pain is bursting! I need to be there for him! Hide my pain!

How do I do this? Be there for him when I can barely take care of myself? It’s such a useless feeling! I can’t even pretend I’m okay! I feel like a horrible wife because I am supposed to take care of him, he always takes care of me.

Now what? What do I do when I can’t do much? What happens when what I can do isn’t enough?

I admit it…

The last week I have ate junk. Lots of junk. And I feel worse than usual! My emotions are crashing into a deep dark place yet I am aware that it’s not me that it’s something else. I hate feeling this way and I hate even more that I know I have done this to myself. Again.

Junk is easier to make.

Junk takes less time.

I don’t have the energy to cook most of the time so I eat junk.

I want to eat healthy but the shopping, prep work, cooking, cleaning up…

Then there is the “what’s for dinner?” I don’t have a good relationship with food to start with, then add in that however I answer that question means I have to cook it… nothing ever sounds good. So I end up not eating at all or eating pure crap. The only food that ever sounds good is something salty- fries.

I don’t know how to remedy this nothing sounding good and not having the energy to cook problem so…

I am looking into those meal service places, ya know, the ones that send ya food and it’s already cut and ready. Sent right to the door.

So far I am looking into Hello Fresh and BistroMD.

I’d like to hear your experiences and suggestions.

This is for us!

I tried and tried to figure out how to add this to a comment on another bloggers site and I can’t get it, but I know she will see this! πŸŒˆπŸ˜‰

But as I thought about it, this meme actually fits us all very well! We tell our stories, share them, let them go, we may heal from them and others read them and say “oh me too” with a new strength because they now know they are not alone.

So rather it is chronic illness, domestic violence, whatever, here is to us!

*image from Thug Unicorn by Tanya Markul! You should check her poems out, they are amazing!!! I LOVE HER!

And…

She’s My Best Friend~

For a while now I have hesitated posting this for many reasons, the reason I am posting it now is I started this blog to show the RAW emotions of Chronic Illness, so true to form here I go…

She’s one of my best friends, she’s tough as nails, she’s a go getter, she’s been there for me through the hell of my most recent diagnosis! She’s pushed my wheel chair, she’s drove me around. We’ve had slumber parties at my house when I wasn’t so able to get around. She’s been there.

And now, now she is there.

She is fighting for a diagnosis now, the path we all go down of uncertainty, unfamiliarity, everything the doctor says is contradictory or unclear. She’s got a list of symptoms. She’s not sleeping and the pain is kicking her arse. She is there now.

I recognize each stage she goes through, I’ve been there but I get it; I remember how mad I’d get when people said “be more positive.” I remember how I hated the “well at least it’s not worse/Cancer etc” I remember all of that. What I don’t remember is what did people say or do that helped?

Being there. Letting me vent without advice given.

I remember that there really wasn’t anything anyone could say or do to help me, I needed to go through it all, I needed to find my own peace, nothing or no one could do it for me…

But… She is my best friend and seeing her go through this is breaking my heart! I know the pain she’s in because I’ve been there. And now she is there! She is there now and I want more than anything to pick her up like a game price and move her to the part of the illness where acceptance has introduced her to new happiness.

I don’t want her to go through this!

I’m supposed to be encouraging, but depending on my own mood and feelings toward my “story” is not as encouraging as I want to be. For me, fibro came on 20+ years ago and I thought that was a death sentence of life with unending pain, then a few years ago the CFS, Addison’s, Hashimotos, Hypothyroidism, Myofascial Pain, Plantar Fascitis, the _______ (insert any of the newest diagnosis’s) came along and I realized that the fibro was the least of my worries. Some days it’s so hard not to tell her “oh honey it gets worse. So much worse.” But that might not be how it goes for her, and seriously, that is soooo NOT encouraging.

Add that to…

I am finally teetering on a place of acceptance, where I look back and see the growth I have experienced as a person through this time, even as painful as it was. I like the new me! Yes I’d love to not have these illnesses, but I do have them and am finally living with them instead of against them and life is better. So some days I want to be the “look at the bright side” person, no not the “be more positive” person but the person who says “you are going to love the person you become!”

So who do I be with this person who was a rock for me? The encourager? The realist? The sympathizer? The observer? I don’t know how to or who to be because she is there now! I know she knows I understand, but I also know from my own experience that “no one truly understands because mine is different!”

She’s my best friend…

Another Moment of Memories Made~

Yesterday started with my fibro in a fit and struggling to keep up on my Cortisol, but I survived. I even had a good time!

The Celebration turned out pretty good, lots of memories made which is exactly what I am striving for now a days.

But today as hubby and friends wake up with hangover, I too wake up with a throbbing head and extremely nauseous.

Mistake number one was me staying outside in 45′ temperatures too long, but at the time I didn’t feel too cold. It took hours to even get my skin warm again. The pain from that still lingers today.

Then a “slight” rise in adrenaline just before the end of the party used up any Cortisol I had left but I was so tired I didn’t think to updose. Big mistake.

Today I’ve barely left the bed except to eat a bit and take my meds.

It’s an Addy thing, this killer headache that nearly has me screaming for relief! I didn’t even drink any alcohol yet today I am the sickest.

It doesn’t matter, at least not that I’ve found, what I do to prepare, or how much I try to prepare, I always suffer from a good time.

BUT…

It’s about the memories made! I can still see the smiles through the pain, hear the laughter through my own moans, it is about the memories. Having Addison’s has made me thankful for and eager to make and be apart of memories! Tomorrow is not promised but the memories will carry on.

So even though today is miserable, it is worth it.

Another moment of memories made! πŸ’—πŸ’—πŸ’—

It just pisses me off~

I’ve had a decent couple of days and I should have known what was coming, but I forgot! How did I forget? I’ve been dealing with this for years…

crash, flare, down day— whatever it is IT is pissing me off today. You see today is important because it’s the celebration party for our son and his new bride! Today I am supposed to decorate our house and yard, I have a cake to pick up, luckily (thanks to my amazing hubby) we are picking up a catered dinner! He is so great that way, saving me energy where he can!

With any chronic illness it’s not like we know what tomorrow will bring “Sorry I can’t have the party tomorrow I will be having a down day!” We can’t say that, because we don’t know what tomorrow will bring.

But here it is, tomorrow is now today and I’ve got a killer low Cortisol headache that I can’t get controlled and my back is on fire, and now I’ve got some sort of weird thing where my left hand involuntarily curls the wrong directions and cramps there for agonizing minutes at a time. What the heck is that? Anyway…

My point is that this chronic awesomeness that is my life really pisses me off sometimes!!!