Sneaky Sneaky!

It’s been a busy few weeks! High stress ups and downs, good and bad! Changes in weather! Mass change in physical activity. Just a lot more of everything and my body isn’t used to it. Ps- add in the diet change of junk food on vacation…

I should have expected it, maybe I kind of expected it but forgot about it.

Today I didn’t feel good at all and got progressively worse. I updosed due to the pain, I thought was a fibro flare from all of the activity, and heck it might have started that way, a flare I mean.

I hadn’t ate anything all day and couldn’t get up to fix dinner so hubby got us take out- yea more junk- but I didn’t feel like cooking.

After eating I get sick and stumble for the bathroom like I do after every meal. It usually stops there. A mass explosion of my stomach contents then I’m better.

That wasn’t the case tonight, I got shaky, continued getting sick, confusion set in. I popped a stress dose of meds between trips to the bathroom. I knew this wasn’t good.

Luckily, I caught it before it went crisis. Although I’m not sure how because I wasn’t watching for Cortisol symptoms. Why? Because I wasn’t stressed out, no new injury, just another day in the life of a chronic hot mess.

Sneaky sneaky is what Addison’s Disease is.

Without warning my cortisol levels dropped. Or maybe I had been experiencing the warnings all day but blamed other illnesses for the pain and brain fog, the speech problems, the need to sleep all day. I should have recognized the symptoms, but I wasn’t paying attention to how AI symptoms feel different from the others.

My point of this post is 1. To pay attention to the symptoms. And 2. Things can get bad quickly.

So that’s all I have. It was all much scarier in person than it reads in this post, but trust me, it could get so bad so quick and without much warning. Pay attention.

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Shoe Shopping~ Randomness

So many of my friends love shoes, shoe shopping, all things shoes!

Not me!

I hate it!

On vacation and forgot my walking shoes, I tried making it the week without them. Tried. To much pain and now the humidity is increasing. So my amazing and supportive hubby took me to get some.

First let me tell you…

I was to sick to eat breakfast. Was touring a Wildlife safari during the 2:30 med time and didn’t want to take a 3rd dose on an empty stomach… by 3:00pm I hadn’t ate yet, was late for meds, hadn’t had a nap, been up since 6:30am, was hot… you get the picture…

let’s go shoe shopping!

I was actually excited because I kept hearing rave review about a couple different pairs that are said to help with pain-yada-yada!

Excitedly I pick the one I want. Try them on. Oh so soft. Then I walk… my heels nearly come out of the shoe. I try to convince myself they will work. These will not work.

I try on the other brand… (Repeat the above paragraph!) These will not work.

I try on a few others.

  • To tight
  • To narrow
  • Not my size
  • Ugly
  • Tight spots
  • Hard to get on
  • No room to swell

The shoes were piling up. I was getting tired. Depressed.

I have wide feet and wear a size 11, not easy to find. But add in I need a taller heel coverage so my feet stay in them. I need the extra padding. I need easy to get on. You know the story.

Finally, I’m angry, near tears! I want to leave barefoot- I don’t even want to wear the ones I wore into the store. I want to leave.

Hubby suggested (not the first time) that I try a men’s shoe. In a fit I agreed.

They fit. Comfortably.

I wanted white. They didn’t have white! I wanted girly! I wanted feminine.

I got navy blue.

Then socks. I wanted girly. I wanted feminine.

We searched and searched (even hungrier, even more tired, even lower on medication) for cute girly LARGE socks.

I got men’s gray.

By this point I am mad! Frustrated. We purchased the shoes and socks. I pushed the “Boys shit” (men’s socks and shoes) into the back seat, ranting about I’m not worthy to be a woman, I’m to fat, I’m to this, I’m to that…

a full blown fit.

I don’t want those stupid boys shoes.

Real grown up right.

Finally at 4:30pm we went to dinner, I took my meds, a couple hours later I kick the lid off the shoe box and stare at them. My heart is broke because I wanted to be a “normal woman” and feminine. I wanted to not need special shoes.

I put on one of those stupid socks.

I slid my foot into one of those stupid shoes.

Aweeeee.

I love these shoes! My feet love these shoes!

But…

Medicated or not. Tired or not. Hungry or not.

I do not like shoe shopping.

I do not like shoe shopping here or there.

I do not like shoe shopping anywhere.

I do not care if my feet are bare, I will not like shoe shopping.

So what did I get? Men’s Nike Free RN Flyknit 2018. They are light weight, the material Hugs my heels so they don’t slip out, the padding is pretty good, they aren’t tight anywhere.

They forget…

Forgotten, you’d think I’d be used to this feeling; the aloneness, the out of sight out of mind, feeling of being forgotten.

I think I did get used to the version of forgot that my life had became when I was housebound. But I’m not housebound now.

Now I am able to go to the store, the pharmacy, book club. Now I am able to do light house work and keep it fairly clean. Now I am able to do the things I love doing.

BUT…

But I am still a chronic-hot-mess. I still have days (like today) when I cannot get out of bed, cannot lift my own head, cannot speak in complete sentences. I still have down days.

They forget.

They only see tiny glimpses of a post or a text, maybe even a 3 minute phone call, they may see a bit of me in person before the drift off to sleep, but in their own world they don’t really see me.

So they forget.

They forget my pain won’t go away. They forget my fatigue won’t go away. They forget I’m still sensitive to stress. They forget I can’t handle heat or cold. They forget I have triggers like loud places and lots of people. They forget I am not well. They forget I am Chronic. They forget every day is a battle. They forget that because I am out of bed it doe not mean I am cured.

They forget.

They forget.

They forget.

I stayed in that bed for years, forgotten and alone most of the time. I wasn’t expecting to find a new version of FORGOTTEN.

A video about AI

No I didn’t create the video, but I am thankful to whoever did!

It’s a good watch for friends and family!

It’s a good share in case you or someone you know could be one of the undiagnosed.

Testing for AI is simple! I will never understand why it isn’t more common. Especially when there are existing conditions that could be the cause.

Here is the video.

Awareness is part of the battle.

Paramedic Introduction #1

So last night I got pretty riled up about a controversial subject! I am going to talk about it here, now, but I want to make one thing very clear… I do NOT value one life over another! Don’t make this into that! We all have our histories and reasons for being one way or the other on this. So again I DO NOT VALUE ONE OVER ANOTHER!!!

With that said. It has recently been announced that our local law enforcement/ paramedics are now able to carry and administer the life saving drug that neutralizes a drug overdose (for free to the patient!)

But did you know that most ambulances across the US (world maybe) cannot administer or carry SoluCortef, the life saving drug that I would need in an adrenal crisis and it most certainly would not be free?

Did you know that paramedics in some places (here for sure) cannot administer a life saving epi pen injection to a 4 year old having a reaction to peanuts.

I don’t know the diabetic rules but I am getting the impression it’s the same.

And this pisses me off in the worst way!!!

They cannot even administer my own injection to save my life.

I did not ask for this disease! I suffer daily! I pack around this Emergency kit to save my life! I wear the medical alert bracelet! I limit my activities! I am doing all I can to NOT die! And I cannot be helped in an emergency.

What kind of world is this? Seriously!!!

Emotional rationality is going to get me nowhere, so I’ve been asking questions and did find out about an organization Danny’s Dose that I plan to do something to help.

I also went to the local fire station today! Long story short; 6 curious paramedics asked a lot of questions but in the end didn’t know if or what they could or couldn’t do. So they sent me to the Main Station to talk with “the man with the answers,” who was also curious and took notes but again didn’t know the answers I need. But. A meeting is happening Mid month and this topic is now on that agenda.

In addition, my address has now been flagged as a priority with instructions. So that’s good.

I am not letting this sleep. I am learning of so many rare conditions and people who could have been helped had the paramedics been allowed to assist them, I am going to do something to help.

So today was Paramedic Introduction #1.

Oh. And we talked about ID bracelets, yes they notice and read them. But the ones on the fit bit just look like part of a watch and they would never have looked twice. Good thing I wear both! I also have a tag on the outside of my purse directing them to the pocket where my injection is, they like that.

I’ve been lucky to not need the use of the paramedics due to an adrenal crisis, but if I ever do I hope they are allowed to do what is needed to be done to save me. A simple injection! That I provide. That is far from FREE! Prescribed by my doctor.

DO NOT GIVE UP HOPE!!!

So today was my three month appointment with the dr, I made it 3 months without going in! Guess what? My next appointment is in October- October! That’s 4 months! FOUR!!! I’m moving up!!!

Yesterday on my Facebook I posted hopes of nothing new, that wish was granted (thankfully!)

But…

Of course there is a but…

My labs still show to high of a white cell count, we don’t know why, it’s been like that on and off for as long as I remember. If it’s still like that in October he is sending me to a specialist.

I proudly announced I am down to one soda a day he irritatedly announced that today is zero from now on!

I proudly announced that I am eating way better and he retorted with I still eat to many carbs… Is Keto my new diet? Close enough.

He felt my elbows that I keep having trouble with, a strange tendinitis! Confused how I could possibly have that considering my activity.

And cortisol… cortisol cortisol cortisol. Still low! But as long as I am non-symptomatic I can continue on this dose. But (yes there’s a but) the low cortisol headache was obvious to him before I even mentioned it so… I need to updose today and remember to updose on good stress days too! Yes, yesterday was a good day, I launched my first blog talk radio talk show “Intuitive Insight with Jody” and the high energy continued all day!

REMEMBER TO UPDOSE EVEN ON “GOOD” STRESS DAYS!!!

If we cannot get my numbers to change for the better then alternative methods may have to be used!

But I have never went into full blown crisis!

Well do you want to keep testing your luck?

NOPE!!!

*by the way, the day we tested my cortisol wasn’t even a low day. So I will stop pushing my luck.

Otherwise… I am doing better than I have done in years!!! I already knew that!!!

My message today to all of my fellow spoonies;

Don’t give up! Never stop fighting. It may feel sometimes, like you cannot go on, like it’s not worth it, that there is no point in life like it is-DO NOT GIVE UP! Have hope! Have faith in better days to come. We might never be “cured,” but there are days worth fighting for. You do have a purpose beyond the pain- I promise you that.

Sending heaps of cosmic love!

My Crazy Life~

Yep that about sums it up for me since I last posted. MY CRAZY LIFE!

I’ve had down days and up days and over-done-it days. I’ve been all over the board…

But for a very good reason! My son and his wife gave birth (33 hours of labor) to their first baby, my first grand daughter. She is perfect and precious, she did have a tough transition to this bonkers world of ours and spent almost the first week of her life in the NICU (intensive care for babies) but she is home and doing good now.

But oh boy did it flare me!

Good news #2: I made it 3 full months without at doctor visit, ER or office!!! I did have 2 calls in the last 3 months but didn’t need to go in!!! So today was lab work and next week is the doctor visit and to go over labs.

So let’s talk blood draws… Today’s was fasting, I always am fasting for blood work just in case they forget to tell me to. But the hard part, and I forget how hard it is every time, is going without my hydrocortisone from midnight till blood draw (usually at 8am.) OMG it’s miserable!!! The low cortisol symptoms and the near delirium I go into… Hubby cautiously finds me amusing when I am loopy like this.

Low cortisol symptoms will kick my rear end for the whole rest of the day. So today instead of doing anything, I am laying in bed doing nothing. Self induced down day is what a lad day is. Grrrr.

So add in the flares of granddaughter arrival, the rain pains of fluctuations in weather, and a lab day and it spells My crazy life! Wrapped with a pain filled bow.

I hope you are all doing well and finding something in this day to be happy about.