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.

Advertisements

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.

Re-Align Your Dreams~

When I first got “sick” this most recent time I thought it was the end for me, I wanted it to be the end for me. I didn’t want to live the rest of my life bed bound with no purpose. I slipped into give up mode. I couldn’t see me beyond my illness! I let it consume me!

I think it was a HUGE mix of things that woke me up but what I remember most is the following: I knew of a few people, suffering illnesses, giving up like I did. But standing on the outside I could see their world in a wider scope! Like them giving up on working; I could see so many potential jobs that they could do but because they couldn’t see beyond their illness they had given up. I remember being envious because if I were in their shoes I’d try _____ just to stay working. But in my eyes they weren’t even trying and it was so sad to see them give up.

Then…

One day I was laying in bed wondering if I had given up so easily too. What else could I do? What could have I tried? What should I try? People much more “disabled” than me were doing out of the box things to give them purpose, earning a living, having a life… what if…

And then the ideas came pouring in. Suddenly life purposes started popping up all around me like flowers in spring.

When we are in pain 24/7 it’s hard, nearly impossible, to see ourselves able to do anything but lay in bed and suffer. I know, I’ve been there. Our dreams and goals have been ripped from us and we feel as if nothing is left. But what if…

just imagine for a minute…

Our illness was a course corrector, like a U-turn or sharp corner, it stops us, it forces us to see a side of ourselves we would never have seen, it makes us dig deep into ourselves, it realigns us with our true self. It forces us to just be. Then an awakening happens, we re-evaluate ourselves and find new purpose, a purpose we never would have found.

We are chronic, I know this! I know I will never be cured. But by really looking I have been able to re-align my dreams, I have purpose. No, the pain doesn’t stop. No, I am not reliable because down days and naps and appointments still pop in. But I am learning (or trying to) flexibility and acceptance that I am doing the best I can and the world will have to be okay with that.

Anyway. Yesterday on the Mighty they posted this article that I wanted to share with y’all! Take a look here.

Find new purpose! Kindle new passion. Find your purpose, because I promise you do have purpose.

Sending you love.

With the Good Days~

With the good days the bad days seem so much worse.

When I get used to good days and a bad day pops in for a visit it sure makes me wonder how I endured years worth of bad days.

I woke up this morning and every bone in my left foot feels broken, my left elbow is still trying to dislocate, my back is a constant spasm, the pain today is high. This is very little compared to what was my bad days, but oh it seems so bad.

Rain is coming, my body feels so much more sensitive to it now. I know that’s not the case, the rain pains just stand out more now with having so many good days.

Don’t get me wrong, I’m thankful for the good days! I’m keeping them! Maybe a good way to describe it is red paint splashed on a red canvas isn’t that noticeable, but red paint on a white canvas stands out. The paint is the same in both scenarios, the contrast is what’s different.

And it is hard to adjust to.

Just my randomness for this Thursday morning!