More than difference of opinion~

Today I had a conversation, I say that lightly because it gets me riled up to think of the ignorance and dangers involved, but I had this conversation.

This is Adrenal Insufficiency related! I will not argue here so let’s just clear that up.

First, the title of the post was something about Adrenal Fatigue. Yes deep sigh to my fellow AI spoonies. I’ve already argued the Medically diagnosable credibility of “Adrenal fatigue.” so I let that slide through although irritated. But I did comment about the need to get the 8am cortisol test.

I told them about how much my quality of life has improved since my diagnosis and getting on the right dosage…

Here is the start of this post!

I am on hydrocortisone! It is a corticosteroid! It is not a choice to be on steroids! I will die without them. I am all for Naturopathic Healing but that will NOT replace steroids. Yes I know steroids are bad when taken long term, but I am replacing what my body does not make. Yes, Osteoporosis can be diagnosed (ps, I was diagnosed with Osteoporosis before I ever started steroid treatment.)

I was told it’s okay for us us to have a “difference of opinion.” about this subject.

Well, it is not okay! It is not simply a difference of opinion. It is dangerous to believe that a blood test isn’t important when Adrenal Issues are suspected. It is dangerous to not take steroids and instead do the naturopathic thing to “rebuild” the adrenals.

I know it’s about awareness, but sometimes it gets so frustrating to see people believing such dangerous ideas and thoughts. It can cost a life.

What if I was new to AI and believed this person about a vitamin that could replace my steroids? What if I tried that?

I was that person who went to see the naturopath for my symptoms. She told me I had Adrenal fatigue and to take this supplement, which I did, and my health continued to deteriorate. More than a year later, symptoms having me bed ridden and praying for my life to slip away during my sleep, I found the doctor who was livid I hadn’t been tested sooner.

I am not bad mouthing the doctor, naturopath, nurses, or anyone for their lack of knowledge on this topic. I am however, badmouthing their lack of interest to learn the truth. Why do these people who do not live with AI, try to tell us how to live (or die!) why is there such a huge gap in this “difference of opinion?”

I share and share to spread awareness, but who am I? I’m not that fancy doctor telling someone it’s Adrenal fatigue. I’m not the pharmacist saying a supplement will rebuild the adrenals.

I am just me, this crazy woman who has been through it, learned from it, and trying to save a life by teaching about it.

I am just me, this chronic warrior with my own opinion.

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I will succeed! I will!

Everything was going so much better, my symptoms manageable, almost like all of my illnesses were in remission.

As the good days turned into weeks, then months, and after a lot of thinking and talking with hubby we decided I could return to the work force. Well not really the work force, my own biz so I could set the hours and not get fired for down days.

So that’s what I did! Letting disability go, I set out my adventure! Things going amazing with readings and wonderful feedback from clients. Then the Mystic Market, oh what a blast of 3 hours of speed readings. I’ll admit, it wore me out but was so worth it.

Little by little I’ve been seeing symptoms returning. Ignoring them at first, then accommodating them, and this week just letting them take me.

I don’t know if this is weather pains, stress pains, flaring or what, but I’m having to face fears.

I was scared to let go of my Disabilty income, because what if I get sick again, what if I come out of “remission!” What if!

This morning as I woke up and the pain, stiffness, and swollen hands prevented me from making a fist! The pain in my hips and knees made me cry out as I tried to stand up!i crumpled to the floor and cried. I can’t do this. I can’t be in this place again. I sat there and cried, wondering about if my biz was a huge mistake, if everything about me is a mistake. I just cried.

I finally stood up and made my way to my Medications, another reminder that I will never be okay! I washed the pills down, a handful at a time, hating every moment.

Then like a bolt of lightning shocking me to my senses I realized this…

  • I won’t ever be “okay” and that is okay.
  • I will always take the meds, they keep me alive.
  • I can do most readings from bed.
  • Those who need me will find me.
  • It’s not about the money.
  • I can do this.
  • The world needs me to do this.
  • I need me to do this.

I will succeed. Somehow the strength will be there. Somehow the clients will be there. Somehow the money will find its way to me. My love for what I do IS my reason to fight these dragons.

I will succeed. Yes there will be down days, weeks, months. Yes I will have to accommodate and reschedule appointments sometimes. But YES I will succeed. Because the world needs me to, because I need me to.

I am not giving up. I will face my fears. I will succeed.

When you want to give up, look for one thing, anything that gives you the hope and faith that makes you fight another day! Win everyday one day at a time.

Oh in case you are wondering what biz I am talking about, here is the link.

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.

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.