And Tonight’s Special…

If it’s not Insomnia it is Painsomnia, or exhaustion, I am lucky enough to get that once a week. 

Tonight Painsomnia is the Special,  it’s a common dish served here that includes cramping and aching specifically tonight is the neck, collarbone, and legs. With a side of fever at 101′ and the weirdest side of pruney feet and hands! This “Special” probably has something to do with the high pulse rate I’ve had all day! And for desert a throbbing headache! Yummm! 

I was diagnosed with Secondary Adrenal insufficiency back in November of 2015, I knew to updose in stressful situations! I’ve read enough about people needing to updose in the heat, or when in pain, and some even when the weather changes, but it never occurred to me until tonight that I am one of the “them” I read about.

I don’t know why I thought I could/should only Updose when things were SUPER stressful! 

Yes, things are pretty darn stressful right now, I thought I was doing okay! 

Yes, the weather change has my fibro fighting mad.

Yes, there is all 100+ degree heat. 

Yes, my body has now accepted GERD, (being treated the last 3 days.)

Yes, my plantar fasciitis is in a fit. 

Hmmmm, NO, I did not even think about updosing! Why? 

Why? Because Many doctors do not know what to tell me to do or watch for. I keep my doctors notes and refer to them when something new happens. But this was not in the notes. 

Thankfully, the online AI groups I am in are very educational and usually quick to answer one of my “I’m a newbie” questions. 

Awareness! The medical community needs awareness! The world needs awareness. I need awareness! 

I write this blog to show the RAW everyday life of invisible chronic illnesses, to spread awareness, to show a fellow Spoonie YOU ARE NOT ALONE! And part of this RAW-ness is admitting “I DID NOT KNOW!” 

UPDOSING! Praying tonight’s SPECIAL changes to a dreamy sleep! Well it’s 4am, so probably not much dreamy. 


I’ve got the Best- Best Friend~

And we have the most fascinating story~

We used to travel for my husbands work, literal Gipsies, living out of a camp trailer and going from town to town! I loved it, but it got lonely, making friends on the road is hard and keeping them is even harder. 

My husbands job was taking us to a new town, so as always I researched laundry facility, hospitals, doctors,  RV parks, places to eat and things to do, and Of course the nearest metaphysical shop! 

I found Emilia through her shop! I emailed her first, voulenteering astrology readings at her shop! Looking back, that was kinda crazy- she didn’t know me at all!  Anyway I started spending a lot of time (and money) at her shop and our friendship blossomed! 

At this point I was just unwell, not super sick. The Fibromyalgia had its days, as fibro does, but it was just fibro! 

Then the job moved us away, I cried! I was lost without my new friend. But it was part of what we do! I figured that she, like most of my friends, would fizzle from my life. But she didn’t! 

And Then I began getting sicker, and sicker, and… Finally diagnosed with Secondary Adrenal Insufficiency. 

Just shy of two years after meeting her, my husbands work brought us back near where the friendship bloomed. About an hours drive. 

I’m much sicker now, I’m not the person I was two years ago. I was worried what that would do to our friendship! 

My issues with driving means she makes all the trips to see me. My good day/bad day issues means canceling plans at the last minute. She walks alongside my wheelchair (when I’m in it)  as if I wasn’t in one. My horrible memory, moody days, my sleepless nights and incoherent days- she is always there with support, a giggle, a distraction, a coffee, a different perspective!

Our Two Year sister-versary! 

We have now adopted “Midnight Margaritas!” A girls night, a slumber party that involves movies that we never watch because we are busy talking, she tried to teach me to crochet, sometimes we go out to dinner and sometimes we stay home, but we have “Midnight Margaritas!” Now as most people on a ton of meds we cannot have alcohol, so she drinks Virgin Margaritas with me! Now how supportive is that? And lucky for us, our amazing hubbys support our Midnight Margaritas by letting us have this girls time! 

Tomorrow is Midnight Margaritas! I don’t stress and worry about “What if I don’t feel good?” “What if I get too exhausted?” “What if I get cranky because the pain is intense?” I don’t have to worry about that with Emilia, because if any of that or all of that happens, she will be there to support me! We don’t have to be “doing” anything or “going” anywhere! We can just be. 
And this, this is why I have the Best-Best friend! 

Finding The Calm~

Finding the calm in the storm is hard, something I have never been good at. Something that somehow I am getting better at though. 

I’m actually not sure how it happened today, but I’m glad it did, I found the calm in the storm. It seems as if our lives are being tilted, the threat of being tuned upside down is lingering. 

Watching someone I love try so hard at something while the opposing forces are cruel and ruthless, selfish and greedy is breaking my heart and sending my stress level through the roof! Why do good people suffer when the liars come out on top? 

But I cannot hurt myself over something we have no control over. I have to take care of me. My blood pressure went wacky today, my heart rate was not what it should be, all of my low cortisol symptoms started a storm in my body with intensity. I had to find the calm before the Lightning began striking. I had to calm down before I got any sicker. 

I updosed, I took a 4 hour nap, then I explored our yard. I tended to the vining morning glories that brighten my mornings. I felt the grass under my toes. My Healing Hounds were exploring with me, never getting to far away. I took my favorite Goddess statues out for a photo shoot. I let the beginning sprinkles of the incoming storm soak into my skin. 

And I found the calm in the storm. 

Odds and Ends…

I started new meds today to treat the GERD (I really dislike that word!) I was told it could take the first dose to see relief or up to two weeks! So now I wait! 

Life at the moment is causing some serious stressors, so I am having to be really careful of I handle things. I wonder if it’s normal that a specific person/situation can send someone’s cortisol levels low it’s near crisis every time there is interaction? Yes it is that stressful! 

I also wonder if, now that I have had one crisis, if I am going to be more susceptible to others? Like when someone (healthy) has heat sickness once they tend to be more susceptible to it in the future. 

I’m ready for a good day! To many downs lately. 

Seriously Not Impressed! 

Okay so I live this life mostly from bed. The pain and fatigue keeps me here! 

But then I start getting this thing where my throat burns and I feel like getting sick when I am laying down! 

I am seriously not impressed! I can’t lay down with out pain now and I’m so tired! 

Yes I start the medication today but for right now I am throwing a tantrum! I just laid down to take a nap and that is not happening due to this GERD! GERD, what even kind of word for a condition is that? Yes I know it’s initials- but still GERD? 

It should be called RMND! Ruin My Naps Disease! 

Okay sorry for the vent! The discomfort is maddening. I hate new symptoms! 

Do You Wonder What They Would Say?

As Spoonies we have a list of things we wish health people knew. We wished they knew and understood. Our spouses, our friends, our care givers, our doctors- we have a list of “I wish you knew.”  But what if, they wish we knew something too? 

One day I sat down with hubby and son and I told them some of my “I wish you knew and understood’s” then I turned the tables. First a look of confusion, then one at a time they began their list. A list that was almost as long as mine. We cried, we laughed, we talked. 

Some things on their list…

  • I wish you knew how scared I am.
  • I wish you knew how much I worry but don’t show it. 
  • I wish you wouldn’t feel so guilty.
  • I wish you wouldn’t beat yourself up over things.
  • You do contribute, maybe not physically but emotionally. 
  • I wish you knew how strong you really are. You are the strongest woman I know. 
  • I wish you knew my anger is not at you but at this illness that destroys you.
  • I wish you knew how bad it hurts me to see you like this.
  • I wish I could touch you like I used to. 
  • I wish you could understand you are not a burden. 

The lists go on and on. Things I had no idea they were going through! Responses I was not expecting. 

So if you get a chance to have this conversation, have it. Some answers we don’t want to hear, just like some of our list they don’t want to hear. But some responses will blow your mind. 

Healthy people reading this, what are some of the things you wish that us spoonies knew and understood? 

I’m Not This Way On Purpose~

I post the happy~ I am so Thankful posts then an hour later I am posting the F-off~life sucks posts then later I post the disease awareness posts. It continues, sometimes hourly sometimes daily. But I assure you I do not swing from mood vine to mood vine like Tarzan in the jungle on purpose. 

“You are so negative.” “Don’t post when you are not feeling good.” “You are so dramatic.” “Attention seeker.” The list goes on, I’ve heard it and I’ve felt it. 

I wish your advice was as easy  for me to do as it is for you to slap me in the face with. I don’t like looking like a drama queen, I don’t like the amount of friends I’ve lost over it. I don’t like feeling it wayyyy more than you don’t like reading it. 

You should see the mood vine jungle in my mind if you think what you see is “dramatic.” I don’t show you 1/8 of what I feel. I just sometimes get so full up that I need a quick little vent. 

Yet I am stuck in this body with ever mounting symptoms and diagnosis, stuck in a life that is more isolated than the one I was used to, stuck taking several medications and dealing with their side effects, stuck in constant pain and guilt. 

So while you sit there unstuck in your life judging me, maybe you could try being nice, offering some support, asking if I am okay, or just say nothing because you obviously do not know enough to be talking about this. Your comments, while you think are justified are ignorant, hurtful, and damaging. 

This jungle I swing through is ever changing, not adaptable, and gets depressing. 

When you think I am being weak, that is actually when I am fighting the hardest. 

I try to be positive, and for the most part I do pretty good. Sometimes though, the weight is to much to hold. 

I read a quote the other day, I cannot find it or remember who said it but it went something like this. 

My illnesses are like ever changing puzzles, not only are the pieces in constant motion but they change shape and colors too.

You would get frustrated and depressed from trying to work with this puzzle too!