A Big Oooops!!! Medication~

I have been noticing that I was getting sicker and sicker nearly daily, last night I was minutes from waking hubby to take me to the ER (I fell asleep- will explain) because I felt like I was dying- or at least wanted to just to escape the pain. 

I had not experienced pain like that in a very long time, with every heave of my stomach the pressure in my head got worse- I was terrified- I knew what was happening- Crisis! *As near crisis as I would/should ever get without going to the ER! But that was the only thought, I couldn’t connect the dots as to what to do about it. 

“I knew what was happening- Crisis!” 

I tried something I usually don’t do, much less at night, I increased my dose  from 2.5 at bed to 17.5!  I waited! I kept giving it 15 more minutes~ then I woke up with the headache, not nearly as bad 4.5 hours later! Nausea and pain still causing chaos in my body.  My usual wake up dose of 10 was bumped to 30mg~ and I waited for pain to subside, it eased but didn’t go away. At 10:30am my usual dose of 5 was bumped to 15. Again I waited…

And finally, the headache is barely noticeable, the pain still lingers, I managed to keep my dinner, and after weeks of having it all,  the relief is amazing! Yes, I said weeks!

I made a major bad Ooops with my medication May 8th! 

I know the exact date because it was written in my #SpooniePlanner! I rewrote my medication schedule that day, as I do every few months to use as a cheat sheet for the weekly refill of medication organizer…

Fast forward to this morning and I am getting ready to place a call to dr because medication needs upped- I can feel it. I need more Cortisol!!! So I get out my cheat sheet and notice my mistake… 10+5+2.5+2.5 DOES NOT = 27.5

I added and re-added the miligrams! 30 is my daily suggested, but I do awesome at 27.5 where the heck did I loose 7.5? Why aren’t the right numbers on my cheat sheet? Reading further into that days journal entries I mention multiple times about BRAIN FOG!!! 

*see how useful a health journal is?! πŸ““ 

*Brain fog sucks ☁️ 

*see how I should not do my own meds? πŸ˜‚

OH THE MED I AM TALKING ABOUT… Hydrocortisone~ the steroid that keeps me alive! 

When I told my husband of my “Ooops,” he wrapped me in his arms and said “If something big would have happened you might not be here right now!” I hadn’t thought of that! He will now be double checking my lists. 

*see how amazing my hubby is! 😘

Tonight I am still not 100% (as 100% as I get anyway) but wow it’s a night and day difference! I’ll take extra Hydrocortisone tomorrow and maybe the next day, then be back to the real dose that really totals 27.5. 

I’m glad I found the error before it was to late! Now to recover. 

Good night! 

Blessings πŸ’œπŸ•―

Flare~

I’ve been watching the weather, monitoring my stress, all of the normal things that seem to aggravate my symptoms and nothing obvious is amiss. 

Yet the pain is high, the pulse is high, balance is poor, dizziness is a hazard, low Cortisol symptoms are all over the map! 

Just now I was awkwardly laying here trying to connect the dots and realized I’m flaring, that is the only explanation I see. 

This is both good and bad! Bad because it means things will be worse than normal, but good because it means I haven’t had a flare in a while. 

My skin in flaring! My joints are flaring! My muscles are flaring! My head pain is flaring! My emotions are definitely flaring! 

Yep, must be a flare! 

Broken Tea Cups~

A dear friend posted on her Facebook about getting so frustrated/ depressed/ angry with her multiple chronic and some yet undiagnosed illnesses that “things went flying.” I can relate to that so much on so many levels of dealing with chronic illness. 

I imagine a room with broken tea cups heaped in a pile, the emotion still think in the air, you can still hear the pieces falling…

Broken tea cups. That image quickly turns to a more thorough exam of the shattered and splintered pieces, not being able to tell one splintered cup from another, it’s a kaleidoscope of colors and shapes, jagged. It compares to what I (we as Spoonies) face daily~ what illness does this symptom belong to? Do I need more salt or more sleep? Is this crisis or a POTS flare? Is this adrenal pain or a transient fibro pain? The pieces are a jagged guessing game. 

Image from Hannibal teacups

Most of the pieces never get put back together, I just move on to another day, and other day wrapped in such frustration that I may add another teacup to the pile, thrown in frustration, depression, anger! 

I try to manage my symptoms, I try to decipher the pains, I try to stay strong, I try to “push through it,” I TRY! But I am so tired, so tired of guessing and not knowing, the pain that never ends, the emotional repercussions of dealing with this, the devastation of knowing I won’t ever get better…

Sometimes I just want to throw things and scream! To let it out! To watch the pieces fall. 

Splintered. 

Shattered. 

Broken tea cups. 

Sending love to Spoonie Warriors who have learned to make beautiful art from broken pieces! πŸ’œ

DYSAUTONOMIA~ say what?Β 

this week is dysautonomia awareness week. I’d never even heard of this until I was diagnosed with Degeneration of my autonomic nervous system and POTS is one of the things I have as a result. The last 3 days my heart rate is “getting in the red” way more often than normal, 1.) I’m spending more time outside in 100+ weather and 2.) I’m not drinking enough water. 

Today I seen the 160’s which is new, and it scared me. I guess I’ll be being more careful than normal.

Image from Dysautonomia project .org

Now I am not even going to pretend to know much about POTS- I know that when I stand up I get dizzy, sometimes it makes me fall over, standing for more than a few minutes makes me dizzy and nauseous, you get the picture. Most of my symptoms are overlapping so the POTS hasn’t been my big focus…

Until this week, this week I am feeling the right chest & pounding heart way more than normal, making me pay closer attention to my heart rate. According to my Fitbit I am getting into the “Peak” (red) zone a lot this week! 

Today has been the worst of it so far. I got into the 160’s by watering my outside flowers! Nothing intense, just slowly going along the flower garden spraying water! My world spun darkness to light. 

I thought once my heart rate slowed down that I would feel better… Boy was I wrong! 

First I slept for two hours with wicked nightmares. Then the brain fog settled in, crazy weird fog so thick… and of course tonight the pain, always the pain- cramping and twitches in my muscles, my chest is sore, I feel like a whole new kind of pain is attacking me, a pain I am not familiar with. 

I don’t know if all of this is POTS related or if the POTS pissed off my others illnesses, but I can tell you that I don’t feel very much like a Warrior tonight. I feel broken. 
For more information about #Dysautonomia here is one link The Dysautonomia Project

And a brief video Here on Facebook.

#turn6into15 

#Dysautonomia

#POTS

Permission to Live~

Tonight I spent some time looking back on the last year and I am amazed at the changes! 

I spent years looking back in sadness and anger for the person I was before getting sick. I spent a long time fighting the sick me! I didn’t know how to accept it without giving up, and honestly I didn’t want to accept it. 

In the last few months something clicked and pieces started falling into place! That day my newest doctor was blunt enough to say “I can’t cure you, there is not a cure…” I should have been heart broken, but the truth is I knew there wasn’t a cure, I knew I would never be “healthy” again! But it was like he give me permission to live again, to stop fighting and to accept all of these chronic diagnosis. 

I started noticing where my energy was going and am still amazed at how much energy was being wasted by fighting my health, distracting myself from my health by being pissed of at the world and everyone in it. 

Image from Warrior Goddess Training

Little by little I took control of where my energy was going, I chose my battles a bit more wisely, I spend less time being angry, I spend less time distracting myself from the pain! Now on a high pain day I rest, spend the day (s) in bed because I finally understand that is what I have to do. I am more careful to not overdo it on a good day. 

It’s hard for those around me to understand that I am not “better,” that I am just doing better about taking care of myself. I don’t know how many times I’ve heard “I’m sure you’ll do fine because your doing better.” And it makes me cringe; my pain is still here, the fatigue, the dizziness, the exhaustion- it’s all still here. I know my limitations and instead of fighting them I accept the changes and even plan for them. I’ve become more aware of what is really worth my energy. 

I don’t have much energy, but I do know that life is better when I am spending that energy in positive pro-active ways. Being mad and hateful, feeling sorry for myself was getting me no-where and making me sicker! 

There just might be something to the “be more positive” statement! It just takes a while to grasp what that really means because it means something different than just “being positive.” 

Here is Permission for you to LIVE! Become aware of what you are giving your energy to and you’ll be surprised with the changes that begin to unfold. 

To tired to breathe.Β 

All to often this happens, then the lack of air headache kicks in, did you know that being literally to tired to breath is common in fibro and cfs? 

A wise woman by the name of Clarissa Shepherd posted the following post in her Facebook group Fellow Travelers, Support and Chat and I wanted to share it with you!

Just knowing this helps it be less scary. 

Too Tired to Breathe

Most of us understand, this part, of our type of illness. With ME/CFS and/or Fibro, we feel this overwhelming issue – far too many times.

We may be trying to make it to a Dr’s appointment, through the grocery store, or even laying in our bed, and feel as if we’re too tired to take our next breathe.

 Many times, it feels as if we must force ourselves to breathe. Other times, we find ourself wondering – if the next breath will be our last.

Wondering how we can feel this exhausted and still be breathing or living.

 Its something thats very diffiult to explain to anyone who hasn’t felt this tremendous symptom.

 While its both overpowering and scary, its one of our many symptoms listed in the Journal of Internal medicine. Its listed in this way.

 ” Respiratory: Feeling as if we’re struggling to breathe, labored breathing, feeling as if the chest wall muscles are exhausted. ”

 So while its important to get this issue checked out by your Dr., I hope that by knowing its a common symptom, it may set your mind at ease, a bit. I so dislike this and its a miserable sensation. 

Downplaying for my comfort or yours?Β 

I’ve been wondering lately, is chronic illness downplayed by the healthy friends and family for the comfort and reassurance of the Spoonie or the person downplaying the illness? 

Spoonies, have you noticed how much our illness gets downplayed by friends and family? Have you ever wondered why they do that? Is it because that truly don’t get how serious and life impacting the condition is? Do they do it because they don’t know what else to say to us? Are they trying to be reassuring? It is reassurance for us or for them so they don’t have to face our conditions? 

Healthy friends and family, Do you realize how your downplaying makes us feel? Most chronic illness are invisible and your minimizing makes us feel like you don’t believe our symptoms are real or that we make to much of it. It makes us feel like we have something to prove to you, sorry I don’t look sick today! It is hurtful to us! We are not this way by choice, believe me, if we had a choice we would not have this/these illnesses. 

To much pondering today! Just being curious!