Potential New Doctor~

First I need to say, I am ever so thankful for my existing doctor. Over the last year he has found and treated so much, he has brought me from practically bed bound to walking some days without assistance. So even though I am excited about today don’t think I am not grateful for how far I’ve came. 

My existing doctor and I have came to a point where he has done all he knows to do and is now playing a guessing game and for some reason has stopped listening to me and instead goes off on his own tangents. This doctor, as most of you know, is an 8 hour drive from my home. With monthly appointments this gets exhausting and expensive. 

Through an Addisons Disease support group I was recommended a doctor (general doctor) less than 30minutes from our home. 

And here is where I am introduced to a new term… concierge Doctor! What the heck does that mean? 1800$ and I get what? 

Wikipedia definition

Hmmm, so I get this nearly 5 Star rated doctor, same day appointments, phone/email/text access whenever I need him, he will be attending at the hospital if I am hospitalized, 45minute appointment time slots, more individualized care, not talking to a recording every time I call… the list goes on and on! So why wouldn’t I do this? 

For some people this wouldn’t make much financial sense, or much sense at all, but for me, this is amazing news! 

So today my dear hubby and I go for a consultation to meet this doctor, to make sure we are a good fit! I have enough experience now to know what I am looking for! 

  • Does he listen to me?
  • Does he know what he’s talking about?
  • Will I be co-person on my care team?
  • Does he bandaid or research? 
  • Does he focus on horses when he needs to think Zebra! 

this list could go on and on too, but that is what today is about, seeing if we can work together! 

I’m not nervous, I am excited, I have a good feeling about this! And a wishful thinking part of me is hopeful to reduce the medications by a lot! I truly feel I am on to much! We shall see. 

Anyway, I just thought I would share, us Spoonies know how hard it is to find a good doctor, hence the reason we stick with a mediocre doctor when we find one. 

Wish me luck today! 

Blessings! 

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Disappearing~

It’s happening, it’s always been happening, but some days it’s harder to accept than other days! Or maybe some days I just feel like it is happening because disappearing is what I want to do! 


Disappear~ being stuck in this body, being unable to be the person I was, wanting in my head and heart to join the people but my body just laughs! A cruel joke. I feel like I am disappearing to others, they are moving on while I am just… 

I just am. 

I still have not recovered from doing taxes, I mean seriously? That was days ago! I had plans for today! I have been taking it easy so today would be doable… yet today won’t get done. 

Off they go to a birthday party, here I lay, a pity party for one! 

My competency seems to depend on their use for me, my ability seems to depend what they want to do. My opinions and suggestions go unheard. My world is quiet! 

I’m getting better at ignoring the lonely hallway of my life, most days I even prefer the alone (I never thought I’d say that!) 


My own company isn’t so bad, I have no expectations to stand up to, I don’t ever feel the rejections of the things I can’t do because when it’s just me we only face what I can do. 

So as I write this, I feel a realization sinking in, maybe I am not disappearing to them, maybe I am pulling away? 

It’s not like I have a choice, social gatherings take up way to much energy, especially with people I have nothing in common with, seriously, I don’t even know what to talk about! So I guess it has become a choice, to disappear, because what energy I do have I don’t have enough to do what they want. 

So give me a book and some food, I’ll still be laying here when you get back. 

Static fuzz, only quietly! 

It is almost 5pm already and I haven’t a clue where the day has gone! I haven’t napped, I don’t think! 🤔 

I knew today would be weird but I didn’t know what to expect after yesterday! I updosed again this morning to kick that headache and it did, but all day my brain is like static fuzz on my quieter! Like a radio not tuned to any channel, yet the speakers are not silent. 

It’s a nice break from the constant chatter that is my mind, yet I would love to accomplish something or at least be sleeping. 

Recovering from a super low Cortisol crash is rough, it takes time, and I am really trying to learn to be patient. Oh but I hate to feel this way!!! 

Anyway~~~ 

I also think the weather is about to get colder, my knees are not cooperating. 

Oh and I just found out that our planners got stuck in customs and won’t be out till Next week! Super bummed about the #SpooniePlanner lateness but it is what it is. Next week will be a good mail week. 

Cortisol Crash~

Today started out good! Then hubby used the T word. Taxes! That mean paperwork, long form, I’m not organized or ready! This cannot be happening! When we were finally ready to go I was not talking straight, or walking right, a little cranky! I hate paperwork! Taxes means do you remember?  And “where is that paper!” 

*I was late taking my HC*

Long story short, Taxes are done! 

Bad news, is seeing in numbers how much my medical crap cost us last year!

Good news, we don’t owe! 

Even though I threatened that if I started crisis or anxiety attack in the tax office for them to just leave me there, it would be a good tax break for hubby next year and he’d save a ton of money by switching to widow- (he didn’t find that funny.) I made it out of the office feeling okay! 

The brain fog is pretty bad! 


The pain was setting in but I thought nothing of it! We went to dinner and what I remember is 1.) the lady came back at least three times asking if we were ready to order yet (just leave me alone!!!) and 2.) hubby kept talking to me about whatever was on tv- whatever that was! 

We came home, he heard air hissing from the tire, I just stared at it like I had never seen it before. I remember having a billion questions, but I remember knowing they were stupid questions but I didn’t know why, so I didn’t ask them. 

Hubby leaves, I crawl into bed, the puppy was howling because he want out of his kennel, but I just laid there, letting him howl! He must have stopped because next thing I know is me waking up headed for the bathroom, rating to the porcelain god and hoping this isn’t crisis because hubby is at the tire shop and I left the phone by the bed. I remember being scared, what if? 

At some point I took my blood pressure, I remember wondering if it was okay. 

The vomiting stopped, I went back to bed! Woke with a killer headache and irritable- actually angry! 

Duuuuuh!!!! Updose! Updose plus some! NOW!!!! (Stress dose)


So I took some extra HC- I’m still unbelievably cranky, my stomach is tickling my throat, but hopefully this will calm down! 

Today I learned a valuable lesson~ I will not be thinking strainght when/if crisis does hit! I need to make ME an EMERGENCY cheat sheet, with questions and answers and directions of what to do according to yes or no to the answers. 

I’ve never thought about what happens if I go into crisis when I’m home alone! It’s never occurred to me that I might not know what what to do! 

Addys, do you have suggestions? 

*maybe I do have a plan in place and am not thinking straight right now. 
***both images from keep calm o matic 

Let’s have some Fun~ II

I completely forgot about even posting part one, must have been a good nap! 😉

So where were we? Talking about Spoonie fun! What do you do for fun? 

What do I even mean by fun? I want to laugh again! Small socializing would be nice! 

I have a “that won’t work because…” for almost everything I think of. To much sensory stimulation, to much standing, takes to long, to hot, to cold, no shade… I could just keep going. But there has to be something, somehow! 

I know it’s my perception of fun that needs to change! That is why I am asking you my #Spoonie Friends, what do you do for fun? 

I’m feeling 🍀Lucky🍀 

It’s not quite time for St Paddys day, but oh boy am I feeling lucky!!!

Things just just been flowing lately, I win things, I meet people at the perfect time, I make a post with perfect timing to get the perfect response… okay this sounds vague, it could be a long story telling of all of my lucky moments but I will just tell of this one…

🍀🍀🍀I’ve posted about my current doctors views on prescribing the very important solu-cortef emergency inject kit right? (I’ll double check that in a bit.) anyway, yesterday I posted in an Addison’s fb group about needing the right phamplets to present to my dr one more time to convince him of the necessity of the emergency kit. Him and I have started disagreeing on quiet a few things, yes he is the doctor but I have a whole group of experience that I have studied and asked for opinions. 

Due to other luck I was in the right place at the right time to have a burst of strength and the doctors appointment is where that Rebel strength was being directed. My intention was for this doctor to listen to me and allow me to be a partner in my care or to find a new doctor. I have been terrified of finding a new doctor due to all of my chronic-ness and the rarity! I didn’t want to go through a dozen doctors. 

Then I got lucky 🍀 


A woman in the group responded about a good knowledgeable doctor in my area (not 8 hours away) who sounds like exactly the kind of doctor I need! To go from a 8 hour each way drive, a doctor I have to convince of the correct care and argue with to a doctor less than 30 minutes away who already believes in the Emergency Shot- Sign me up! 

Now to be honest, I don’t think any of this has been Luck, I believe that everything happened for a reason, I believe that changes need to happen and instead of battling this doctor, I was in the right place at the right time to meet a person who was also perfectly in place to give me this information! I am so Thankful to the way things happen, even if I don’t understand why at first, it reveals eventually! I am thankful to the fb groups and every person in them! 

So tomorrow I will be making the calls to see if I can get into see this new doctor! Please send me good vibes that the appointment is soon and the match is as good as I am feeling it will be! 

So WhoooHooo to opening doors, going with the flow, letting more of my true self  step in and take charge! 

No more walking on me, I am a partner in my care!!!

Let’s have some fun~

Whoa- wait a second, fun? But I’m a chronic hot mess, what does fun even mean? 

I used to party my symptoms away; I drank and danced a lot, and always had an excuse for my tiredness. A social event- I was there, the fun girl, the social butterfly! Rarely did socializing and alcohol not run together! And it was fun! Dancing and laughing and joking- fun. 

Then I got sicker and the symptoms couldn’t be hid, then the medications came along and prevented any alcohol consumption. Poof- gone is the fun girl! 

Somehow the fun girl was replaced by a worry wort! What if I can’t stand that long? What if there is nowhere to sit? What if I fall down in front of everyone? What if my words jumble and I sound like an idiot? What if there is no shade? What if my senses get over stimulated? What if my mood swings? What if  I get a headache? What if I get tired? Where will I lay down when I need to? What if I look stupid by needing to lay down?  What if- What if- What IF???

But, because I am the master of distraction, instead of worrying about me I turn my focused to others, others who are trying to have a good time and don’t need the distraction like I do, so I worry about them; did they eat enough? Have they had that cough checked? Are they planning on driving home? Should they be doing that? Do they feel left out? Is their feelings being hurt? Was that meant as a joke? Do they know that was a joke? Do they- Do they- Do they? 

Okay so try to relate, talk! But we have nothing in common; they work I don’t, they can physically do stuff I cannot, they have other adult interaction I do not! I can talk health stuff and they don’t need to worry about it. Blah blah blah! 

And I suck at meaningless “how’s the weather” shallow conversation. 

So what then? 

How am I supposed to learn to have fun according to my capabilities? 

I need to reDEFINE what fun is! 

Hmmm… I will return after a nap- I mean after contemplation- with some ideas, in the meantime,  as a Spoonie, what do you do for FUN?