Endo Fear part 2

So it went a little something like this…

At the endocrinologist office today…

All of the routine stuff of vitals being taken, then I was shown to my room. A room with paper thin walls. The thin walls helped ease my fears of this big mean dr.

I could hear him chatting with his patients, I could hear him stop and listen when he asked them a question, then he responded with real answers.

This won’t be so bad after all, I thought to myself as I stared at pumpkin puréed orange walls decorated with invisible art.

Then came the knock and a friendly smile and introduction.

He flipped through my chart & then binder of tests and results. Chatting occasionally.

Asking questions.

Bottom line is that his office is not equipped to do the diagnostics that need done to get an exact diagnosis of Primary Adrenal insufficiency or Secondary Adrenal Insufficiency. In addition to I have so many other illnesses… He said he cannot confidently treat me.

I am now being sent to a Bigger Endocrinologist clinic in Dallas, where they have the equipment for testing and the safeguards in case I go into crisis during testing.

The doctor told the receptionist to refund my money, he apologized that he couldn’t help me.

He was a nice guy, I appreciate the honesty he had with me about everything (including how he felt about me being put on steroids before a Stim test.)

Can you believe he gave me a refund?!?!

I’ll know next week sometime about when the next appointment will be.

Also brought to my attention, to bring to my doctors attention is the diagnosis of “multi-system degeneration of the autonomic nervous system” and if that is a true & accurate diagnosis why it is not being treated. That should be high on the priority list because that one is progressive. Wait what?!?! Did I forget that diagnosis? I looked it up—- I wouldn’t have forgotten the importance of that. Or did I purposely block it out.

So that’s how it went. Not so bad after all. Yes a bit like starting over but it should have been done like this years ago when I was diagnosed.

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Endocrinologist Fear~

I’ve been diagnosed a number of years now with AI, and more recently with severe Hypoglycemia, and my doctor says it’s time.

It’s time to see an Endocrinologist. Some parts of me are excited to see a specialist for the specialty that can possibly improve my quality of life.

The other part of me is terrified! I’ve heard countless stories of how badly Endocrinologists treat people, especially those with rare conditions like AI.

I looked at this doctors reviews, I know, I shouldn’t have done that. They were not good at all. I’m trying keep in mind that usually reviews only get posted when things have gone wrong, that every dr & patient relationship is different, but I’m still scared.

I’ve been through enough with doctors doubting my illnesses, blaming my illnesses on other things, misdiagnosing my illnesses. I’ve had to start over so many times, been a test rat to many times.

This just feels like I’m about to go through the “let’s start from scratch” thing again.

I don’t want to change things, I’m afraid the change will make things worse not better. I’m afraid.

I’m afraid my emotions will not handle a rude doctor and I will make myself look like and emotional idiot.

But then again it could go good. He may say “let’s try the pump,” and my life will improve. He may say I need less or more medication and my life will improve.

My appointment is Wednesday morning.

Stay tuned for Endocrinologist episode 2…

Day 1+ Weigh in & Goal Change

Okay today is day 1 on the new health adventure. Things already changed in a major way.

What changed so quick? My perspective. New Goal is to decrease or eliminate the bloating & pain that comes with it. To do that I need to make better decisions with my diet intake, quality & quantity!

My goal is no longer to watch the scales drop pounds or the measuring tape drop inches. My goal is to feel better.

I am sticking with the diet plan & lifestyle changes that I started before, this time going by the rules and learning a new and healthier lifestyle.

Cupboards are stocked.

I am ready.

With that said, I am keeping track of pounds for medical purposes, but not inches, my clothes will reveal those changes.

Day 1~ 193.2 lbs

Let this health adventure improve my life, ease the pain, heal the issues my tummy has…

Here I go Again~

Tomorrow!

Here I go again~ Tomorrow!!!

In September 2018 I posted this post about a diet/lifestyle change. I had had to do some digging to find it and remind me why I initially started that plan and how it worked so well that first month. I lost a lot of weight on that plan but I didn’t stick with it and have gained it all back.

Not only did I gain all of the weight back but I picked up some new unhealthy habits along the way. Okay, I’ve kicked myself for a failed attempt. I’ve even tried the “but I’m steroids” approach, but the reality is simple…

I make unhealthy food decisions.

Tomorrow I am back on the diet/lifestyle change plan.

All of the same reasons from before still exist.

I’ll weigh in tomorrow morning!

Here I go again…

Head above water~

Everyday I tell myself “I’ll do _____ tomorrow. Tomorrow I will feel better.” Then tomorrow comes and I say it again.

And again.

And the days have turned into weeks.

Those things remain undone. Untouched.

Always on my mind because I want to do them. I miss Astrology, I miss reading, I miss… I miss the things I was able to do a month ago.

I knew this last month would challenge me! I’m actually surprised at how well I did with all of the extra (and extra) sensory stimulation, the extra everything that no one else thought of when they thought 2 would be easier than one. But I survived.

I’m in recovery mode now, I’ve slept the last three days and nights too, off and on. My cortisol levels are trying to catch up, sleeping through medication alarms isn’t helping. The regular low cortisol symptoms are in full effects. I hate living this way.

When I was raising my boys I never really noticed motherhood with illness because it was just a part of our lives. They knew the rules, they knew what I could and could not handle, they knew the sensory issues and stomach issues and cognitive issues. They were raised that way and that was just how things were.

The first part of this summer my bonus daughter (11) came to stay, as did her cousin (10.) They are both good girls, they both did amazing considering the extreme adjustment of not only being around someone they rarely see but also all of my limitations and issues. I felt sorry for them, yay for summer break.

Seeing parenting with the raw edges like that was shocking to me. I hated that the noise needed limited, the physical activity would nearly send me into an anxiety attack, the questions and the giggles and… while I miss that, my senses were overwhelmed. I’m just not used to it anymore.

The silence and stillness of the sanctuary went shocking startling-static for the last month. I knew I’d need time to recover. I kept telling my husband I’d need at least a week to recover (right after asking him why he thought this was a good idea.) But I didn’t expect to feel this broken.

I didn’t expect this much pain inside or outside. I didn’t expect to really need a weeks worth of sleep to feel okay again.

Just listen to this song…

I’ll recover. I always do.

I’ll be better prepared next summer.

I’ll get to my tomorrow list.

For now, I’ll just rest and try to keep my head above water.

Did Not Disturb The Peace~

It’s been an interesting few hours here. I’m still not sure what to think about it.

I was sitting in my chair, scanning Facebook and became dizzy, I kept fighting it off but it kept getting worse. Soon I was nauseated and stumbled my way to bed. This all felt like low cortisol but came on very suddenly. I laid down and the spinning kept getting worse.

I remembered I had not had my 10pm HC so stumbled and wobbled my way to the kitchen for water then back to bed with the med. I started getting scared!

What was happening. My pulse was dropping from 71 to 62 when I decided to take my blood pressure.

139/89, by what I could find that isn’t bad but not good and not my normal.

Hubby came in at this point and suggested I updose. Which I did.

About 30 minutes later I realized something…

my body was quiet.

I didn’t hear the rolling rumble of thundering pain through my muscles, the squealing searing pain in my head, the nails on a chalkboard grind in my bones, the rhythmic pound of my heart, the noise that is usually so loud was QUIET.

I laid there, at first wondering if I was even alive anymore, then not wanting to move, just to savor the tranquil silence. It felt amazing. It felt so unreal.

I didn’t move. I didn’t want to loose that glorious place of quiet. I laid there. Silently.

I’m not sure how much time passed but little by little the noise came back with an ache here and one there and it grew louder and now I’m back in the body I have come to know. As disappointing as it is to have the “noise” back, I’ll never forget the quiet I had, even though it only lasted a little while.

I did not disturb the peace.

I’m not sure what happened to me tonight.

Who do you show? What do they see?

Who do you show? What do they see?

I wonder this more than I should. In fact I shouldn’t care at all, but I do. Invisible illnesses are just that, invisible, so what do people think when they see me versus what I say?

No one person in my life sees it all, my husband sees the most, but there are things I just don’t share. I have no family that lives close by so they only know what I tell them. The few friends I have locally, visits are known in advance and I can prepare, so they only see what I let them see. I don’t see anyone on an everyday basis (except hubby) so no one really know how I am, what I go through, what my days or nights are like.

So what do they think?

I read over and over about other spoonies and how their family thinks they are fakers, hypochondriacs, making it up, just lazy, just depressed, seeking attention, drug seekers. With the exception of hearing this when I was young, I don’t think I’ve heard it in years.

Does that mean they finally understand?

Or do they think the same things that is so common of invisible illnesses?

*found on Pinterest “Quotes”

I share pretty openly about my illnesses, not just so people know that of me but also for the benefit of others. Maybe they have similar symptoms and I can help speed up an otherwise lengthy diagnosis. Maybe they know of someone who has _____ illness and are not so open. In general I share for education, knowledge, and well, it’s my life.

I know that when another friend or family member is has the flu or recent surgery or even cancer, people flock to their support with well wishes, cards, messages of support, visits etc. but this doesn’t happen with chronic illnesses.

In fact the opposite happens; less involvement, less contact, less responses to social media, and so on. I wonder why this happens?

Is it because there is only so much support one can give? Are they sick of hearing about it? Do they give up on me as a person? Maybe they don’t believe me? I just don’t know.

The dynamics of chronic illness is different, what I could do yesterday I may not be able to today. Or maybe some days you see me active on social media and assume I am good, the reality is the days I am most active on social media are the days I am usually stuck in bed.

I am not here to try to convince you that there is more to me than what I show you, I don’t want to or need to convince anyone of my truth- I live it everyday.

This post was more of my wondering mind, knowing I am not alone in this chronic mad world, thinking onto the keyboard. I probably don’t want the answer to my questions. The answers would probably break my heart.

* Image from Deviantart

Yet I know, they only see what I show and with Invisible illnesses, showing is harder than telling. So they will probably only believe what they see. Such is life.

Keep fighting Warriors, not for them, but for you!