I Thought More Had Changed~

I recently seen a new endocrinologist that I like. She ran several new tests that had never been ran before. The results had started coming in and today she messaged me about the results.

I was so excited about the results…

First of all, I do not have Celiacs! Huge relief.

A bunch of other tests were normal!

Dr does want me started on a mild estrogen Patch.

The main results were that I do not have Addisons Disease Primary! I do have Secondary adrenal insufficiency. I was so excited about this! I posted it on Facebook, made the announcement to friends and family. The more I talked and listened to my words, the more I realized that nothing really changes for me.

*neither image is mine. Both were found on google search.

I really thought more had changed. Or maybe I expected something to change! Maybe since I liked the doctor she would magically make the Adrenal Insufficiency disappear. I do that to myself with every new doctor. Expect miracles.

Reality became more clear when I came here to edit my list of diagnosis’s. A list titled 15 has actually had 16 on it all along without a number. So in this list #1 has been edited and #7 has a number. I’ve also changed the title of the list, it’s always had a number in the name. No more. It’s just a list.

The List.

1. Adrenal Insufficiency (Secondary)

2. Fibromyalgia

3. CFS/ME

4. Osteoporosis

5. Osteopenia

6. POTS Dysautonomia

7. Multi-System Degeneration of the Autonomic Nervous System

8. Hypothyroid

9. Hashimoto’s

10. GERD

11. IBS

12. Chronic Myofascial Pain Syndrome

13.Scoliosis

14. Hypoglycemia (autoimmune related)

15.Pre-Diabetes

16. Hidradenitis Supperativa

(I have not connected those to links, but the post here has links.)

And to name a few tag along illnesses (illnesses that usually come with one of the above)

Raynaud’s Phenomena

depression,

anxiety,

ptsd,

plantar Fasciitis,

ocular migraine,

Neuropathy in both feet

cognitive impairment due to illnesses,

short term memory disorder,

insomnia and missing stages of sleep,

Polyarthralgia

multiple deficiencies in vitamins and minerals,

malabsorption.

And then of course there are the tag along symptoms that are so common that there is no need for a “diagnosis” like; chronic dry eyes and mouth, chronic diarrhea, tremors, lingering sore throat, fever, allodynia pain, hair loss, vertigo and this list goes on for days.

I don’t know if it counts or not but I also have carpal tunnel and tendinitis.

The pain obviously effects me 24/7. The insomnia makes it all worse, add in stress (physical or emotional) and symptoms flare. Weather changes also cause symptoms to flare, I know rain is coming before the weather reports do. Even getting nervous about meeting new people or going to a new place can trigger me.

The cognitive impairments are my biggest complaint; recall specifically, memory recall, recalling common words or instructions for tasks or in conversation. For example I know how to heat a can of soup, basic right? On a low cognitive day I cannot remember how to do such a task. Another example, I will answer the door to the person who looks familiar through the peephole but it may take several moments to realize he is my son that I see on a regular basis.

The cognitive issues are a big stressor for me, I feel it makes me appear dumb or like I am lying about the context that I am talking about. I am neither dumb nor a liar, but these illnesses rob me of my intelligence sometimes.

*image from The Mighty

As you can see my day to day life is a struggle at best. Some days you would never know anything is “wrong” with me, and other days you would think… well I am not sure what you would think.

Some days I want to give up and let my chronic-hotness of a mess just take me, but I fight hardest on those days for a reason to live. Some days I find inspiration to enjoy life and want to live, somedays my will to live is obvious in my every-word.

Adrenal Insufficiency (Secondary) can be fatal if a crisis is not treated correctly and quickly, finding a dr who knows enough about it is challenging. Unlike diabetes I cannot check my blood Cortisol levels and it is constantly a guessing game if I need more or less medication, therefore I can easily drop to dangerously low levels without even realizing it. Adrenal crisis is my worst fear. I do carry an emergency injection kit with me at all times.

By now you can probably see and agree that I am a chronic hot mess. I do my best everyday, except the days I stay in bed because my energy to fight it has worn out and I need a recharge.

Well, now that I have explained all of that… whew- this post has been a while in the making. I hope that you can now see that I am the way I am for a reason; last minute cancellations, stammering for words, taking a bit to respond to messages, forgetting to respond or answering in a confusing way, not recognizing you, not recalling a funny or sad memory and so on are just part of who I am. Please be patient and understanding. I am not this way on purpose and believe me, it irritates and frustrates me way more than you could imagine.

So there it is. My chronic hotness of a hot mess is explained! 

Oh and FYI- this wasn’t a sympathy post, I don’t need sympathy I need patience and understanding. I may be a chronic hot mess, but I am badass in my chronic ness.

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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.

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.