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.

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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!

The Shame and Guilt~

*possible trigger warning

Several months ago I started on a diet & lifestyle change plan. I was wildly successful, at first.

I lost 30lbs, I can’t say I felt better physically but I felt better about myself. Then I allowed a cheat “day” and that became a week, became the holidays, became a month, then months.

The excuses poured from my mouth, even convincing myself of the “I need the carbs.” “I need _____.”

As I stood at the kitchen counter devouring my THIRD SANDWICH in a frenzy as if I would never eat again I felt shame! What had I became? How did this happen?

I had heard about dieters in this frenzy, this lack of control, this state of pain and shame, but never had I experienced it. My compassion now runs deep, this is something only experience can teach. You are not alone. I understand.

I knew the eating decisions I was making were bad, I knew I had to change but the more I felt guilt, the more I ate and the worse my decisions were getting. It started a vicious habit, a dangerous path. I literally ate myself sick more than once, not sick like IBS reaction but 3 sandwiches in minutes sick.

I was diagnosed pre-diabetic before starting this lifestyle change, I should not have devoured the types or amounts I was consuming in large quantities.

Looking back over the time that I was bingeing I see a pattern, I was depression eating. Or maybe I had given up and didn’t care if I lived or died.

I cared, but I didn’t. It mattered, but it didn’t.

Today something in me snapped.

Either live or die, but pick one and choose wisely because I am loved and this isn’t just about me.

I threw foods into the trash, I fixed me a healthy decision to eat.

I don’t want to feel the emotional guilt, I don’t want to feel so bloated I cannot bend over. There are so many things I don’t want, but I don’t want to die is number one.

So here I am months later, 190lbs, only 6lbs from where I started from the first time, so many lessons learned the hard way, but I have re-committed to myself, my health, my life and myself to the love of my family who will hurt if I’m not here.

I may have a dozen diseases trying to take me down, I may have a dozen reasons to give up, but I choose to be stronger! I choose to fight back by giving myself and my loved ones the best possible me. That is something I can take control of.

I need to remember that while others feel the physical benefits of loosing weight, I am not on their journey and my benefits will be different. My journey is mine. I am preventing more illnesses by making better decisions.

I will not achieve the 145lb by 6/1 like my original goal stated. My goal has nothing to do with numbers.

My goal is to change my mentality about food, to think of it as fuel not therapy or whatever I was thinking.

Yes I will weigh in and be excited as I go. I will not base my success on that. I will base my success on the decisions I make!

With all of that said, I am proud to say that I am still smokefree.

Maybe It Is Time~

As you probably know, April is Addison’s Disease Awareness month. I share and post awareness like crazy. Awareness saves lives! But there is a piece of Awareness I have been hiding from.

Yes, hiding from.

I am on a decent regimen and for the most part my Addison’s Disease is maintained. This is and has been a challenging place to get to, so I haven’t wanted to or allowed it to be messed with.

My general doctor has wanted to send me to an endocrinologist on multiple occasions but I say “oh I’m doing okay let’s just keep doing what we are doing.”

I’m scared. I’m scared to change what has taken so much to get where I am now. I have not heard many good things about endocrinologists. They dangerously mess with medications and schedules, not because they are trying to hurt us but because they don’t know much about Addison’s disease. I’m scared to mess with what quality of life I do have. I don’t want to get worse again.

But…

With that said, I have seen so much during this months Awareness posts, that I have began to question many things that I should already have the answers to.

1. What caused my Addisons Disease?

2. Is is Primary or Secondary?

3. What else am I deficient in that could improve my quality of life?

4. Why haven’t we looked into any of this?

I’ve gone back through what records I do have and cannot find test results for some of the tests that determine if it’s Primary or Secondary. And I know I haven’t done some of the major tests because “if the treatment is working why are you asking questions”

But I am asking questions now. I’ve learned a lot about this disease in the last few years and the answers to my questions are important.

I’ve recently joined a group that I would like to volunteer to be an advocate for, but I think it’s important that I know more own story before I try to advocate or educate anyone one on it.

I don’t think much changes, if anything, regardless of if I have Primary or Secondary, at this point, after reading test results from “back then” I thing I have Secondary and not Actual Addisons Disease. The treatment and precautions are the same, I honestly don’t know what will change.

But it is time to find out. Time to find out what causes my Adrenal Insufficiency, because that is a for sure- I am insufficient in the Adrenal biz. Lol.

No more being scared, it’s time to find out the details. So tomorrow, if tomorrow is a brave day, I will call my general doctor and agree to see the endocrinologist like he has been wanting.

Wish me luck!

Updated & Revised Hotlist of diagnosis~

An updated and revised list…

I repost this every few months for new readers and friends. It is not a sympathy post in any way! It’s mostly to let y’all know what I do have in case you have it to and have questions or comments. I post it for friends because a repost is easier than listing it all off again. I also repost during awareness months…

*I have to admit, it was so discouraging to update this list. I remember when the list was at 7, 9, & 12 (where it stayed for quite a while,) and today more were added.

So here it is.

What is wrong with you?” Is a question I am most frequently asked, it makes me cringe because where do I even start? Usually my response is “I am an autoimmune train wreck!” But for the purpose of this post and those who I am encouraging to read it, I need to be more specific. Here is my list of diagnosis’ currently, if I’ve remembered them all:

The Fabulous Fifteen.

1. Addison’s Disease

2. Fibromyalgia

3. CFS/ME

4. Osteoporosis

5. Osteopenia

6. POTS Dysautonomia

Multi-System Degeneration of the Autonomic Nervous System

7. Hypothyroid

8. Hashimoto’s

9. GERD

10. IBS

11. Chronic Myofascial Pain Syndrome

12. Scoliosis

13. Hypoglycemia (autoimmune related)

14. Pre-Diabetes

15. 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 right wrist may require surgery but won’t know until Friday.

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.

Of all of my existing diagnosis’ I also make the “Rare” category with Addison’s Disease. I believe adrenal insufficiency is more common than “rare” standards but that is for another post. Addison’s disease can be fatal if a crisis is not treated correctly and quickly, but because it is rare, 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.

145×6/1

145×6/1, that is my goal. To be at 145lbs by June 1.

I not only fell off the healthy eating wagon I traded it for anything with carbs and lots of them.

I think I recently posted about the carb intake.

Anyway, I am restarting my healthy eating diet plan/ lifestyle change on Monday! So I give Sugar and Carbs a HUGE going away party.

I have ate so much this weekend that I seriously feel like I am about to pop! So take that sugar and carbs craving- you are going out with a bang!

My perspective is different this time, my Whys are different! It’s not that I cannot have certain foods, it IS that I CHOOSE not to have those foods. It’s not that I’m eating the fuelings to survive, I’m eating them to be healthier! I am loosing weight because I want to look and feel better and as preventative maintenance so I don’t get more new diagnosis’.

*I started this post hours ago so consider the following Part 2.

I am so sick tonight. Self induced sick. I ate to much crap. My belly is gurgling so loud it’s coming out of my throat- like burps but not. It was hilarious at first then just got irritating. I’m so bloated my skin hurts.

I’ll do my first weigh in tomorrow morning. I’m preparing myself for disgust about how much of the weight I lost that I had since put back on! And why did I go off the diet? I’m a stress/anxiety eater. Life got crazy and I had no control over anything going on.

Realizing why I eat like that was quite an eye opener! I never considered myself as having a reason except I like food.

Anyway, tonight I am miserable and even more so knowing I did it to myself. On purpose.

But tomorrow morning all of that changes.

Tomorrow is day one to a healthier me, body mind & soul.

I have a whole new understanding of why people struggle with eating to much. You are not alone. But you can/we can get control of it. It’s not going to be easy, call it Fierce Love.

Let’s do this.

145×6/1

I’m Not Even Sad Anymore~

I’m not even sad anymore

At first I sat in the truck and cried. “Why me?” “Why more?” Then I burst out laughing, “why would expect anything different?” And now, now I’m mad.

I’m fighting mad.

This autoimmune fairy, the health fairy, or the disease fairy, they hit like bitches. They throw all this little shit at me, taking me down step by little step, adding to it when it doesn’t kick my ass!

*image from memegenerator

Well guess what?

I am a professional patient!

I am a Warrior!

I am a badass chronic hot mess and I keep on keeping on!

Okay. Deep breath!

I went to the doctor today for unusual wrist pain. I’m being referred to an Orthopedic surgeon. Tendinitis & Carpal tunnel syndrome! (I’m laughing again- couldn’t just be one or the other, couldn’t be just mild, had to go big!)

This will be my first surgery since being diagnosed with Addisons- nahhh I ain’t scared- I’m a badass remember? (I might need reminded later!) That is a 6week recovery estimation- 6weeks of being even more useless than I already am!

Thing 2!

This is little, just an irritation but still- I need to have both big toe nails worked on due to infections from ingrown. Most people’s bodies would be able to fight this off but ohhhh NO, not mine, because “You are on Hydrocortisone”

Blah-de-freakin-blah

So that’s a different specialist.

And I learned something…

hypoglycemia… Everyone technically has had or will have hypoglycemic episodes in their life, even possibly need to be seen and treated for it. BUT that does not mean they actually have hypoglycemia. I did not know that. It’s “just” a low blood sugar episode. There are many “types” of hypoglycemia- related to the underlying causes.

Today I was diagnosed with autoimmune related hypoglycemia. Thank you Adrenals! *insert a smack to my non working adrenals!

So these tremors I keep talking about, are actually my blood sugar dipping to low. The worsening confusion. Yep- all related!

Oh but my education didn’t stop there.

Remember me loosing all that weight on the awesome diet? Well my body got used to being treated right and eating every few hours. When I went off diet I stopped doing that, sending me into hypoglycemia hell and I’ve been unknowingly trying to recover with the consumption of 4sandwiches per sitting or 10biscuits with dinner. The thing is that it takes 15minutes for my brain to get the message that I’ve eaten, so while I’m shoveling in the carbs the message is taking its time getting to my brain to tell me to stop eating!

I’ve gained 12lbs in 2 weeks trying to recover.

I had already planned on restarting the diet, but now HAVING to eat every 2-3 hours makes it non negotiable.

It’s a cruel joke to give someone who has mobility, gravity, and stamina issues diseases that require mobility and stamina. Seriously- the energy it would take to make and eat healthy every 2-3 hours? Cruel joke. Just cruel.

Non-diabetic hypoglycemic dieting. A new one for me.

And just for kicks the health fairies threw in Hidradenitis Supperativa, guess what? It’s chronic and has no cure! *laughing again!

You can read up on it here.! This chronic-ness is NOT invisible and I wish it was! It actually wasn’t a surprise diagnosis; I’ve made a new friend and she had posted about it on her page (see- Awareness posting works!) any way her and I had suspected I had it. But to see it in my charts was kind of a kick to the emotions.

Seriously, I don’t even know what to say anymore. It’s always something new! More to medicate, new specialists, new treatments, new things to accept and live with. *laughing has stopped and tears are falling* Will it ever stop? Will I ever be able to just deal with what I already have?

It is what it is.

Okay on a better note. I’ve decided my next tattoo. It’s a Sooner than Later goal.

*unsure of original artist but credit is to them.

I’d change a few things, that will be a surprise to show off instead of tell! This idea meant a ton of different things to me, even before today’s visit. So it means even more now. I just need to start dropping quarters in the piggy bank!

Speaking of saving money. 2months and one day since I last smoked a cigarette! Yay me!

Anyway- I’m not even sad anymore. I’ll just keep on keeping on.