I am pure Chronic-Hotness~ or Hotmess? “what does she have?”

Every now and then I update the nastiest NINE list, just so you don’t have to wonder “what all does she have!” So here is that update! 

These nine are just the nastiest! I have plenty more diagnosis that go along with these! Most of my type of illnesses have tag a long diagnosis’ like; chronic dry eye/mouth, IBS, chronic insomnia, Raynaud’s phenomenon, depression, anxiety, vision problems, neuropathy and so on. 

Anyway, here is the updated answer to “What does she have?” 


Addison’s Disease~ letter to my friends and family! 

As Aprils Adrenal Insufficiency Awareness Month comes to a close I want to post this one more time. 

I wrote this and posted this to my Facebook one year ago, oh the things I have learned since then! This letter is a compilation of things from groups and my own experiences. A long read, an important to me read:

“I was told early on in my Adrenal Insufficiency (Addison’s Disease) diagnosis that I needed to educate the people in my life about how life threatening this can be, but I didn’t do that because maybe I didn’t truly understand the severity or the dangers of my own lack of knowledge. 
My doctor told me to avoid anyone who had colds or flu symptoms, told me to ask before I visited with people if they had been sick. I did not realize the importance of his warning.
A couple of months ago I joined an Adrenal Insufficiency support group online and in those couple of months we have lost several members due to Adrenal Crisis! One started as a flu, one as a cold, and it happens quickly! I’m watching one mother heart breakingly face her daughters vegetative state due to a crisis induced cardiac arrest, her daughter didn’t feel well and sometime during the night the vomiting started! Her daughter was not expected to ever recover (however is in home care now.) 

Seeing the severity and dangers made me want to tell you the truth about this illness, for my safety and your understanding. 

It is DANGEROUS and escalates quickly! 
I’m posting this because it could save my life. As many of you know I have Addison’s Disease, Adrenal Insufficiency. In healthy individuals cortisol is produced throughout each day and is released in response to any sort of stress. Even lifting your arm uses cortisol.

 I do not produce cortisol the way I should. For me, the fibromyalgia (and other previously diagnosed illnesses) intensifies the risks I face with Adrenal Insufficiency because of the stress, pain, depression, and many other symptoms that can in turn cause low cortisol & even crisis! Even a broken bone from the Osteoporosis can send me into crisis and be fatal. 

I take medication several times a day to put in what my body does not make on its own, I have not missed a dose, but I do know that not taking it on time will make me terribly sick! (At this time I have missed doses and can attest that I do indeed get very sick!) 
 An adrenal crisis is a LIFE THREATENING EMERGENCY and must be treated aggressively! 
In addition to the daily struggles Adrenal Insufficiency is very dangerous for me, especially if I get sick or hurt, If I become ill, unconscious, or am in a car accident, etc., it is almost guaranteed Crisis! 
I am asking that if you are with me and I become ill, am vomiting or unconscious, that you do not hesitate to call 911 (and give me my injection immediately) I am required to wear Medical Alert bracelets and keep my information updated on them. Without the extra dose of medication (either by IV, Injection, or by pill) an adrenal crisis causing shock, heart failure, coma and even death can occur very quickly.  

Thank you, friends. Please do not hesitate to talk to me about this, in fact I appreciate the questions because to me it shows not only that you read this, but that you do want to know more. I deal with adrenal insufficiency on a daily basis and it is on my mind almost all the time. I appreciate you helping me. Hopefully emergency precautions will never need to be used by one of you but I would rather be safe than sorry.

Thank you for reading this all the way to the end! 😘”

That was written as I started to realize the seriousness of Addison’s Disease! When you see me you may think I appear healthy, some days are good and some are bad, but a good day can turn bad very quickly. You may see me start to shake, fumble for words, loose my balance and think it is funny, I assure you, it is not funny- it is a WARNING SIGN! 

Since my diagnosis I have seen so many loose their life and come too close to loosing their lives to this Disease! I know spreading awareness may mean nothing to you, and I pray it never does, but what if it did? What if it was your loved one? 

Throw my thoughts in a blender and take the lid off while they still spin~

I feel like life lately is flowing smooth and whirlwind spins at the same time. I am exhausted yet a new passion is driving me forward (I will explain that in a minute.) The last few weeks have been emotionally turbulent, highs and lows, worries and relief, happy and bitter. To even try to straighten it just confuses me more!

I am blissfully exhausted! 

For a few years now I have dabbled in making herbal lotions, trying to be a self taught herbalist! I never pursued it because, well, honestly I didn’t believe I was worth the effort; just another failed attempt! 

Little did I know I was already on the path to where I am now. As life does, one thing lead to another- or in my case, one online class/course leads to another. 

It is hard to explain what exactly happened or when exactly it happened, but in this amazing course about finding my purpose and being authentically myself,  a fire lit inside me to pursue the herbal dreams! And this fire is roaring!!! 🔥 

This class is a challenge for me because of my memory and reading retention, so I make tons of notes! I study between naps! I research! Trying to make the information stick. Some of it must be sticking, I passed my first quiz today! I am learning so much! I have no intention of making teas anytime soon because there are to many possible interactions between herbs and medications! So that will wait.

Oops- I got sidetracked! 

Anyway… I wanted to talk again about peace of mind! I know, I know, we have all heard “if you would just be more positive…” I am not going there! Where I am going is to that secret place where we go when suddenly something changes for us emotionally, acceptance? Maybe! But with that is more more important component; taking back control of our life. 

We don’t really have control over what our health does, but we can learn to work with our emotions over it. We can learn to not be consumed by an illness that will do what it wants regardless how we react to it. 

I am not saying be more positive- I hated that said to me! Maybe what I am saying is distract your emotions? But more over, I think what I am saying is there are ways to not let the disease control you! 

I take online courses, I love them! Sometimes I do good and am the class overachiever, other times I can’t make the computer mouse move. Sometimes the fog is so bad that nothing makes sense and I ask the most obvious questions. 

I have completely lost the point of this post! 

Instead of trying to make any sense now I will say this, we can still find happiness despite our  health. We can still find things to be passionate about. We do not have to let this Disease control, consume, and swallow us whole! 

Find your fire! 🔥

It’s a Spoonie thing~

Most people would laugh or think I am bonkers for the what you are about to read! *I am not claiming innocence on the bonkers thing! 

Anyway, two exciting things happened today that I think only a Spoonie would understand… 

1.) check out my new med bag! 

Yes, it is actually a cosmetic bag, but it’s cute right? And is deeper than my old one so it actually fits everything! 

Ok now for the biggest excitement… *que drum roll*****

As someone with Addison’s Disease I am supposed to carry an Emergency Injection kit in the even of a Crisis! Well, as thankful as I am to the doctor who was knowledgeable enough to diagnos me, his form of Emergency treatment is call him and head to a hospital. In the event of a crisis I will not be coherent enough to make a call, and who will answer his office number at 3am? 

I am now seeing a new doctor and guess what?

^^^There it is!!!^^^ 

I pray I never need it, but I would rather have it and not need it than need it and not have it. 

It is such an important tool for anyone and everyone with Adrenal Insufficiency to have this Emergency kit, so many lives could be saved if doctors would prescribe and educate… so many lost to not having it. 

Anyway, there is my excitement!!! 

Happy Sunday Spoonies! 😘

A New Normal~ maintaining control! 

It never occurred to me how happy I would be when the doctor decid d we could start spacing out my appointments! It was normal for me to go often; it started at a couple times per week, the weekly, then bi-weekly, then once a month which is where it’s been for over a year! But today the doctor said magic words; “we will see you for blood work in 3 months!” 

Three months?!!! I did a happy dance, my voice was not hiding the giggle bubbling inside me, I told the nurse, I told the receptionist, I told Chris probably 10 times, I told Facebook that MY NEXT APPOINTMENT IS 3.5 months away!

Now that the diagnosing has been done and verified and double checked my life settles into a new normal, maintaining control! This is bitter sweet news for me because it means this is what it is and I must learn to accept that! But it also means that I can find peace in my new normal! 

The new normal might take some time to adjust to, like I said in the past, I kept thinking I’d find a doctor who could make me into the old me again- that just isn’t going to happen. 

Today I finally press the play button on my life, it’s been on pause way to long. 

Day 1~ abounds with blessings! 🦋

The Price I pay~ (I’d pay happily)

I posted yesterday about how good things have been the last couple of days, I spoke to soon! Well, I didn’t actually speak to soon, I wanted to have good days while my son was here and I did, that prayer answered, for that I am thankful! 

BUT, I kept pushing! Everyone kept telling me to rest and slow down, but who can slow down when things are actually good? My response kept being “I am taking advantage of good days!” I wasn’t sure how long the good days would last, so I pushed it. I pushed to hard! 

I knew I had pushed to hard (or stopped uprising to soon) when last night the big d started! Then I woke up at 3am in pain, headache, and nauseous! I took 2.5mg then and went back to bed. At 8:30am this morning I woke up in screaming pain with cramps in both legs! Even now they feel like knots in my calves as I walk! The headache and nauseous are still making their presence known so I updosed again (2.5mg.)

I am still beyond grateful for the good days! This is a price a pay for them, I know that, and I’d pay it happily! 

Today is a rest day! 

Image from Pinterest

A Blessing~

It isn’t very often I am thankful to my health, but today and the previous few days I am thankful! What a weird thing to say right? Well it’s been a weird few days! Days I was not expecting…

I actually remembered to updose for this visit, the day before and during! Remember I was having company for a few days? My oldest son and his amazing bride to be.

I also ate pickles and drank aujus sauce 😂

So here is the weird part… I HAD A GOOD FEW DAYS! 😍☀️✨ I started slowing down the day before they left, but understandably so- we were busy! 

So you see, I had so much to be thankful for! I got to enjoy the visit more than fight my health!