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!

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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.