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.
1. Adrenal Insufficiency (Secondary)
6. POTS Dysautonomia
12. Chronic Myofascial Pain Syndrome
14. Hypoglycemia (autoimmune related)
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)
Neuropathy in both feet
cognitive impairment due to illnesses,
short term memory disorder,
insomnia and missing stages of sleep,
multiple deficiencies in vitamins and minerals,
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.