In the middle of seeing what autoimmune thing is making me disappear, my boob went and caused a stir and the biopsy thing on 9/28 just hovers in the back of my head as needed. I’m not a big fan of the attention seeking Mr. Lefty is seeking when the rest of me is not cooperating even a little.

It’s pretty clear my left boob is working for the dark side and the Jedi inside of me have done nothing but hang out at that weird canteen place and have no idea what they are supposed to do anymore. All of me is starving, not hungry, tired, full of life, and dying to know why I aged 50 years in five minutes.

I feel like I’m in hell seeking the memory of rainbows and even though I tell others how I still see them, I’m just saying the words out loud so I can fake it until tomorrow again. Again.

Today, I learned needles filled with steroids may help my trachea if a provider wants to jab one in my throat from a 2011 case study a provider unable to do that for me found. A lot of my specialists only make diagnoses BASED on other specialists so this isn’t a “How’s the CORRECT treatment working for you, Beth?” conversation.

I won’t know what the correct treatment was until it’s the correct one about 11 people too smart for their own good can agree enough on to appease the curiosity of most.

One disease is 9/1,000,000. Another is 1/100,000 but met a significant birth defect caused by an underlying autoimmune or genetic condition. Both those conditions are ruled in or out by clinical manifestations OVER TIME and pictures, medical records, bla bla bla.

I met all 6 manifestations for one. I still do.

I also hit a tree in January. I had at least two severe concussions, one for an unknown length of time. I didn’t receive proper medical care at the time due to said concussions and I only had more than a belly CT and shoulder x ray, at the time. I suffer now because of it. There is no way to say that I don’t need to forgive myself the belittlement of my own value at the time. I feel so dumb.

The dumb never comes to me. My anxiety makes me hyperverbal and my exercise tolerance is so low, my pulmonologist thought the technician had messed up. She didn’t. I felt it and found my inability to be almost panic inducing. Panic: a feeling I refuse to engage to the point I feel almost catatonic inside. I truly feel robotic in between moments of utter panic of what everything means and where anyone is.

A time lapse video of me struggling to survive in my skin made my pain management doctor as me what I wanted for pain. I once quit pain management simply to be happy. It’s amazing how turtles adapt to boiling water over time.

I had a radical surgery to have a baby and it changed me so fast that I lost all sense of “normal.” Stringy muscles just felt wiry and when I saw very skinny people before, they sort of looked wiry so … what did I know?

Complaints of skinny armpits I was unable to shave because they puckered in, those got shared with my provider. I don’t know how saying it twice along with massive shoulder pain got missed, but the “internal degloving” injury seemed to get periodically addressed and then suddenly I was dying in July of now year.

I don’t know how one wraps their head around this, but I’m glad my new therapist went to Brown and is on Zoom this week and eager for my challenge. I guess I still see God in this daily, even when it’s just to admit I’m grateful for a mirage of hope.

Nothing feels easy. My clothes are never clean when I come home from the new specialists who own my time and my husband’s money. I tried to start a new job in July, but this job now owns me and I’m raging into the wind some days hoping my scream travels somewhere God is listening. He is, but the tinnitus in my ears rings too loudly to hear Him singing me to sleep at night.

He’s there, but I’m not always capable of feeling the peace I’m supposed to since the peace is so difficult to find and if I stop prying in between my ribs and neck, the next breath feels like the last.

Today, driving to pain management, a place I’m so grateful for now; I had the air conditioning on a few degrees too cold or … too fast or too something. My pointy, broken Xiphoid process spasmed so hard and fast, my right forearm twitched and my shoulder blade released a knot I’ve had since October of 2022.

I felt a melting in my right breast and it felt like my pectoral muscle unwound. I can’t explain it more without sounding psychotic, but my daughter and I both just looked and felt a former size A-post-tree-impact breast fill to a decent C. There was a deep scar from a breast reduction at age 19 that months of steroids softened and it unwound to the back of the same shoulder. It’s so weird.

Whatever part of whatever this is has a fun thing of turning every stretch mark I have ever had into deep, painful cables that feel like they choke off and surround every bony prominence they touch. (Future diagnostician, please don’t let me forget to mention that.)

One doctor said, “The issue is, people just aren’t used to seeing people that sick and it requires work.”

This disease process is hard. I’m struggling to feel okay with so much body rebellion occurring at once and apparently admitting I’m frustrated and tired and tired of being frustrated and tired is unappealing to those who like my dad jokes so let me leave you with one …

Knock knock.

Who’s there?

Is this over yet?
Am I better yet?
Can this stop now?

How did this replace my job for one day at a weed dispensary? This job doesn’t pay and I quit this job. I don’t like it. I hate it and I am having a moment I get to have because I want to feel better and every breath feels like 1,000 knives in ny chest trying to cut out of me from the inside out.

P.s. I meet the thoracic surgeon tomorrow and am volunteering as tribute to do it on YouTube if I get to cut in line.

Thanks for letting me vent. Some people recommend I be committed. If that helped, I’d do just about anything. It just, unfortunately, won’t.

Funny thing is … desperate feelings are lIke amazing feelings; fleeting. I won’t remember typing this once I release it into the universe. Again, I see God daily in this Hell.

I used to sing this song in church when people told me I mattered. I miss feeling that way. I will see gold because feelings lie when you haven’t slept since January.