This is me at age 11. This would be the last time I wore a fitting tank top or jeans until I became a mother because I was not prepared for men.
This week has been challenging. My family is transitioning back into roles that we used to do differently. Transitions are always difficult for me.
I’m now far more solo with cancer stuff and I’m still sick (and now have Covid) so my fear is something I have to barrel through. I am worn down, lonely, and tired of succeeding while looking at the same four walls and confused pets.
My war-torn kiddo is in her senior year of college & all of the feelings that go with school; graduation, her future, and — the mom she stopped her life for to make sure she could ONLY worry about life-saving things that were so obligatory — the drive to succeed was always force-felt by all.
A lot of cancer and ugly diagnoses made me have to barrel through feelings I hate but had to decide not to honor because I HAD to survive. Survival mode is very black & white.
That is placing me at risk of growing a callous to how difficult everyday life is for everyone else.
This is also very hypocritical of me because I know full well how difficult real, everyday life is; period.
That is something I need to put in check IMMEDIATELY because, before long; I’ll be the person who compares traumas like traumas are comparable.
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.
It’s been a week, let us tell you. After a CLUSTERFvCK of misdiagnoses and unnecessary pokes, thousands of dollars in co-pays we will have to deal with fighting through Cigna for imaging never even correctly ordered, here we are.
The video will say what happened at the most local hospital we barely trusted before. No idea how excruciatingly shameful that hospital made me feel. I was “full autistic,” and unable to do a darn thing to turn it off.
For hours, I was violently ill with tachycardia running into the 150’s for decent stretches of time. We can barely talk about it, minus shaking our heads and begging our beloved NP never to send anyone there again.
The photos of relief are relief because of a provider going above and beyond for her patient and former peer who she trusts. Even when I was in her office (see the picture with the visible spasms in my neck) and couldn’t open my eyes, had a HR of 157 from pain and the lights just being excruciatingly too bright; she remembers who I am and WAS before life shit on our chests in EVERY SINGLE CAPACITY in our house in 2020 and we’ve barely gotten to breathe.
I respect her and she values me for who I am when I’m more capable of serving others. She knows and she cares for a broken hearted former nurse who can’t do much now but cheer strangers on on social media. I so appreciate her. She’s wonderful and I now make sure she treats my husband and baby girl.
Christina Husemann, NP saved my husband and I from being forced to keep begging God to make it stop. Once I’m asking God if He is mad at me for not letting me breathe, literally; the pain is past the point of reckoning.
I have panic attacks now. That’s fairly new. It happens pretty easily so when your entire chest from your jaw to your iliac crest in your hip are locked, it pulls your diaphragm and pulls your obliques so tight that your gut motility stops. Add vomiting to esophageal rupture and it was more pain than 64 hours of labor with the cute girl I made.
This week, I’ve lived in the tub. Our water bill will be ridiculous and it will have to have been worth every overpriced penny. It was the only relief I got. After the bath, I’d sit in front of a space heater for several hours to keep my muscles hot. My fingers are raw from massaging myself. Timmy does it, but I’m SOOOOOOOOOOOOOOOO much better. My daughter is amazing, too. I digress …
I have internal and external whiplash, autism that a troll on social media keeps saying I’m lying about for some damn reason 😂 and the anterior part of my neck is so spastic, I can’t speak well because just the movement of my vocal chords triggers a ripple effect of tiny spasms that lock up entire muscle groups. It’s maddening.
My family grew together this week in spite of exhaustion, pain, failed Christmas breaks, rage, terror, prayer, my husband physically laying on top of my back for HOURS on Saturday because I couldn’t stop shaking from pain and fever.
I couldn’t take Propanolol safely so he, a man who barely breathes when he is tense, helped remind me that I DO know how to breathe and meditate very well. He carried me into the tub we didn’t have last year because our house drowned and we had no bathroom.
I asked him if God was mad at me, and his relatively agnostic heart told me my Father was not and He was there, too. He then put on my Bluetooth speaker so I could listen to Brandi Carlile sing to me that if I just layed in the tub and went somewhere else, I’d breathe soon without trying not to panic.
I don’t know why I wrote all that, but since I cannot speak very well; I use the one voice I continue to only have. I use social media to connect, find work, make friends, feel like I am saving lives again; there’s SO MANY reasons why I am everywhere.
Someone said I was attention seeking, once or 1,000,000 times. I told them I had notifications off on my phone for about a year and I missed two phone calls from the same person, ONLY. I don’t know what my voice out there is, but I know it matters because I have been, and will ALWAYS be an advocate. I’ll fail at doing it and I’ll say, “fvck,” too much.
It doesn’t hurt very much, however, when someone you know is invested in you being a more whole human says, “Oh my word. Do I ever fvcking love you?!” ♥️
Be kind. It’s an order from the “fake” Queen Buttercup.
Queen Buttercup Speaks 