Queen Buttercup Speaks

  • Happy 45th to Me; a butterfly with nervous sugar wings avoiding the rain clouds of chemotherapy

    Thank you to the Breast Cancer Fundraiser for my warm feet and warmer heart before chemo

    Every morning this week I woke up with the same dream; my hair was gone as I woke up. It was all over my pillow only no one was home to carry me through that moment I’m fearing. Same dream. Same exact dream.

    I only have one other recurring dream, but I’m not talking about my teeth all falling out without someone holding my hand. (I kid, but that’s a creepy dream, too.)

    I’m freaking out off and on as my hair falls out and sort of gets sheered off by rubbing. I am nine days after my first round of chemo. I am eight days after my Neulasta injection. I am officially a radioactive middle ager.

    This dream I have; this nightmare, it has shown me how much I identify myself with my hair. My brain SCREAMS, “Only long hair is feminine.” I was raised as Mennonite and then just raised as a woman.

    I am a 45 year old (in 3 hours) woman with deep programming. (I also was sent to the barber as a kid so I have a confusing relationship with my hair.) Once I had the ability, I grew it to my waist. I only cut it a few years ago after weight loss made it thin and uneven.

    Hair is discussed a lot in the Bible and covering it or not covering it during church was debated. EVER having it short voluntarily was not even a topic to debate. Women had long hair. Period.

    If women had cancer, as a Mennonite kid; I didn’t notice. I missed a lot though. I remember older Mennonite women with significant receding hairlines from right buns, but never noticed anyone bald.

    I am very much in my feels today. Tomorrow, I turn 45 and only a few outsiders have visited since I got my diagnosis. There won’t be a party. There won’t be the distraction of life, even for a few hours for a birthday that felt landmark to me.

    45 is the halfway point, I always thought. 50 felt too hopeful, but 45 felt like a half-way point I could obtain.

    My husband made me a pink cake because this is the year I ring a bell after finishing my cancer treatments.

    I feel like I’m sick and getting older in a glass bowl as a fish. I am in a bowl that no one can interact with, everyone can see; but no one is able to step into to sit with me in the suck of cancer and chemo.

    I feel the chemo in my emotions and brain. It’s like a bath that never ends and the broken version you felt like yesterday; you now miss. You also forget to miss your higher function and lack of emotions self, because chemo brain makes you forget everything. You feel physically slow, but mentally you feel like you’re walking through Jello that’s been in the fridge for two weeks.

    The brain fog feels like someone took all of the proud parts and put me in a cotton candy maker and swirled me around. I feel fragmented into strands that all look sort of familiar, but aren’t structured the way they’re supposed to be.

    I look tired, but somehow not just tired. I look sick, but the sickness inside is more sick than a bald head can even hint at.

    I don’t much recognize myself at the moment.

    I see me, don’t recognize this version of me, and it’s happening in front of mainly an audience of two. That audience has had to be my right hand since January 6th of last year. They’re tired by now. I’m tired now, only chemo doesn’t care that my body wasn’t in prime shape to tolerate consensual poisoning.

    That’s chemo fog.

    My brain is currently being traumatized and bathed in chemicals along with my body. I feel it and acknowledging it actually removes the power of it.

    The chemo ends by March 1st and that round will be the worst and last. Hopefully that round will be the last one EVER.

    A month after that ends, radiation starts five days a week. My insides will be both healing and receiving more damage to a chest wall that was born with a birth defect.

    I noticed I was sick, ultimately finding cancer, after my birth defect got worse at age 44.

    By May or so, I’ll be just me recovering from all of it. If I start of act differently, know that chemo changes you on a cellular level. I may actually have some permanent changes or changes that take a long time to return.

    Hang in with me and it’ll be very interesting; if nothing else. My story may get weird. I need to start writing because chemo brain impacts your memory and ability to take in new information without getting hit by panic.

    Learning new things or having to make big decisions right now feels like nuclear science. I feel like I have the available intelligence of a college kid at Chico State during spring break after they developed a concussion.

    Sometimes I stutter now. Sometimes, I can’t find the right word even if I’m holding the object in my hand and the object is a can of soup. It takes me dramatically longer to do basic tasks than it took a month ago and a month ago, I had trouble.

    Thank you for loving me and reminding me to stay kind inside when my brokenness was more anger-filled and unhealed. This version of me is just mourning and has become Ten-second-Tom from 50 First Dates.

    This part of me is broken, but also more whole. I am a lighthouse for misfits, but I’m also deeply diminished and struggling to find an IQ that even I found pleasant to have. That means much less now. I couldn’t remember what a straw was called yesterday.

    “I don’t mind getting sick, as long as I have my mental faculties.” Who hasn’t said that? I did. Currently, I cry and it looks irrational if you haven’t been following along. I make perfect sense once you get to know me.

    My last set of tears came after a sip of something with citrus. The radiating piercing in my jaw and glands made me look as ridiculous as someone sucking on a bag of War Heads.

    Science has the ability to cure cancer. The tricky part is keeping the patient alive while you cure it.

    Tomorrow is my birthday and I am a shameless supporter of others. It would mean so much to me if you knew how much you mean to me.

    Our banters and boosts and blankets of support are the difference some days. I am not doing my best with updates, but I’m also not in a place to put much energy outward.

    I ♥️ you, those who read, write, and hold me close. You sustain me.


    Cancer treatments are cruel because cancer demands they be. It’s very challenging.

    I hope this update helps.

    Some of the bravest people you know cry significantly more than anyone thinks. I know because the more I cry, so long as I keep moving forward, the braver people seem to think I am.

    Courage is not about a lack of tears. Courage often is the fear met with determination to build an oar out of your own bones, if needed, in order to row upstream from why your tears are occurring in the first place.

    This is my husband who made me a cake with pink cream cheese icing and candy because all 45-year-old women need pink cakes to help kick cancer in the teeth. He has never baked me a cake before. This was such a nice present.

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  • My dark wolf

    Sometimes I grow tired and in the battle between my good and my evil, the darker wolf inside of me comes to life.

    When I am rested or in actual nature, rarely does this wolf present itself. There are moments, even then, when I grow frustrated over a battery dying on my phone and I get anxious and edgy and unable to be soothed by anyone, but myself and time.

    I can beat that wolf away with just a glance. At most, it takes a strongly worded statement of certainty that the wolf would not be entertained, even if it was present in the background.

    When I am tired or when I feel so scared that I scratch while I look for the closest, safe person; this wolf comes alive. I thank God I’ve identified it and can breath squarely or feel grass under my feet to make it walk away.

    Since I got sick, I became fearful. When bruises show up for no reason and you fall down the stairs with tanking blood pressure, absolutely everything feels scary. The joyful part of me is hiding and I drag it out forcefully hourly most days.

    That joy feeds my better wolf. Love, companionship, laughter, and stillness all feed the part of me that needs to live the most. Hands that could bat away haunting accusations or misunderstandings are busy rubbing bones that feel like they’re breaking, as some of them have been.

    That dark wolf has a tongue and it doesn’t desire flesh and bone, it demands the final word and it demands immediate explanations that will never come.

    The dark wolf exists in a nightmare. The things it truly seeks; those things do not exist. There is no resolution. There is no clarifying comment that will unring a bell that time has made sound more and more off key.

    What was once a genuine sting became a gaping wound; no words can fix a gaping wound caused half by your own misperception.

    Left to the course of nature, the worse wolf will live as it destroys those around it. Most worst wolves do not roam freely in the street.

    Mine is hidden until moments of exhaustion or over stimulation. Anger sits like hot coals in my belly so those are the times I sink and grow silent and withdraw into a cave that feels distant, but cold. I erupted momentarily and killed that wolf; I hope.

    That wolf’s fuel is poison and misremembers good because bad was so much more impactful. The worse wolf is a ferocious martyr, lying to itself about how to get off it’s own cross.

    The dark wolf runs on feeling alone and cannot be honored in moments of uncertainty. Feelings make an amazing guide when you’re centered, but will devour your decision making skills if honored, when in doubt.

    Feed your better wolf, me. Yes, you.

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  • It’s a Club like I’ve Never Known

    Forgiveness is funny. Some require a certain level of remorse or sacrifice in order to pencil in an appointment in order to come to the table to discuss the possible terms and conditions of a future forgiveness venture.

    Others aren’t so tricky and just require the lens of current circumstances to realize that relationships need to be tended to in order of what’s on fire, not in a chronological order no one will ever agree on.

    Some see a matter of life and death and put a pin in the fight, into “the thing” no one fully understands; only to know that no mending can take place until “the thing” is handled.

    I know certain truths to be unwavering. When most hear “cancer,” or “chemo,” or “radiation,” they are not inclined to sit on the side lines watching someone struggle.

    I guess it depends what love is to you, but I couldn’t say “I love you,” then watch you drown.

    To me, love runs into a cancer center if it gets a phone call or a confusing text saying “If this is it, I love you.” Love is a relentless pursuer of “How can I help?” Love reprioritizes what is worth holding a grudge over. Love has conversation before it throws out threats.

    I wanted to be accepted for fitting in the same way everyone else did. I eventually just wanted to fit in for how I fit into the universe on my own. Now, I barely take up a corner of a sofa cushion and I’d like to fit in however I damn well fit.

    I will never be talented enough or particularly beautiful enough to make Miss Congeniality. I am currently not even doing cancer correctly.

    I’ve seen Hallmark movies and I see how that one person gets sick and it brings people together because they decide nothing matters more than love matters. The scene ultimately pans out to some snow covered window and everyone is standing around some arm chair while the sick person feels the heat of a fire and a fuzzy blanket.

    My club accepted me secretly in my emails and publicly on forums where they shout messages that feel amazing, but aren’t as warm as a familiar casserole on a night when you just simply can’t rise to the occasion.

    My club calls me family. Family, apparently cannot be shaken upside down like a snow globe, creating a new scene just as beautiful as before where things have simply settled differently. Some snow globes do not have a club house in them at all.

    It’s difficult being grateful for those I may never thank or hold, when words fail me and all I really ache for is the safety of collapsing into the familiar. Nothing is familiar and my most treasured comforts are not weathered and worn, but are new and surprising me daily as they arrive.

    I do not resent the new. I relish the new. Getting sick has been a bittersweet realization that as the new blessings arrive, the bitter feeling left is the loss of a comfort that will never come now that I am not a kid with missing bangs and a Tom boy haircut. My adult cancer isn’t huggable.

  • What is up with this chick?

    “She must be attention seeking, a liar, has the luck of Lot, or is really sick and not lied once about struggling before cancer became king.”

    Some days, I physically feel pain when I speak. The videos I make are some of my only ways to communicate. I get picked on for that. It’s all I’ve got left so …

    Specialists initially suspected Relapsing Polychondritis because I was so sick, had trachea involvement and my voice box was being crushed.

    I also had ear changes.

    Whatever is below cancer in the hierarchy is the thing causing me agony physically. The past few weeks make it hard to do absolutely anything and I’m barely speaking at home. It literally hurts.

    The deep tissue and muscles in my neck at C3 had an injury. Scar tissue grew. It’s connecting my skin to the muscles and the muscles to the trachea rings. It’s a spider web of hell inside my body.

    I also have to figure out what radiation looks like for me and see what my insurance company thinks my life is worth to save them money. Cigna told to expect an immediate denial even though I have a birth defect that makes Proton Radiation my best option to leave my heart and lung alone. It’s terrifying.

    Right now, I live in either totally numb inside to moments of fear or panic. PRN Valium was handed to me with my diagnosis. I didn’t know how right my doctor was that day.

    Cancer leaves a fear you cannot rationalize because it’s all new and has 1,000 variables. Add pain to that level of momentary fear and I feel like I’m losing the best part of myself.

    I love in acts of service and currently, I can’t buckle my dog’s leash or fight this brain fog and lethargy that no amount of sleep improves.

    I’m a fearful fog who others call brave because they’ve either seen it, had it, feared it, or don’t know what else to say.

    Some days, I can’t meal plan. Some days, the 130 miles my husband drives to and from work leave him spent and foraging has become routine.

    Believe me when I say nutrition matters. We’re trying.

    We are walking around grateful for everything and struggling with weirdly normal things like if I’ll have the energy to drive to a store let alone treatment for breast cancer 63 miles north of me.

    I am a cowardly, brave person solely because I won’t quit. I have tapped out needing breaks because I have battled some of the most life altering events one can imagine in a short time period. I’ve regretted most times I’ve quit.

    Once I’m in remission, the battle I have been fighting since January will still continue. I’m more complicated than cancer.

    Sorry if this sounds whiny. It’s because I’m whining.

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  • Partial Mastectomy is Complete So Now What???

    Cancer is a sleep-inducing giant of a monster

    I’m accepting prayers, well-wishes, and advice. A partial mastectomy with the removal of two lymph nodes was only round 1 in terms of battling breast cancer.

    I don’t actually know how many rounds there are because cancer refuses to give you a specific game plan upon diagnosis. After surgery, it’s either radiation OR chemo first and then radiation. Radiation is guaranteed; chemo only if my lymph node biopsies and my genetic screening shows a high possibility this cancer will return.

    Since my surgery on 11/15, I’ve been either napping, sleeping, snoozing, or occasionally full-fledged panicking that my radiology team and I are not prepared for what MY radiation looks like for me. Trusting others entirely is not my strong suit. Trusting medical experts even less so. A lot of experts have hacked me to pieces because they were confident and I was desperate for a return of function.

    The default external radiation many get will fry my lung and heart because I was born with a chest wall malformation called pectus excavatum. Upon my radiologist looking at my PET/CT, his eyes did the same thing all my other specialist’s eyes did … they bugged out.

    Picture a rib cage with about 3” sunk in on my right rib cage so my heart and lung tissue REALLY want to fill in the left side of my chest, placing them directly in the line of fire. I saw the demonstration on the monitor and it scared everyone in the room. I cannot be treated “traditionally.”

    My radiologist and I both, thus far, fully believe that I’ll be more successful with Proton Radiation, Cigna thinks it’s experimental until we show the other kinds of radiation will cause heart and lung damage I won’t recover from.

    As of this morning, my lymph node biopsies aren’t back. I left the radiologist three names of pulmonologists/surgery who said I likely need surgery to have a normal rib cage. I’m hoping the physician’s notes and my previous pulmonary function tests help Cigna immediately see that I need the kind of radiation that brought me to Penn Medicine in the first place.

    I need prayers for:

    Courage.
    Social work at Penn to help me find a place to stay in center city, if needed.
    Ease of getting to radiation five days per week.
    As healthy an immune system as I can have.
    Companionship through radiation.
    Less lethargy and confusion.
    More hope that this won’t kill healthy cells.
    Panic to flee when I know I’ve done all I can do.

    Thanks. Round 2 is coming so I need to be preparing while I heal. It has not yet begun so I don’t know what round 2 looks like, yet.

    This is the most recent update I have to give. It’s not much of one, but this part is critical for me so I’m not hushing when I need more support still.

    People not reaching out for support by waving their arms in the air asking for company while they navigate Hell for the first time, are not me. I’m glad they know what they’re doing. I don’t, minus bits of information being fed to me by providers.

    P.s. (To the scant few who insist on blathering on) Judging me for being transparent in my feelings during an illness tons of people get, seems pretty cocky and if that’s you … stop following me if me vocalizing that I feel like a human dumpster irks you. Seriously, IF CANCER BOTHERS YOU, I get it. If me telling people CANCER IS BOTHERING ME offends you, get a grip and hug your privilege tighter.

    Cancer is bothering me.

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  • Second Opinion for Invasive Ductal Carcinoma

    Weary and pale, the Queen and her army scratch and claw onward; some screaming on the outside, others on the inside. Cancer won’t win here, but it will challenge our makeup and create an immediate pivoting of priorities. Hold your cancer champs closely. I truly never knew.

    We are our way to the oncologist at Penn.
    This isn’t just a second opinion.

    I’m someone whose body would reject an implant and radiation would create such a scar that hEDS would never tolerate it.

    I NEED an advocate to demand Cigna pay for “experimental” proton radiation. Surgery, be it lumpectomy or mastectomy is guaranteed. My grief is exponential.

    Penn is rumored to have an agreement with Helen Graham Cancer center at CCHS, so I am asking for prayers that the CORRECT oncology team for me is obvious, easy, and doesn’t drain more time.

    I went from barely leaving the house to filling my tank a few times a week. The little energy I have goes outside my home. Life means that my kid has to work and love demands she take a full course load next semester.

    I’ll be doing radiation alone, primarily, which doesn’t mean I’m anyone other than the millions of others who also do that. I’m an admitted chicken.

    This drains every resource we have, but let me tell you where God is all over this …
    My family has never been closer in terms of understanding one another and how to support each other.

    My chosen family continues to grow.

    Healing has restored friendships and displaced others.

    My mom is proud of me.

    Vanity, sarcasm, and my penchant to hyper focus on the past have all but fled a body failing me.

    I don’t sleep much or well, but I feel like a cowardly giant in terms of my integrity and openness.

    Some wonder why I live a life of exposure and I can only say that it holds me accountable. It shows the lows so the highs are the celebration of a community desperately seeking joy.

    It shows forgiveness in spite of apology and change; even change started out of spite, can be permanent and true.

    I lost every minor social encounter since around Covid. As the world healed, my quarantine never stopped.

    It turns out, I adore videography, photography, and editing. If God heals this neuropathy and I can feel my fingers again, I hope to improve.

    I want to write. I want to save the world and buy them a Coke and hold hands across America and sing We Are the world. I want to pretend one evil man didn’t divide our country. I want to get over it. I want all to feel loved, seen, and valued for exactly the unique human they are. I want them to feel the love of God without intention or malice.

    I want to hide and only seek the Misfits. I’m good at loving misfits. I am now in a position of humility with a weird condition making cancer even more complicated and painful. I am a misfit playing grown up, but my ability to mask exhaustion and autism gets more difficult as waves of loss and fear strike home.

    Home didn’t feel safe because I had a rageful, grief-driven, humiliation mixed with misunderstanding, meds that would give Dwayne Johnson roid rage, and a crew that watched me dying and becoming nothing as no one watched, but everyone observed.

    It’s been almost eleven months of head injury/whiplash investigation plus connective tissue disease work SUDDENLY getting hit by cancer. Maybe cancer explains a lot. Maybe it’s just another thing.

    I’m the girl that pain management looks at and says that the opioid epidemic doesn’t apply to me. I get hugs from mean providers who make me call them, “Stephen,” or “Michael.”

    I’m a zebra who saw a horse NP and my complicated zebra problems got missed … historically by all. If you hear hoofs, think horse not zebra.

    I’m a zebra with cancer. Cancer isn’t cheap and hospitals who charge for parking are monsters.

    Angels have shown up and not a soul who has had cancer has not hugged me immediately upon meeting me and learning I’m new to the club. Miss Y’vonne, I mean you. Shelley Krier Stewart, God gave me you after loving me by your mom.

    Defeated, weary, broke, and broken down soldiers follow me and have changed their lives for one thing cruelty and love have given me:
    FORTITUDE
    GRATITUDE
    TENACITY

    God save the queen.

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  • She’s too Negative (a breast cancer HER2-negative joke)

    A dear follower made this for me to inspire me. My crown is now less likely to slip. ♥️

    On September 28, 2023 I had to have titanium markers placed in my left breast. They also took several biopsies. On October 5, 2023, I was out of state helping a friend and I was told to immediately get to my doctor. I already knew.

    I have Invasive Ductal Carcinoma.

    So I have HER2-negative cancer. This is great news in Cancerland, by far the worst amusement park until MAGA comes up with one and there’s a Kid Rock soundtrack on just loudly enough to irk you.

    What HER2-negative means
    If breast cancer cells do not have abnormal levels of HER2 proteins, the breast cancer is considered HER2-negative.

    Even if your cancer is HER2-negative, it may still be estrogen-positive or progesterone-positive. Whether or not it’s hormone-positive also affects your treatment options.

    What HER2-negative means
    If breast cancer cells do not have abnormal levels of HER2 proteins, the breast cancer is considered HER2-negative.

    Even if your cancer is HER2-negative, it may still be estrogen-positive or progesterone-positive. Whether or not it’s hormone-positive also affects your treatment options.

    It involves hormone blockers, then chemo or radiation after lumpectomy and if I’m likely to have either an immediate implant or I may wake with no breast. The PET scan will show how my recent abdominal surgery has healed.

    Hormone blockers can cause intense pain, per my first oncologist (I’m interviewing), so given my medical condition, I’m not sure what that looks like.

    Staging only occurs after MRI of the breasts and ducts and lymph nodes. There’s been so much pain and rubbing, I’m a bit scared.

    This particular surgery team has a rib and sternum team, and thoracic can make decisions about fixing my pectus excravatum when she’s in there or look to see it gets done.

    So that’s where I am today.

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  • I am in Hell Trying to Mine for Gold

    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.

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  • I have always been Skippy (aka “If I Were a Fishy Keaton”)

    I’m in a world with Alex P. Keaton’s and I am Skippy.

    I have always been Skippy and now I feel like it most. Don’t wait for a sad story because the story is true and real to Skippy.

    That’s the difference. I started to lean into my Skippy when I realized I wasn’t designed to be Alex. I realized Alex’s goals weren’t mine and rejected them in order to figure out how I could be happier.

    I tried for a bit to be like Alex, but it didn’t make me happy. I hung out with Alex for a bit, but he never asked about the odd things that moved me. I felt dismissed and separated because of it. I needed to see who wanted me to be Skippy and who wanted me to keep pretending I could be Alex but ashamed of myself for not being him.

    Everyone loved Alex so much, he became a time traveler. He was amazing. Skippy loved that man. He became huge. Oh my word, he became so incredibly amazing, he got to change his name twice.

    He got to become Marty McFly at first and got seen for what he could pretend to be. The role was to die for. The role was to suffer for and he did and got sick with an illness that he felt for a while when no one else did.

    Marty McFly felt sick and didn’t tell anyone but his doctors and his family. As Marty got sicker, he got to start using his real name and the world now loved Michael J, the most.

    Pepsi commercials and new roles were offered and he was just himself. He is suffering and shares his story to help others and himself, too.

    He is admired for his vulnerability and strength. He is admired for his sacrifice in order to help others hurting similarly. I love him more than anyone I know. I absolutely always have.

    I met Michael J when I was seven. I didn’t get to see it in 1985. I saw it on a tiny screen on a push in a gym at the YMCA near Ridge Pike in Pennsylvania monitor, the next year. I would never forget that moment. I was a fan girl tried and true.

    I have always been Skippy only I have a rare version of Michael J’s story in a body that used to feel beautiful for only a tiny moment in time.

    Skippy got transformed into Michael J in her ability at work for only a fraction of the time she wanted to heal her loves in her care.

    She accidentally looked like Alex by trying to have a baby and get thin quickly and she felt confused when looking so different and feeling oddly new didn’t get ”noticed,” even if she could see it. It was odd.

    She had more fans when she could be more to others, but the fans were intermittent and she thought the relationship was different than it was. It turns out, she always was Skippy and didn’t understand how others must have perceived her.

    Skippy knew Skippy was Skippy always. Others got confused. Skippy is now sick and feels the way he always did.
    Skippy is also admittedly Skippy and that is why Skippy only has the few who either never cared, only knew Skippy as unique and admired her for it, or always saw different as something to value and held her in their heart like the star she felt like to them in their moments needing Skippy’s story.

    I am Skippy and have always been. I love that girl and am so sad she is sick and so confused and scared that Skippy is more Skippy than she knew she was and being sick makes her eyes blur.
    Being sick makes her hands numb so typing is hard, but she never stops sharing her story.

    Being sick makes her muscles be tested for advanced Multiple Sclerosis, but she shares photos of her tiny, huge world.

    The world sees huge and thinks the walls feed her painful stomach so she occasionally says it’s difficult. Her baby occasionally wants Dino Nuggies even when she is home from college and those cost more. She drops her protein regularly to make sure that others who don’t need 90 grams of it a day, feel safe in their comfort so that isn’t close to a sacrifice. It never could be because she made a little Skippy, herself.

    Her Skippy told her she was always a Skippy and that is why she loved her the most. Little Skippy told her, “You must have loved me so much as who you were, ‘Skippy,’ that you missed the signs I was ‘Skippy’ as well. That is how I know you love me. You adapted to me being myself and loved me in time and patience and adapted naturally because … you have always been Skippy, too.”

    When your baby tells you they love you most as Skippy, you embrace the role of a lifetime and change your name from an offensive name to your new, UNEXPECTED fans.

    You stop becoming Artoo on social media. Artoo, your first “non-painful” nickname given to you by a human who gave you the anthem, “Unstoppable” called you R2-D2 because you spoke in a way few understood, but to those who spoke Artoo’s language, they understood Artoo perfectly and loved Artoo.

    Skippy loved that nickname until then. It hit Skippy while she was processing it all on her deck. Robots were offensive to her fans. Ugly people called her fans robots and she hated offending people, ONCE SHE KNEW THEY WERE OFFENDED BY SOMETHING SHE DID AND SHE COULD IMMEDIATELY CHANGE IT TO MAKE OTHERS FEEL VALUED AND NOT OFFENDED BY HER.

    She said, “What should I be to change this offensive name I worship?”

    I love Back to the Future most, but Queen Buttercup from the Princess Bride is so delicate, in need of protection, in need of a white knight, and a representative of royalty.

    The day I fell in love with the idea of knowing who Skippy was, I changed my name. I have always been Skippy, but on that day, I became, for $20/year in money I don’t have …

    http://www.QueenButtercupSpeaks.com to share Skippy’s stories safer and in a place you’d have to look harder for to be offended by. Others still looked and found offense, but they never understood Skippy was who she was and saw the stories differently than others because of it.

    “You are not a Skippy. You are a lie. All of your stories now, even the ones multiple specialists told you are lies. Why you need to prove it, is shameful. Simply that proof is too doubtful so we have decided …

    Your walls are too tall. They feed you fine even if you love to feed others and we know it is your joy.

    You played a role once. You are clearly capable of that role even though no one cares if you can no longer act at all.”

    Skippy had an easy time living next to the Keaton’s because, even though the Keaton’s had issues, they got on in life fairly unscathed at the time. They had issues independently, no doubt.

    Skippy, what was that actor’s name?

    I am Queen Buttercup, but I’m not. I’m Bethany. My friends call me Beth. My friends also call me Queen. Most who read this should likely start calling me Bethany.

    I am Skippy and I love her. I love her because Little Skippy told me that my smile will always be the same and that the blue patch in my left eye will never change even if all of me changes.

    I’ll hold that little blue patch forever because… I have and will always be Skippy. She writes like her life depends on it. It started feeling that way when her roles changed. She loves to write her Skippy stories because they’re hers and they are exactly hers alone.

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  • I’m suffering

    If you’re not looking close up, I pass as a skinny chick. If you look, you’ll see the connective tissue under my skin is both too tight and is also hanging off in ropey strands.

    The connective tissue that is tight, it’s compressed my skeleton from head to toe. My pain is astronomical sometimes. When I lay straight, the tissue presses my rib cage down making me feel claustrophobic and then I hyperventilate. MRI machines are hell.

    The tissue that’s loose has created choking hazards and it cuts my airway off based on my position. When I spent too much time doing myofascial release work, not knowing I had an underlying genetic condition and shouldn’t do that, I started to get extremely sick.

    I have had a fever more days this month than not. I have a severe neuropathy from my eye orbits down. My vitals range from 222/166 down to 86/55 and my medications stopped clearing my system correctly.

    I now have severe muscle atrophy in my chest and intercostal muscles and am waiting for an answer.

    My PCP diagnosed me with Relapsing Polychondritis, but the neurologist I saw last week also ruled in MS, which we feared in 2018. It was ruled out then, but I am struggling now from the face down from the combination.

    It feels like more things got ruled in by trying to solve a weird Scooby Doo mystery.

    Keep my family in your prayers please. This is the most difficult time in my life and I keep saying that, but it keeps being true. A rumor was started that I’m a scammer because my house was too large or something. 🙃

    Quite literally, I am supposed to feel like my support needs are less because the walls in the family room that make me scared in an autistic meltdown, are too tall so I have disposable income for compression gear and pizza after my 9th MRI this month. Noice. The internet keeps life classy, but I digress …

    I don’t even know how to address issues about my integrity when I haven’t yet finished finding a CNA who can help remind my insurance company that I am still here.

    If you have any resources on how to get rid of pesky head-to-toe connective tissue trying to suffocate you alive, please let me know. I don’t know how to rest with that level of pain for much longer. It’s making my heart break and I’m losing myself in pain and anger.

    If you know diagnostic specialists looking for a project, send them to me.

    If you have a box full of money and you like sharing with the class, I’m not hard to reach.

    If you’re kind and caring and have a heart that is only kind, please reach me. I feel isolated and alone more often than not. I know how to reach out, but sometimes I can’t find it in me to do so. If crying makes you uncomfortable, I’m not the one at the moment.

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