POTS Recovery: Treadmill Routine

Story Time: I was isolated in our home for the first few years of marriage. I only ventured out for appointments and family events, with the occasional dinner date in-between. It was a lonely time that deeply rocked my mental health.

I didn’t officially meet our neighbors until the fall of 2017, almost four years after we moved in. I was elated to be doing all the things with newfound freedom from my wheelchair. One night we walked to a bonfire across the street, an annual gathering I would watch from the window years prior. When I introduced myself, everyone started settling their bets! One friend said they wagered on theories as to whether or not I was real and that Michael might actually be insane. They considered that I was:

1. real, alive but unwell & hiding out,
2. real but dead, stuffed and kept in the basement like Norma Bates,
3. made up because Michael was trying to create the narrative of a married man.

Clearly I’m not made up but Theory #2 was a possibility; there are taxidermy shops on every corner ’round here.

My POTS symptoms got so bad this month I’ve been reliving that mid-2010s lifestyle. I can correlate health regression in the past with a trigger (surgery, long periods of  severe depression, lack of access to TPN or IV fluids) but this feels random. I hit a wall and a large portion of my progress went to down the drain overnight. I’m throwing major Boo Radley vibes at my neighbors again. At least this time they know what’s up.

Wiggle Room
No matter where I’ve been in my chronic illness journey, my goal has always been to get healthy enough to have wiggle room. I need to have enough weight on my body in case I get an infection (preferably not COVID) and lose ten pounds. I need to feel hydrated enough to be able to spend a few hours away from home without getting faint. I need to make sure my diet is clean enough so I can occasionally have a treat without going into anaphylaxis. Wiggle room is the key to long-term stability with my health.

Even for the shittiest year in history, I made a lot of progress and had a great summer. No, it was incredible. I got to taste the part of life I dreamt about for years and did things I grieved when I fell sick. Every day I spent an hour watering the garden & plants around our property. I swam in the lake and spent massive amounts of time in the sun with friends. I could run around with my their children without becoming winded & focus on the joy, which was foreign to this chapter of my life.

Why Exercising is Important with POTS
All that fun was actually doing something for me. Swimming, yard work and outdoor activities kept my heart in excellent condition, along with planned exercise on the treadmill. With a vigorous lifestyle and previous conditioning, I could easily maintain myself in peak form. Summer seemed to turn to straight into winter this year and my body followed suit. Everyone’s condition is different but physical exertion (mostly treadmill intervals) is essential to my POTS recovery:

• Strong calves and leg muscles act as internal compression stockings, returning blood flow back up toward the heart.
  • It helps with all blood flow, minimizing several debilitating symptoms: frequent fainting, severe migraines, cluster headaches, brain fog.
• Incline work on the treadmill (resistance + cardio) keeps my heart in tip-top shape. A strong heart = POTS resilience = longer-term maintenance!
• The more I sweat from provoked exercise, the less I seem to experience temperature dysregulation. Just an observation.

Obviously working out also has positive effect on my depression (hello, endorphins) and strengthens my joints & bones–hEDS and I are in this for life. While running is hard on my knees I’m lucky to have the option to manage some musculoskeletal issues with exercise. I consider it a privilege.

Getting Back
Dysautonomia recovery has been the second most difficult obstacle to overcome for me. That first step is nearly impossible, a reminder of why POTS is compared to CHF. At one point I was so deconditioned that I would pass out instantly if there was a loud noise (the Fourth of July was a sumbitch). I could barely take a deep breath without consequences, a complete mess.

Fitness programs prescribed by my doctors were a nice jumping off point, though they never worked well enough. Each of their options left me with a plateau. While I use the Peloton bike after a physical injury, treadmill training is my thang. I had to create my own path specific to my body, my ability level, my POTS. A few programs do deserve an honorable mention as they inspired my own recovery techniques. I had to learn to walk before I could run.
POTS Treatment Center: Exercise + Nutrition
Levine Protocol

Treadmill Routine
Is it a good day, a bad day or an in-between day? The answer comes to me every morning as I wake up. Sometimes it’s clear to me throughout the night if I’m camping in front of the toilet. This answer influences how I approach everything. My “routine” has to be extremely flexible, just like everything else in life with chronic illness.

I do a different workout every single time I step on the treadmill, tailored to what type of day it is and where I’m at in the recovery process. The format is always the same, intervals based on where I’m at in my mile.

Mile Marker	Speed	Incline
0.0 to 0.35	4 mph	Starts at 3%
0.35 to 0.5	6 to 6.2 mph	Decreased to 0.5%
0.5 to 0.85	4 mph	Increased to 4%
0.85 to 1.0	6 to 6.2 mph	Decreased to 0.5%

I chose these mile markers because it is manageable for me no matter what my fitness goals are. I manipulate the speed and incline to reach those goals. The variations help me build stamina while keeping my heart rate at a safe number:

1. I adjust the incline (typically only 1%) at every half mile. This gradual increase keeps my heart rate from jumping too quickly and my body from overheating.
   1. On good days I adjust the “sprint” incline from 0.5 to 1 or 1.5%, and the “recovery” incline ends up at 15%.
   2. I purposely bought the NordicTrack X11i because it allows up to a 6% decline for the days when I’m seriously deconditioned. It’s nice to be able to move without spiking your heart rate to dangerous numbers. Sometimes going downhill is the right path.
2. My speed variations stay pretty consistent between 4 and 6 mph. On bad days I stay at 4 mph and refuse to jog at all. On good days I push myself to 6.3 mph sprints. Pre-POTS days I could run a 10k at 7+ mph without stopping. I was a beast.
3. Distance variations depend on how much time I have that day and how the rest of my week looks. On bad days, a half-mile at 0% incline kills me. On good days I can pound out a 5K and not miss a beat. In 2018 I managed to do six-mile workouts…before SMAS ruined the party.
4. Since incline is key to making progress, time is not important to me. I don’t force myself to have timed fitness goals at this point. I hit pause and jump off the treadmill and so many times it’s almost funny. If I don’t take time to let my heart rate come down to a safe number when I need to, I would have consequences and hurt myself further.
5. My workout frequency chart would look like a scatterplot. It all depends on my lifestyle, which fluctuates with the seasons. During early quarantine days I chose hiking in the woods as opposed to staying in the house on a machine. I currently try to get on the treadmill three times a week.

I prefer to call this MIIT: Moderate-Intensity Interval Training. My autonomic nervous system may never allow me to do higher-intensity exercise and I’m fine with that. I’m content being able to walk, do housework and spend time with my people, i.e., wiggle room.

Outdoor runs are not feasible for me. Treadmill training is monotonous but it gives me control I don’t have on pavement. I can jump off and lay down at any point if I feel sick on the machine, and this happens often. These country roads make it difficult to go on shorter runs, one of few reasons I miss suburbia. Fainting or pooping on a jog two miles from my house is a safety hazard, to say the least.

Today, I’m nowhere near where I want to be health-wise and I don’t know if I ever will be. Bouncing back is just life. Getting derailed and realigned again is part of everyone’s journey, so I try not to be too hard on myself when this happens. Chronic illness fluctuates, abilities come and go and all you can do is remain as consistent. Find what works for you and run with it!

[Para]Sympathy ©
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Ketamine Treatments: A Lifestyle Change

Some things are just too good to be true. Ketamine is not one of those things.

Ketamine Treatments: Initial Series
My journey with ketamine started in January of 2018. A friend of a friend recommended it for drug-resistant depression, post-traumatic stress disorder & chronic pain. I didn’t even entertain the idea for years. I’m a straight-laced girl and it took a lot of convincing to get me to try ketamine. It also took me a long while to sample medical marijuana. I’ve never even smoked a cigarette.

Treatment Plan: Evolution
The initial series of ketamine treatments worked well because I was getting more frequent infusions. Putting time between treatments means you have a greater chance of going back to baseline as the drug wears off. I have a family history of addiction (big time) so I try to go as long as possible between infusions. While ketamine is used for treatment of addiction, I don’t like to mix it with the other  medications I have in my system. I’m in this for the long haul, and I’m too young to keep increasing the dose. Still, this attitude and approach puts me at risk for depression coming back full swing. That’s where troches come in.

Troches are like wax melts made of a sugary paste that dissolve in your mouth, similar to a sublingual lozenge. Ketamine troches soften between the gum & cheek. This is a quicker delivery sytem than a tablet or capsule to be swallowed & digested. I started using troches in the spring of 2019 & they changed the game for my long-term mental health.

	Sublingual Ketamine Troches	Intravenous Ketamine Infusions
Cost	$80-90/Rx (30 doses)	$500-600/infusion (1 dose)
Dose	100 mg per troche	60 mg per infusion
Frequency	2 troches every week	1 infusion every 2-3 months
Duration	Feel “high” for 1-3 hours; minimal dissociation	Feel “high” for 2-4 hours; routine trips to outer space
Long-Term Efficacy	Effects last a few days to weeks	Effects last a few weeks to months

*This is a comparison chart from my personal experience per my current treatment plan created by my medical team. Pricing, doses, efficacy, etc. vary per patient & diagnosis. Check out Michigan Progressive Health’s website for more information.

The Best Part
You don’t have to choose one or the other. I get outpatient ketamine infusions every two to three months and have the troches refilled at those appointments as maintenance in-between. With chronic pain & my family history, I steer clear of drug regimens that have a potential for dependence. This system works well for me because it’s completely moderated by the doctor. Infusion appointments force me to pace my troche prescription refills, which keeps my tolerance low.

Actually, that’s not the best part. The best part is knowing that I have a depression/PTSD rescue medication sitting in my cabinet for under $30/month. For me, ketamine has been the ONLY abortive drug for depression & anxiety. Even with severe suicidal thoughts (finger-on-the-trigger bad), ketamine stabilizes my mood the second that troche hits my tongue. For me, it’s a fail safe treatment versus SSRIs or benzodiazepines. Troches dissolve quickly & provides complete relief within fifteen minutes. There’s no guesswork.

The second best part is multiple-symptom management. Much like medical marijuana, ketamine helps relieve my symptoms of chronic pain, depression and all forms of anxiety. I don’t mind the out-of-pocket cost because it takes the place of several medications that wouldn’t work as well! Two birds, one troche.

Okay, ketamine is great all around. I’ll stop trying to rank it.

My Suggestions
#1 Do your research. I appreciate you coming to my wonderful website for this information (it’s valid experience–use it!) but continue to ask questions, inquire about whether or not this is right for you. Call your local ketamine clinic & find out what treatment plans are available & what might work for you.

#2 Recognize the nature of the drug. Every single ketamine treatment I’ve had, sublingual or IV, is a wildly different experience. Hamilton’s Pharmacopeia does an excellent job of explaining this phenomenon. Some infusions give me relief for five months, while others only last weeks. Your stress level, physical health & environment make a difference.

Ketamine seems to work best with minimal distractions. I listen to Pandora and close my eyes during infusions & troches sessions to maximize the effects. Sometimes I mix it up to feel upbeat & happy, and there are days when I prefer the deep dissociation that comes with meditation soundtracks. The genre of music most definitely influences the experience I have with this drug. Here’s proof.

#3 Take it when you need it. Until this treatment is covered by insurance, it’s going to be expensive & difficult to access in some states. I don’t always feel worthy of the cost of the drug, but that’s the disease talking. Don’t wait until you’re standing on the ledge to seek help. Consistency is key when you’re balancing your mental health and true healing takes years. Slow & steady wins the race.

#4 Reach out. Being a human is hard, which is why we seek advice from other humans. Counseling, especially CBT, complements every drug regimen. We all need guidance, so be gentle with yourself. Depression, chronic pain & mood disorders are life altering and debilitating conditions. You are strong for reaching out, not weak.

Support groups can put you on the fast-track to recovery. They’re especially helpful when you regress or lose the progress you worked hard to attain. We all backslide, we all have off days, sick or not. Michigan Progressive Health holds virtual support groups for existing patients twice weekly; I try to check in when I can. Isolation can cause severe emotional disturbance and I think quarantine proved that. Human connection is the cure, plus it’s free!

#EndTheStigma. I’m determined to break the societal vices placed on the mentally ill. Ketamine gives me control in a turbulent a situation and I will not apologize for that. I refuse to shut up about mental illness or the drug that saved my life. I invite anyone with health issues to do the same–strength in numbers! As long as there is air in my lungs and movement in my fingertips, I’ll be right here preaching. ♥

[Para]Sympathy ©
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Death With Dignity

The Scribe: Medicine, Ethics & Politics

“Life is precious. So is liberty.”
-Kenneth Goodman, Director to the University of Miami Bioethics Program

A lot of people have it. The chronically ill battle with clinging to it. Dignity is a subconscious and complicated way humans measure their own value. Body image issues, unemployment, uncontrollable change and unwarranted opinions are just a few factors that may erode one’s self-esteem. Feeling like you’re losing what makes you whole is frustrating. So what happens when dignity dances with death?

The Scribe honors the life and death of Brittany Maynard. At the tender age of twenty-nine, she was diagnosed with terminal brain cancer and given six months to live. Brittany moved with her family to Oregon to take advantage of the Death With Dignity Act. It didn’t take long for her story to move and enrage people across the country.

The Position
Here is bit of information on this issue:
Brittany Maynard Fund
Compassion & Choices
Compassion & Choices Youtube Channel
How to Die in Oregon– I highly recommend this documentary (available on Netflix).

death with dignity
noun.
1. an end-of-life option that allows a qualified person to legally request and obtain medications from their physician to end their life in a peaceful, humane, and dignified manner at a time and place of their choosing. Death With Dignity is governed by state legislation.

This article sparks a heated discussion. Brittany learned of her brain cancer on New Year’s Day, after suffering from grueling headaches. Her newlywed bliss was squashed by a craniotomy and partial resection of the temporal lobe. Three months later, the tumor returned and brought friends.

Brittany’s research of radiation treatment was eye opening. “I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.” The prognosis wasn’t promising, and she decided to face reality: hospice, palliative and end-of-life care.

The San Francisco Bay hospice centers didn’t sit well with Brittany. She was experiencing agonizing headaches and seizures, increasing in severity and frequency. She was likely to become morphine-resistant soon, which would leave for a horrifying death. The aggressiveness of glioblastoma multiforme had her trapped. With more research, Brittany stumbled upon the Death With Dignity Act. It suited her situation, so her family jumped on board.

[Brittany’s POV: A Tear Jerker]

Only five states participated with this law, California excluded. The family uprooted and became Oregon residents nearly overnight. It didn’t come without a chore. “I had to find new physicians, establish residency in Portland, search for a new home, obtain a new driver’s license, change my voter registration and enlist people to take care of our animals, and my husband, Dan, had to take a leave of absence from his job.” To be eligible for the Death With Dignity Act, the patient must be an established resident of the state. This much dedication is further evidence of how sick, in how much pain and how scared Brittany was.

Before she succumbed to cancer, Brittany soaked up every last drop of life. This was nothing new. She loved to travel, socialize with loved ones and show off that thousand-watt smile. She was a wanderlust. From Yellowstone to Alaska and Denali National Park, Brittany explored the world as much as her body allowed. “To consider life and what’s of value is to make sure you’re not missing out. Seize the day. What’s important to you, what you care about and what matters. Pursue that, and forget the rest.” Her final days were full of love and adventure with her best friend, husband and parents. Still, reality was always in the back of her mind, literally.

Brittany was adamant that she was not suicidal. This is a major criteria to be eligible to access the Death with Dignity Act in Oregon. Mental stability must be established before the prescription is released. “I’ve had the medication for weeks. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.” Brittany also left the option open to a change of heart.

This decision was not hers alone. Brittany consulted and considered her family members. Her future dreams for husband, Dan, are bountiful. “I want him to be happy, I want him to have a family. I know that might sound weird but there is no part of me that wants him to live out the rest of his life just missing his wife. So I hope he moves on and becomes a father.” Brittany’s mother, though devastated, agreed to whatever lessens her daughter’s pain. “It’s not my job to tell her how to live, and it’s not my job to tell her how to die. It’s my job to love her through it.”

Brittany Maynard passed away from physician-assisted euthanasia in her home on November 1st, 2014. She was surrounded by her husband, mother, stepfather, and best friend. She went peacefully, exactly as she wished.

Brittany’s death was not in vain. She will live on as an advocate for those who fight for Death With Dignity in the United States. In October 2015, California legalized aid in dying. Her story reached national news. Through the media and her own advocacy, it wasn’t difficult for Brittany’s family to persuade state legislators. California is the sixth U.S. state to allow Death With Dignity, along with Montana, New Mexico, Oregon, Vermont, and Washington.

The Opposition
“If my dreams came true, I would somehow survive this but I most likely won’t.”
The “most likely” in that sentence is proof that even Brittany had some doubt. Whatever the reason, it shows that she feels hopeless. Feeling as if you are not going to survive a terminal disease, especially when doctors say so, you lose hope. She gave up fighting. She stopped trying. Brittany gave up on her dream of survival and sought out a way to die comfortably. She accepted the inevitable.

Religion aside, taking your own life or the life of another is a spiritual gamble. Disrupting or manipulating the order of things makes the Universe angry. Your illness, happiness, life and death may be a huge lesson or life-changer for another human being. If you don’t believe in fate, believe in modern medicine. You may be the first patient to participate in a clinical trial to cure cancer, heart disease or diabetes. Have faith in something, even if it’s yourself.

From the Heart
Dr. Sandeep Jauhar wrote an article on this subject just a few weeks before Brittany passed away. He is understanding, educated, evidential and sympathetic. He does not sound like a doctor at all.

Dr. Jauhar compares Brittany’s situation with his care of the elderly. He gives the specific example of an 84 year-old woman who had end-stage CHF (Congestive Heart Failure), was short of breath and terrified of another episode. She begged him for pills to end her life. He considered it, but the board ethics team declined. He put this woman on a morphine-drip, though she was not currently suffering. She died at the hospital, but not on her own terms.

Upon hearing about the Maynard case, Dr. Jauhar felt terrible but alarmed. Being a physician, he knows that hospice has a wide range of options that make end-of-life care peaceful and comfortable. He admitted there are rare cases, such as the senior patient, where hospice care is not appropriate and Death With Dignity would be preferred. “As a doctor, I would like assisted suicide to be safe and available, but rare.”

A few statistics from Death With Dignity, and unrelated suicide attempts, prove that no one wants to end their life, no matter the reason. Dr. SJ mentions that since the bill passed in 1997, 32% of Oregon’s patients aided in dying chose not to take the medication. Furthermore, about 85 to 90% of people who attempt suicide survive. The human will to live is instinctual.

Brittany’s words and feelings are as my own.

Personally…
Recently my friend’s aunt passed away. She brought in her aunt on hospice, as a full-time caretaker. At-home hospice means that you sit and wait, giving the patient a safe and comfortable setting until her soul is free once again. My friend acted as a nurse, a maid, a cook, a friend and the most loving niece you can imagine. She had Option B of a hospice center, or nursing home. Auntie died peacefully at home, surrounded by her loved ones after months of the most nurturing care you can’t buy. Death With Dignity comes in many forms. A hospice facility, hospital or physician-assisted euthanasia are not the only options. Find what suits you.

My former boss was my mother’s business partner, co-worker and good friend for over forty years. I knew him from the day I was born. Denny was diagnosed with pancreatic cancer in 2006, so I expected him to die within weeks to months. After chemotherapy and radiation, he survived. There were CA 19-9 scares throughout the years, but every prognosis was shattered by a long shot. His cancer returned a few years back, and he passed away a few months ago. The disease metastasized to his lungs and beyond. Denny lived almost ten years past his pancreatic cancer diagnosis, which is usually an immediate death sentence. You never know how much time you have left.  Taking a fatal pill, based upon a physician’s prognosis, is a huge gamble. Doctors aren’t God (trust me on that one).

I feel a bit of Big Brother brainwash at play. Euthanasia is frequented for pit bulls and parolees. The death penalty has been a legal consequence for ages, but lethal injection is a bit modern. Whatever the rhyme or reason, taking a life is what it is. Some say killing a prisoner on death row is taking the easy way out. Conversely, many euthanize their beloved pets so they won’t be in pain any longer. Playing both sides of the fence (i.e. euthanasia as a punishment vs. humane cease of misery or pain) is socially acceptable and rarely questioned. Such norms are woven into our moral fibers. Lethal injection/euthanasia is good enough for man’s best friend and his worst enemy, but not his wife?

I am terribly sad. It is easy to relate to Brittany: inevitable and progressive pain, lack of control over her body, mass judgment about the hard choices she must make in a time of grief. Taking away the controversy, this beautiful girl only wanted self preservation. Her death was the gateway to a new era, one step closer to all fifty states. Though Brittany’s life was short, it was enriched with joy and love right until the very end. Quality over quantity. ♥

Rest In Peace Brittany Maynard
Rest In Peace Aunt Ida
Rest In Peace Denny

The Scribe ©
[Para]Sympathy ©
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Narcotics, Chronic Pain & Addiction Stigma

The Scribe: Collateral Damage

“I think if you were Satan and you were sitting’ around tryin’ to think up something that would just bring the human race to its knees, what you would probably come up with is narcotics.”
-Cormac McCarthy, No Country for Old Men

Pills: We depend on them, we abuse them, we struggle to afford them. Humans in this new millennium have evolved into pill poppin’ animals (just ask Lil Wayne). A tiny tablet, intended for treating your pangs, is widely known with a street tag and reaching Cloud Nine. There is a line between knee surgery post-op and Dealer Dan. Who decides that line and where it is drawn has become a huge debacle. That Cloud has us all in a fog.
The Scribe highlights Ellen Painter Dollar, an author and mother with osteogenesis imperfecta (OI). Her fragile body has not slowed down her busy lifestyle. Until recently, Ellen felt no need to use prescription pills as a source of pain relief. Wife life in her forties, and post-baby, has left her no choice but to add medication into the mix.

The Position
This article is multifaceted, to go along with the complexity of the issue. Ellen is a woman with severe chronic pain that she has been managing since early childhood. She sustained almost four dozen bone fractures as a child without a single opioid. She was content until those injuries caught up to her. With no cartilage in either knee, Ellen continues to do household work and function with motherly duties. A heavy load of responsibilities requires a wide range of pain management. “I rely on long-acting opioids, combined with high doses of Vitamin D, ibuprofen, hot baths, low-impact exercise (especially swimming), a produce-heavy anti-inflammatory diet, and rest.”

Naturally, as prescription drugs are abused, good doctors will become more hesitant to release them to patients. Ellen is not misusing her medication, but she is subject to the arduous process of obtaining it. Making phone calls, missed messages, mixed messages and a complete lack of communication between healthcare professionals forces those responsibilities onto the patient. This stress can greatly exacerbate symptoms. “Getting my medication has become steadily more difficult—a development I’d find easier to accommodate if it didn’t come packaged with shame and fear.” Each trip to the pharmacy is like a monthly dose of humiliation for Ellen, a modern day Hester Prynne. When a new Rx pops up on the Walgreens computer screen, it’s natural for workers to jump to conclusions as to why it is prescribed. She feels the painkillers reveal a false illness to the pharmacist, one more psychologically demanding than OI. “Your pharmacist knows things about you that even your friends may not.” Perhaps they think they do.

The original intent for pain killers was to control pain (call me Captain Obvious). We would like to think that the primary cause for the development of extended-release (XR) opioids was driven by chronic pain, but quite the contrary. “Purdue Pharma developed a timed-release form of oxycodone called OxyContin, aggressively marketing it to primary care physicians for use by patients needing steady around-the-clock pain relief. Purdue stated that OxyContin’s slow-release formula would make it unattractive to addicts who want a quick, substantial high.” Addicts can manipulate the form of the drug to suit their desires for abuse. Crushing a pill, specifically XR, it will destroy that component of the drug. A perfectly safe and effective drug, when taken as prescribed, became solely known across the globe as a heavy & dangerous narcotic. The XR drugs work for patients over a period of time (bonus) but the catalyst was purely addict-related. When those who are addicted to prescription medications manipulating the market, it leaves little room for the real consumer’s needs.

Time-released opioids were a great breakthrough in pain management, whatever the motive. They are prescribed every six, eight or twelve hours because they have a peaks, troughs, half-lives. Drugs are metabolized differently, at variable rates. How they are sustained depends on the prescription, contoured to the patient’s needs. There is a system put in place (therapeutic drug monitoring) that helps professionals care for patients safely while using medication. People in the throes of addiction do not use such a system and have found a way smash it, literally. “Drug addicts soon figured out that by crushing OxyContin to destroy the timed-release mechanism and snorting or injecting the powder, they could get the entire dose—meant to be parceled out over eight or 12 hours—at once.” A twelve hour dose of OxyContin in one injection/inhalation is highly potent. It can be much more damaging and increase the incidence of death from addiction.

There are recurring conflicts tied together in this article: ignorance of definition and misconception, typically unmerited stigma. It isn’t uncommon that drug dependence and addiction are used interchangeably. Some people just don’t know that there is a difference. When journalists pick up the habit of throwing these words around incorrectly, the result can be damaging. “Articles imply that addiction is an inevitable consequence for anyone who takes opioids for more than a couple of days.” False statements like this will only misinform readers, prove that the author is misinformed and further cement a stigma for the chronically-hurting.

This world is full of “rules.” Most of us play by them. When that exception to the rule comes along, outsiders question why we can’t be like that. Everyone thinks they have the answers. If you became sick suddenly, it must have been something you did wrong…right? This notion breeds the concept that diseases can be reversed if one tries hard enough, making narcotics seem like the easy or lazy way out. People seem to take notice when that one exception “with multiple sclerosis who claims she is still able to walk because of her self-engineered diet and exercise program.” If she can do it, why can’t you? “Dependence on opioids— a substance often abused and at the root of severe social ills—is seen as not merely misguided or uninformed, but deeply suspect.” Obviously Ellen is just a pill popper with brittle bone disease on the side. Obviously.

Ellen openly acknowledges understanding opioid regulation. Prescription pill addiction is an epidemic in America, even if it is harming the chronically ill or those with underlying chronic pain. It is frustrating and time consuming to obtain her medication as a mother and wife but does so with patience. Given the stigma, shame, complications with prescriptions and exhaustion amongst it all (creating more symptoms), Ellen feels she can no longer take opioids as treatment.
“To be a chronic pain patient on opioids is to be seen as a problem.”

The Opposition
For part of my opposition, I sought inspiration from the documentary “Prescription Thugs” directed by Christopher Bell.
“In a recent Boston Globe Op-Ed, Judy Foreman related this anecdote: When professors at one medical school asked graduating medical students what they would do when faced by a pain patient, one student spoke for many: ‘Run!'”
Ellen’s reference to this incidence is eye opening. I can’t speak from a doctor’s standpoint, but there is one of two things going on in this situation: 1. The professor has previously expressed to students that patients with pain are difficult to treat (which is true) and that student made a joke or 2. The professor is instilling a fear or form of skepticism in his students when solving sources of pain for patients. Either way, both student and teacher learned this from somewhere (previous professors, experience, work with patients with prescription addictions, stigmas following pain killers, all of the above). Doctors breeding doctors who are weary of treating chronic pain right out of med school aren’t likely to be gung ho about opioid-adjacent patients.

“Prescription Thugs” showed that the United States makes up five percent of the worlds population but consumes seventy-five percent of the world’s prescription drug supply. I know we need a lot of insulin and propanolol, but that statistic is deafening. It is difficult for the honest patients to obtain prescription drugs, but some doctors make it easy for addicts. They can spread thin, getting a script from a few different doctors and cash in at unrelated pharmacies. It’s foolproof. Such wise stepping forces healthcare agencies to strengthen opioid “security” in other ways– frequent evaluations and visits (history of addiction, physical for foul play), no refills, doctor recommendations, adjunctive therapy. For now these methods are the best ways to decrease death by prescription overdose. Technology is always advancing.

Those statistics only precede this next one. After Purdue Pharma slyly released the uncrushable OxyContin in 2010, the customers dropped by eighty percent. Chronic pain doesn’t evaporate suddenly in mass amounts of patients. This is proof that a majority of the customer base for narcotic prescriptions are the addicted. An even sadder conclusion: 80% of doctors prescribing narcotic medication are taking advantage of those with substance abuse issues. This is where that stigma-breeding in medical school comes full circle.

Just as I “don’t look sick,” there is no one face of an addict. In the documentary, Betsey Degree is a housewife and mom from Minnesota that got roped into her daughter’s Adderall (dextroamphetamine). After a positive ADHD diagnosis, a doctor prescribed her fourteen year-old Adderall for treatment. Betsey started off only taking one pill, and came out on the other side coveting the entire prescription. She convinced her daughter she did not have ADHD, even though the pills seemed to help with schoolwork, to feed her addiction. This proves that the woman behind you at the grocery store pharmacy may have an agenda other than caring for her child. Furthermore, it proves how addiction is dangerous, all-consuming and, once tethered, out of control.

Personally…
My inner nurse and patient are having an intense WWE Divas match right now, and they’re both going to lose.
“Physical dependence can occur without addiction; this is the common experience of most chronic pain patients who are able to take their opioid medication as prescribed for pain but don’t develop the uncontrollable compulsion and loss of control. A desire to avoid withdrawal is not addiction.” –NAABT.org

If you are wondering why I left out the big opposition point of addiction = disease, I didn’t. I know addiction is an independent disease because it runs in my family, so I take it personally. There are different aspects of addiction relating to illness, a few being relapse, personality traits and heredity.

• Relapse. What is deeply upsetting about relapses with prescription pills is that first P word. Heroin, cocaine, meth and the like are illegal to make, buy, sell, touch, and be friends on Facebook with. Pain pills are created for a legal purpose, creating a hazy middle ground. Adding the medical field into the dark world of addiction is a twisted form of criminality.
• Personality. If you have an addictive personality and break an addiction, it will carry into another part of your life. It might jump from drugs to alcohol (ask Christopher Bell), energy drinks, smoking, caffeine or food. Anything in excess, even working out, is harmful. Moderation is not in the vocabulary of an addict in the thick of their disease.
• Heredity. Realizing you have this type of personality means being open about it. Family members can keep you in line, especially if they have battled with similar addictions. Always watch other family members who are in an addiction cycle, have been or at high risk for it. They may steal your pills, alcohol, get behind a wheel…you know where I’m going with this.

With a family history of addiction, I do not currently have an addictive personality. I have always kept this in mind when choosing a pain treatment plan, because I am still at risk. I was quick to visit the POTS Treatment Center because the therapy was free of conventional medications, and I could feel my pain escalating. After my J-tube was placed, the hospital did not wean me from an eight day Dilaudid PCA pump. I was not taking any pain medications at that time, so eight days of heavy narcotic withdrawal at one hundred pounds was not pleasant. I learned about my body, the difference between IV and oral drugs and how my body metabolizes them with gastroparesis & dysautonomia.
My pain specialist has previously given me morphine and Dilaudid in a liquid form. I have cluster headaches, which warrant such drugs. With a family history, I chose less potent drugs and higher pain every day. The weaning process was brutal.

Every single hospital I reluctantly roll into is a toss-up: will the doctor be genuine and open-minded or will they see my med list and label me a drug seeker? I used to wonder where such a thing came about, until this article. So many people have faked pain to receive drugs in the ER, meaning my actual emergency is questioned. It is infuriating that not only do I fight for my life every day, but now I carry the stigma of an addiction I do not have. I receive this judgment everywhere I go: the pharmacy, doctor’s visits, diagnostic tests, even in everyday life. I wasn’t dealt a bad hand. I need to start playing a new game.

Until the day that all prescription opioid addiction is cleared and I am free of stigma, I cannot rest. Unlike Ellen, I will not let stigma control my life or steal my chance at a higher quality of life. Chronic pain is a serious condition that leads to depression, anxiety and has a high incidence of suicide. Flooding such patients with unwarranted shame and guilt is not the answer. Even if I were an addict, being an ass to someone with addiction will only further their urge to numb the pain you cast upon them. Words have impact.

How can you help?
Do not pass judgment on anyone or their current situation, from here on out. You have to believe that each human is only fighting to survive in the best way we know how. Be kind. Be open-minded. Be comforting.

The Scribe ©
[Para]Sympathy ©
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Accessibility vs. Accessories: Kylie’s Controversy

The Scribe: Accessibility vs. Accessories

The youngest of the Kardashian-Jenner clan is the hottest of hot right now. Those plump natural lips are to die & don’t even get me started with her long legs! Every move she makes is either fawned over or violently bashed to a bloody pulp. One of her latest fashion shoots + follow-up with Interview Magazine has everyone stirring.

A secondary article written by the lovely Emily Ladau has won the spotlight for The Scribe. Her rebuttal article (found here) talks much about the mockery of this photo shoot. Only a few pictures were published of Kylie sporting a wheelchair, but that was enough to spark gunfire.

The Position
Emily exhibits anger about the photos, and for good reason. A wheelchair is not a prop, it is an aid for the ill or disabled. Those who truly need wheels do not find them fun, glamorous or disposable. We are permanently plastered to a chair and deal with the daily stigmas, social outbursts and frustrations that go along with it.

The main focus of Emily’s article was that Kylie was using her lifeline as a glamorous prop. It is a slippery slope when you drag a form of therapy or aid for the ill into your six-figure photo shoot. Many of us struggle to pay the medical bills pouring in at our doorsteps. She sits there, statuesque, with her gold plated chair & goods displayed for the world to see. After that photo was snapped, she stood up on those designer heels and walked away from that chair. We can’t. Surely she didn’t experience stares, rude comments or judgment placing up a handicap sticker that day. She lives in a different world than we do.

Another handle on this heavy door is the wheelchair used as an art form. Emily states: “Disabilities must be acknowledged as a reality, rather than appropriated and referred to as ‘art.’ There is beauty to be found among people who use wheelchairs, so much so that we should not have to put a non-disabled celebrity in a wheelchair and call it art.” A disability so serious that it requires one to find a leg replacement should not be glamorized and put on for a show. In any event, a truly disabled model would be a more appropriate star for the next shoot. Sorry, Kylie. If you want to use a chair, break a leg.

The Opposition
There are many factors at play here.
Kylie just turned eighteen years old. Having her business on blast for nine years (half her life–do the math), I would say affected her a bit. She even admits it, “I’m young.”  Her words & sentence structure prove so. Dying her hair made her feel free, like she could do anything or be anyone. Clearly the inexperience of true hardships (poverty, death, illness) hasn’t hit her. Any issues she did come across growing up were filmed and repeated on television for years. This photoshoot directly reflects her upbringing & inexperience.

Kylie admits to Interview Mag about having anxiety. The pressure to perform on social media is just one of many daily expectations of her. Growing up in the spotlight is a sure way to alter a young woman’s personality. When you can’t be yourself in a private space at home, who are you? An actress, 24/7. Half of her life was documented, and likely scripted. She was bullied as a child, in school and online. We all know how cruel young girls can be.

We know the harassment didn’t stop there. As a young adult, Kylie has attempted to open the lines of communication about bullying. She didn’t want to keep the focus on her own experience, but allow others to speak up about their own. Rising above your negative experiences with #IAmMoreThan is a way Kylie copes with it. She’s a human being, a young girl with feelings that may feel poorly about this decision in the future. Grant her grace.

For a Jenner, Kylie outright admits that money or material things can’t make you happy. “What I think is so amazing about having everything, and feeling like I have everything, is that I don’t really find happiness within materialistic things.” With that said, she has enough money to keep her great grandchildren comfortable. If she ever needed a wheelchair, she’d have the world’s best doctors there in a moment’s notice to fix her up. Insurance wouldn’t be a factor, while privilege is a main theme.  That Lambo ain’t gonna drive itself.

Personally
I keep everything in perspective. I have grown so much over the past few years, trying to let go of the words people say and the hurt I might feel. With that…

Money money money. Kylie J has so much, it hurts. The best dietitians, personal cooks, physical trainers, doctors and surgeons (plastic or otherwise) are at her beck and call. She hasn’t had to eat meals via J-tube or TPN. She doesn’t know what it feels like to have a catheter in for days or bruises in the shape of an oxygen mask pressing against your face. The wheelchair isn’t just a symbol of a disability, it is a daily reminder of all the hardships we have faced.

Irony really kicked me when I fell sick. Prior to being dependent on a wheelchair, I found them entertaining. Doesn’t everyone? Michael’s late grandmother had a brand new chair in the garage, so we took it out to play. In the fall of 2011 Michael and I timed each other, racing down the driveway, trying to stop before hitting the street. It was too much fun. That exact same chair is now my sidekick (pictured, left) whenever we leave for any public rendezvous. I have had many good times in the chair, more sick than healthy. I am not a hypocrite. Kylie merely took a few pictures in a wheelchair, whereas I goofed around in mine.

Emily mentions that Kylie was bullied, though she places a bit of judgment on it: “Indeed, people can be cruel, especially to those in the spotlight, but I don’t believe that Jenner knows the first thing about true experiences with oppression, and her photo shoot definitely didn’t help.” Oppresion? I can’t speak for Kylie on that behalf. But I was shocked along with the rest of the world learning of Bruce Jenner’s transition last year. Imagine having a newly-transitioned mother and all of your struggles with it playing out on television. Coping with a huge life change will bring bouts of grief, even if they fade over time. This holds true for the chronically ill, as well–ongoing grief and an ever-changing coping cycle. There is an intangible loss. Do not pass judgment onto others if you don’t want it upon yourself. That was the entire point of the article, to straighten up the true vision of wheelchair life. The door swings both ways.

I feel Emily opposes herself with the “art” quote. She finds beauty in the disabled, but wants to personally choose who can display such art. Although Kylie was the wrong person for this photoshoot, famous non-disabled models may bring more attention & publicity to wheelchair disability awareness campaigns. Mobility devices actually represent freedom, not oppression. There is beauty in having a chair. Embracing a life that you had forced upon you shows strength, courage and perseverance. All of those things are ten times more beautiful than a statuesque woman. If you ask me, Kylie was the accessory.

Emily says the chair is a part of her. “My wheelchair is not a symbol of an identity to try on. It is part of who I am.” I understand where she is coming from. I can’t leave the house without a sure testament that my chair and all its parts are in the back of the Jeep. I do not consider the chair to be a part of who I am, just as I don’t identify this illness as myself. I have illnesses, they do not have me. I accept that my disabilities require many crutches (wheelchair, cane, walker, actual crutches, oxygen tank, Port-A-Cath, etc.) but I refuse to allow these things to bleed into my personality. Thank you for helping me, disability aids, but you are not who I am.

I do not choose sides. I am my own person. Life is far too short to be angry or frustrated about another person’s actions. I am too busy trying to stay alive to care about Kylie’s golden wheelchair. She looks beautiful, and I would love it if she brought in an actual wheelchair user to partake in the shoot. Inclusivity is everything.

The Scribe ©
[Para]Sympathy ©
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October 2021: Detox Season

I can’t deny the peace I feel in my life at the moment. The house is still dark with that early morning haze; I’ve had four hours sleep as painsomnia precedes me. The boiler is buzzing as heat pumps through the baseboards, with additional heat from my detox mushroom latte heating my belly. We are surprising our nieces this afternoon at their kindergarten cheerleading practice in the pouring rain–I made sure to start charging my battery-powered heated hoodie so it lasts the whole time. It has been a month of hell and I am grateful for the safety of this moment.

A friend of mine recently asked how I get through the hard times, and I had to pause. How on earth do you address all of life’s bullshit with one answer? I guess it is because I feel like I don’t. Most of these sick years, that I have catalogued so meticulously, I feel like the hard times have not stopped. Adaptation took over at some point, I assume.

It took over just a few weeks ago. I Phoenixed myself once again.

Two months ago I started seeing an integrative family practitioner who put me on a new regimen. I was more than hopeful. After nine months of waiting and being told it would be “worth it” by staff members, I held onto this appointment as a fresh start. I had no other health avenues left. My body grew increasingly painful this year and I could not understand why. My lab work showed a massive overgrowth of Candida albicans in my blood. The levels were so high it actually put my body into a state of prediabetes. I discovered that Candida overgrowths of this magnitude come from years of surgery, PICC lines, ports, TPN, low protein-high sugar diet and high-stress lifestyle. Ding, ding, ding. The hospital techs usually do not bother looking at outpatient labs but they called and told me to come to the emergency department to get treated right away. I didn’t.

I also tested positive for Epstein-Barr virus and need a Western Blot test for Lyme. The plan was to detox one infection at a time, so we started with Candida. The new NP put me on a heavy Nystatin regimen and some detox facilitating suggestions: OTC teas, Interfase, DGL, Motility Pro, activated charcoal, Epsom salt baths, and Welchol. I am on an even more strict diet than I was before: no dairy, caffeine, sugar. The Candida detox diet is complicated & lengthy but my menu was already limited to begin with. She told me she would get me to feeling better, that I was not in this alone and I could call if anything went wrong with the detox or I needed help with symptoms. She actually warned me that this would be more intense for me than most people given my history & frail condition. It is also likely that that detoxing will cause allergic reactions, & possibly anaphylaxis, in someone with a mast cell disorder.

Michael made sure both my Epi-Pens weren’t expired before I popped that first pill. I was okay for a moment but with an antifungal dose of 1,500,000 units, it hit me hard on day five. It was worse than when I had COVID, physically shaking so hard from the chills. It felt like an autonomic seizure, and I had soaked through to the mattress pad with sweat. I was glued to my bed with my face over the waste basket. The pain was unbearable. Candida detox can mess with hormone production and caused a serious mental health issue. I dealt with the aches, dehydration and depression for a week before contacting the office for help, so I think I sucked it up enough.

When Michael talked to the woman on the phone and told her I needed help, she got irritated and told him to take me to the ER if I was suicidal. The last thing you do when a patient comes to you in the midst of a depressive episode is turn your back to them. In the evening the NP FaceTimed me, angry that I made her call me and immediately told me “she was not the right practitioner for me.” I was stunned.

She also told me to take apple cider vinegar for the pain. So helpful.

I am angry and frustrated that I have to start over after already starting over so recently. I invested time, money, literal blood, sweat & tears into this treatment just to be dumped, again. This is life with chronic illness. You never stop starting over. And I think that’s my answer to the original question of how to get through the hard times. When the plan doesn’t work for you anymore, create a new one. You may execute an elaborate agenda just to have it fall through, by someone else’s doing, before you make progress. Don’t waste time being angry at those who did you wrong. Cry, scream, wipe away the tears and keep rollin’.

Onto the next.

Silver Lining

What is great about integrative family healthcare detoxing: it is a mostly out-of-pocket treatment and can be done at any facility. I refuse to give my money to someone so ready to give up on me. I didn’t quit. I went through the pain and she didn’t even want to hear about it in exchange for cash. I am continuing my detox and feeling much better than I was a month ago. It takes a long time for the pain to start lifting but I am seeing a difference with my resilience. Once I am able to get back to my treadmill routine I think my symptoms will improve even more.

Diet Modifications

I can say with confidence that I have finally found a diet that works for my current lifestyle. Many people would say it is boring but to me, it’s invigorating. I will likely never eat solids again, but I don’t care much. My only goal is to fuel my body naturally and keep up with school, family and have a mildly satisfying social life.

I know this Candida overgrowth has been fueled by my high-sugar intake. Tim Horton’s French vanilla cappuccinos and Biggby’s Chai tea lattes with extra whip have kept me going for many years! My body is screaming for real food, not just calories but a variety of nutrients. Supplements can’t cover what food provides. I have the perfect privileges here in this home that most do not: support and resources. Michael enjoys cooking more than I do eating and comes up with new soup recipes weekly. I have determined that I am going live one of two lives:

1. Waiting around two days a week for nursing visits and supply deliveries, clearing space in the refrigerator for TPN, getting PICC lines replaced, hospital stays & spending mass amounts of money on tube pads, belts, PICC covers, stoma skincare products, feeding backpacks…
2. Spending the money on expensive bougie low-sugar pea-almond-oat protein products with no flavor or happiness, and using extra energy to cook & store foods within my narrow limits grown fresh from our garden.

Number 2 is only possible because I have recovered enough health to stand intermittently in the kitchen while helping Michael cook for me. I hold the official titles as Stirer and Assistant Chef; I assume Head Chef only when Michael’s working storm. I start every morning and wind down every evening with a mushroom tea latte + Ripple pea-protein milk or Simply Almond milk. Pre-packaged plant-based protein soups get me through daily life: Imagine Foods, Pacific Foods, Kettle & Fire. I mix Michael’s creations with some of these broths to add extra protein and flavor. He makes most soups with onions, garlic, carrots, celery, mushrooms, water or broth and mixes it up with chicken or sausage, vegetables (peppers, leeks, bok choy), herbs and spices. There are no recipes, just his Italian magic.

If we eat dinner early enough I can tolerate a small protein shake after. Simple Clean Eats has whey protein powders that are too delicious. I add my Ripple Milk, ice and a scoop of protein to my Ninja blender for an evening treat. There are a variety of flavors like strawberry cheesecake, s’mores, pumpkin pie, caramel toffee, bananas foster–need I go on? The snickerdoodle flavor goes well with the Amazing Grass Greens Detox & Digest super greens powder from Amazon. I drink expensive store bought fresh green juices, and The Verde from Beyond Juicery, to sip on between protein drinks.

I am not a big fan of whey because of the dairy component. I did okay living off the casein in Muscle Milk for years, which is another milk-derived protein. Whey and casein are separate proteins and metabolize differently in the body, so we will see how the whey works out. I may alternate between whey & soy protein powders if I find a good one. I am open to suggestions!

That is pretty much it. I know it’s not much but I feel confident I can keep reaching for the stars on this plan. It might not be sustainable forever, and I can’t build off it at the moment, but I’m living.

This detox lasts two more months, and I am seeking a new integrative family health facility to draw more labs and continue the process. The mental clarity I have four weeks into this treatment is motivating me to propel forward. The stress of school will not capsize me and I will not let another weak practitioner slow me down.

And while there is always room for a good detox, it is Scorpio season first and foremost, just to be clear. ♥

[Para]Sympathy ©
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Summer 2021

I think this is the longest period of time I have gone without blogging. Feels weird, but good to be back.

I have been swamped with school. Essays have encompassed my summer, so I am still doing plenty of writing! I wasn’t thinking straight and took two classes, eight credits spanned across eight weeks. The coursework is heavy compared to sixteen week classes. Nursing school was intense because of the eight week cycles between different rotations: pediatrics, neuro, psych. But that was expected–we were forewarned of the workload.

School has been good and bad for my health. Focusing on facts and reading helps my anxiety when I’m stuck at home alone. Michael has been working like a madman with the summer thunderstorms, and tornadoes! Unfortunately he lost a fellow lineman and friend in an accident on the job. These funerals are devastating; my heart aches for his family. You can imagine why my anxiety has amplified this season with Michael performing the same dangerous work. I spend much of my time at home trying to keep my health in check while chipping away at assignments in-between. I meditate, read a chapter on civil rights, do my PT stretches, take a quiz on civil rights, fold the laundry…

Dehydration, lack of protein and brain fog are forreal so I have to reread each chapter twice. I use different colored pens with coordinating highlighters to outline the chapters. One good thing about being 31 and in college is the ability to buy books and fuck ’em up with my doodles because I don’t need the money back. I can write notes on the side to help me remember names, events, bolded words, or whatever I think will be on the test. My memory is so bad this is the only way I can recall information, by associating it with a color and my own footnotes. It’s time consuming and very hard on my neck and back, but I’m getting a 4.0 this semester. Must be doing something right.

I’m lonely as hell some days but I don’t have energy for anything else. Most people’s bare minimum is me working at my hardest, and that’s okay with me. I feel empowered doing this for myself. This degree is going to be mine and only mine, and I have a good feeling I’ll be able to help a lot of people. At least I hope so!

School has also been hard on my mental health. I have been doing a lot of trauma work in therapy and going through wild mood swings. One day I’m pounding out four essays (at 102% in the class), the next Michael is rushing me to Ann Arbor to get an emergency ketamine treatment because I’m suicidal. It was that, or the psych ER at the University of Michigan. Memories came flooding back, along with guilt of how toxic I had been in the past to some people. It’s depressing to self-examine. I hold anger for some people who should have treated me better over a lifetime, and I’m mad at myself for allowing it. I have swallowed that pill, along with many others, and am moving forward with more knowledge. It’s freeing just as much as it sucks.

The whole time I doubted my abilities to go back to college, I never considered that my mental illness would be the barrier to me getting work done.

That doesn’t mean my body has been cooperating. All the summer parties, weddings, funerals & weekly appointments at the hospital have depleted me. I don’t have time for much fun, and I’m trying my best to enjoy weekend festivities with this level of pain. My body hurts so bad, I do not know what else to do for medicinal management. I cannot possibly smoke anymore weed, y’all. It doesn’t even work on me anymore. Rick Simpson himself would be impressed with my tolerance.

My stomach issues have shifted. I am maintaining weight but it’s difficult and my stomach hurts all over, all day. Epigastric, left lumbar, right hypochondrium–the whole nine. On top of it I tore a few muscles in my neck, which the MRI confirmed with a major spasm. There’s also a protrusion at disc C4-C5 so I may need more specialized PT. My shoulder’s were visibly swollen, but not in a beefcake way, more Quasimodo. But isn’t Quasimodo totally offensive? Like, leave the poor guy alone, he’s still cute. He’s probably in a lot of pain and needed some steroids and tizanidine like I did. The pain was so intense, split between that, my cluster headaches & chest pain. My heart has been wonky too. But somehow, I’m so grateful for all of this. I’m kinda sorta living a semi-normal life.

I do not have a feeding tube hurting me all the time. I do not have a tegaderm eroding my skin away, leaving scars from clawing at my PICC dressing (I would scratch in my sleep, according to Michael). Yes, I need my chair for some things but not all. At least it got approved by insurance, all ready for Disney World in October. The good doctor, that was a wheelchair user himself, advocated for me and even delivered it personally. He rolled himself out of the van, rolled mine out and even wheeled them up the driveway. It was an impressive rig with several lifts. He was my disabled Superman that day.

I also found a new general practitioner, recommended from one of my best friends. She spent over two hours with me, an hour of that being assessment and history. They actually asked details about my trauma and hooked me up with a lot of new specialists:

1. A naturopathic infusion center that could potentially upgrade my weekly saline sessions. I’m still so tired and dehydrated because I need more fluid, I just do. Maybe a certain vitamin, a little CBD or cardiac medications could make the difference. I’m not ruling out holistic or modern medicinal treatments and additives–whatever works, works.
2. Homeopathic psychiatrist. I did not know anything like this existed, or anyone! I’m not talking about St. John’s Wart kind of treatment (because we all know it causes migraines). Actually, I’m not sure what to expect. She said this doctor would be able to help with MCAS and POTS symptoms, an overall autonomic nervous system reset. We’ll see how that goes…
3. Dermatology to check out a few cancer-esque moles I have lingering on my body. Ironically, the biggest one is on my bum. I mean, if you have to have skin cancer, that’s probably the best place. Or worst? I’m not sure.

She didn’t want to overload me with specialists so we’re starting slow. Her words: “Balancing life and health stuff will affect your mental health and we don’t want to overwhelm you. Slow and steady, we’ll get there.” Next on the list is cardiology, GI specialist, specifically echocardiogram and upper scope to assess for Barrett’s esophagitis. I always predict what tests I want done before my appointments and she covered everything I wanted.

I am getting the BRCA testing done at the end of this month. My aunt had breast cancer about fifteen years ago but my insurance wouldn’t approve it in the past. I don’t know why I’m going through with it, actually. Either way I wouldn’t get a prophylactic mastectomy, but it would be nice to know if BRCA1 or BRCA2 precedes me. BRCA2 is associated with melanoma, so that could be interesting…

Last but not least: I have twelve cavities, and had all four wisdom teeth pulled in high school. Do the math. I am getting four of those filled next week, and brushing with super special fluoride ‘paste like crazy! I guess almost a decade of vomiting, acid reflux and high-sugar (i.e. popsicle & Tim Hortons) diet are catching up with me.

Sociology finals. Severe thunderstorms. Showers, both wedding and baby. Skin cancer? Such a pain in the ass. What a weird summer. ♥

[Para]Sympathy ©
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Back to School

The title gives it away so I’ll just cut to the chase: I’m going back to college!

Generally, the response I get when I bring this up is “oh, so you’re all better then?” 

No matter how long I’ve been sick I hear this every time I make any kind of moves forward. I’d prefer a hearty “congratulations” or an eager “good for you!” Oh, the stupid shit people say about their perceptions of my condition.

I haven’t kept down more than 1000 calories in a week, and I currently have a wheelchair order pending with insurance. But I’m going back to school regardless of my health status. Such a wild declaration makes Karens of the world bleed from their ears. The belief that you can’t possibly go back to school with a chronic illness is ableism, just to be clear. God forbid sick people actually blend into society, right?

The Spark
The idea of returning to college didn’t occur to me until a few months ago. I mean, we’re still in the middle of a pandemic. I’ve recently been depressed to where I couldn’t get out of bed in the morning, and my cluster headaches were so severe I felt like I was actually losing my mind. If you had told me in January I’d be signed up for college classes by April, I wouldn’t have believed you. Not a chance in hell.

My friend & Monarch partner, Ashley, told me about this app called Edx where you can sign up for free classes, programs & degrees. If you’d like to receive a fancy paper certificate you can pay a fee to test out of a course. The construction in our house has been driving me up a wall (grateful, but exhausted) and I needed a distraction, from the pain and noise. I gave it shot to see if I could physically even handle a class and ended up excelling. I finished a ten week women’s history course in seven weeks and aced it. Most importantly, it filled me up with a confidence I haven’t known in a long time.

The Motivation
My original plan was to take two Edx classes at once to push my limits but plans change. After my grandmother passed I took a few weeks to grieve, write thank-you notes & clean her house. I had a lot of physical recouping to do in-between but still showed up for all my engagements. Last month I participated in a catch-up episode for Creating Common Ground and it was revolutionary for me.

Myself, along with four other beautiful ladies, talked for an hour about what we’ve been doing since our podcast episodes aired over the summer. I have known CCG leader, Jess, forever and Jessica since high school, while Kyler & Emily are new friends. After talking about my Edx experience all the girls clamored on about how I can do this for real, go back to real college and pursue my dreams. Jessica, who is chronically ill and working on a masters in nursing herself, planted the social work seed in my brain and it began to grow rapidly.

Why social work?
From a family history of addiction, social injustice (and straight up malpractice) regarding my health, sexual assault and mental illness, my life experiences have already trained me for this field. Being college educated makes a difference, too. I have felt what it’s like to be treated differently in the roles of a nurse versus a patient. The progression of my illness has proven that injustices exist within our healthcare system. The worst part? My privileges put me at the top of the totem pole and I still can’t get proper care. There’s little hope for those struggling in other ways and I want to work to change that.

Clearly I have a passion for all of the above but my heart refocuses on girls & women. For years I have written this blog as a free resource for those struggling to make it through chronic illness of any kind. Monarch Women’s Group has become an extension of that, where I counsel my fellow woman through a variety of issues. According to my advisor, these hobbies count as service hours. I volunteer my time to help others even when I can’t help myself. Isn’t that the definition of a social worker?

There’s a lot I don’t know. A lot. I started Monarch as a way to help women through their health issues but what do I know about the diversity of sick women? I know a ton about how to help middle-class white women with a strong support system manage their disabilities. I know very little about how to help the LGBTQ+ community, women of color, and other marginalized groups overcome healthcare barriers. Until I am fluent in helping every type of woman (and human, honestly), my work isn’t done.

^I think I just wrote my personal statement for entrance into the BSW program…

The Drive
After our CCG Zoom ended I dedicated most of my time to learning about the process of re-enrolling. I have applied and been accepted to universities in the past but only ever attended community college. I despise the idea of going back to the school that screwed me over all those years ago. At the end of the day I won’t let the asshole dean of nursing get in the way of my career goals again.

After a lot of research, advising appointments, and mental gymnastics over whether or not I can handle all of this, I officially enrolled for Summer 2021! My first two classes are Intro to Sociology and American Politics. I have 75 completed credits (that number alone gives me a headache) but still need certain core classes. I’m hoping to get into the Bachelor’s program at Wayne State University in Fall of 2022. If my health interferes, Fall 2023. 

Can I? Should I?
Every day I wake up and have a mini panic attack over whether or not this is going to be too much for me. I don’t just have physical chronic illness. I get depressed for months at a time and can’t focus on anything except making it to and from therapy. Overnight my life went from unfocused to career-driven. Okay, not exactly unfocused, but my entire existence revolved around my own illness. The lifestyle I created to keep myself alive was suffocating me.

I used to count every heartbeat & calorie trying to keep myself on track. This method never worked in my favor, not once. Why overanalyze and put in the extra effort if the outcome is the same? I had quite a bit of anxiety to unpack before I could accept being sick. To a degree, I’ve focused this blog around trying to get better instead of embracing myself as is. We can do both, ya know, work toward better health while accepting limitations.

After being dropped from nursing school I struggled with trusting college facilities. Wayne State has reassured me multiple times that I’m not in this alone–that’s a quote. My advisors are incredible, nothing compared to my experience at Macomb. I really shouldn’t shit talk them too much. I am a current student there, officially a Monarch, and simultaneously a Warrior. With the irony of these mascots, I’d say the stars were aligned. Wouldn’t you?

It actually makes me laugh how I say whether I “can” or “can’t” do something. Can I go back to school? Can I handle the workload? Why didn’t I doubt myself when I was going to physical therapy to rebuild my leg muscles? How come I’m not more proud for helping people regardless of my own issues? I wake up every day battling anxiety, chronic pain & the unknown of whether or not I’ll be able to eat or drink enough. None of this has stopped me, and I won’t limit myself to saying I can’t go back to school. I’m doing it.

Honors I was accepted to the Honors College at Wayne State, which is good even if I don’t get accepted to the BSW program for a few years. It’s an extra work, heavier courses and more credits required to keep up with Honors. I’m giving it a shot. Go big or go home, right?

I will pace myself, take a break if my health suffers and won’t strive for perfection. My long-term goals are to expand MWG, research how to better serve the healthcare community and possibly start a small practice on my property with Jessica. Integrative family care, at your service.

I’m going to be fatigued. This summer may not be as adventurous as last summer, but my health hasn’t been up to par anyways. I know I’ll be stressed and probably need Michael to pick up my slack at times. But I also know that I get butterflies every time I think about the future now. I much prefer registering for classes than an upper GI series, that’s for sure. ♥

[Para]Sympathy ©
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Real Talk: Body Memory & Granting Yourself Grace

Have you ever had an instant awakening that revolutionized the way you think and live?

Just two weeks ago I would’ve rolled at my eyes at this very question. I used to think enlightenment was reserved for Buddhists who dedicate their lives to finding it. Despite my religious history, I recently had an epiphany-like experience that reframed my entire perspective. It was fortifying & fear-provoking in one quick swoop.

Before this wake-up call I was stuck in a time where I wanted to jump out of my own skin at every waking moment. I have always felt dirty & bad, like the wrong in my household/school/world was my fault. Every move I made was an effort to hide the truth, observe & act normal. Piece by piece I tried to mold myself into something the world accepted, someone who wasn’t “raped” or “sick.” Showing my true face wasn’t an option.

While I learned in school how to care for patients who have been sexually assaulted, I didn’t take that advice for myself. I never even considered it. My psychiatric rotation taught me that childhood trauma takes a toll on the body that carries into adulthood. Survivors are basically frozen in time, with childlike tendencies, until they begin the journey of healing from that assault. Keeping it a secret only makes things worse and can lead to skewed coping behaviors like substance abuse and disordered eating.

I am a textbook sexual assault survivor: immature reactions (comes out as severe anxiety over mundane issues), exacerbation of physical illness, night terrors, suicidal behavior, body memory, inability to move forward despite the support & resources. I can feel myself hanging onto the past, but for what? It’s not like I lost a nursing career, and I’ve proven I’m strong enough to overcome the odds stacked against me.

All of that meant shit at the end of the day, because it’s different when it’s you.

The current definition of body memory is considered a hypothesis but it’s very much real. Since memory can only be held within your brain, not cellular tissue throughout the body, scientists try to debunk this one. It’s not so much the body remembering as it is the brain only releasing incomplete bits and pieces of those memories. With body memory, you get the physical manifestation of the traumatic event without the visual reel playing back inside your head. Dissociation is the brains way of protecting itself from information it is not equipped or mature enough to process. In my opinion, body memory is a mix between reexperiencing the trauma (to alert you that something is wrong & needs to be addressed) & dissociation. It is the segue between a complete disconnect, and processing the details of those suppressed memories.

Last week I had my first intense body memory. Immediately I knew what it was and what was happening. Fuck, it was intense. It was far from foreign, like it’s happened a million times before. The tightness in my chest gripped me so hard I couldn’t expand my lungs, like my veins were circulating lightning rather than blood. Every cell felt hot and swollen; I was shaking so hard my knees were popping. I’m not sure how they didn’t buckle. My eyes were fixed downward in a trance. Goosebumps blanketed my skin & my hair stood on end. I even braced myself, if that makes sense, prepared for impact.

My therapist tells me to close my eyes and “go inside” to analyze where these feelings are coming from. Typically this method helps me manage symptoms better in the future. But during this episode, I didn’t dare. I knew where this stemmed from and actively do not want the mental video to play back with it. I’m good.

Reexperiencing the physical symptoms made me realize I am exactly where I’m supposed to be and always have been. I didn’t tell anyone I was abused until 3 ½ years ago, not even my counselors. I couldn’t begin the healing process until that secret was out of the vault. When unresolved abuse met chronic illness, I fell apart. But I can’t be mad because, even then, I was right on target with my healing process.

When I pushed everyone away during our initial home renovations because I didn’t know what boundaries were,

when I kept a secret stash of money, beginning at the age of nine, just in case I needed to run away,

when I would cry every time someone made a mean comment about me being in a wheelchair,

when I strictly followed every one of my doctors orders because I was incapable of standing up to a man,

I was exactly where I was supposed to be. While I’m not proud that I hurt people as a result of anxiety, I don’t feel like a failure or guilty for behaving this way. These were appropriate responses to a fucked up situation. I choose to grant myself grace during the times I was trying to survive in the only way I knew how.

If you feel misplaced in society it’s likely because you were. I tried desperately to fit in and be like everyone else, healthy and happy. People told me to shut up about the abuse when I did finally come out with it. I didn’t blog about it often because that’s not what people want to hear–even my creative outlet has been controlled by societal stigmas. I write to help my readers feel less alone, so the whole truth is especially necessary within this space.

Let yourself evolve. Let yourself hit rock bottom & be proud when you choose to rebuild regardless of what’s stacked against you. Grant yourself grace. ♥

#RealTalk
February 9, 2021
[Para]Sympathy ©
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Wheelchair Clinic

Learning to walk again is one of my greatest accomplishments. Taking that first step launched the future of my recovery & got me back to feeling like myself. Nothing is guaranteed but if I didn’t put in the work, it wouldn’t have happened. Even if I did, this type of treatment is never a sure thing.

I’m one of the lucky ones, truly. Not everyone with hEDS is able to get back on their feet or maintain progress over time. Every activity is carefully planned so I don’t injure myself and create regression. Hydration, supplements, PT, rest, rinse & repeat.

Needs & Fluctuations
As much as I’d like to pause it at the top, the roller coaster never stops. I can walk outside and use the treadmill during peak months, but I need a wheelchair through the troughs. When too sick to do treadmill training, I have to stretch my leg muscles or they’ll tense up trying to compensate for the laxity. That tension over a period of months can knock me clean on my ass again if I’m not consistent. If I overstretch and hyperextend, my muscles get significant tears and my body swells up.

Unstable joints aren’t the only issue that stand in the way of my freedom to walk: cluster headaches, massive weight loss from GI flares, long periods of depression, stress & loss from being a human in general. When I can’t maintain one body system, the others go into overdrive and eventually crash. I never know when it’ll happen or how bad the decline will be. Preparing for the worst and hoping for the best is a daily practice.

Losing thirty pounds over the last twelve weeks has been devastating to my bone structure. My muscles have atrophied significantly so I have no cushion to my backside–I call it my grandpa ass. These starvation cycles have been a major theme in my life, and on this blog. They’re here to stay.

Out with the Old
When Michael’s grandmother passed in 2011, the family let me use her brand new wheelchair to save money. I rolled that thing right into the ground. It was never a proper fit for me, either. It is twice as wide as my body so it was difficult to propel on my own with these weak shoulders. There’s essentially zero lumbar support or cushion to sit on, cutting off the circulation from my legs after about ten minutes. As grateful as I am to Nonni (may she rest in peace) for her generous donation, it’s time for an upgrade.

Beaumont Wheelchair Clinic
This was a very awkward appointment. There isn’t an official clinic but my pain specialist hooked me up with some medical school buddies who run it on the side. I was instructed to go to the PT/OT center at the main hospital and wait in the exercise room. The doctors didn’t know I was their patient because I didn’t roll myself in, I walked. They seemed dumbfounded that a person with semi-functional legs could possibly need a wheelchair. I was dumbfounded that a room full of wheelchair specialists could be that ignorant about the vast need for mobility aids. We don’t have a certain look, ya know.

Two residents took me back into a room with three other doctors, all male. One was a wheelchair user himself so I knew he’d be the least ignorant. Everyone was polite but had zero knowledge of EDS or what it brings to the table. They didn’t ask the right questions and I wasn’t completely forthcoming with my health struggles as I usually am. My grandma passed away only twelve hours prior so I was off my game, in a total fog.

Assessment
They asked about my joint issues, how frequently I fall and what my routine is like. I realized how my health has declined over the last few months & my answers have changed. Have you ever gotten so used to questions at the doctor’s office that you have go-tos that just roll off the tongue? My mind was stuck in September when I was doing so well, walking around the farm with my friends in the morning and pumping out a 5k in the afternoon. It dawned on me that I currently fall if I’m not paying attention to how solidly my feet are planted on the ground. My knees give out almost every time I get up and I the farthest distance I walk is around the grocery store. I beeline it for what I need and get back to my vehicle. I’m at least a year out from tackling a 5k again.

So, basically, I’m in a trough.

After the first round of questions, the good doctor measured my entire frame in different positions. , like distance from my knees to the floor, between my shoulders, between my forearms and fingertips, with and without shoes. I learned things about my posture I hadn’t heard from physical therapists, like how curved my lower back is to an extent of needing specific lumbar support. My weight fluctuations affect how the chair and cushion will fit, as well as how wide my seat needs to be. Michael’s height is a factor too, regarding how high the handlebars need to be. They asked if I wear heels in my chair (I do) and made sure my legs wouldn’t be angled too high in case I have on a dress or skirt. I was honestly grateful that the men considered my modesty and comfortability as a woman, at this point in the exam, anyway.

Two more male doctors walked in and I actually laughed out loud. They weren’t quite as understanding or polite. The first one said “EDS isn’t a good enough diagnosis to qualify for a wheelchair.” The second made me do party tricks and “prove” I have hypermobility. EDS is good enough to render me immobile but not for an actual wheelchair. Got it. 

PSA: if a physician makes you hyperextend your joints and risk injury to validate what your genetic testing already has, he’s not a good doctor.

After the exam I tested out various chairs they’d prepared for me with different cushions. I need a lightweight model that’s easy to lift in and out of my Jeep regularly. We settled on a matte charcoal gray KI Mobility Catalyst 5Vx with narrow lumbar cushioning. It is a six stage ordering process from measurements to delivery.  The doctor on wheels made sure I knew that he would do everything in his power to file this under specific codes so my insurance company will approve it. I told Michael we should put some money aside now just in case they deny me. They almost always do!

Overall, I’m seriously excited for this! While I hope to regain some weight & strength over the summer, this chair will allow me the freedom to live without exhausting myself. I can’t stop thinking about what life will be like…

Wheelies around the zoo with my friends and their kids.
Taking my time at the mall, just window shopping.
Boardwalk dates with my honey.
Making the most of our Disney trip in October with minimal recovery time!

Walking is freedom. Rolling is freedom. I’m grateful to live with the privilege of choosing my own form of freedom. ♥

[Para]Sympathy ©
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Emergency Headache Management

“What’s the worst pain you’ve ever had?”

I don’t know why people frequent this question with me, but there’s only ever been one answer: cluster headaches.

Last night, however, my pain leveled up with a dual-action hell, maximum migraine + maximum cluster headaches…simultaneously.

The thing about cluster headaches is the sudden unadulterated hell, and then nothing. At 6:41PM I was hyperventilating and screaming on and off for what felt like eternity. At 8PM I was fine, sitting on my couch vaping my life away. Completely fine.

The Aura
This cluster cycle got worse in November and hasn’t broken since. My insurance is fighting me yet again on the 300mg dose of Emgality. A few weeks back Michael got me a few sample injections to hold me over and said he’d pay the $3000/month out-of-pocket if need be. “We’ll sell the Buick if we have to” were his words. For everyone who knows how much he loves that car, that’s a pretty serious statement. Pure love, no doubt.

The samples helped with the severity of the headaches for a few days but it didn’t last. Clusters get worse at night so around 5PM I can feel the tension of the day getting to my neck. It starts pulling toward the top of my head and progresses. I’ve been having them daily ever since, except yesterday was different. I had a mild migraine most of the day and had to actively rest in the evening as it worsened. In a matter of minutes the pain spiked, and I struggled to do all the things I do to prevent a migraine when I feel it coming on (in this order):

• Sumatriptan 50-100mg (depends on severity)
• Sublingual Zofran 4-8mg
• Bubble bath + vaporizer
• Cefaly on my head, repeat cycles
• Benadryl + Phenergan if I can stomach more pills
• Migraine throat spray
• Migraine rollerball on temples, forehead & back of my neck
• GinGins or peppermint candy to help with nausea
• I lay on my bed in my room with the doors closed, lights out and cell phone nearby in case I need to talk-text Michael for help.

This is around the time when I’m bargaining with God to get me through it without crying (tears make everything worse). Last night I was so nauseous I couldn’t move my head a millimeter without gagging. Over the weekend I had a severe SMAS flare and knew I couldn’t throw up or I’d have to go to the hospital. My entire motivation was to not go to the hospital. The last time I went to the ER for an SMAS flare they gave me Haldol because they thought I was having a psychotic episode. And I have never gone for a cluster headache because no one believes me with, well, any kind of pain. You can’t prove a cluster headache on diagnostics so…

Yes, you read that right. I have never sought help from the hospital in the midst of the worst pain I ever felt because I know they will dismiss me as a drug seeker.

How fucking sad is that? I mean, when you have anxiety and depression and don’t “look sick,” you can’t ever be in actual pain that needs actual attention.

The Interference
Michael does everything right even when I can’t speak. He picks up on my hand gestures and grunting, somehow taking direction from my Cro-Magnon level of communication. Yesterday, it all just went to hell. He asked if he could cook (smells really aggravate me, especially sausage) and I said okay. It didn’t take long for the smoke alarms to go off and the food smell to come drifting into the room. Ironically, he made sausage.

At that moment I could feel a cluster headache coming on, and I knew it was going to be bad. I had to get out of the house regardless of how cold it is this winter. With every ounce of energy in me, I forced myself up and made my way to the back patio to lay on the wicker loveseat. The cluster hit the second I stood up.

I was panicking, nearly paralyzed but I made it. The icy air felt good on my face, even if only for a moment. Michael trailed out the back door after me when I started convulsing. A migraine forces you down, makes you close your eyes and breathe carefully. Cluster headaches get me on my feet, thrashing around. I have to find a safe space to have episodes so I don’t injure myself, usually on my bed or couch. I keep pillows in every room of the house in case I can’t make it. I’ve sprained my wrist, pulled hair out, dug my nails into the back of my neck during episodes. I’m an animal.

The two opposing pains made me feel trapped in my body. I wanted to scream but couldn’t muster it up. The Cefaly device kept me from passing out from the pain; the time between cycles was excruciating. Michael said I was outside for about five minutes before he carried me back to bed. My first words were “I don’t know if I can do that again.” I thought headaches like that were reserved for end-stage brain cancer.

What now?
This morning I looked at the security camera app to find a perfectly clear video of my horror on the wicker loveseat. There’s also footage of Michael airing out the house, getting me a blanket & waiting until I was stable to bring me back inside. Even after all that pain, I can’t help but feel lucky.

I have a few treatment options lined up. I can’t keep putting all my eggs in the Emgality basket…

• Psychedelics (specifically psilocybin & LSD) are known to treat cluster headaches, and 50% of (recorded) people say it cured them. Psilocybin has been approved to treat complex-trauma and PTSD as well. I have an appointment to speak to my ketamine specialist about this treatment to get more info. YES, I am desperate to try magic mushrooms at this point. No shame.
• Occipital nerve blocks are supposed to help for a few weeks at a time. Hopefully my insurance doesn’t give me a hard time about this too.
• I may have to beg for an oxygen tank and steroids, or maybe I’ll just show her the video! Can’t say no to that.

So thank you weed, Cefaly and my darling husband for saving my ass last night. Alls I need now are some ‘shrooms and I’m good to go. ♥

[Para]Sympathy ©
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Real Talk: Anger & Healing

I had a breakthrough today in therapy and I already feel like a different person.

I didn’t mean to have a breakthrough. I actually walked into today’s session feeling okay. The last few months I’ve been in a thick depression. A few weeks back I asked Michael to hide the guns. While I have been managing it well (reaching out to my people, taking my meds when I need them, allowing time for self-care, etc.), I haven’t been able to shake it. The week before my birthday was the last time I felt like myself and I couldn’t figure out why. I had a ketamine treatment at the beginning of November and it didn’t do a damn thing, a first for me. If anything, the past two months have forced me how to live in the midst of suicidal ideation without an end in sight.

But why?

The DPDR diagnosis was a validating one but it took me by surprise. Usually I take new diagnoses with stride, learn all I can about how to manage symptoms and move forward with knowledge and power. I let the stigma of this condition cloud my process. I didn’t put a million hashtags on a big dramatic Instapost to connect with others on a similar journey. That’s my MO. I haven’t really told anyone about it either, maybe a few close friends. Even if I wasn’t admitting it to myself at the time, I fell prey to the societal shame regarding mental illness.

This is true for my anger as well. Anger is an important step in the grieving process for a reason. Losing your health or a part of yourself through trauma are no exceptions. We go through these processes over and over as new aspects of the loss become apparent. Thus, restarting the cycle. Most of my anger comes from bottled up emotions of the past. I held it together through some colossal shit when I should have been screaming. I was calm during every storm, acted like a little lady while being ravaged by evil forces. That comes with a lot of baggage. I would be assaulted and get ready f0r school the next morning. I sit still through tortuous procedures and don’t make a peep. Those emotions don’t go anywhere, they fester inside you until you let them out. If you don’t let them out in a controlled setting, they spew out at the worst of times.

Dissociation is a coping mechanism, a survival tactic. I stuffed my emotions down, losing memory during much of the trauma, so I haven’t been able to navigate those emotions on demand. They come out when they come out no matter how inconvenient it is. I am in a safe place now so my brain allows me to feel what I need to feel without direction. It’s like I have some feelings and some memories but no correlation between the two. The emotions & events are muddled together after years of chaos & dissociation. On bad days I find myself melted in a puddle in the middle of the living room screaming at the top of my lungs while home alone. On really bad days I lose it on the receptionist who’s simply being complacent at her low-wage job. I bleed on people who didn’t cut me.

I used to be so ashamed of my pent up anger I wouldn’t speak of it, let alone blog about it. I didn’t know where it came from but felt it so intensely. I would be polite to creepy men while secretly wanting to punch them in the face with brass knuckles. After an outburst or cry session, I feel incessantly guilty and beat myself up for not having control over my emotions like I used to. Authority figures in my childhood taught me to save face rather than express my emotions. It never occurred to me that these feelings are valid and have a purpose. I need to focus my anger, not ignore it.

If we don’t move through the steps and grieve properly, we cannot heal or reach acceptance. It’ll simply be an ongoing cycle and consume us. Today my therapist told me these feelings aren’t just healthy but it means I’m on the path to true healing. I have been actively working on my complex-trauma since the end of September with this counselor and that’s why I’ve been feeling so bad.

Healing is ugly. It’s messy beyond reason. It’s temper tantrums & mood swings galore. It’s ignoring people for long periods of time because it’s already too loud in your head. It’s feeling so suicidal that you avoid driving so you don’t get tempted to run red lights. It’s memorizing the shadows on your bedroom ceiling at different hours of the night, like an insomniac’s sun dial. It’s confusing and mysterious. While I did not cast this upon myself it is something only I can fix.

You can’t make long-term strides as a broken person–healing is necessary. I know I won’t ever be free from depressive episodes or dissociative symptoms but they won’t be so elusive and frightening. I can learn to release my anger slowly in a way that serves me, not hold it in and let it bubble up even further. As far as the stigma goes, I don’t need to be quiet about this. I shouldn’t be. Staying silent never helped anyone find a way out from the hell that consumes them. It certainly didn’t help me.

Chronic illness has taught me to do all the uncomfortable, vulnerable things.

The second you start talking about it is the second you move forward with your life. Release yourself. If you need to talk, get something off your chest, contact me. I kept my own deep dark secrets for decades–I’m a vault. ♥

#RealTalk
[Para]Sympathy ©
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September 2020: Health Updates

There’s something about the crisp September air that brings me back to nursing school, to being 21 again in the hospital. Autumn lit up the nurses station with hope rather than disdain. Even after all the trauma that took place in that building, I can still see the light.

My hospital of choice is also the hospital where I spent 80% of my nursing clinicals. It was weird at first, shifting from practitioner to patient, giving the hospital a whole new vibe. I once complimented the view while having small talk with my own patients. We’d observe the pond near West Wing & take walks around the atrium on the fourth floor. I’ve also gazed longingly out those same windows to mentally escape the prison that is a hospital bed. Whether it was rain, snow, sunshine post-operatively or post-anaphylaxis, that view shifted from one of beauty to a black hole.

But not this month, or the next few. For now, the changing colors remind me of my royal blue scrubs and my OB rotation where brand new babies reigned supreme–the sweet smell of a fresh start.

Creating Common Ground
If you follow me on social media, you’ve already been assaulted by my steady flow of posts about Creating Common Ground. If not, you can listen to my episode here!

My friend, Jessica, formatted the Creating Common Ground podcast to expand our perspectives of one another. Jess is what I call my “soul goal.” She’s so pure of heart & accepting of all walks of life, I aspire to have her insight. We were hospital roomies after my first feeding tube surgery and we’ve been in one another’s lives ever since. Our room placement wasn’t an accident. She was sent to me for a greater purpose.

When Jessica asked me to tell my story for her new podcast, I knew I had to tell the truth, the whole truth and nothing but the truth. She didn’t know about my experience with sexual abuse but let me run with it. She let me pour it all out there to help men and women who have survived such deep-rooted trauma. Writing about it generates different feelings than speaking it out loud. Somehow, allowing my story to meet the open air makes it more real, more tangible. This podcast episode lifted a weight I didn’t know still existed. I thought I had healed, but having Jess embrace my vulnerability makes me feel even deeper sense of acceptance.

If you are reading this, thank you, babe. ♥

I’ve received dozens of messages from sexual assault survivors with their own stories. I’ve connected on a deeper level with fellow truth tellers, and I plan on reaching out to them all. The love keeps spreading as we weave our way through one another’s stories of survival. I’m always open to hearing more stories! Human connection is essential, now more than ever.

Click here to view all Creating Common Ground podcast episodes (also available on Apple Podcasts, Spotify & Google).

CCG BTS Facts:
– Ten minutes before I Zoomed with Jess to record this podcast, the broken closet door fell on my head. I had a bump for two weeks and a migraine during the entire episode! Michael needs to fix that thing.
– I tried so hard not to cuss, and succeeded. However, I said something scared the “daylights” out of me. I do not speak like that in real life; I meant to say “fuck.” Gotta clean it up for the kiddos.
– I have a total of three personal friends with their own podcast episodes: Jess, Ashley and Jessica. Ashley is my partner in Monarch Women’s Group and Jessica is my close friend from high school.

Detached
Today I looked at my Facebook timeline. I never do. I actually hate Facebook and avoid it like corona. It’s a vortex of advertisement and manipulation that I fall victim to amidst my brain fog. But that’s a rant for another day…

I looked at it to get a glimpse of what I can’t see in myself. I have a hard time seeing myself objectively. Since I can remember I’ve had feelings of being unreal, detached from my body. I’m an overachiever but can’t fully grasp my accomplishments. I dissociate constantly. My once photographic memory has dissolved into forgetfulness.  I tell my mom all the time I don’t feel like I’m doing enough. I’m not helping enough people and taking up too many resources. It’s that deep rooted feeling that I’m bad. I waste too many medical supplies, or spend  too much money on treatments. Anxiety is a bitch.

I was shocked at my own reaction to my life’s events. I lived this stuff but somehow didn’t absorb it. I forgot that feeling I had the day of Michael’s goddaughters birthday party. Her little sister hit me square in the face with a water gun.

My first thought: my PICC line is soaked.
My second thought: OH, it’s out. I’m good, I’m fine.
My third thought: I’m going to tickle her to DEATH.

I had so much fun twirling the girls around, pushing them on the swing. I didn’t tire out once. There are posts from my friends thanking me for helping them out in some way, or simply saying “I love you.” I’ve been tagged in stories that inspire and empower women to rise above their limitations. I’ve received mass praise for being raw about my truth on the latest podcast episode. These things are a collection of who I am, at least a tiny part.

So, why can’t I remember them?

There is a reason why I don’t feel real, why I dissociate during every medical procedure and can’t seem to recall the best moments that make up my first thirty years on this planet.

Trauma. Personal and medical trauma.

DPDR Disorder
I started seeing a new counselor last week. I love my old counselor and will probably resume with her sometime post-COVID. She’s my go-to for couples counseling and just sorting through my many, many thoughts. I had a different intention with this therapist, to pinpoint my dissociative symptoms. Her name popped up on my Google search, she is currently seeing patients in the facility and, hey, it can’t hurt.

The first session I gave her my entire background with details. It took much longer than our allotted sixty-minutes but she didn’t stop me. This week she diagnosed me with depersonalization-derealization disorder and complex-PTSD based on her assessment.

Complex-PTSD is the prolonged & repeated experience of Post-Traumatic Stress Disorder symptoms. It’s typically the result of long-term trauma over many years, especially during childhood.

Depersonalization is the feeling of being detached from oneself. This could be detachment from one’s body, mind, feelings or physical sensations.

Derealization is the feeling of detachment from one’s surroundings (people, places, objects, anything and everything), the idea that these things don’t seem real.

“Depersonalization/derealization disorder is a type of dissociative disorder that consists of persistent or recurrent feelings of being detached (dissociated) from one’s body or mental processes, usually with a feeling of being an outside observer of one’s life (depersonalization), or of being detached from one’s surroundings (derealization). The disorder is often triggered by severe stress. Diagnosis is based on symptoms after other possible causes are ruled out. Treatment consists of psychotherapy plus drug therapy for any comorbid depression and/or anxiety.”

I’ve experienced these feelings for years but couldn’t put them into words. Sometimes I’ll be brushing my teeth and feel like someone else has control of my hands. It’s terrifying and I’m fully aware of it. I wrote an entire post about dissociation (still in progress!) but didn’t think it was that severe, a disorder. My new psychologist explained the entire process of how the brain receives and processes information to elicit a physical response from the body. When the young brain is not developed enough to process the trauma, it goes haywire.

I won’t bore you with the limbic system & all the bullshit that goes down in the amygdala. If you seek more knowledge, The Outside the Box Project explains it better than I ever could.

It’s a lot to think about. I always suspected that my MCAS and POTS diagnoses were partially negotiable. Drugs, manufactured & holistic, never worked in regulating my autonomic nervous system. If  MCAS is treated with Xanax, there has to be a nervous system connection. I know trauma didn’t cause a COL1A1 (genetic) mutation but maybe it made me more susceptible to developing MCAS & POTS. I plan to bounce these ideas off my immunologist next month.

The Great Wean
It’s finally happening after nearly a decade of obliterating my veins with IV hydration. I’m weaning off my outpatient fluids.

I started outpatient IV infusions in June with a once weekly bag of saline. After the blood clot dissolved, I dove right back into hydration therapy. I go to a chemotherapy clinic in the hospital, so I’m the healthiest one in there. I can’t deny that it’s motivation to keep going, trying harder than ever to be free from needle pokes. Well, at least for a while.

Summer was brutal for me. I craved a daily infusions, weekly wasn’t cutting it. As the days pass I’m feeling more comfortable with minimal dehydration. My goal is to hibernate my venous system for as long as I can hold out, likely until May. It’ll be a nice break. ♥

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Baby Fever

I hit a colossal milestone last month. At the time it felt like a crisis but it was truly a step in the right direction.

After seven years of malnutrition & amenorrhea, my menstrual cycle returned!

This is the biggest non-scale victory I’ve experienced with digestive disease. I have had mini-periods maybe twice throughout my chronic illness journey, though they never stuck. I was too skinny & malnourished to ovulate. I’m now able to maintain a weight above 110 lbs and it feels like heaven. My butt fills out my shorts, I was forced to buy all new bras (poor me, right?!) and my skin plumped up again. I’m starting to resemble my old self, circa 2012. Definitely more wrinkles, though.

The Scare
Unfortunately your cycle never really gives you a solid heads-up. Period symptoms mimic that of early pregnancy: weight gain, sore & enlarged breasts, extreme fatigue, nausea paired with increased appetite–this one was weird for me. The day my period returned was even weirder.

There are two things I learned about my chronic illness and menstruation:

1. Anticoagulants make it difficult to contain the blood loss.
2. When you begin again after years of amenorrhea, your body sheds extra uterine lining to “make up” for it. The result is a lot of clotting.

The Panic
It’s not as easy to get pregnant with irregular periods, but not impossible. If my girl Jessica can give birth after multiple excision surgeries for endometriosis, it certainly could happen to me. I haven’t been on birth control because the blood clot from April puts me at risk for another. I use protection & “family planning” as backup. The Glow app is a lifesaver, but we all know that’s not failproof.

When I got up from bed one morning to go to the bathroom, I didn’t realize I’d be glued to the toilet for the entire day. I lost so much blood I nearly passed out & fell forward, and I’m anemic to begin with. It was a scary jump from no period to this. When I saw the large clots only one word popped into my mind: miscarriage.

I didn’t want to jump the gun & cry wolf before doing research & making phone calls. I texted my lady friends who have lived through the tragedy of miscarriage but I didn’t inform Michael. He was concerned when I didn’t answer the door for him while stuck in the bathroom. I started crying, told him the truth and asked him to buy me a few pregnancy tests.

I cried even harder when they were negative.

The Guilt
I carry guilt from my emotional reaction to this scare. Hell, I don’t even like calling it a “scare.”

Obviously a miscarriage scare would spark negative emotions, but that’s not why I was primarily upset. Instead of being elated that I could get pregnant with my husband of nearly six years, I was terrified. A vulvodynia specialist at the University of Michigan told me a pregnancy could kill me and I’d be high-risk from conception forward. Even with recent improvements, my health condition complicates pregnancy and childbirth:

• A growing belly could cause my uterus to stretch, tear & cause hemorrhage long before birth. The scar on my abdomen has been reopened three times. It dehisced on it’s own without a growing baby.
• I would have to discontinue most of my medications, including:
  • half of my antihistamines/MCAS drugs, increasing the risk for anaphylaxis
  • Emgality for cluster and migraine headaches
  • medical marijuana
  • Ketamine, Intuniv & Xanax, all those that keep my anxiety & depression in check
• I would need supplemental nutrition + fluids to make up for the calories.
• My hips could dislocate or fracture during vaginal birth.
• Major surgery with a cesarean is difficult to bounce back from–EDS problems.
• The potential for more blood clots. Enough said.

Even with all that hanging over my head, I’m angry with myself. I let the challenges of my situation overshadow the potential for joy. I feel like a bad person, like I hate my illness more than I love my husband, which is absolutely false. No matter what you think you know about yourself, there’s no way to gauge how you’ll react until it happens.

Chronic illness affects my thought process more than I realized.

The Gynecologist
Women who don’t support other women are the ultimate Regina Georges of the world. The only difference is Regina was a girl. When grown-ass women behave this way, it’s more than disappointing.

When it comes from a physician, it’s criminal.

I wanted to see my regular gynecologist but she hasn’t been available to me for several years. I have been passed around from doctor-to-doctor. This woman was new to me though she clearly read my chart in depth–shocking, in a good way. Her response to my condition was also shocking, not in a good way.

• When I told her my period returned, her immediate reply was “that’s great! So are we ready to plan a pregnancy? You don’t have much time if you want more than one.”
• When I explained why a pregnancy would be dangerous for me, she said “oh, we can make it work” and dismissed my comments as “unnecessary worry.”
• When I explained how I’m managing vulvodynia and vaginismus, her response was “wow, you must have a very patient husband to put up with all that.”

This woman prioritized motherhood over my health and my life.
This woman reassured me that my conditions are a burden to my husband.
This woman disregarded my concerns about pregnancy & motherhood in relation to my illnesses.
This woman reminded me that my purpose in life is to have a baby, to dedicate my life to that baby before even fully restoring my own health.

I receive enough societal stigma without a co-pay, but thanks doc.

YOU ARE ENOUGH
I have struggled with the ability to have a child for years and I’m finally content with my situation. Had that doctor come across someone impressionable, she could’ve done major damage. You don’t have to prove your life is worth living to doctors. You don’t have to have a husband or baby at all.

Regardless of my ability to choose I do have baby fever, in an unconventional way. As much as I’d love to have a little Michael giving me hell for the rest of my life, it’s not safe. We may not get the surprise of morning sickness or take weekly bump photos and that’s cool with me. I’ve grieved it. Adoption could be on our radar after I regain more strength. Or not–there is no ticking clock. There is no desire to rush into parenthood. There will be conversations & counseling sessions in our future, but not today.

And if it doesn’t work out, we have plenty of babies in our family & solid friendships to fill up our hearts.

If my health holds up I plan to spend a few years traveling (post-COVID, of course), expanding Monarch Women’s Group, & partying as much as my body will allow! I have spent so many years trying not to die, it’s time to live…for me. ♥

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