Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

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Happy Winter Solstice!

Happy Kwanzaa!

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Happy Winter Solstice!

Happy Kwanzaa!

Thank you!

My Chronic Illnesses Impact My Vision, Cause Brain Fog and Other Symptoms.

I Struggle with Reading Small Font and Paragraphs That Are Not Spaced Out.

Often I’m Not Able to Respond/Fully Respond Because I’m Not Able to Read the Full Reply.

I Sent Text Messages and E-mails Etc Using Bullet Points or Numbering and I Put Spaces Between Each Bullet Point or Number.

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@Cocosurviving - ((((safe hugs)))) I'm so sorry you are struggling with so many things. I hope you feel better.

Thank you . I have a telehealth appointment tomorrow, Wednesday, with the other immunologist in the practice.

I’ve been resting, drinking plenty of water and herbal teas and binge watching Netflix.

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Setting boundaries is important to me:
•I’m a nonbeliever.
•I don’t celebrate colonial holidays.
•I watch my energy levels.
•I experienced trauma growing up.
•I have food allergies.
•My cultural beliefs and traditions are not the same as some of my family members.

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•I Create Tasks List and Include Deadlines.

•I Request Any Reasonable Health Accommodations.

•I Take a Break When I’m Overwhelmed.

•Taking a Break For Me Includes: Watching Funny Movies, Listening to Music, I Avoid Any Serious Topics Including Politics, I Take a Walk, Use Aromatherapy, Polish My Nails, Color, Knit etc.

•After Re-Grouping/Hitting Reset•

•I Remove Any Tasks That Can Be Canceled.

•My Tasks List is Weekly vs Daily with the Exception of Deadlines.

•My Planner System Helps.

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My day was pretty decent. I completed several tasks before my Telehealth appointment.

My immunologist is out of the country. My appointment was with the second immunologist in the practice.

I told her all my symptoms and she had the audacity to start quoting “research and statical” data.

I told her point blanket that quoting “research and science” was not the way to reach me. I don’t like when providers do it, it’s dismiss and ableist.

Basically they are saying you shouldn’t be experiencing “XYZ” because “research and science” said no one else is.

Urgent care and emergency rooms are so overwhelmed with patients. I do not believe they take time to ask detailed questions, log it and send the information to researchers.

Oct 2020- My mama received a flu shot and became extremely sick. Well it turns out she had Covid-19 and it was assumed she was experiencing symptoms from the flu vaccine.

She was never tested for COVID-19 before receiving a flu shot. The flu shot brought the Covid-19 symptoms to a head.

March 2021- My mama received her COVID-19 vaccine. She experienced hives and swelling on and off again for about four months. She initially went to urgent care and was never asked if she received a Covid-19 vaccine. My mama’s primary care provider sent her to an immunologist, who placed her on several antihistamines.

The topic of “research and science” has been a trigger for me for a long time. Research and science have a long hidden history of experimenting on BIPOC and other marginalized people without consent.

John Hopkins Hospital has been responsible for several. I’m watching a series on Netflix called Black Earth Rising. It’s about genocide in Rwanda and John Hopkins played a part in it.
John Hopkins also played a role in an experiment in Guatemala.

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More and more BIPOC researchers are trying to reveal how research and science can be beneficial for the BIPOC community when white supremacy, bigotry, bias and hate have been ameliorated from mainstream practices, and when there are more safeguards put in place for ethical research practices.

That said, it's only with research and science that medications, treatments, therapies, and vaccines/preventative efforts can be helpful for all persons, including the autoimmune, the disabled, the BIPOC community, the aging, and more.

Research and science are not ableist in the sense that they do sometimes do research on special populations, including the BIPOC community, ones with severe allergies, ones with autoimmune disorders, the obese, the aging, etc. But I can see how bias that enters into research can be ableist, such as when they look at white male participants to denote what constitutes heart attack symptoms, as opposed to seeing the differences between men and women, males and females, those who are transgender, those who are part of the BIPOC community, etc.

Yes, there have been historical traumas and continuous traumas related to hate, bigotry, racism, xenophobia, nationalism, and more in terms of experiments involving research and science. Your fears and concerns are valid. However, there are many safeguards in place to detect when vaccines are not working, such as preventing death by screening 15 to 30 minutes after vaccines are administered, having VAERS and other establishments in place to record those findings, etc. They still lack the basic questions about people's preexisting conditions for VAERS, as well as their SES, gender, race, ethnicity, nationality, etc., because those factor into healthcare since migrants from other countries also have their share of issues when treatments and prevention in other countries vastly differ from the USA. But these aren't reasons to think in all-or-nothing terms when considering healthcare, prevention, and vaccines. There are many safe vaccines for the immunocompromised, the disabled, and the BIPOC community. The rarer your illnesses are, the more care you need. It's par for the course for disabled persons, and particularly for those who have experienced historical and current medical traumas, such as the Black communities within the USA. For those who are Black and from another country, however, they have another layer of concerns to ensure continuity of care in the USA. There is more needed for these communities, but it takes research and science to provide adequate healthcare.

If your religion, however, is based on historical traumas and thus does not wish to engage in any medical treatment at all, including those that involve vaccines, that's a different story. There are a few religions that don't seek any medical care, but that's the caveat - they will not clog up hospitals as part of the unvaccinated because they don't seek medical treatment or vaccines. That's the main exception widely approved. Unfortunately, only few places allow for philosophical and/or historical traumas to be part of that excusable vaccine mandate. And, there are also those with true medical concerns, such as those who have allergic reactions that cause shortness of breath or death. Intolerance, however, involves rashes and other abnormal but allowable reactions to medications and vaccines, which don't involve death or respiratory dysfunction. That's the main difference between "intolerance" and "allergy" in medical and scientific terms. But perhaps that might be expanded upon in the future to include rashes as being considered an "allergy."

I have an intolerance to peanuts, meaning that I break out. But I can still eat them in small amounts because I'm not allergic; I don't stop breathing or have severe inflammation to the point where I could die - that's what "allergy" is defined as, for the most part. I don't know if most people realize that when they say that they are "allergic" to gluten; many are intolerant, like those with lactose intolerance, but not allergic.

When it comes to vaccines, I think medical doctors are trying to explain in their science- and evidence-based (research-based) language how vaccines are appropriate for the "intolerant," even if they are not okay for the "allergic." Additionally, they are also explaining how there are more safeguards today that help prevent bias in terms of diagnoses, treatments, and vaccines/prevention. That said, there are many doctors who, if you're ill with Covid-19, will assert their bias in emergency rooms and ICUs, whereby they don't treat the BIPOC community as well as they would treat the white unvaccinated ICU patients. In that case, it would be more protective for the BIPOC community to prevent severe disease from COVID-19 by getting the vaccine than not. It's not like they have separate vaccines for BIPOC and white people, though anyone could potentially tamper with the vaccines if security is not in place to safeguard vaccine storage and administration and their administrators putting needles in arms and schedulers as well, and from the shipment and warehouse to the delivery drivers and those receiving the vaccinations and then storing them. I can see how that would be a concern, but it is still safer than playing roulette with your life and taking the chance of being medically discriminated against in the ICU or ER - which is far more likely than the vaccines.

So, if your doctor says that you can take the vaccine, that would be the best route to take, especially if you get a second and third opinion stating the same. You might just be intolerant, as opposed to allergic.

If there are alternative vaccines you'd rather take, you could risk traveling to another country to take one of their AstraZeneca vaccines, but such countries probably require non-citizens to be fully vaccinated with the initial jab(s) plus a booster in order to enter their country anyway. Sadly, the free traveling for alternative medicines is not as available as pre-pandemic days anymore (unless you have lots of money and a private jet).

It's not supposed to be how others can convince you or persuade you into getting the vaccine; the responsibility isn't on them; it's truly on you as to whether to get the vaccine or not. If you choose not to for historical trauma fears, for philosophical reasons, for political reasons, and/or for religious reasons, you are responsible for making that decision.

I get the arguments you present, but I've seen too many people die a preventable death because of their choices. The locus of responsibility and locus of control is entirely in your hands.

Although I have a bachelors degree, I will never believe colonial academia, historians, science, research, medical field and science.

It’s a struggle for BIPOC. We want an education to succeed however I feel many become more indicated (colonized).

Colonial academia indoctrinates society to believe medical experiments and segregation happened a long time ago. That Jim Crow laws and oppression ended. False. All forms of discrimination evolves.

My parents attended segregated schools. It was not a long time ago.

I’m aware many people in society believe in safeguards in science. I do not believe in a system that the government controls and the government allegedly monitors. There is no disinterested party monitoring.

Research, science and the medical field are ableist in the sense that many individuals in these occupations believe in eugenics.

I’m Black and Native Indigenous. I’ve worked very hard at decolonizing. There are beliefs, knowledge, lack of trust, trauma, generation trauma, oppression, genocide, massacres, r*pe culture, culture vultures that no non-Native can ever understand.

I absolutely will never trust any government institution. My community had MMIWGT2S and government institutions do absolutely nothing.

Many of my people who live on reservations in rural areas have no access to clean water or electricity.

I feel it’s easy for people to trust the government and government institutions and label/view people like me as radical….

It’s easier if these people have never had family members forcibly removed by the government for the purpose of “removing the Indian from the children.” Cultural genocide.

We have Native Indigenous children being unearthed in the United States and Canada. Current trauma.

It’s easy for for people who have no knowledge, very little knowledge and no living relatives that survived these concentration camps. Concentration camps that the United States and Canada call Indian Boarding Schools and Residential Schools.

These were not schools at all. Schools do not have children buried on the grounds. This is far from “a dark day in history”. These crimes against humanity are still happening to Native Indigenous People.

I’m not religious and I’m a non-believer. My beliefs are sacred, dominate culture would call my beliefs pagan or heathen.

I do not ever have to be concerned with vaccine mandates or what I’ll put on the vaccine waiver form.

I have the form, I had it signed for a family member before the Covid-19 vaccine was created.

People that follow organized religions are not the only ones allowed to use the waiver form. Yes. I listed historical and continued trauma (multiple medical experiments without consent and forced sterilizations + our beliefs. The primary care provider signed the waiver form.

I’m not a for (pro-vaccine) or against vaccines (anti-vaxxer).

I believe in minding my own business, social distancing and wearing my mask vs fear mongering. I also don’t allow visitors and I visit certain immediate family members.

I notice a few commonalities between…

People that follow organized religions.

People that believe in political sides…democratic vs repub.

People that graduate college, graduate other forms of training.

All these institutions indoctrinate people to believe in the system, to believe in history books, to believe it’s ok to push what they have been taught (unsolicited opinions) on others, to believe there is only one way and to believe certain occupations should never be questioned or monitored by a disinterested party.



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When I’m overwhelmed and have a lot on my mind, I make a list and pause.

Yes. I take a pause.

•I watch a Marvel movie or something with supernatural elements instead of anything serious.

•I polish my nails.

•Eat a lot of veggies, fresh fruits and drink lots of water.

•I rest, get plenty of sleep.

•I do this self care for about 3 days.

I learned that being overwhelmed triggers my depression….hashimoto and so on.

Also taking a step back and focusing on self care will help make sure I H.A.L.T. first.

Afterwards, I wake up feeling refreshed and ready to be productive.

Thursday morning I felt like this and spent two hours typing up e-mails.

Then I washed my laundry and went to the library.

I practiced my Native Indigenous language and discussed plans for Kwanzaa.

I’ve been dealing with anxiety. I pause and the burning in my chest stops.

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I had a long talk with my adult daughter about this yesterday (Thursday).

I’m upset because as a immunologist, Dr. M. has book knowledge of my two rare diseases…

She’s aware anaphylaxis is a symptom of both my rare diseases..

It’s important to give people grace and not attempt to give unsolicited advice/judgement on illnesses you do not personally have.

It’s difficult being stressed out and trying to convey online what happened step by step. Convey what happened online just to get it off your chest and process what happened.

Me and both immunologists in the practice have been working for months…since April to get my immune system ready/prepared to handle the COVID-19 vaccines.

I’ve been taking treatments since April. The thought was that the treatments would block/alleviate triggering my rare diseases.
Once my rare diseases are triggered, therein lies a problem. A problem that can lead to anaphylaxis if not quickly controlled.

It was hard telling Dr. M., all the symptoms I experienced. Certain symptoms from my rare diseases can be very difficult to talk about or say out loud.

The problem is Dr. M. did not have another solution. My treatments were increased in October and still didn’t work to block the symptoms.

Last month she mentioned a medication, compound, which is not covered by insurance and outside of the budget.

The biggest obstacle is my rare diseases are not under control or being controlled by treatments or medications.

Controlled as in reduction in severity of flare ups from triggers.

I explained to my adult daughter why I prefer peer lead vs therapy.

I feel and view therapist as hierarchy vs peer lead is centered on being equals.

Dr. M. has a medical license however her knowledge is purely from books vs someone that lives with rare diseases.

I have lived with one of my rare diseases since birth, I’m 45. I’m an expert on my body.

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I'm so sorry your tribe has experienced historical, generational, racial, and ongoing trauma. I do believe that there is systemic issues that keep these traumas going, including racial traumas, rape traumas, abductions, human trafficking, and discrimination in the medical and psychological fields. I do agree with much of what you've said. It's just when tribes start experiencing preventable disease, that's when people do get worried about extinction, too.

People need not be from the same tribe, religion (such as Lakota), or race in order to care. We may not know everything there is to know about your culture and its struggles, but there are a few of us non-native minorities who do understand rape culture, unethical experimentation, racism, medical discrimination, historical traumas, generational traumas, and more. We may differ in our histories and experiences and specific forms of racial traumas, but we do know what suffering, trauma, and distrust in the government are like.

But all-or-nothing thinking will keep you unwilling to trust anyone. That can lead to preventable disease and otherwise.

But if your religion truly is against the vaccine, then it sounds like you're doing all that you can with mask-wearing and social distancing. I get that, and I get that there are different terms that Native Americans and Indigenous people in the USA have for getting waivers for vaccines. As long as masks are being worn properly (typically, two masks - one that is at least a KN95 with either a surgical or cloth mask over it - will do best to protect the wearer from getting or spreading the virus, and tightly over both the nose and the mouth). It's really when people go unmasked or wear masks improperly that I can see the spread of the virus happening when it could have been prevented.

With all-or-nothing-thinking, however, people may just think that "everyone is going to get it anyway" (not true), or "my faith dictates that it's God's will" (which is a form of spiritual abuse inflicted unwillingly on others, who are also being indoctrinated by others' beliefs), or "I outright don't care if you get the virus or not" (whether people want to admit this attitude or not, which sometimes stems from pandemic fatigue, but other times stem from hate, bias, revenge, etc.). These are all my concerns about how this pandemic is continuing to divide people by race, religion, SES, nationality, and more.

Trauma survivors distrust many people and many things, too. They may or may not have racial traumas, but many have gender-based traumas (distrust in men, for example, after having been widely raped by them), workplace traumas (after having experienced harassment, bullying, and/or discrimination), medical traumas (after having experiencing the ER and/or ICU for an injury or illness), historical traumas (with ongoing discrimination against Black persons, Asian persons - since their concentration camps and the Yellow Peril, Indigenous persons, Native Americans - just read some articles in Idaho and you'll hear about the recent Sheriff's racist statements after getting charged with a felony, LatinX/Hispanic persons, multiracial persons, and persons that meet one or more of these categories plus have disability, obesity, gender, sexual orientation, and/or age discrimination to deal with). We have also been hurt by the government and through experimentation, including those who used to reside in Puerto Rico. But many people learn how to balance their distrust, which stems from trauma, and seek medical care when needed, including preventative vaccinations.

It's not about comparing your disabilities with mine, your racial traumas with my racial traumas, etc. In therapy, which you state is "colonized," they do offer healing treatments that include this notion that trauma survivors should NOT compare their traumas to others - either to say that their trauma is not as bad as others or to say that their trauma is worse than others. Trauma is trauma, and such warrants healing. We can't force everyone in the world to understand our traumas, as that would actually spread vicarious/secondary trauma - especially to those who truly would get too triggered to hear it and are not trained in treating trauma. There are specific trauma support groups, including those for racial traumas, generational traumas, and historical traumas. They discuss how to live a balanced life in the midst of structural violence. Many migrants from other countries who come here as asylum seekers and refugees will attest to the traumas they endured in warzones they lived in, some of which are due to differing belief systems, others being due to the color of their skin. They may rightfully distrust systems and governments, but they do what they can to also survive and live harmoniously with others.

Distrusting everyone all the time is not a healthy approach for any survivor. At some point, you have to trust someone in order to survive in a world that is based on social sharing, etc. Otherwise, our mental health worsens, which then affects our physical health worsening. Any persons who would want to side with you and your pain would easily be put off if even they are not welcomed or are distrusted. Then where's the restorative justice when there lacks trust.

Also, people can change, and people can see through the biases and structural violence in order to help and partner with. But when people are unfairly stigmatized and judged, it doesn't help promote relationships, solicit help, or otherwise; it only pushes people away.

If you don't even trust in our scientists and educational system, then that's quite a lonely world to live in. Many white supremacists and white nationalists also believe in the same ways you just described, which draws certain parallels that explain the victim-offender relationship in certain criminal justice/victimology theories - which are based on social sciences that aren't "indoctrinated" as you say, but have done much to observe and weed out certain biases (you can't weed out all biases, unfortunately). Without science, there is no electricity or running water, too. It takes science and higher education in order to achieve your own clean water and electricity, or to learn the art of business and fundraising or taxation in order to get the funds or sweat equity for building electrical and clean water infrastructures on indigenous and Native American lands. In a similar vein, the white supremacists in this country have also used the term "indoctrinated" to describe our educational system, in particular, the social sciences. There are many parallels between victims and their offenders because, sadly, victims learn from their offenders.

The reality lies somewhere in a balanced field, not at the extremes. Taking an anti-government stance and an anti-educational stance and an anti-scientific stance is being political. It may be a different kind of politics than mainstream politics, but it is considered extremist progressive - or a different term meaning similar things. Extremism only harms the extremist group and others; it itself is "indoctrinated" with extremist beliefs that are tantamount to all-or-nothing thinking, which is unhealthy. Trauma treatment understands that this all-or-nothing thinking is a cognitive distortion, even though the feelings behind such traumas that happened to you are valid. But the reality is, there are many loving, caring, and helpful people out there who are scientists, doctors, nurses, therapists, educators, professors, and more. We can't just distrust them all because of the color of their light skin, the social status they uphold, the educational background they have, or their leadership role. That is tantamount to unresolved traumas that have worsened our psychosocial health and our cognitive health, whether you believe in that or not.

I'm sorry you are struggling so much, and I do understand all of your concerns. As a minority myself, I've experienced historical traumas, racial traumas, and generational traumas, too (different, but not to compare). But I also need to heal and live in a society in order to survive.

Here's some resources for racial trauma, if part of your historical and medical traumas include racial traumas:

American Psychological Association

Mental Health America

University of Georgia

A Psychology Today article on PTSD and Racial Trauma

JAMA Article on Vaccine Hesitancy

JAMA article on Racial/Ethnic Differences in Covid-19 Vaccine Hesitancy

Another article about Vaccine Distrust among Minorities

Trauma Psychology News - Vaccine Hesitancy in Black and Indigenous Communities

NPR article on how Black doctors deal with vaccine hesitancy

Harvard University - Vaccine Hesitancy

Rare Disease Advisor article - Vaccine Hesitancy in MS patients

Scientific article on children with rare diseases and vaccination coverage

Article about Native Americans and Vaccine Hesitancy

More articles on Native Americans and the Covid-19 Vaccines:

BMJ

New England Journal of Medicine

Teen Vogue

Emporia Gazette

PBS

I read about a time management trick. I’m going to do it…

People often say they don’t have time to do “blah blah.”

Write down everything you do for a few days or a week. Log how long you do each thing.

•Work, Exercise, Cooking, Run errands, On social media, Hanging with family or friends
•Reading/studying.
Etc.

This shows how your time is used.

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“How To Organize Your Life When You Feel Overwhelmed.”

•My Favorite Planners are Undated , Weekly or Hourly Layouts.

•I’m More of a Minimalist vs Being into Aesthetics.

•Planner Systems and Bullet Journals Help me Stay Organized.

•I Attend a lot of Medical Appointments, a Planner Helps Me Not Overbook and Remember All My Appointments.

•I List My Preventive Care and I List Bills Semi Annually and Annually.

•I List My Car Maintenance.

•I List My Dog’s Veterinary Care, Flea, Trick and Heart Worm Treatments.

•My Teenager has Activities and School Functions.



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Topic: Peer Ran Mastermind (Accountability) Groups.

Podcast: Online Marketing Made Easy with Amy Porterfield. Episode #414
“How To DIY Your Own Mastermind

I Came Across A Podcast Episode that Really Resonated with Me.

My Takeaways
It’s Counterproductive Seeking Opinions and Feedback from Individuals or Groups that Do Not Work in the Same line of Work, have the Exact Same Illnesses You Have or other Struggles.

•It Does Make a Difference Obtaining Feedback from Individuals Who Can Relate and Have Lived Experiences vs Just Giving Their Opinions.

•One or Two People Should be the Main Group Contacts.

•Set Group Rules.

•Discuss the Highs and Lows Since Last Meeting.

•Meet Virtually.

•Decide How Often Meeting Will Be.

•Smaller Groups are Best.

•Don’t Make the Group too Big, 4-6 People in a Group is Good, too Many People Makes the Group is Counterproductive and Hard to Manage.

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While watching a vlogger (entrepreneur) discuss planning and starting new projects.

She discussed her process for scheduling tours, marketing etc.

What I liked is her and other writers automatically plan for 7-9 sick days per quarter.

Everyone gets sick and employers need to acknowledge we are all human.

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