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Old 02-15-2021, 03:30 AM   #1
Cocosurviving
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Itís very challenging having rare diseases and autoimmune diseases that primarily revolve around regularly taking steroid medications. Regularly taking steroid medications directly cause weight gain for many individuals.

Iím not going to give up...I will continue to be active on non-symptomatic days. Right now is very challenging with back to back ice and snow storms. I used to workout at my residence..home workouts. I really enjoy being outside.

Iíve been doing pretty good with my depression. I stopped taking all psychotropic medications in 2018 and it was the best choice for me. After being misdiagnosed when my original diagnoses was always depression. Iíll never go to another mental provider again.

I found several things that work for me as coping skills.....music, coloring, reading, blogging, traditional Indigenous music, praying to my ancestors, chatting with folx, soaking, knitting 🧶 etc.

I recently lost my auntie, heart disease and it hurts so much. I lost a cousin to breast cancer four months earlier. Iíve recently looked into bullet journaling. I see it as a creative outlet for me to deal with grief, loss and process my thoughts.
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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:10 PM..
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Old 02-15-2021, 10:14 AM   #2
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Hi Cocosurviving. I am sorry for the losses of people in your life and activities. I like your idea of a bulleted journal. Sometimes journals get lost in details and are unreadable down the road.

I appreciate coping skills. Exercises like 5 minute Tai Chi on youtube have helped me stay in touch with energy and the body. For me, Zoom and youtube have helped a lot during Covid times. But walking outside is really good.

Friends in the Dakotas on the Great Plains saw temps go to 23 F below 0 or lower. It is just so cold.

Sounds like you have some great coping skills. I keep telling myself "Spring is right around the corner." Eventually I will be right.

All the best to you
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Old 02-22-2021, 10:47 PM   #3
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I'm glad you're finding ways of coping, dear one,
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Old 03-09-2021, 05:43 PM   #4
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It seems that each time I have a sinus infection or respiratory infection it triggers both of my rare diseases. Re: Welcome to our Grief and Loss support forumRe: Welcome to our Grief and Loss support forumRe: Welcome to our Grief and Loss support forum

Thursday, March 11th 2021- I have my consultation with my new immunologist. I have my fingers crossed Re: Welcome to our Grief and Loss support forum that he will be a provider that listens.

Chronic Idiopathic Urticaria- Iíve tried several antihistamines over the years and the only one that works for CIU is hydroxyzine...unfortunately itís a sedative.

Xolair is not a good match for me...itís too risky in regards to the side effects and other autoimmune diseases that I have.

Hereditary Angioedema-I have one Firazyr injection remaining. My previous immunologist did not feel comfortable prescribing me a preventative medication. He said, the side effects were too much for my health.

Iím having a day of extreme frustration.

Iím tired of itchy chronic hives, not regular hives that feel like my skin is on fire Re: Welcome to our Grief and Loss support forum covering my whole body and face.

Iím tired of my face, feet and hands looking like I was jumped into a gang.

Iím also tired of fatigue, sore throat and runny nose.

Iím tired of having so many chronic illnesses that finding treatments is difficult.

Iím also so hurt that Iíve lost multiple family members. The grief is so real. I know my ancestors are in my corner and watching over me but the pain of missing my family members hurts deeply.

Iíve been continuing to eat Re: Welcome to our Grief and Loss support forum fresh fruits, vegetables, drinking a lot of water and non-caffeine herbal teas. Hoping this sinus infection will pass which would calm my flare ups. I purchased a new Fibromyalgia cookbook. Iím looking forward to feeling better and being able to cook the recipes.
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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 03-09-2021 at 06:35 PM..
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Old 03-09-2021, 06:44 PM   #5
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@Cocosurviving - sorry you are having such a tough time of it. Hope you get some relief from the symptoms you face.
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Old 03-11-2021, 03:13 AM   #6
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Wednesday I did much better emotionally. It hurts losing family members. I only cried once and not for too long.

September 2020, I lost a cousin to cancer and December 2020 my mother lost her sister to heart disease. My momma had a high school classmate put together a slide show for my auntieís funeral. The classmate passed away from an autoimmune disease two weeks after my auntie.

March 2nd 2021, we lost my grandpaís sister to COVID-19. Since my health took a turn, I stopped running seven years ago.

I now walk and run Re: Welcome to our Grief and Loss support forum in remembrance of all my relations that are gone as a result of autoimmune diseases.

I walk and run Re: Welcome to our Grief and Loss support forum to bring awareness of all BIPOC with autoimmune diseases and rare diseases.

I walk and run in awareness of Missing Murdered and Indigenous People.
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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:11 PM..
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Old 03-11-2021, 09:11 AM   #7
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@Cocosurviving - glad you find causes to dedicate your life to. Whatever you can do can be a tribute and a bringing awareness to those who have suffered.

I found this article helpful for me: Getting Through Grief and Letting Go
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Old 03-14-2021, 03:43 AM   #8
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Saturday was decent. I never say my day is ďgreatĒ and the term ďgoodĒ makes me equally as uncomfortable. Why? Iíve had depression since I was 16 years of age. Depression is like any other chronic illness....chronically flaring up. I donít like labeling my days as ďgreat or goodĒ because of the off chance I jinx myself. Yes, seriously and toxic positivity (which is gaslighting) will not change my view. I had a close friend with bipolar, asking about her day was a trigger.

Although Iím no longer in remission, my autoimmune diseases and rare diseases impact my life more than depression. Iím still cautious about labeling my days. Most of my flare ups happen after midnight. A few months ago, I was having a fun day. I was asked about my day and got caught up in the fun I hadRe: Welcome to our Grief and Loss support forum I said, ďitís great.Ē

I **** you not, that night I had a horrible Chronic Idiopathic Urticaria flare up. I actually donít see the purpose of sales clerks who are complete strangers asking customers about our day. A simple greeting would suffice. I doubt these sales clerks wanna hear about my crappy insurance coverage and **** load of medical bills. I usually respond with, ďIím alive.Ē
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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:13 PM..
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Old 03-14-2021, 01:15 PM   #9
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@Cocosurviving sounds rough to not know when things are going south.

I find it difficult to respond to clerks because they cannot hear me well with the mask on. They ask "How are you?" and my reply is simple: "Okay".
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Old 05-03-2021, 12:24 AM   #10
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Saturday was nice...very busy.

I have days when Iím very social and other times I need space and solitude.

I spoke with family and friends in Tennessee. Visited Re: Welcome to our Grief and Loss support forumRe: Welcome to our Grief and Loss support forummy dad and his wife...plus my momma and stepdadRe: Welcome to our Grief and Loss support forumRe: Welcome to our Grief and Loss support forum.

I didnít make it to a YMCA location...outside was decent tho....I walked 1.2 miles

I tried helping a neighbor...bless her heart a yellow jacket Re: Welcome to our Grief and Loss support forum flew inside her apartment. Re: Welcome to our Grief and Loss support forum She had a can of spray, opened the Re: Welcome to our Grief and Loss support forum front door and it would not leave...we also have vaulted ceilings. I had a neighbor help me before with the same situation. Iíll definitely be making a trip to get spray and another broom Re: Welcome to our Grief and Loss support forum. I broke my broom Re: Welcome to our Grief and Loss support forum killing a spider Re: Welcome to our Grief and Loss support forum Lol Re: Welcome to our Grief and Loss support forum

I came across a few Spoonie Re: Welcome to our Grief and Loss support forumrunning Re: Welcome to our Grief and Loss support forum groups on Facebook which is very helpful.

The month of May has several awareness causes.

Sunday- I wrote my monthly budget out, paid bills, updated my calendar and to-do-list.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:13 PM..
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Old 05-03-2021, 12:43 AM   #11
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Re: Welcome to our Grief and Loss support forum

On This Day, May 3rd 2021

Itís been 7 months and 17 days since my cousin passed away from breast cancer.

Itís been 4 months and 14 days since my auntie passed away from heart disease.

Itís been 2 months and 1 day since my second auntie passed away from COVID-19.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:14 PM..
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Old 05-03-2021, 04:30 PM   #12
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@Cocosurviving sorry for your losses - anniversaries are difficult when we remember the ones we lost.
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Old 10-31-2021, 10:09 AM   #13
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Bad Day Check List

1). Have you been eating healthy?

What have you been feeding yourself lately?

Are you hungry right now?

Could you make yourself some food?

2). Are you hydrated?
Do you need some water or juice?

3). Have you been sleeping enough lately?
Do you need to lay down right now and take a nap?

4). Do you need to shower?
Would a change of clothes help?

5). Are your surroundings neat and tidy?
Could you tidy up your room a bit?

6). Have you been in nature recently?
Have you gotten some sunshine?
Could you take some vitamin D right now?

7). Have you moved your body?
Do you need to go for a walk?
Or go for a run?
Would working out help?

8. Have you spoken to someone who can help you work out your thoughts and feelings?
Is there someone in your life that you can open up to and be vulnerable with?

9). Do you need peace and quiet?
Would meditation help?
Or would listening to music help?

10). Do you need to cry?
By Claudia Kai

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:15 PM..
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Old 11-02-2021, 08:37 PM   #14
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Thank you @Cocosurviving for posting that list. Those are things I try to check on when things are not going well. For me moods are strongly affected by food and not enough sleep so those are tops on my list.

Last edited by CANDC; 12-31-2021 at 11:15 PM..
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Old 11-03-2021, 06:37 AM   #15
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Default Re: Welcome to our Grief and Loss support forum

I can relate to losses:

I lost my health.
I lost my figure.
I lost my beauty.
I lost my youth.
I lost my fitness.
I lost my careers.
I lost motherhood.
I lost a best friend.
I lost a father.
I lost relationships.
I lost commodities.
I lost my freedoms.
I lost my mobility.
I lost my flexibility.
I lost my halfway decent eyesight.
I lost trust.
I lost hope.

Trauma >>> Injustices >>> Retraumatizations >>> Secondary Victimizations >>> Discriminations >>> Ostracizations >>> Rejections >>> Mental Disabilities >>> Physical Disabilities >>> Homelessness >>> Joblessness >>> Debt >>> Ageing >>> Vulnerable to Future Victimizations >>> Retraumatizations >>> Secondary Victimizations >>> ... THE CYCLE CONTINUES ...

Just loss after loss after loss. It's like the invisible powers that be want me to die.

Last edited by CANDC; 12-31-2021 at 11:15 PM..
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Old 12-01-2021, 01:47 PM   #16
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ďWhy Is Everything About Race/Ethnicity?Ē

Because of the Lack of Cultural Inclusion and Tolerance.

I went to a Nutritionist Last Year and Did Not like the Experience.

I was Recently Referred to a Nutritionist Again. I was also Recommended Grief Counseling, Which I Declined.

I Did Not Schedule an Appointment with a Nutritionist Because None of the Nutritionist in My Network are BIPOC. Itís Counterproductive, Triggering and a Waste of Paying a Co-pay.

The Barriers and Reluctance: Our Cultures are Not the Same, Each Culture has Different Frameworks, Approaches, Beliefs and Values.

This Applies to Many Areas
ēGrief/Loss/Coping with Grief/Loss
ēBeauty Standards
ēWeight Management
ēMental Illnesses/Therapy
ēDealing with Stress
ēHealth
The List Goes On.

ēItís Not Valid Giving a Narrative, That Resources and Services are Available but People Will Not Participate. There Are People Not Interested in Assimilation.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata

Last edited by CANDC; 12-31-2021 at 11:16 PM..
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Old 12-01-2021, 02:17 PM   #17
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Heart Re: Welcome to our Grief and Loss support forum

Quote:
Originally Posted by Cocosurviving View Post
ďWhy Is Everything About Race/Ethnicity?Ē

Because of the Lack of Cultural Inclusion and Tolerance.

I went to a Nutritionist Last Year and Did Not like the Experience.

I was Recently Referred to a Nutritionist Again. I was also Recommended Grief Counseling, Which I Declined.

I Did Not Schedule an Appointment with a Nutritionist Because None of the Nutritionist in My Network are BIPOC. Itís Counterproductive, Triggering and a Waste of Paying a Co-pay.

The Barriers and Reluctance: Our Cultures are Not the Same, Each Culture has Different Frameworks, Approaches, Beliefs and Values.

This Applies to Many Areas
ēGrief/Loss/Coping with Grief/Loss
ēBeauty Standards
ēWeight Management
ēMental Illnesses/Therapy
ēDealing with Stress
ēHealth
The List Goes On.

ēItís Not Valid Giving a Narrative, That Resources and Services are Available but People Will Not Participate. There Are People Not Interested in Assimilation.

Sent from my iPhone using Tapatalk
I struggle with the same situation; hardly anyone is BIPOC in Idaho, and it's hard to find people who just "get you" (as opposed to having to learn from you in order to help you). I've met some really friendly non-BIPOC people though, and if they are willing to learn, I'm cool with that. But it is still nonetheless taxing sometimes.

Thank you for sharing!

Last edited by CANDC; 12-31-2021 at 11:16 PM..
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Old 12-19-2021, 09:42 PM   #18
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Quote:
Originally Posted by Cocosurviving View Post
Itís very challenging having rare diseases and autoimmune diseases that primarily revolve around regularly taking steroid medications. Regularly taking steroid medications directly cause weight gain for many individuals.

Iím not going to give up...I will continue to be active on non-symptomatic days. Right now is very challenging with back to back ice and snow storms. I used to workout at my residence..home workouts. I really enjoy being outside.

Iíve been doing pretty good with my depression. I stopped taking all psychotropic medications in 2018 and it was the best choice for me. After being misdiagnosed when my original diagnoses was always depression. Iíll never go to another mental provider again.

I found several things that work for me as coping skills.....music, coloring, reading, blogging, traditional Indigenous music, praying to my ancestors, chatting with folx, soaking, knitting 🧶 etc.

I recently lost my auntie, heart disease and it hurts so much. I lost a cousin to breast cancer four months earlier. Iíve recently looked into bullet journaling. I see it as a creative outlet for me to deal with grief, loss and process my thoughts.
I will keep those coping skills on mind.
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Like love, it's how we know we're alive.

And life goes on.

That my life weird, messy, complicated, sad, wonderful, amazing, and above all epic. Eleanor Gilbert Vampire Diaries

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Old 12-22-2021, 07:46 AM   #19
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This tweet explains grief and loss Re: Welcome to our Grief and Loss support forum

Mon, Dec 20th- One year since my auntie Linda transitioned from this world.

Iím not close to my parents however me and my auntie were solid.

So many small things, songs and memories are tied to her.

Some days I miss her but feel ok and other days the pain from missing her feels unbearable.

I pray to my ancestors for continued strength, strength of sitting with and processing the grief.

Grief is handled different from culture to culture and within different beliefs.

In my culture we donít compartmentalize grief or trauma (defense mechanism where someone suppresses their thoughts and emotions). Instead our value and principles include allowing us to process thoughts, feelings and loss in private without a timeframe.

Certain times of the year naturally causes us to be flooded with memories and grief can start again.
Each loss is different and affects us different.

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Old 12-22-2021, 09:02 AM   #20
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My grief:

1. The life I knew is gone. Forever.
2. I have so many social determinants of health that prevent me from a better quality of life that I'm now considering that I've lost my health and rehabilitation prospects.
3. I'm angry at those who contributed to my waning and premature health issues.
4. I've lost relationships, loved ones through death, my identity, my reputation, potential careers, higher education, scholarships, assistantships, equal opportunities, my identity, my cherished keepsakes, my health, my savings, my dreams, my purpose. It's hard to move forward when so many losses stem from people who offend, abuse, victimize, and traumatize others. Victims should have more rights than offfenders.
5. I've dealt with all the stages of grief in may different ways, and they all keep returning and resurfacing, because of ongoing trauma (not something in the past, but something very present and long-lasting and systemic).
6. Race-based trauma, ageism, ableism, gaslighting, emotional abuse, psychological abuse, segregation, discrimination, hate speech, bigotry, xenophobia, fat-based hate speech, and toxic positivity (a form of gaslighting and emotional abuse and psychological abuse - regardless of intent) have all contributed to my many losses of health, identity, reputation, relationships, and more. But many of these things are not considered "substantial" in the criminal justice system, or they are highly overlooked and difficult to prove in courts of law. Thus, these true yet unsubstantiated victimizations may add many forms of secondary victimizations and traumas by the ways in which people don't believe us, undermine us, minimize our pain, gaslight us, victim-blame, victim-shame, and stereotype us. These are all ongoing, pervasive, and systemic traumas that are not in the past (only privileged people - regardless of background - would claim that these things remain in the past). The ones living on the margins, the ones with multiple statuses, and the ones who are affected by social determinants of health are the most impacted with loss and the grief that follows. The grief is neverending because the trauma is neverending.

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