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Default Jan 04, 2022 at 02:30 AM
  #61
“How Systemic Racial Injustice and Trauma Leads to Bad Health Outcomes for Black People”

Systemic Racism and Trauma Affects Health Outcomes for Black People | The Mighty

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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
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Default Jan 04, 2022 at 02:32 AM
  #62
“Disabled Doctors Were Called Too ‘Weak’ To Be In Medicine. It’s Hurting The Entire System.”

Disabled Doctors Were Called Too ‘Weak’ To Be In Medicine. It’s Hurting The Entire System. | HuffPost null

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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
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Default Jan 09, 2022 at 10:30 PM
  #63
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

•I like this platform because it allows a different type of anonymity.

•I don’t like when people assume everyone wants unsolicited advice.

•Certain topics people should ask if you would like their feedback.

•I like to post as a method of brain dumping and it helps me process my thoughts and feelings.

•Certain Generations Were Taught Not to Make Trouble. Not to Question School Districts, Teachers, Doctors, Nurses, Police Etc

•Advocating for Disability, Human and Civil Rights, Was/Is Viewed as “Making Trouble.” Colonial Culture Functions Around Certain Occupations Deemed as Noble and Untouchable.

•Generations of People Were Taught to Compartmentalize Abuse, Trauma, Micro Racial Aggressions, Homophobia and Ableism. Now Toxic Positivity is Used as a Defense Mechanism to Function in Dysfunction.

•People have a right to tell another person to leave them alone and stop giving unsolicited advice.

•A savior complex, or white knight syndrome, describes this need to “save” people by fixing their problems. If you have a savior complex, you might: only feel good about yourself when helping someone. believe helping others is your purpose. expend so much energy trying to fix others that you end up burning out.

•It does not matter if you feel you are right, if you feel the person is confused because YOUR views are different. If you work in blah blah occupation or are attending school. Respect boundaries when told to leave the person alone.

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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
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Default Jan 17, 2022 at 09:56 PM
  #64
I took all of my prescribed and recommended:
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InAntihistamines
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InVitamins
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InSupplements
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMedicinals

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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
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Default Jan 18, 2022 at 11:38 PM
  #65
I took my Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In:
Vitamin B12
Vitamin D
Magnesium
Selenium
Biotin
Allegra
Zyrtec
Synthroid
Echinacea and Yarrow

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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
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Default Jan 24, 2022 at 11:14 PM
  #66
Ending Surprise Medical Bills
See how new rules help protect people from surprise medical bills and remove consumers from payment disputes between a provider or health care facility and their health plan


As of January 1, 2022, consumers have new billing protections when getting emergency care, non-emergency care from out-of-network providers at in-network facilities, and air ambulance services from out-of-network providers. Through new rules aimed to protect consumers, excessive out-of-pocket costs are restricted, and emergency services must continue to be covered without any prior authorization, and regardless of whether or not a provider or facility is in-network.

Previously, if consumers had health coverage and got care from an out-of-network provider, their health plan usually wouldn't cover the entire out-of-network cost. This left many with higher costs than if they’d been seen by an in-network provider. This is especially common in an emergency situation, where consumers might not be able to choose the provider. Even if a consumer goes to an in-network hospital, they might get care from out-of-network providers at that facility.

In many cases, the out-of-network provider could bill consumers for the difference between the charges the provider billed, and the amount paid by the consumer’s health plan. This is known as balance billing. An unexpected balance bill is called a surprise bill.

The Consolidated Appropriations Act of 2021 was enacted on December 27, 2020 and contains many provisions to help protect consumers from surprise bills, including the No Surprises Act under title I and Transparency under title II.

No Surprises Act | CMS

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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
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Default Jan 24, 2022 at 11:25 PM
  #67
Jan 17th - 23rd 2022 Summary

•Cooked Three Meals
•Washed Laundry
•Folded Over Half of My Laundry
•Cleaned The Restroom
•Scheduled Preventive Appts
•Checked in with Friends and Family
•Attended Zoom Meetings
•Dropped off Recycling
•Grocery Shopping
•Created Meal Plans
•Organized Planner
•Attended Hair Appt
•Healing Journal

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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
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Default Jan 28, 2022 at 01:02 AM
  #68
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InI Woke Up Feeling Fatigue and Nauseous Which are Common Symptoms from My Autoimmune Diseases and Rare Diseases.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InI Listened to My Body and Allowed Myself to Rest.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InI Took a Long Nap and It Helped.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMy First Meal

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InBeyond Meat Plant-Based Sausage Links.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InFresh Avocado Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In with Seasonings.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InToast.

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InNon-Caffeine Herbal Tea (Bison Star Naturals).

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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
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Default Feb 09, 2022 at 07:05 PM
  #69
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

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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
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Default Feb 21, 2022 at 07:35 AM
  #70
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
Ups and downs

Downs
I was symptomatic for three weeks. Chronic Illnesses flare up. I attended three medical appointments last week… my primary care, endocrinologist and immunologist. I started another medication to control Hashimotos.

Fibromyalgia
I experienced a week of increased Fibromyalgia pain. I usually have a lot of pain in my legs, arms and tender points in my feet.
I have an appointment in two weeks with my Rheumatologist.

Depression
My depression is usually triggered by my chronic illnesses. I definitely have days I’m so frustrated with being symptomatic. I get upset about having a crapload of medical bills…..so much is not covered by insurance. I’ve applied for Medicaid multiple times and apparently I’m not poor, poor. I keep getting denied.

Venting
In a society that attempts to push toxic positivity on womxn, I’m glad groups and forums exist.
It helps to clear my head and frustrations. It’s a process to brainstorm and figure out solutions.
I really do get exhausted from chronic illnesses, health insurance bs, medical bills and out-of- pocket expenses not covered by health insurance.
It was hard receiving phone calls, letters and e-mails about multiple medical bills. They do not care if you make payments. Most hospitals don’t seem to relate to people who are on a fixed income and want medical bills paid off in 3-4 payments. They definitely fail to comprehend a lot of people with medical bills have several medical bills. I had medical bills sent to collections while I was making payments. I noticed that one hospital
listed the same medical bill twice. I did contact the credit bureaus.

Ups

I decided to space my medical appointments out more. I had appointments with specialists weekly and every two weeks. I started making detailed notes to get the most out of my appointments and having my provider check that I have refills.

When I’m symptomatic I sleep a lot. I took naps and went to bed a lot earlier than usual. I ate a lot of fresh vegetables and fruits.

I enjoy functional paper planning and attending virtual workshops. I use money management sheets to track my medical bills and the payments I make. I include the account numbers.

I pick workshops that interest me and align with the personal growth that I seek.
I popped in last week the last 30 minutes for two workshops (Monday and Thursday). Friday I participated in a full healing Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In*🩹 gathering that lasted about 45 minutes.

I’m still going to bed early. My teenager school district is out of school this week. Parent Teacher conference is next week.

I’m excited that Feb 28th is Rare Disease Day. I have several autoimmune diseases but also have two rare diseases.

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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 Cocosurviving; Feb 21, 2022 at 08:38 AM..
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Default Feb 27, 2022 at 01:17 PM
  #71
@Cocosurviving glad you are still posting. I hope you feel better soon. It is not easy being a parent when there are challenges in my own life.
@CANDC

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Thanks for this!
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Default Feb 27, 2022 at 10:43 PM
  #72
Yesterday evening I found out my maternal grandma’s health is not going well.

Hospice has been called in. I went to visit her yesterday and today.

I’m still processing my feelings, thoughts and my emotions.

I’m so tired of losing family.

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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
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Default Mar 19, 2022 at 01:29 AM
  #73
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Greetings everyone!

I decided to use a monthly tracker to document and track my flare ups.

This is ideal for me since I have multiple chronic illnesses with a range of symptoms.

I take my paper planner to all my medical appointments.

This tracker insert is undated and numbered to 31.

The user writes the month on the tracker which I like.

I’m a lot more into functionality vs anesthetics.

Take care everyone, get plenty of rest and be safe!

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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
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Default Mar 19, 2022 at 02:01 PM
  #74
“Dizziness, Balance and Falls During Fibromyalgia Flares.”

Dizziness, Balance and Falls During Fibromyalgia Flares – Fibromyalgia Community

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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
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Cocosurviving
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Default Mar 19, 2022 at 04:50 PM
  #75
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

I don’t ascribe to a lot of dominant society social norms, beliefs, gender norms or expectations…

I view journaling, blogging and posting on forums the same.

I post on here and chronic illnesses Facebook groups, to process my thoughts Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In, frustrations, brainstorm, brain dump and to laugh.

Towards the end of last year on a thread I created…

I was experiencing a horrible flare up and vented my frustrations…

Someone imposed there UNSOLICITED opinion multiple times…. responding with ACADEMIA from some school they are attending.

Doing this is the equivalent of a healthcare provider saying, “search shows you should fee better.”

When someone is frustrated, dealing with pain and the symptoms of chronic illnesses and/or mental illnesses…

It is very toxic, harmful and lacking boundaries to give UNSOLICITED advice via quoting statistics and academia.

I told the person numerous times I was NOT interested in her unsolicited feedback.

It does not matter if you have the best of intentions, people have the right to be left alone and NOT want your unsolicited feedback.

I requested the thread be deleted and it was at my request.

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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
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Default Mar 21, 2022 at 01:14 AM
  #76
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

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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
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Default Mar 21, 2022 at 03:31 PM
  #77
5 Ways You Might Still Get a Surprise Medical Bill
Even with the No Surprises Act and its consumer protections now in effect, you can still get an unexpected bill. Here's what to do.

5 Ways You Might Still Get a Surprise Medical Bill - Consumer Reports

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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
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Default May 01, 2022 at 11:01 PM
  #78
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InAnti-depressants
2012 - Gained 40 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMedication Changes

2013- Lost 40 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMedication Changes
2017 -2018 : Gained 100 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InTapered Off All Anti-depressants

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InStarted New Medications + Vitamins/Supplements (Chronic Urticaria, Asthma, Hashimotos, Fibromyalgia & Angioedema)

Jan 2019- Lost 48 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMedication Changes
(Chronic Urticaria, Asthma, Hashimotos, Fibromyalgia & Angioedema)

2020- Gained 15 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InMedication Changes/Injection Treatments
(Chronic Urticaria, Asthma, Hashimotos, Fibromyalgia & Angioedema)

2021- Gained 20 lbs

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InTapered Off Three Medications
April 2022- Lost 10 lbs

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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
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Default Nov 12, 2022 at 12:06 AM
  #79
Our weather dramatically changed today. It’s a good day for warm herbal tea.

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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
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Default Jul 28, 2023 at 03:57 PM
  #80
Quote:
Originally Posted by Cocosurviving View Post
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In.

☀️Not Many Symptoms Right Now
🌦A Few Symptoms But They’re Manageable
☔️Recovering From A Few Heavy Symptom Days
🔥In A Flare
🚨Symptoms Feel Unmanageable

Autoimmune Diseases
An autoimmune disease is an illness that causes the immune system to produce antibodies that attack normal body tissues. Autoimmune is when your body attacks itself. It sees a part of your body or a process as a disease and tries to combat it. This is different from a Primary Immuniodefeciency Disease (PIDD), which occurs when when you do not have the ability to defend against outside diseases.

Rare Diseases
In the United States, a rare disease is defined as one that affects fewer than 200,000 people. The prevalence of a rare disease usually is an estimate and may change over time.

Individuals can be disabled by chronic autoimmune diseases and rare diseases such as Asthma, Diabetes, Lyme Disease, Cancer, Chronic Fatigue Syndrome, Lupus, Hashimoto/Grave’s Disease, Fibromyalgia, Celiac Disease, Multiple Sclerosis, Ehlers-Danlos, Arthritis, Atopic dermatitis, Ankylosing spondylitis, Sjögren's syndrome, Psoriasis

This is a brief list, a full list can be found online.
It can be very challenging for individuals with invisible chronic illnesses to receive support. Many of us experience discrimination, stigma, limited support and toxic positivity from people.

☀️Not Many Symptoms Right Now
🌦A Few Symptoms But They’re Manageable
☔️Recovering From A Few Heavy Symptom Days
🔥In A Flare
🚨Symptoms Feel Unmanageable

Now getting round to reading a thread or two.

My thread of food issues will help but...
No guarantees...

Is this a joke?

__________________
Happiness is what I cling to, I strive for it each and every moment of the day. Problem is holding onto that. Come the day of my end the planet will have lost a great friend!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9818512/

Go to section 8 Conclusions...
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