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  #26  
Old Oct 01, 2021, 10:33 PM
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zapatoes zapatoes is offline
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Member Since: Sep 2018
Location: Islandia
Posts: 4,263
Today have pain on the left side of my face, but TMJ not bothering me, and had lower back pain, too and neck pain today too. Seems to be weather related and maybe allergies. Lower back pain could be from stress or sleeping on the couch. Did get a lot of walking in today. Shoulder is better pain wise and my left hand often hurts, but likely due to typing daily for work and using iPhone.
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SprinkL3

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  #27  
Old Oct 31, 2021, 10:02 AM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #28  
Old Oct 31, 2021, 10:58 AM
SprinkL3 SprinkL3 is offline
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Location: DELETED
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I'm bedbound or at least partially bedbound for the next few days. I'm experiencing post-exertional malaise (PEM) due to my chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Traditional treatments (like exercise, movement, mindfulness) don't work for me, and could exacerbate my conditions (including my dissociative disorder, DID). So, I try to get rest and deal with this PEM the best I can. It's very depressing when I truly want to get things done around the apartment but can't.
  #29  
Old Nov 01, 2021, 11:12 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
I DONATED PLATELETS IN SEPTEMBER. I RECEIVED A LETTER FROM THE RED CROSS ABT MY WBC (WHITE BLOOD CELLS).

WHITE BLOOD CELLS ARE AN IMPORTANT PART OF YOUR IMMUNE SYSTEM, HELPING YOUR BODY TO FIGHT OFF DISEASES AND INFECTIONS. IF YOU HAVE TOO FEW WHITE BLOOD CELLS, YOU HAVE A CONDITION KNOWN AS LEUKOPENIA.

I’LL BE GOING TO A HEMATOLOGIST SPECIALIST TO TEST FOR “AUTOIMMUNE LEUKOPENIA.”

I SPOKE TO THE NURSELINE THROUGH MY HEALTH INSURANCE AND IT DID HELP.

A FEW MONTHS AGO, I WAS HAPPY ABT NOT HAVING ENDOMETRIOSIS.

STAYING BUSY HELPS ME NOT WORRY. I’M LOOKING FORWARD TO VOLUNTEERING WITH A LOCAL UNHOUSED OUTREACH PROGRAM THIS MONTH.

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
  #30  
Old Dec 01, 2021, 08:10 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Healthcare Open Enrollment Got Me Like Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Accepting Applications for Quality Private Health Insurance w/Excellent Coverage in Exchange for MONTHLY Spooning, Home Cooked Meals & a SEXLESS Marriage. #OpenEnrollment #SpoonieLife #Memes #Healthcare #ChronicIllnesses

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
  #31  
Old Dec 02, 2021, 03:27 AM
SprinkL3 SprinkL3 is offline
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Posts: 2,752
I've been medically gaslit and still am. It is, indeed, a form of medical trauma.

There are different forms of medical trauma that rarely get discussed. The heterogeneity of trauma is such that trauma is very diverse, so its etiology (origin) will differ, as well as the responses and sequelae to specific trauma types will differ. Avoidance may be an overall symptom, but avoidance from what? For someone who struggles with medical traumas, avoidance of hospitals or certain treatments might be the response.

Here are some different forms of medical trauma:

1. Medical gaslighting

2. Physiological injuries after experiencing violence-based trauma such as school bullying, school shooting, neighborhood violence, childhood sexual abuse, childhood physical abuse, shaken baby syndrome, being born with birth defects and having to live with those defects because of neonatal abuse by the mother, combat-based injuries as either a military employee or as a civilian living in a warzone, terrorism victimization, hate crime victimization, etc.

3. Psychological gaslighting (and thus being misdiagnosed and/or mistreated in psychotherapy settings - either with professional licensed therapists or, as a double whammy with spiritual/religious/ritual trauma, from a pastoral counselor and the like)

4. Pregnancy trauma (most often experienced by African American/Black women in the United States, according to a recent study that was on a webinar in the past from APA's Trauma Division)

5. Experiencing iatrogenic effects from either a medical professional or a psychological professional (or both); this most often occurs when you've been mistreated due to being misdiagnosed, which are forms of medical gaslighting consequences, or when you are properly diagnosed but the treatment negated to see potential interactions with comorbidities and/or other things like medications, or when the treatments are correct for the correct diagnosis but their side effects are painful and crippling

6. Experiencing medical malpractice or psychological malpractice

7. ICU traumas

8. Other medical traumas not specified above

Each of the traumas will create different reactions in individuals with different histories.

This is why pandemics bring about worsening conditions for some people who have experienced medical traumas in the past - in particular for those individuals who wish not to experience any more medical traumas in the future - especially during a pandemic when resources are scarce, which means risk for medical traumas listed above increase dramatically!

For persons of color, they may be discriminated against, which is hard to prove but nonetheless a form of unsubstantiated victimization in the medical malpractice realm. Some have even died prematurely as a result of medical discrimination and negligence/malpractice.

For impoverished persons of any race or ethnic background, they are at a disadvantage because they often lack healthcare insurance, a healthcare provider, the means to be able to afford the copayments on preventative care and other forms of medical and/or psychological treatments, and the means to be able to find a local provider - which includes trouble with transportation to and from medical facilities.

For persons with mental illnesses, our experiences with the medical community often include medical gaslighting and forms of medical discrimination. Our symptoms are often overlooked, and therefore we are misdiagnosed, under-diagnosed, or not diagnosed at all and therefore mistreated. As our symptoms worsen - some to the point of having preventable amputations, long-term physiological illnesses, preventable cancer, and/or preventable premature death, our institutional betrayal trauma to medical traumas also worsen.
  #32  
Old Dec 02, 2021, 10:07 AM
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Cocosurviving Cocosurviving is offline
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Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Th*nks-Massacre Celebration Aftermath.

6 Adults, 4 Received a Covid Vaccine. My Mama is the Only One Who Received the Booster. 2 Teenagers, 2 Toddlers & 2 Babies Also Attended. My Niece + Her 2 MN Old Baby Have Covid.

I Stopped By Fixed 2 Plates & Immediately Left. My Teenager Did NOT Accompany Me. We Don’t Celebrate Native Indigenous Genocide but Do Observe National Day of Mourning. I Was the Only Person Wearing a Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In Mask. I Am Immunocompromised, I Have NOT Received a Covid Vaccine.

I Explained to My Mama, You Have to Set Boundaries with Everyone Including Family. My Mama is Mad But Was Well Aware, She Invited Family Over Who Have NOT Received a Covid Vaccine + None of Them Wore Masks Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In.

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #33  
Old Dec 02, 2021, 11:21 AM
SprinkL3 SprinkL3 is offline
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Location: DELETED
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Quote:
Originally Posted by Cocosurviving View Post
Th*nks-Massacre Celebration Aftermath.

6 Adults, 4 Received a Covid Vaccine. My Mama is the Only One Who Received the Booster. 2 Teenagers, 2 Toddlers & 2 Babies Also Attended. My Niece + Her 2 MN Old Baby Have Covid.

I Stopped By Fixed 2 Plates & Immediately Left. My Teenager Did NOT Accompany Me. We Don’t Celebrate Native Indigenous Genocide but Do Observe National Day of Mourning. I Was the Only Person Wearing a Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In Mask. I Am Immunocompromised, I Have NOT Received a Covid Vaccine.

I Explained to My Mama, You Have to Set Boundaries with Everyone Including Family. My Mama is Mad But Was Well Aware, She Invited Family Over Who Have NOT Received a Covid Vaccine + None of Them Wore Masks Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In.

Sent from my iPhone using Tapatalk
I totally agree with what you said above, and I am just realizing what Thanksgiving is and how it had affected Native Americans. I was so blindsided by our culture that I had no idea about its history. I'm sorry.

Also, I hope you and your mom are safe. I don't understand how people can go without masks at holiday gatherings. Haven't we lost enough people that way in our nation? Anyway, I pray you and your mom are safe. Indeed, boundaries do need to be set.
Thanks for this!
Cocosurviving
  #34  
Old Dec 11, 2021, 06:38 PM
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Cocosurviving Cocosurviving is offline
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Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
I received a flu shot yesterday. I experienced a horrible flare up last night. I took two of my emergency Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In medications. I’m going to rest this weekend, watch movies, BuJo on YouTube and get next week set up in my planner.

Right after I got my flu shot within 30 minutes, I was super nauseous and had a migraine. I stopped at a convenience store for herbal tea. That tea was horribly too sweet. I put raw honey Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In and lemon juice in my herbal teas.

The nurse had concerns. She said part of the needle is made with latex and the flu shot has some ingredients similar to eggs. I noticed the questionnaire asked about egg allergies. I always carry my Epipens. I explained my plan of action for the next few days. #spoonie #allergyready

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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
Hugs from:
SprinkL3
  #35  
Old Dec 12, 2021, 10:19 AM
SprinkL3 SprinkL3 is offline
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Posts: 2,752
Cocosurviving, I responded to your post in a different thread. I just wanted you to know that I'm thinking of you and hoping that you feel better soon.
Thanks for this!
Cocosurviving
  #36  
Old Dec 16, 2021, 01:56 AM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
I appreciate the kind words of encouragement.

I have not had much of an appetite. I ate light the first few days. Has anyone else tried Tummy Pops? I purchase mine from Amazon. Tummy Pops are ginger lollipops that help with nausea. They really help me. I usually have one while making hot herbal tea.

Tonight I ate a wild rice burger. I use Beyond Meat which is plant based.

I started using a meal planner. Pre-planning meals cuts down on eating out which is better for my health.

I also started focusing on money management. I started tracking my spending and I use a money management system to track/create a debt reduction plan. Example, I have all my medical bills listed on one sheet. I add each payment I make an the new balance.

This morning I immediately noticed overcast and I don’t like when it’s dark, doom and gloom. I dropped my teenager at school then purchased a lamp. The sales rep was really helpful. I told him I needed a lamp that allows higher wattage lightbulbs…which helps me with depression.

I hope everyone is doing ok. Holidays are really hard when you have a lot of loved ones no longer here and/or strained family relationships.

Sent from my iPad using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #37  
Old Dec 16, 2021, 06:22 PM
SprinkL3 SprinkL3 is offline
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Quote:
Originally Posted by Cocosurviving View Post
I appreciate the kind words of encouragement.

I have not had much of an appetite. I ate light the first few days. Has anyone else tried Tummy Pops? I purchase mine from Amazon. Tummy Pops are ginger lollipops that help with nausea. They really help me. I usually have one while making hot herbal tea.

Tonight I ate a wild rice burger. I use Beyond Meat which is plant based.

I started using a meal planner. Pre-planning meals cuts down on eating out which is better for my health.

I also started focusing on money management. I started tracking my spending and I use a money management system to track/create a debt reduction plan. Example, I have all my medical bills listed on one sheet. I add each payment I make an the new balance.

This morning I immediately noticed overcast and I don’t like when it’s dark, doom and gloom. I dropped my teenager at school then purchased a lamp. The sales rep was really helpful. I told him I needed a lamp that allows higher wattage lightbulbs…which helps me with depression.

I hope everyone is doing ok. Holidays are really hard when you have a lot of loved ones no longer here and/or strained family relationships.

Sent from my iPad using Tapatalk


I love eating ginger candies once in a while, but I haven't found any good ones yet. I never heard of the Tummy pops, but they sound like they would help.

When I used to have a nutritionist (I don't anymore; this VA doesn't offer it like the other VA did), I was encouraged to preplan meals. I was supposed to be on the FODMAP diet and then try to reintroduce certain foods later to see if I had allergies or some sort of intolerance. I may do that down the road.

I like plant-based foods a lot. I only eat a few meats, but I've been cutting down.

I'm trying to eat more fresh fruits and veggies, but they tend to spoil before I eat them. It's so expensive to order every day, so I will need to plan my meals every two or three days, or perhaps every week. I used to only buy processed foods for the entire month and rest for 2 weeks with no deliveries. But now I had to deal with finding some "new normal."

I'm alone for the holidays, but I'm okay with that. I do get to visit with my rec rehab therapist tomorrow morning for a brief walk. I have gifts for her. We both wear masks. She's vaccinated and boosted and masked.

I also get to see two friends at separate times outside on Sunday, so that I can hand them their gifts and the extra wine that they accepted. I bought 12 bottles of a blend of reds and whites a few months ago, but I can't drink all that. I also didn't realize that wine expires, so I needed to give them away. I'll keep 4 for myself. We all wear masks, and we're all vaccinated and boosted.

I have a wonderful psychotherapist and music therapist that I see weekly. They are great supports as well.

Altogether, I have 3 therapists for very different things.

Music therapy is said to work on multiple parts of the brain at once, which also helps me ground with the alters. I have DID. I'm learning how to read notes for the very first time.

I'll be online here for Christmas and NYE. I'm not going anywhere.
Thanks for this!
Cocosurviving
  #38  
Old Dec 21, 2021, 03:41 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
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Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

1 of 4

It seeks iTunes is down. I’m trying to upgrade to VIP.

•Many times People With Physical Disabilities, Invisible Disabilities, Chronic Illnesses, Trauma, Medical Ableism, Lack of Diversity within Healthcare and Struggles with Health Insurance…..

•We post on social media seeking to reach other individuals with the same struggles. If that’s not your struggle and you have no lived experiences with these struggles, be silent instead of giving dismissive toxic positivity.

•I’ve been alternating Hydroxyzine, Cetirizine, Allegra and Dexamethasone. Drinking No Caffeine Herbal Tea for the Nausea.


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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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #39  
Old Dec 21, 2021, 03:41 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
2 of 4

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #40  
Old Dec 21, 2021, 03:42 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
3 of 4

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #41  
Old Dec 21, 2021, 03:42 PM
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Cocosurviving Cocosurviving is offline
Elder
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
4 of 4

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #42  
Old Dec 21, 2021, 03:43 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Happy Winter Solstice!

Happy Kwanzaa!

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #43  
Old Dec 21, 2021, 03:48 PM
SprinkL3 SprinkL3 is offline
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Happy Winter Solstice!

Happy Kwanzaa!

Thank you!
Thanks for this!
Cocosurviving
  #44  
Old Dec 21, 2021, 03:49 PM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
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.

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #45  
Old Dec 21, 2021, 03:50 PM
SprinkL3 SprinkL3 is offline
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@Cocosurviving - ((((safe hugs)))) I'm so sorry you are struggling with so many things. I hope you feel better.
Thanks for this!
Cocosurviving
  #46  
Old Dec 22, 2021, 01:03 AM
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Cocosurviving Cocosurviving is offline
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Quote:
Originally Posted by SprinkL3 View Post
@Cocosurviving - ((((safe hugs)))) I'm so sorry you are struggling with so many things. I hope you feel better.

Thank you Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In. 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. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Sent from my iPhone using Tapatalk
__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #47  
Old Dec 22, 2021, 07:25 AM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
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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#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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SprinkL3
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  #48  
Old Dec 22, 2021, 08:19 AM
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Cocosurviving Cocosurviving is offline
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Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #49  
Old Dec 22, 2021, 08:20 AM
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Cocosurviving Cocosurviving is offline
Elder
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In
1 of 2

•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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__________________
#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
Hugs from:
SprinkL3
Thanks for this!
SprinkL3
  #50  
Old Dec 23, 2021, 02:11 AM
Cocosurviving's Avatar
Cocosurviving Cocosurviving is offline
Elder
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
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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__________________
#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
Hugs from:
SprinkL3
Reply




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