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Default Sep 05, 2020 at 07:47 PM
  #1
☀️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, Fibromyalgia, Celiac Disease, Multiple Sclerosis, Ehlers-Danlos etc. 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 and toxic positivity.

☀️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

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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 Sep 05, 2020 at 10:32 PM
  #2
🔥In a flare
This flare is my fault. I ate a few meals over the last three days that were not healthy/friendly to my immune system.
I was able to leave and purchase fresh fruits/vegetables, cranberry juice and soup. I also have tea to calm my stomach. 🍅🥬🥒🥦🥕🌽🍍🍌

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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 Oct 05, 2020 at 02:38 AM
  #3
♻️♻️♻️♻️ RePosted @withregram • @worrywellbeing Over the past few days, I’ve been struggling and having dealt with mental health problems for a long time, I’ve learnt to recognise the signs that I’m finding things harder than usual. I can’t really pinpoint what’s wrong, I just don’t feel right. I’ve been finding it hard to get up in the mornings, I’ve had panic attacks (something I haven’t experienced in months), my thoughts have felt completely uncontrollable. If you’re going through a difficult time at the moment, you’re not alone. I’m not sure what the answers are, this account has never been about giving advice and telling people how to be happy, it’s about me being honest, sharing my experiences, sharing things that have helped me, reminding you that you’re not alone. I am struggling at the moment, but that’s okay. And if you’re struggling, that’s okay. You will get through this. Recognising you are struggling is the first important step in helping yourself feel better💚

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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 Oct 07, 2020 at 02:48 AM
  #4
The last two days I’ve been in a lot of pain. When weather fluctuations happen I get flares from my autoimmune illnesses.

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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 Oct 15, 2020 at 07:01 AM
  #5
Had my first offical flare up with the arthritis. Never had it before. Horrible pain the joints since friday. Started a steroid pack on monday and things seem better.

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Default Oct 16, 2020 at 06:23 AM
  #6
Weather fluctuations has my immune system going bonkers.

Yesterday, I found out my teenager needs surgery on both eyes. Our dog has been ill. We had a second trip to our vet
yesterday. Our dog has a joint out of place, which is not recommended for surgery however will turn to arthritis.
She will begin taking a supplement for life. Our baby also has an ear infection and has medication to take for two weeks.

I just took all my vitamins and supplements. I’m letting my herbal tea cool off.

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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 Oct 16, 2020 at 11:20 PM
  #7
Friday, October 16th , 2020

When fall and winter arrive I get a bit nervous about my depression returning. I’ve been doing really well the last two years. I have not been on any depression medication or any antipsychotic since the fall of 2018. I created my own coping tool box which I also have to stay up on my autoimmune diseases and rare diseases. I have Hashimoto/Thyroidism/Graves Disease which definitely does impact your mood and emotions.

I had a great conversation with my teenager today. My teenager also has Hashimoto and other autoimmune diseases and rare diseases as well. We both acknowledged that changing our foods, eating certain foods in moderation and regularly being active has made a big difference in our moods. Our mood is not such a roller coaster.

The last few days I can feel how my body is starting to become symptomatic. Weather changes are a big challenge for me. My fibromyalgia pain and fatigue is not shy. Yesterday and today the nausea has been terrible. I drink a lot of caffeine free loose herbal teas. I’ve been very diligent about taking my vitamins and supplements. We recently moved and today a contractor installed grab bars in my restroom.

I walk our dog frequently. Being out in nature helps keep my depression away. My legs have been in a lot of pain so I don’t walk too long. I really miss going hiking and look forward to resuming. I sometimes get overwhelmed juggling multiple chronic illnesses and having to stay on healthcare specialists to provide continuity of care.

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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 Oct 22, 2020 at 07:02 PM
  #8
Me and My Grandma Were Initially Diagnosed w/ Pneumonia. Then Diagnosed w/ Covid19. My Mom, Stepdad and 9 Year old Niece Also Diagnosed w/ Covid19. Me, My Mom and Grandma Are Very Symptomatic. Used My Epipen Yesterday and had to go back to a local hospital. Covid19 is not fake or a hoax.

I’ve been sleeping a lot, taking my vitamins and supplements. Plus eating a lot of fresh vegetables, fruits and drinking herbal teas. And spraying all the rooms w/ Lysol, cleaning doorknobs and light switches etc.

I was not sure about the Pneumonia Diagnosis. My Grandma was Positive it was wrong. My First Symptoms, My Asthma Was Continuously Flaring Up. Then Fever, Chills, Diarrhea and Vomiting etc. The three of us with symptoms all have asthma and other autoimmune diseases. Plus I 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
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Default Oct 27, 2020 at 12:16 AM
  #9
coco, I hope you feel better soon. Keep us informed, dear one.
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Default Oct 31, 2020 at 01:49 AM
  #10
Still trying to heal from Covid19. It turns out my niece and nephew contacted Covid19 at their in person school. Which is how we all (mom, stepdad and grandma) ended up with Covid19. Me and my teenager were helping them with homework and running errands for my grandma. We’re all on antibiotics plus me and my teenager are on additional medications for our rare diseases. My teenager tested positive for Covid19 Friday, October 30th, 2020.

My beginning symptoms were terrible. My fever continuously spikes 100.7 and 100.8, diarrhea, chills, dizziness, loss of appetite, lots of sleeping, very fatigue and my two rare diseases continued to flare up. My treatment at a Mayo Clinic location has been pushed back.

Having Covid19 is not only Horrible. If There is an Emergency with Your MINOR CHILD. Local Hospitals Will Make You Wait Outside in the Parking Lot. Happened to Us Thursday . #coronavirus

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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 01, 2020 at 09:52 AM
  #11
I am in pain. This week got my DX of ankylosing spondylitis. The doctor is wonderful and she is going to fight for me to get on a biologic. I will do anything to not be on fire inside my body all the time. I also have Fibromyalgia on top of it. But at least they will take OFF my medical record that I am a hypochondriac!!!! (Somatic Symptom Disorder) - which just means the doctors could not figure out what we actually wrong with me.

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Default Dec 14, 2020 at 01:14 AM
  #12
My adult daughter called yesterday...very sick. I’m her herbalist of traditional medicinals. I’m feeling much better myself. I completed my two goals for today. 1). Keep up with both my gloves 2). Don’t fall from the snow and ice. I walked my dog constantly today. She will not do her main business in the snow. Lol 😂

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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 Dec 17, 2020 at 05:19 AM
  #13
Well a major sell for $10 laptops had half the city at a gridlock halt for five hours. I was able to put together my DIY gift bags for Winter Solstice. I’m excited about Winter Solstice. I’m having a dinner this Friday for myself, teenager, adult daughter and my grandson. I’m gonna head to a grocery store tomorrow (later today). I have a lot of cooking to do. I’m very happy about finding a great sale on a Kitchen Aid mixer and it’s in my favorite color.

Y’all take care and be safe. Enjoy whatever holidays you celebrate or if you don’t celebrate any that’s just fine too.

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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 15, 2021 at 02:30 AM
  #14
It’s brutally cold, back to back ice and snow ⛄️ storms. I tried walking several times and it was too cold. I’ve had a few flare ups. I treated them primarily with traditional medicinals.

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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 15, 2021 at 02:55 AM
  #15
I’ve 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. I’ll 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.

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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 15, 2021 at 09:07 PM
  #16
I'm glad you're on your way to feeling better!
Biologics helped me, so hopefully they will help you, too.
I had never considered "somatic" to mean "hypochondriac"...I didn't know that.
I guess maybe I thought it meant that they didn't know what was wrong.
Some doctors are good ones and they do all they can to diagnose and treat patients. Others are stupid and lazy.
I've had Autoimmune Hepatitis since I was a child, and it took months for them to make a diagnosis.
It seems like I hear that about autoimmune diseases quite frequently-that it takes a very long time (months, even years) to diagnose some of them. But I digress...
Anyhow, hope you feel better soon!

QUOTE=WePow;6963823]I am in pain. This week got my DX of ankylosing spondylitis. The doctor is wonderful and she is going to fight for me to get on a biologic. I will do anything to not be on fire inside my body all the time. I also have Fibromyalgia on top of it. But at least they will take OFF my medical record that I am a hypochondriac!!!! (Somatic Symptom
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Default Feb 17, 2021 at 04:06 AM
  #17
I’m just getting back into running. I was in track in school and I continued running even after graduating college. One of my sisters also runs and my adult daughter. I walk part of the way then run part of the way. It’s definitely important to me to pace myself. I do have several autoimmune diseases and rare diseases. I’m mindful of my reality.

I try to walk and run for a total of 30 minutes. I do have to break up the time because of the weather and also until I build my running stamina back up. The temperature was 7 degrees yesterday night and breathing in the cold Autoimmune Diseases and Rare Diseases Check-In air definitely triggered my asthma.

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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 01, 2021 at 03:13 AM
  #18
Autoimmune Diseases and Rare Diseases Check-In

Rare Disease Day 2021 (Feb 28th) was nice.
I like awareness walks and runs. I ran for my rare diseases. I ran for my teenager’s rare diseases. I ran for all BIPOC with rare diseases. I ran for Ahmad Abrey, Finish The Run.

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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 06, 2021 at 12:56 AM
  #19
Dealing with a chronic illness flare up.

Resting, no walking or running until Sunday.

Dinner Autoimmune Diseases and Rare Diseases Check-In Beyond Meat plant 🪴 based, fresh acorn squash and sweet potato.

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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 08, 2021 at 09:34 PM
  #20
Happy International Womxn’s Day
Unfortunately, I feeling worse than yesterday and was not able to participate in any awareness runs or walks. This sinus infection has my throat sore, I feel very fatigued, runny nose and my Hereditary Angioedema decided to flare up as well.

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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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