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  #1  
Old Oct 16, 2020, 11:47 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.

☀️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
__________________
#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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  #2  
Old Oct 17, 2020, 12:01 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
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.
__________________
#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
  #3  
Old Oct 17, 2020, 12:02 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
🤞🏽My car 🚙 is making noises. I have an appointment tomorrow morning 🥺. I’m praying to my ancestors....
Life is definitely a roller coaster. In the last two months I’ve paid $450.00 to two veterinarians. I need to look 👀 into insurance and see if it’s a better option.
__________________
#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
  #4  
Old Oct 22, 2020, 07:03 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
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.
__________________
#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
  #5  
Old Oct 31, 2020, 01:51 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
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
__________________
#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
  #6  
Old Mar 08, 2021, 09:40 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 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.
__________________
#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:
SlumberKitty
  #7  
Old Mar 09, 2021, 05:42 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
It seems that each time I have a sinus infection or respiratory infection it triggers both of my rare diseases. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InChronic Pain, Autoimmune Diseases & Rare Diseases Check-InChronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Thursday, March 11th 2021- I have my consultation with my new immunologist. I have my fingers crossed Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In that he will be a provider that listens.

Chronic Idiopathic Urticaria- I’ve tried several antihistamines over the years and the only one that works for CIU is hydroxyzine...unfortunately it’s a sedative.

Xolair is not a good match for me...it’s 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.

I’m having a day of extreme frustration.

I’m tired of itchy chronic hives, not regular hives that feel like my skin is on fire Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In covering my whole body and face.

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

I’m also tired of fatigue, sore throat and runny nose.

I’m tired of having so many chronic illnesses that finding treatments is difficult.

I’m also so hurt that I’ve 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.

I’ve been continuing to eat Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In 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. I’m looking forward to feeling better and being able to cook the recipes.
__________________
#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
  #8  
Old Mar 14, 2021, 03:47 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
Saturday was decent. I never say my day is “great” and the term “good” makes me equally as uncomfortable. Why? I’ve had depression since I was 16 years of age. Depression is like any other chronic illness....chronically flaring up. I don’t like labeling my days as “great or good” 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 I’m no longer in remission, my autoimmune diseases and rare diseases impact my life more than depression. I’m 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 hadChronic Pain, Autoimmune Diseases & Rare Diseases Check-In I said, “it’s great.”

I **** you not, that night I had a horrible Chronic Idiopathic Urticaria flare up. I actually don’t 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, “I’m alive.”
__________________
#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
  #9  
Old Mar 19, 2021, 06:05 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’m very frustrated. Thursday, March 18th 2021, an urgent care clinic told me to go to a local hospital. The urgent care- was not able to help with the my Chronic Idiopathic Urticaria flare up.

Local hospital- Nurse practitioner did not know what to do and just checked my basic vitals.

Male medical doctor- Verified my vitals. I was asked multiple times if I fell, hit my leg or was hurt by someone. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In Me: “No, it’s called Chronic Idiopathic Urticaria. This just happens to be the worst flare up I’ve ever had.”

Female medical doctor- Had a little knowledge. She was aware that dexamethasone, prednisone and triamcinolone would not help at all. The first two would only cause weight gain. She failed to know that also offering to give me hydroxyzine (which I do take for emergency Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In flare ups) would be a horrible idea being that I was at the hospital alone. Hydroxyzine- is a antihistamine generation one sedative. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Being recommended and prescribing a medication (Doxepin) with possible side effects of: thoughts about suicide or dying
* attempts to commit suicide
* new or worsened symptoms of anxiety
* feeling very agitated or restless
* panic attacks
* trouble sleeping (insomnia)
* new or worsened irritability
* acting aggressive, angry, or violent
* acting on dangerous impulses
* an extreme increase in activity and talking (mania)
* other unusual changes in your behavior or mood

Xolair - Been offered this by multiple immunologist and it has too many “possible” side effects that could make other autoimmune diseases I have worse. Hair loss and increased pain. I also have Fibromyalgia and Alopecia. I don’t need the possibility of more hair loss or more pain.

Me: I decline Xolair and Doxepin prescription
__________________
#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
  #10  
Old Mar 19, 2021, 06:11 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’ve been asked about getting a Covid-19 vaccine by my primary care provider and new immunologist.

My thoughts: First let’s focus on assisting me with my current chronic illness flare ups. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

I’ve been thinking Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In about it however I’m not interested in opinions from able bodied people or individuals without the exact rare diseases and autoimmune diseases that I have. Our situations are not the same.
__________________
#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
  #11  
Old Mar 19, 2021, 09:31 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
Today was better. My appointment with my new immunologist went good. All the news was not good but I appreciated that he thoroughly went over 5 pages of labs line by line. I do feel he’s very knowledgeable, it’s still important to me that all my providers not lash out like a narcissist when I decline a treatment recommendation. At the end of the day they need to respect my final decisions. It’s my body and I’m not willing to roll the dice on medications that have severe side effects. It turns out my Hashimoto levels are completely out of wack which is causing my two rare diseases to flare up. I have a lot of medical discussions to make very soon. I’m just trying to relax this weekend and take it easy. I’ve been restricted from running Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In which my feet are swollen, I can’t get any of my shoes on. I purchased a pair of recovery slides.
__________________
#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:
mote.of.soul
  #12  
Old Apr 02, 2021, 03:47 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’m currently restricted from running Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In however have been walking 15-20 minutes. My new immunologist is out of state. The other immunologist in the practice, I wanted to see to begin with. She was out with COVID and just returned to the office. I had an appointment with her yesterday. We have a game plan and now waiting on lab results.

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:
mote.of.soul
  #13  
Old Apr 30, 2021, 03:09 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
Many Meds and Treatments for Rare Diseases are Available at Speciality Pharmacies Instead of local “Regular Pharmacies.” Pharmaceutical Companies want to Keep Our Business.

We are Assigned Patient Support Specialists. They Follow Up, Check-In Prior to Colonial Holiday Closing, Schedule Shipping and Handle Problems We Encounter Getting Adequate & Correct Medical Treatment.

If Your Provider Decides to Change Your Speciality Meds or Treatment. It Will be Your Responsibility to Notify Your Assigned Patient Support Specialists.

You Will Be Assigned New Patient Support Specialists Each Time Your Speciality Meds or Treatment is with a Different Pharmaceutical Company.

I’ve Opted for Sending My Patient Support Specialists, Dear Jane Emails. Lol 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
  #14  
Old Apr 30, 2021, 03:21 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 received my first two Xolair injections (speciality monthly treatments) on Friday, April 23rd 2021.

So Far My Chronic Idiopathic Urticaria Flare Ups and Angioedema have *NOT Changed.

I’ve had an increase in my Fibromyalgia Pain. Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In (I’m a 4:20 LICENSED Spoonie). I’ve purchased infused bath bombs, I have cannabis edibles and medical cannabis to smoke Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In.

It seemed like every pharmaceutical medication recommended for my Fibromyalgia has serious side effects like “suicidal ideation”, “increased depression”, “increased anxiety and “agitation.”

I understand what “possible side effects” mean, it means enough people experienced those side effects to become a warning.

Immunologist - A). Has Recommended I Continue Taking Hydroxyzine Twice a Day and using Clobetasol cream
for Chronic Idiopathic Urticaria.

B)Dexamethasone for Angioedema.

I have my fingers crossed Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In that Xolair injections will eventually put me in remission or reduce my Chronic Idiopathic Urticaria and Angioedema flare ups.

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
  #15  
Old Jul 08, 2021, 02:30 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

This week my Fibromyalgia pain and muscle spasms have been non-stop. Non-stop and keeping me up at night. This evening I took half a cannabis edible….slept. I cooked in my crockpot. I really freaking like crockpots with multiple settings Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In. I ate some southern cabbage, cleaned Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In my kitchen and took a shower.
My teenager received a lot of hospital treatments and is in summer school. I’m going to take another half an edible and get a few hours sleep 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
  #16  
Old Jul 23, 2021, 01:47 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

“As someone who has been consistently going to therapy for years & working "on myself"....... let me tell you there is only so much individual introspection and healing you can do when the structural forces and external events contributing to mental illness continue acting on you.”
@kvetchings (Twitter)

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
  #17  
Old Jul 25, 2021, 06:52 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

I feel grateful I logged in 380 days in a row, logged 343 exercises and logged 580 meals.

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
  #18  
Old Jul 26, 2021, 04:53 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’m extra productive in the wee hours of the morning. I send multiple business related e-mails/submit grievances, get forms ready to mail and call up tech support. Lol Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In I’d love to be a fly 🪰 on the wall when these folx see what time I regularly send them e-mails Chronic Pain, Autoimmune Diseases & Rare Diseases Check-InChronic Pain, Autoimmune Diseases & Rare Diseases Check-InChronic 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
  #19  
Old Jul 26, 2021, 05:20 AM
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Cocosurviving Cocosurviving is offline
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Location: Muscogee (Creek) Nation Reservation
Posts: 5,920
Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

“Money worries can be paralysing, devastating. Over a long period....
Plus, being poor costs an absolute fortune.”
Twitter

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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
  #20  
Old Aug 25, 2021, 07:02 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
Sunday got up early, took a shower and scheduled an appointment to have a massage.

I regularly have feet and body massages to help with stress, anxiety, depression and Fibromyalgia tender points. I really enjoyed the massage.

Yesterday, while waiting on my teenager, a lady walked by and I noticed her shirt,

“I absolutely am not trying to fit in.”

I put my window down and complimented the shirt.

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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
  #21  
Old Aug 29, 2021, 11:06 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
“10 Ways to Relax That Require 10 Minutes or Less


Hey

Ron here...

While it would be nice to just take a long vacation or check out of work each day for a few hours, most of us have limited time and opportunities to relax. However, we usually do have 10 minutes here and there throughout the day.

There are several ways you can relax in just 10 minutes or less. Do this a few times a day, and you’ll find that you might not need that long vacation.

Use these methods to relax in as little as 10 minutes:

1. Meditate. The benefits of meditating are many. It’s incredibly popular right now but has been around for thousands of years. Experts often claim that even just one minute of meditation per hour is enough to gain benefits.

2. Control your breath. Your breath is one of the few parts of your physiology you can control. Slower, deeper, breaths will help you to relax. Focus on the feeling of your breath passing through your mouth or nostrils. Count your breaths if you find that helps.

3. Visualize a peaceful scene. Our moods follow our thoughts. Think about something pleasant, and you can expect to experience a more enjoyable mood.

4. Spend time with your pet. Pets are a blessing. They require little and ask for even less. They’re always happy to see you. Cuddle up with your pet and notice how much better you feel. Your pet will love the extra attention, too. Don’t have a pet? Borrow a friend’s pet.

5. Talk to a friend. Call up a friend, or even better, have a face to face. A few minutes spent chatting with a trusted confidant can do wonders for your stress levels. You’ll also be maintaining your relationships.

6. Take a short walk. A long walk is even better, but if you only have 10 minutes, a short walk can help a lot if you’re feeling stressed. Pay close attention to your surroundings while you walk. It will keep your mind off your challenges for a few minutes.

7. Listen to music. Music has an amazing ability to alter one’s mood. Think of a few songs that will put you in a mood you’d rather feel. Listen away! If you don’t happen to have those songs available at the moment, YouTube has just about every song available for free.

8. Chew gum. Chewing gum has been shown to be an effective reducer of cortisol, the primary stress hormone. Many people like to blow bubbles, too. You can lower your stress and amuse yourself at the same time.

9. Sit outside in the sun. Relax for a few minutes on a nice day and enjoy the sun. The warmth on your body can be a great mood booster, and you’ll get a nice dose of vitamin D, too.

10. Write down everything that worries you. One way to be less stressed and anxious is to write down everything that’s bothering you. Get it out of your system and down on paper. By externalizing it, you’ll often find that things aren’t quite as bad as you thought.

If you’re regularly feeling stressed, it’s important to do something about it. Not only is it miserable to feel stressed all the time, but it’s terrible for your health.

If you want to relax, make time for it each day. Ten minutes can be enough to take the edge off your stress levels. Don’t allow 10 minutes to go to waste. Use them to relax!

Ronald Smith
Rare Disease Story Shirt”

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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; Aug 29, 2021 at 11:38 AM.
Hugs from:
SprinkL3
Thanks for this!
SprinkL3, zapatoes
  #22  
Old Aug 30, 2021, 12:18 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
Why Medical Gaslighting Isn’t Always Easy to Spot.

Why Medical Gaslighting Isn’t Always Easy to Spot | 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
Hugs from:
SprinkL3, zapatoes
Thanks for this!
SprinkL3
  #23  
Old Sep 06, 2021, 10:37 PM
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zapatoes zapatoes is offline
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Member Since: Sep 2018
Location: Islandia
Posts: 4,263
Today have TMJ pain and always one side of my face and jaw, may have allergies too and sinus headache or a just a headache. It’s get better then shows up again. Idk why.
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SprinkL3
  #24  
Old Sep 16, 2021, 04:59 PM
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Rose76 Rose76 is offline
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Member Since: Mar 2011
Location: USA
Posts: 12,669
I was taking hydrocodone and Indocin for pain relief. It was working pretty good. The I got diagnosed with a probable slow GI bleed. They base that on my recurrent severe anemia. GI doctor told me to stop taking Indocin, which is an NSAID and can prevent blood from clotting when you need it to. So I stopped it.

For a good while, I didn't feel any the worse. The good you get from Indocin stays with you for a while after you stop taking it. Well that wore off, and now I'm sore as heck.

I can't take Indocin, if it's going to make me anemic. But I miss taking it so bad. That was my miracle drug. Indocin is prescription only because it can have awful side effects, but it sure did work. Without it, I feel miserable. I am staying in bed way too much. I'm getting awful depressed.
Hugs from:
SprinkL3, zapatoes
  #25  
Old Sep 19, 2021, 12:06 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
Being on Disability Does Not Mean I'm 'Lazy' or 'Lucky'

“I have been told the following quotes recently after people finding out I’m on disability:
1. “You’re so lazy, you don’t do anything all day.”
2. “You’re so lucky to not have to work.”
3. “Man, I wish I had your problem.”
I hear these on a regular basis. I suffer from debilitating chronic pain as well as a handful of mental health issues, and I can honestly say I am not lucky or lazy. In fact these words are quite hurtful.

So to those who said these comments, please take this into consideration:

1. I can’t work because I am always in pain. If it felt like someone was stabbing you in the abdomen every two seconds, would you?

2. I am not lazy. I physically cannot move. Yep, that means I can hardly even walk two steps without crying some days.

3. My day revolves around medication, doctor visits, and even finding the strength to get out of bed. Please tell me how you would want this. I wouldn’t wish it on my worst enemy.

4. I miss working and socializing. This is not fun. I miss being a “productive” member of society and doing what I love.

5. It takes a lot of fight to even get on disability. It takes endless documents and months to process. I am on it because I need it. I am not lazy or lucky. However, being on disability is something that I am not ashamed of. Although, with comments like these, some days I feel like it’s something I should be. Please take time to consider why someone is on disability, or even better, look into it. It actually takes a lot of courage and strength.
For those of you who are on it – never be embarrassed! You are not lucky or lazy, you are doing the best you can. We should be applauded for going through what we are. Disability and all.”

Being on Disability Does Not Mean I’m ‘Lazy’ or ‘Lucky’ | The Mighty

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, zapatoes
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