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

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

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

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

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

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 02-15-2021, 10:14 AM   #2
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Hi Cocosurviving. I am sorry for the losses of people in your life and activities. I like your idea of a bulleted journal. Sometimes journals get lost in details and are unreadable down the road.

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

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

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

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

Thursday, March 11th 2021- I have my consultation with my new immunologist. I have my fingers crossed Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred that he will be a provider that listens.

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

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

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

Iím having a day of extreme frustration.

Iím tired of itchy chronic hives, not regular hives that feel like my skin is on fire Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred covering my whole body and face.

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

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

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

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

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

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

Last edited by CANDC; 03-09-2021 at 06:35 PM..
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Old 03-09-2021, 06:44 PM   #5
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Default Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred

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

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

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

I now walk and run Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred in remembrance of all my relations that are gone as a result of autoimmune diseases.

I walk and run Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred to bring awareness of all BIPOC with autoimmune diseases and rare diseases.

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

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 03-11-2021, 09:11 AM   #7
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Default Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred

@Cocosurviving - glad you find causes to dedicate your life to. Whatever you can do can be a tribute and a bringing awareness to those who have suffered.

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

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

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

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 03-14-2021, 01:15 PM   #9
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Default Re: Welcome to our Grief and Loss support forum(moved so get more views-was old thred

@Cocosurviving sounds rough to not know when things are going south.

I find it difficult to respond to clerks because they cannot hear me well with the mask on. They ask "How are you?" and my reply is simple: "Okay".
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And sorry I could not travel both...
I took the one less traveled by,
And that has made all the difference."
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