advertisement
Reply
 
Thread Tools Display Modes
Old 03-19-2021, 05:57 AM   #1
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Rare Disease Truths

Rare Disease Truths

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. 🙄 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 🚨 flare ups) would be a horrible idea being that I was at the hospital alone. Hydroxyzine- is a antihistamine generation one sedative. 😐


In the U.S., any disease that affects fewer than 200,000 people is labeled as rare. There are more than 7,000 rare diseases and “one in ten Americans are suffering from rare diseases, 300 million people worldwide.” Many of us have several rare diseases, so today we come together to show that: “Rare is many. Rare is strong. Rare is proud!” (raredisease.org) •

Why is a rare disease label even necessary? •

This definition was created by Congress in the Orphan Drug Act of 1983. “Rare diseases became known as orphan diseases because drug companies weren’t interested in adopting them to develop treatments.” The Orphan Drug Act created financial incentives to encourage drug manufacturers to study and develop new drugs for rare diseases. The rare disease definition was needed to figure out which conditions would qualify for the new incentive programs. (raredisease.info.nih.gov) •

Besides dealing with their specific diagnoses and medical issues, people with rare diseases still struggle to get a diagnosis, find information and get appropriate treatment. “Researchers have made progress in learning how to diagnose, treat, and even prevent a variety of rare diseases. But, there is still much to do because most rare diseases have no treatments.” Spreading awareness inspires research, which, in turn, brings hope.
__________________
#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
Cocosurviving is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:

advertisement
Old 03-19-2021, 06:11 AM   #2
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

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. Rare Disease Truths

I’ve been thinking Rare Disease Truths 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
Cocosurviving is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Old 03-20-2021, 10:54 AM   #3
ArtleyWilkins
Magnate
ArtleyWilkins has no updates.
 
Member Since: Oct 2018
Location: USA
Posts: 2,402 (SuperPoster!)
3 yr Member
7 hugs
given
Default Re: Rare Disease Truths

My husband has Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.

We have learned that last place we take him for issues related to RSD is an ER. His pain specialist gave me his personal cell phone number in case of an emergency where I think his input is needed. I didn't use it until this last month.

The problem we most often encounter is when he has to be treated for something completely unrelated to RSD. The general medical community doesn't know much about RSD, and even less about how an intrathecal pain pump works, so they make very incorrect assumptions about his morphine pump. They constantly want to touch his foot to check pulse no matter how many times we tell them not to touch. They truly have no concept of the level of pain he lives in on a daily basis.

He's currently in the hospital recovering from COVID, and has been since the end of January. It is a constant battle. For the first month, I couldn't see him, and getting clear information to the medical team was almost impossible. I have always stayed with him 24/7 during any hospital admissions just to advocate for his proper care, and not being able to be there at all was awful. It's better now that I can get up there almost every day to see him, and I have done A LOT of educating of his doctors and nurses and physical therapists. I've also been doing a great deal of coordination of care with his pain specialist. I'm pretty fierce in my advocation for his proper care because he often isn't when left on his own. Fortunately, the current medical team has been listening and learning and doing their best to respect his disease.
ArtleyWilkins is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Old 04-02-2021, 03:49 AM   #4
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

I’m currently restricted from running Rare Disease Truths 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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 04-02-2021, 03:56 AM   #5
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Quote:
Originally Posted by ArtleyWilkins View Post
My husband has Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.

We have learned that last place we take him for issues related to RSD is an ER. His pain specialist gave me his personal cell phone number in case of an emergency where I think his input is needed. I didn't use it until this last month.

The problem we most often encounter is when he has to be treated for something completely unrelated to RSD. The general medical community doesn't know much about RSD, and even less about how an intrathecal pain pump works, so they make very incorrect assumptions about his morphine pump. They constantly want to touch his foot to check pulse no matter how many times we tell them not to touch. They truly have no concept of the level of pain he lives in on a daily basis.

He's currently in the hospital recovering from COVID, and has been since the end of January. It is a constant battle. For the first month, I couldn't see him, and getting clear information to the medical team was almost impossible. I have always stayed with him 24/7 during any hospital admissions just to advocate for his proper care, and not being able to be there at all was awful. It's better now that I can get up there almost every day to see him, and I have done A LOT of educating of his doctors and nurses and physical therapists. I've also been doing a great deal of coordination of care with his pain specialist. I'm pretty fierce in my advocation for his proper care because he often isn't when left on his own. Fortunately, the current medical team has been listening and learning and doing their best to respect his disease.

Hērscē ArtleyWilkins,

I’ll definitely keep your husband in my thoughts. It’s very difficult receiving proper care with rare diseases. On March 18th 2021, I was given the wrong medication at a local ER. I’m always asked to spell my rare diseases and asked what medications I usually take. What has been helpful to me, I registered with a national organization for one of my rare diseases. I have a patient support representative assigned to me. She also speaks with hospitals about leaving about HAE (Hereditary Angioedema).

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 04-30-2021, 03:08 AM   #6
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

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 Rare Disease Truths

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 04-30-2021, 03:21 AM   #7
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

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. Rare Disease Truths (I’m a 4:20 LICENSED Spoonie). I’ve purchased infused bath bombs, I have cannabis edibles and medical cannabis to smoke Rare Disease Truths.

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 Rare Disease Truths 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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 05-03-2021, 12:16 AM   #8
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

“People make time for who they want to make time for. People text, call and reply to people they want to talk to . Never believe anyone who says they're too busy.”

“One of the most important ways you can help a loved one who is chronically ill is by being present.

Simply listening to someone can have a significant impact on their day and overall well-being.

We do not know how someone else is feeling unless we are willing to listen to them. Whether it be a bad day or a good day, approach each conversation with an ear. Be ready to listen.
When we listen, we are allowing the speaker to communicate their feelings. This lets us know if that person is happy, frustrated, depressed, sick, or sad. We can understand each other more clearly through positive, effective communication. We all need someone to talk with during times of joy and times of sorrow. So, when you listen, make sure to pay attention, be non-judgmental, and provide feedback. It makes a world of difference when we feel like our voice has been heard.”

I do not find it acceptable for people to be dismissive, part of toxic positivity and
claim to know know what a Spoonie Rare Disease Truthsis.
Lean in, listen and learn.
.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 05-03-2021, 12:23 AM   #9
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Saturday was nice...very busy.

I have days when I’m very social and other times I need space and solitude.

I spoke with family and friends in Tennessee. Visited Rare Disease TruthsRare Disease Truthsmy dad and his wife...plus my momma and stepdadRare Disease TruthsRare Disease Truths.

I didn’t make it to a YMCA location...outside was decent tho....I walked 1.2 miles

I tried helping a neighbor...bless her heart a yellow jacket Rare Disease Truths flew inside her apartment. Rare Disease Truths She had a can of spray, opened the Rare Disease Truths front door and it would not leave...we also have vaulted ceilings. I had a neighbor help me before with the same situation. I’ll definitely be making a trip to get spray and another broom Rare Disease Truths. I broke my broom Rare Disease Truths killing a spider Rare Disease Truths Lol Rare Disease Truths

I came across a few Spoonie Rare Disease Truthsrunning Rare Disease Truths groups on Facebook which is very helpful.

The month of May has several awareness causes.

Sunday- I wrote my monthly budget out, paid bills, updated my calendar and to-do-list.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 05-31-2021, 07:56 AM   #10
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

I actually believe I might be in the same boat as another person in our Xolair group. I believe Xolair injections might be making my Chronic Idiopathic Urticaria worse. I do write Rare Disease Truths down...journal my flare ups.

I’m happy for folx that Xolair has been a game changer for Chronic Idiopathic Urticaria however it is misinformation to make posts that GUARANTEE results just because particular individuals are having success. The manufacturer does not GUARANTEE successful results. No pharmaceutical manufacturer can GUARANTEE successful results.

Everyone does *not have success with Xolair for Chronic Idiopathic Urticaria.

After having my second Xolair injections [300 mg] for May 2021. I called my immunologist office answering service. I spoke with a nurse on call and was instructed to go to a local urgent care clinic.

I had to be given higher dosages of steroids [and monitored] to calm down my Chronic Idiopathic Urticaria. Which I started also having Angioedema swells [top and bottom lip + my right thigh]. It’s painful and I’m on bed rest. My right thigh continues to swell with Angioedema.

It’s hard to think Rare Disease Truths positive and hold out hope that these Xolair injections will begin to help when I’ve experienced zero improvement. I’ve continuously been instructed to go to urgent care or a hospital. Which my flare ups always happen in the wee hours of the night.

These medical bills are stressing me out. I’m already making payments but continue to return to urgent care or a hospital as instructed which creates more medical bills. Rare Disease TruthsRare Disease Truths

I’ve applied for medical financial assistance through a local hospital. I’ve been checking my mail waiting on a response. I also have multiple autoimmune diseases [Fibromyalgia, Hashimoto, Asthma, Atopic Dermatitis and Alopecia] and experience a domino effect.
My Fibromyalgia pain has been horrible as well. I treat my Fibromyalgia with medical cannabis, bath bombs, herbal teas, supplements and traditional medicinals. I don’t believe in pain medications [for me].

I’m not seeking any advice. I’d just rather post here because some individuals can relate to being frustrated with chronic illnesses.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 06-13-2021, 04:18 AM   #11
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Rare Disease TruthsNot Many Symptoms Right Now
Rare Disease TruthsA Few Symptoms But They’re Manageable
☔️Recovering From A Few Heavy Symptom Days
Rare Disease TruthsIn A Flare
Rare Disease TruthsSymptoms Feel Unmanageable

Currently: Rare Disease TruthsIn A Flare

It’s been raining again, I’ve been sleeping Rare Disease Truths a lot and getting necessary rest. Both my rare diseases have been flaring up and causing symptoms. I did leave early Saturday morning to check my mail, grab fresh fruits and vegetables.

Hashimoto-I was recently approved for medical financial assistance. I need a Thyroid Uptake Scan and my total portion is $500.00. Yes, $500.00 to check if I have thyroid cancer. I find this corporate greed disgusting. My anxiety will be at ease once I receive the formal letter.

I’ve been doing much better with regularly taking my vitamins, supplements, inhaler and ulcer medication.

Fibromyalgia-I’ve been trying to do a few rows of knitting each day. I miss coloring. When I color, I start having muscle spasms in my hands.

Depression- I’ve been getting a lot of natural sunlight. I don’t stay outside too long because of the humidity.

Grief and Loss- Grief is so weird. One day you think of them and you don’t feel so... affected. You miss them but you’re okay. Another day, you’re minding your business and something minor reminds you of them. Next thing you know, you’re in tears and sad for the rest of the day. Sigh. -Jadoirian [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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 06-24-2021, 10:37 PM   #12
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Yesterday, I received my third monthly Xolair injection. I receive two injections, one in each arm. The medical assistant put a band-aid on after each injection. I failed to go with my intuition and didn’t remove the band-aid and replace with medical tape. I had an allergic reaction to the band-aid. I’m also allergic to latex and coflex band wrap. I spoke with my immunologist office and it will be noted in my chart to never put any band-aids on me.

It’s really odd but my right shoulder is always sore for a few days after receiving the monthly injection. My fingers are crossed that I’ll be back in remission with the Xolair injections.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 07-07-2021, 05:46 PM   #13
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Rare Disease Truths

People with disabilities should have the right to marry without losing their income, benefits, or health insurance.

⭐️ In many countries, including the United States, Canada, and the United Kingdom, people with disabilities are discouraged from getting married or are pushed to divorce in order to get or maintain their income, benefits, and health insurance.

Rare Disease Truths In the United States specifically, it's because benefits such as Supplemental Security Income (SSI) and Medicaid are needs-based and focus on current assets and income. When someone marries someone not in those programs, their partner's assets and income are combined with theirs. It is because of the combined income that many married people with disabilities lose their SSI and Medicaid benefits. For people with disabilities who are already married, many have been forced to divorce and live separately in order to keep benefits that they need to survive.

⭐️ People with disabilities shouldn't be forced to choose between the benefits they need to survive and their partners. Rare Disease Truths
Rare Disease Truths

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 08-25-2021, 07:06 PM   #14
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Rare Disease Truths A few symptoms but I was able to get a few things done today. I’m resting now.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 08-26-2021, 09:59 PM   #15
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Rare Disease Truths

Rare Disease Truths

I had a horrible flare up with two of my rare diseases. I scheduled an emergency appointment with the immunologist on duty.
We discussed Fibromyalgia too. I was concerned my monthly treatments were causing an increase in my Fibromyalgia pain and other symptoms.

I agree to see a dietitian to discuss an anti-inflammatory diet plan. I hate taking a crapload of medication. I agreed to add two new medications and increase the dosage of my monthly injections (Chronic Idiopathic Urticaria) for a period of time.

However I made my rules very clear. No medications that cause certain side effects.

My immunologist, Dr. C., is nice however I do have a good rapport with the other immunologist (Dr. M.) in the practice. She listens and understands why I can’t take sedative antihistamines during the day, why I don’t wanna take medications or treatments that cause hair loss, weight gain, depression or suicidal ideation.

I feel like male nurse practitioners,doctors and specialists don’t get it. Don’t get that mainly women are taking kids (a kid) to school, picking kids up from school, helping with homework, cooking dinner, taking kids to sports activities etc. I don’t get, how they don’t comprehend, patients can’t sleep our lives away.

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
Old 08-27-2021, 11:38 AM   #16
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

Personally, I encounter a lot of ableism. I have set firm boundaries. I will end friendships, communicating with family members that don’t respect my boundaries and say hateful/harmful comments. I’ve changed healthcare providers/specialists. Peace of mind is priceless.


25 Examples of Ableism to Avoid as an Ally to People With Disabilities

Ableism means “discrimination in favor of able-bodied people.”
As of today, I am officially “totally disabled.” My health has been declining before getting diagnosed with a chronic illness in May 2019 and having to stop work.

It has been devastating to grieve my old life, career and hobbies. And ableist remarks (still fairly common!) are like kicking someone when they are down. Since at least one out of five people will become disabled in their lives — and ableism is still largely unaddressed and unknown — if you are the loved one of someone with a disability, you will want to be aware of how to proceed with compassion. Here is a list of 25 examples of ableism so you can be a good friend / medical practitioner / family member and avoid the harm ableism causes.

1) Minimizing another’s struggle for your comfort. We know it is hard when someone has a disability / chronic illness. But imagine how much harder it is for them. Give them space to talk about it.

2) Discriminating against them for speaking about their diagnosis/challenges, or accusing them of just wanting attention or trying to manipulate others. These ideas are completely ridiculous and rooted in acute ableism. This is likely the hardest thing a person has ever gone through. Sharing is a part of well-being; a little bit of compassion goes a long way.

3) Thinking you understand how a condition affects someone without listening to them and researching their condition. Each person has different experiences and each diagnosis has complex symptoms.

4) Comparing chronic/long-term disabilities to temporary/short-term injuries or illnesses. Getting your tonsils out is not the same at the existential identity crisis or the physical and emotional challenges of facing a potentially lifelong disability.

5) Saying they should just “get over it” or “accept it” without recognizing the immense grief that can come with chronic illness / disability. Again, it is likely the hardest thing a person has gone through and there are a lot of big feelings that need to be expressed. Let the person know you are there for them. “Tough love” attitudes towards someone with a disability are not love at all.

6) Assuming a person is faking an invisible disability. Just. Don’t. No one would choose this. If anything, we are actually faking being well!

7) Avoiding interacting with someone because their disability/illness makes you uncomfortable. Try “I know this must be so hard for you” and ask how they would best like to be supported. Offering specific things such as “I can bring soup” or “I am stopping at the pharmacy, do you need anything?” can help you feel supportive in a concrete way.

8) Presuming disabled people can’t speak for themselves. Always speak directly to the person rather than their caregiver.

9) Thinking they should be able to do everything for themselves rather than offering or validating community care. This individualistic culture harms us all — imagine how much it harms those who aren’t able to fully function physically/mentally. We could often use a hand with many things. Don’t shame someone for not being able to do it all.

10) Thinking those with disabilities are a leech on the system. Everyone deserves to live. Enough said.

11) Inferring someone is lazy, unmotivated or not trying hard enough to get better. Saying they just need to “buck up” or try ____ treatment, eat ____ food or do more yoga. The sheer amount of practitioners many of us see, treatments we try, research we do and money we spend on trying to get better would make your head spin. We are some of the strongest people there are.

12) Often physical disabilities cause mental health issues like anxiety and depression, not the other way around. It is hard to wake up every day knowing we are not able to live the life we would choose, or even take care of basic household tasks. While there has been immense historical stigma, depression is not the root of chronic illness.

13) Not allowing space for the people with disabilities in your life to discuss their disability issues, while expecting them to listen to your problems. Relationships don’t work that way — they are about give and take. Healthy relationships are reciprocal — if not, they are exploitative and draining.

14) Ignoring the disability/pretending it doesn’t exist. This is an attempt to erase a person’s marginalization and challenges. It is also emotionally neglectful. This doesn’t mean discussing it every time you see someone but ask them how they are with things regularly.

15) Concluding the person with a disability is doing something wrong if other people have recovered and they haven’t. Recovery isn’t an option for many people. They may already feel embarrassed, ashamed or scared about this. This is otherwise known as victim-blaming.

16) Placing less value on people with disabilities than people who can work or do certain activities. We are valuable as is. Capitalist production does not translate into loveability. We have many types of creative gifts and often more compassion than the average Joelene.

17) Blaming a person or their lifestyle for “creating” their disability. This is more victim blaming. It doesn’t matter if you are a “spiritual master.” Don’t. It is not our fault.

18) Thinking the disability is “not that bad” or is non-existent because you can’t see it with your eyes. Invisible disabilities are extremely common. The fact that you cannot see them does not make them less debilitating.

19) Telling someone to “change their mindset” or to “not identify with their disability.” Doing so does not magically make our disability disappear and leaves us feeling shamed and unseen. For many of us, disability is part of our identity — it affects everything about our day. Yes, hope is helpful, but it does not negate the grief they might feel or the validity of their experience / condition.

20) Thinking a person with a disability is overreacting or being high maintenance for stating their needs. It is often really hard to ask for help or state our needs. If you shame someone for doing so, they may never open up to you again. Put yourself in their shoes.

21) Assuming that because someone is smiling / laughing / out that they must be better, or things are easy, or they are faking their disability. Smiling and laughing feel good. It does not mean we aren’t struggling. Most of us attempt to fake being well or try to ignore our symptoms. And many of us have some days that are much better than others.

22) Expecting that if a person with a disability is up for something one day, they should be up for it another day. See above.

23) Consistently making group plans that the disabled person is unable to participate in. You like hiking? We understand and may have loved it ourselves. But we need social contact too. Check in and see what types of activities work for a get together once in a while.

24) No longer inviting someone out because their disability has caused them to cancel a lot of plans previously. Trust me, we hate this way more than you do. Keep inviting us. Maybe visit us at home.

25) Believing ableism is less toxic and harmful than racism, sexism, classism etc. It’s not.

How to Avoid Ableism and Be an Ally to People With Disabilities | 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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 09-19-2021, 12:10 AM   #17
Cocosurviving
Elder
 
Cocosurviving's Avatar
Cocosurviving May 5th ✨National Day of Awareness for Missing Murdered Indigenous Womxn, Girls and 2S
 
Member Since: Sep 2012
Location: Muscogee (Creek) Nation Reservation
Posts: 5,649
8 yr Member
312 hugs
given
PC PoohBah!
Default Re: Rare Disease Truths

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
Cocosurviving is offline   Reply With QuoteReply With Quote
Hugs from:
"Thanks for this!" says:
Old 10-20-2021, 01:02 AM   #18
SprinkL3
Member
 
SprinkL3's Avatar
SprinkL3 has no updates.
 
Member Since: Oct 2021
Location: United States
Posts: 317 (SuperPoster!)
1,477 hugs
given
Default Re: Rare Disease Truths

I have echoed many things you have stated, though I don't have rare disorders per se. I have dissociative identity disorder (not really rare, but very controversial) as well as chronic fatigue syndrome/myalgic encephalomyelitis (ME = the last term I have difficulty spelling, so I need to copy and paste it every time), a nodule on my thyroid that no one will check, recurring abnormal pap smears, some uterine disorder, two diseases I'd rather not mention, PTSD, insomnia, possible other things that haven't been diagnosed yet, etc. They're not as rare as what you're going through, but I have been stigmatized for them and for my disability.

I agree with many points you make about ableism and disability rights. I agree, disabled persons shouldn't lose their benefits because of marital status. I also agree that ableism has become a major issue in this world, especially during this pandemic. It's sad how rare disorders and some not-so-common disorders cause us to have to fight for our patient rights and proper treatment. I wished there were more advocates in the world, and I wished the world were a safer, more inclusive place.

I get frustrated.

Like you, I keep a list of my symptoms or whatever it is I'm doing or feeling or thinking or accomplishing - whether it be here, on paper, or on one of my Excel spreadsheets. I may not know you well, and perhaps we may have different views and beliefs, but I do understand at least some of what you shared. Thank you for sharing! I've not yet heard those words echoed in such a long time, save the echoes within my own mind.

I'm sorry you are struggling with so much. I hope you are doing okay. I hope your partner is doing okay, too.
__________________
SprinkL3
SprinkL3 is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 09:16 PM.

Powered by vBulletin® — Copyright © 2000 - 2021, Jelsoft Enterprises Ltd.



 

My Support Forums

My Support Forums is the online community that was originally begun on Psych Central in 2001. It now runs as an independent community, overseen by a group of volunteers & Dr. John Grohol.

 

Helplines and Lifelines

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

Always consult your doctor or mental health professional before trying anything you read here.