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Old Mar 19, 2021 at 05:53 AM
  #21
 
Iím 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. Autoimmune Diseases and Rare Diseases Check-In Me: ďNo, itís called Chronic Idiopathic Urticaria. This just happens to be the worst flare up Iíve ever had.Ē

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 Autoimmune Diseases and 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. Autoimmune Diseases and Rare Diseases Check-In

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old May 03, 2021 at 12:16 AM
  #22
 
ďPeople 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.Ē

ďOne 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.Ē

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

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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 May 03, 2021 at 12:23 AM
  #23
 
Saturday was nice...very busy.

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

I spoke with family and friends in Tennessee. Visited Autoimmune Diseases and Rare Diseases Check-InAutoimmune Diseases and Rare Diseases Check-Inmy dad and his wife...plus my momma and stepdadAutoimmune Diseases and Rare Diseases Check-InAutoimmune Diseases and Rare Diseases Check-In.

I didnít 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 Autoimmune Diseases and Rare Diseases Check-In flew inside her apartment. Autoimmune Diseases and Rare Diseases Check-In She had a can of spray, opened the Autoimmune Diseases and Rare Diseases Check-In front door and it would not leave...we also have vaulted ceilings. I had a neighbor help me before with the same situation. Iíll definitely be making a trip to get spray and another broom Autoimmune Diseases and Rare Diseases Check-In. I broke my broom Autoimmune Diseases and Rare Diseases Check-In killing a spider Autoimmune Diseases and Rare Diseases Check-In Lol Autoimmune Diseases and Rare Diseases Check-In

I came across a few Spoonie Autoimmune Diseases and Rare Diseases Check-Inrunning Autoimmune Diseases and Rare Diseases Check-In 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.

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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 May 13, 2021 at 06:11 PM
  #24
 
Hey Coco, I think this thread is a great idea.

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Old May 24, 2021 at 02:47 AM
  #25
 
This thread helps me express what I deal with as an individual with multiple chronic illnesses. Friday, May 21st 2021, I received my second two monthly Xolair injections. Xolair injections are used to treat Chronic Idiopathic Urticaria (chronic hives). Which are *not the same as hives from allergic reactions.

I have my fingers crossed Autoimmune Diseases and Rare Diseases Check-In that these monthly injections will help reduce my flare ups. So far I have not experienced the same symptoms as I did last month [April] after my first monthly injection. Iím glad. Itís supposed to rain the whole week. Iím working hard at taking my vitamins and supplements each day. It rained all last week Autoimmune Diseases and Rare Diseases Check-In.

I picked up my asthma inhaler. Iím on a new medication to prevent stomach ulcers from returning. My immunologist recommended increasing my selenium supplement which is used to help with my Hashimoto.

I started having muscle spasms again in my hands. Iíve been soaking and using bath Autoimmune Diseases and Rare Diseases Check-In bombs.

Iíve been using a lot of selfcare, resting and picking back up on hobbies to keep my depression away.

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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 May 31, 2021 at 07:56 AM
  #26
 
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 Autoimmune Diseases and Rare Diseases Check-In down...journal my flare ups.

Iím 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]. Itís painful and Iím on bed rest. My right thigh continues to swell with Angioedema.

Itís hard to think Autoimmune Diseases and Rare Diseases Check-In positive and hold out hope that these Xolair injections will begin to help when Iíve experienced zero improvement. Iíve 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. Iím already making payments but continue to return to urgent care or a hospital as instructed which creates more medical bills. Autoimmune Diseases and Rare Diseases Check-InAutoimmune Diseases and Rare Diseases Check-In

Iíve applied for medical financial assistance through a local hospital. Iíve 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 donít believe in pain medications [for me].

Iím not seeking any advice. Iíd just rather post here because some individuals can relate to being frustrated with chronic illnesses.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old Jun 13, 2021 at 02:20 AM
  #27
 
Autoimmune Diseases and Rare Diseases Check-InNot Many Symptoms Right Now
Autoimmune Diseases and Rare Diseases Check-InA Few Symptoms But Theyíre Manageable
☔️Recovering From A Few Heavy Symptom Days
Autoimmune Diseases and Rare Diseases Check-InIn A Flare
Autoimmune Diseases and Rare Diseases Check-InSymptoms Feel Unmanageable

Currently: Autoimmune Diseases and Rare Diseases Check-InIn A Flare

Itís been raining again, Iíve been sleeping Autoimmune Diseases and Rare Diseases Check-In 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.

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

Fibromyalgia-Iíve 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- Iíve been getting a lot of natural sunlight. I donít stay outside too long because of the humidity.

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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 Jul 07, 2021 at 05:44 PM
  #28
 
Autoimmune Diseases and Rare Diseases Check-In

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.

Autoimmune Diseases and Rare Diseases Check-In 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. Autoimmune Diseases and Rare Diseases Check-In
Autoimmune Diseases and Rare Diseases Check-In

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old Jul 08, 2021 at 02:29 AM
  #29
 
Autoimmune Diseases and 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 edibleÖ.slept. I cooked in my crockpot. I really freaking like crockpots with multiple settings Autoimmune Diseases and Rare Diseases Check-In. I ate some southern cabbage, cleaned Autoimmune Diseases and Rare Diseases Check-In my kitchen and took a shower.
My teenager received a lot of hospital treatments and is in summer school. Iím going to take another half an edible and get a few hours sleep Autoimmune Diseases and Rare Diseases Check-In.

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old Aug 26, 2021 at 10:01 PM
  #30
 
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 canít take sedative antihistamines during the day, why I donít wanna take medications or treatments that cause hair loss, weight gain, depression or suicidal ideation.

I feel like male nurse practitioners,doctors and specialists donít get it. Donít 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 donít get, how they donít comprehend, patients canít sleep our lives away.

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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 Aug 27, 2021 at 11:38 AM
  #31
 
Personally, I encounter a lot of ableism. I have set firm boundaries. I will end friendships, communicating with family members that donít respect my boundaries and say hateful/harmful comments. Iíve changed healthcare providers/specialists. Peace of mind is priceless.


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

Ableism means ďdiscrimination in favor of able-bodied people.Ē
As of today, I am officially ďtotally disabled.Ē 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 ó and ableism is still largely unaddressed and unknown ó 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 anotherís 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 ďget over itĒ or ďaccept itĒ 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. ďTough loveĒ attitudes towards someone with a disability are not love at all.

6) Assuming a person is faking an invisible disability. Just. Donít. 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 ďI know this must be so hard for youĒ and ask how they would best like to be supported. Offering specific things such as ďI can bring soupĒ or ďI am stopping at the pharmacy, do you need anything?Ē can help you feel supportive in a concrete way.

8) Presuming disabled people canít 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 ó imagine how much it harms those who arenít able to fully function physically/mentally. We could often use a hand with many things. Donít 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 ďbuck upĒ 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 donít work that way ó they are about give and take. Healthy relationships are reciprocal ó if not, they are exploitative and draining.

14) Ignoring the disability/pretending it doesnít exist. This is an attempt to erase a personís marginalization and challenges. It is also emotionally neglectful. This doesnít 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 havenít. Recovery isnít 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 ďcreatingĒ their disability. This is more victim blaming. It doesnít matter if you are a ďspiritual master.Ē Donít. It is not our fault.

18) Thinking the disability is ďnot that badĒ or is non-existent because you canít 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 ďchange their mindsetĒ or to ďnot identify with their disability.Ē 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 ó 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 arenít 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. Itís not.

How to Avoid Ableism and Be an Ally to People With Disabilities | 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
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Old Aug 29, 2021 at 11:04 AM
  #32
 
ď10 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 youíll 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. Itís 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. Theyíre 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. Donít have a pet? Borrow a friendís 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. Youíll 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 youíre 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 oneís mood. Think of a few songs that will put you in a mood youíd rather feel. Listen away! If you donít 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 youíll 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 thatís bothering you. Get it out of your system and down on paper. By externalizing it, youíll often find that things arenít quite as bad as you thought.

If youíre regularly feeling stressed, itís important to do something about it. Not only is it miserable to feel stressed all the time, but itís 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. Donít allow 10 minutes to go to waste. Use them to relax!

Ronald Smith
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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..
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Old Aug 30, 2021 at 12:17 PM
  #33
 
Why Medical Gaslighting Isnít Always Easy to Spot.

Why Medical Gaslighting Isn’t Always Easy to Spot | The Mighty

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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 Sep 19, 2021 at 12:08 AM
  #34
 
Being on Disability Does Not Mean I'm 'Lazy' or 'Lucky'

ďI have been told the following quotes recently after people finding out Iím on disability:
1. ďYouíre so lazy, you donít do anything all day.Ē
2. ďYouíre so lucky to not have to work.Ē
3. ďMan, I wish I had your problem.Ē
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 canít 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 wouldnít wish it on my worst enemy.

4. I miss working and socializing. This is not fun. I miss being a ďproductiveĒ 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 itís 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 Ė 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.Ē

Being on Disability Does Not Mean I’m ‘Lazy’ or ‘Lucky’ | 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
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Old Oct 23, 2021 at 08:20 PM
  #35
 
My legs are being angry and painful today. I'm also thankful this thread even exists. I have Grave's Disease. Did the radioactive iodine but I still have the disease. And it still causes me problems. I was diagnosed at the end of 2019 and spent most of 2020 recovering. Still learning how to live with an autoimmune disease, not having a thyroid and it causes complications in my life. But I'm thankful to be alive.
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Old Oct 23, 2021 at 09:50 PM
  #36
 
I have many undiagnosed conditions, a strange uterine disorder I cannot remember (but it's in my charts somewhere), frequent abnormal pap smears that require colposcopies (I still haven't gotten mine for 2 years now, and I fear having cancer), and dealing with ongoing chronic fatigue syndrome, a nodule on my thyroid (yet no diagnosable thyroid condition, despite me gaining tons of weight in a short period of time), etc.

My check-in: I'm finally gaining some energy back from post-exertional malaise (PEM, which is from CFS/ME). I'm doing some house chores, but I'm never up to my full capacity for "normal daily functioning" - whatever "normal" is these days, anyway.

My right leg hurts from sitting too much, but I don't have the energy to exercise or walk at the moment.

This pandemic has restricted me so much and caused so much ableism, ageism, and racism - all of which I've been struggling with in increasing amounts during this pandemic - that I feel defeated and vulnerable to trauma all the time.

My PTSD and dissociation have worsened, but thankfully I have a good T to help me twice per week.

I could be better, do better, but all I can do is the best I can do in the moment, despite not being able to do better. -If that makes any sense at all.

I'm grateful for having all of my limbs though.
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Old Oct 27, 2021 at 11:44 PM
  #37
 
Quote:
Originally Posted by SprinkL3 View Post
I have many undiagnosed conditions, a strange uterine disorder I cannot remember (but it's in my charts somewhere), frequent abnormal pap smears that require colposcopies (I still haven't gotten mine for 2 years now, and I fear having cancer), and dealing with ongoing chronic fatigue syndrome, a nodule on my thyroid (yet no diagnosable thyroid condition, despite me gaining tons of weight in a short period of time), etc.

My check-in: I'm finally gaining some energy back from post-exertional malaise (PEM, which is from CFS/ME). I'm doing some house chores, but I'm never up to my full capacity for "normal daily functioning" - whatever "normal" is these days, anyway.

My right leg hurts from sitting too much, but I don't have the energy to exercise or walk at the moment.

This pandemic has restricted me so much and caused so much ableism, ageism, and racism - all of which I've been struggling with in increasing amounts during this pandemic - that I feel defeated and vulnerable to trauma all the time.

My PTSD and dissociation have worsened, but thankfully I have a good T to help me twice per week.

I could be better, do better, but all I can do is the best I can do in the moment, despite not being able to do better. -If that makes any sense at all.

I'm grateful for having all of my limbs though.
Sending you a lot of love, this sounds like SO much to deal with. If you fear for cancer though, please get it checked out. You have a good chance if it's caught early.

Also. Keep an eye on your thyroid. They noticed some years ago that I had extra white blood cells in mine but didn't diagnose it as anything. I had also gained a lot of weight. And later one I did develop a thyroid condition. So just keep an eye on it. Has your doctor mentioned you might be hypothyroid? That does cause a lot of weight gain.

I'm not doing well this week. I see my doctor tomorrow to talk to her about these symptoms I am experiencing. I haven't done research on what it might be, because I don't want to freak myself out. I somewhat suspect gallbladder stones, but I'm not sure if it would cause the other symptoms...like an issue with my heart. I feel like something is wrong with my body, it isn't just Grave's. I feel like I'm getting more and more sick as time goes on. I thought it was a stomach condition I have but now I'm not so sure it's that.
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Old Oct 28, 2021 at 01:37 AM
  #38
 
Quote:
Originally Posted by cinnamonsun View Post
Sending you a lot of love, this sounds like SO much to deal with. If you fear for cancer though, please get it checked out. You have a good chance if it's caught early.

Also. Keep an eye on your thyroid. They noticed some years ago that I had extra white blood cells in mine but didn't diagnose it as anything. I had also gained a lot of weight. And later one I did develop a thyroid condition. So just keep an eye on it. Has your doctor mentioned you might be hypothyroid? That does cause a lot of weight gain.

I'm not doing well this week. I see my doctor tomorrow to talk to her about these symptoms I am experiencing. I haven't done research on what it might be, because I don't want to freak myself out. I somewhat suspect gallbladder stones, but I'm not sure if it would cause the other symptoms...like an issue with my heart. I feel like something is wrong with my body, it isn't just Grave's. I feel like I'm getting more and more sick as time goes on. I thought it was a stomach condition I have but now I'm not so sure it's that.
Thank you for your kind reply!

I spoke with my primary care doc yesterday afternoon, and she said that my thyroid nodule was so small (3mm) that I probably don't need to get checked. She is just going by the labs, which I'll get done on Friday. But the labs often are a false negative when it comes to thyroid conditions. And, it was the advice of the last VA (which covers more than my current VA) to get it checked via ultrasound a year later, but then the pandemic hit. Now that it's two years later, I asked for it to get checked, and there's this difference of opinion from my primary care, who said she has to look into this. What's there to look into; they recommended me getting checked, and now she said it's too small to get checked. The whole point of getting it checked is to make sure it hadn't grown bigger. When I asked her if it will go away on its own, she said no. I told her that my neck has been constantly swollen since that time, and she didn't respond to any of that.

It also bothered me that I told her about my weight gain and the pain in my right leg, with my concerns about deep vein thrombosis. I said the pain was in my lower thigh and upper calf, sort of behind the knee area. She said she could schedule a future appointment for the knee, but it's not my knee. It's my concern about DVT. My cholesterol levels and other blood tests from 2020 revealed abnormalities - all risks for stroke or heart attack. It's like I've had nothing but trouble ever since my "unknown respiratory condition" in March 2020, which tested negative at the time for Covid. It bothers me that the VA isn't taking those things seriously here, but in a blue state - a different state than where I'm at, they did cover those things.

There are so many strange things going on with politics and healthcare and public safety and medical doctors these days - because you have this polarization within the ranks of hospitals and healthcare companies - that which undermines the needs of minorities, women, mentally ill persons, and other stigmatized patients. If you call them on it, they treat you worse. You have no rights; you are shunned, ignored, labeled, psychopathologized, whatever.

It's scary when you can't even trust your own medical team.

But I'm trying to trust them. I'm really trying to trust at least the labs that will get done - hopefully without incident, etc.

I do trust the vaccines, so long as they have security measures in place to prevent abuse and purposeful mishaps - criminal or otherwise unlawful.

Ergo, I don't trust anyone, but I have no choice but to trust some things and some people in order to survive. It sucks.
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Old Oct 31, 2021 at 10:00 AM
  #39
 
Bad Day Check List

1). Have you been eating healthy?

What have you been feeding yourself lately?

Are you hungry right now?

Could you make yourself some food?

2). Are you hydrated?
Do you need some water or juice?

3). Have you been sleeping enough lately?
Do you need to lay down right now and take a nap?

4). Do you need to shower?
Would a change of clothes help?

5). Are your surroundings neat and tidy?
Could you tidy up your room a bit?

6). Have you been in nature recently?
Have you gotten some sunshine?
Could you take some vitamin D right now?

7). Have you moved your body?
Do you need to go for a walk?
Or go for a run?
Would working out help?

8). Have you spoken to someone who can help you work out your thoughts and feelings?
Is there someone in your life that you can open up to and be vulnerable with?

9). Do you need peace and quiet?
Would meditation help?
Or would listening to music help?

10). Do you need to cry?
By Claudia Kai

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#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old Oct 31, 2021 at 10:38 AM
  #40
 
Thank you, Cocosurviving, for creating this list.

I've answered your questionnaire with the following:

1). Have you been eating healthy? Somewhat.
What have you been feeding yourself lately? All the food groups.
Are you hungry right now? I can't feel hunger that well, so I don't know.
Could you make yourself some food? I don't have energy right now, but maybe later. I also received a message from my doc regarding my labs taken on the 29th, and she said that I have high blood sugar levels (but not high enough yet to be prediabetic). She also said that I should cut down on my sugars and carbs. Additionally, I had an abnormal reading on one of my thyroid tests, so she wants me to come in for additional labs for that. It'll be a while before I return for labs - maybe two months or more. So, in the meantime, I'll do what I can to remove as much sugar and carbs from my diet.

2). Are you hydrated? Yes, but I get dehydrated easily due to very low humidity.
Do you need some water or juice? I've been drinking Diet Green Tea with Citrus, which helps me to get hydrated.

3). Have you been sleeping enough lately? Not really. I struggle with insomnia (which is related to my PTSD, my dissociation, my chronic fatigue syndrome, and more)
Do you need to lay down right now and take a nap? YES! I am just about to take a nap - after I finish this posting.

4). Do you need to shower? I've needed a shower since yesterday, but I'm too fatigued. I'm giving myself time to relax another day or two before I shower (and clean my bedding).
Would a change of clothes help? I will probably change my clothes later on. I need a nap first.

5). Are your surroundings neat and tidy? No. I have CFS/ME, and I just had the Moderna #3 jab, so I'm too fatigued to clean. I organized my laundry, so that's all set and ready to go. My trash is always in the trash bin. But my dishes need to get done. I just can't do any of that right now. It takes me about 4 days to recover after my vaccines and having a long outing (I also walked about two miles during the day I got my vaccines, so that was a lot from being in a half-bedridden state).
Could you tidy up your room a bit? No energy, but it's pretty much tidied. Ideally, I'd like to deep clean my entire apartment, but that is impossible in one setting. I always have to do projects in tiny steps spanning months (which would take an able-bodied person only a week or less to do).

6). Have you been in nature recently? Yes, on the 29th.
Have you gotten some sunshine? Not really. The only day I went out in over 8-9 months was on the 29th, to get my vaccines. I'm also very low on Vitamin D, according to my doctor's message regarding my labs on the 29th.
Could you take some vitamin D right now? Shoot, I forgot. And my doc messaged me to take double the dose. I will take that once I get finished with this questionnaire.

7). Have you moved your body? On the 29th. I have CFS/ME, so I wasn't able to pace myself on the 29th, the day when I needed to walk to the VA to get my labs and then walk again to the area on the VA campus to get my flu shot. My new friend, whom I barely met in person that day (but knew online), picked me up to take me to the clinic to get my Moderna #3 jab. I spent about 5 hours outside my home that day - double-masked and double-gloved. I was a nervous wreck. I did a lot of movement - more than my CFS/ME called for, so now I'm experiencing PEM (post-exertional malaise). I cannot move much. I have to take it easy so that I don't worsen my CFS/ME to the point of being bedbound. I'm housebound and half-bedbound on any average day. I can't move like normal people can.
Do you need to go for a walk? I can't, due to CFS/ME. I need rest.
Or go for a run? I can't. I'm disabled. I also have CFS/ME.
Would working out help? I can't. I'm disabled. I also have CFS/ME.

8). Have you spoken to someone who can help you work out your thoughts and feelings? I see a therapist twice a week online. She's very helpful.
Is there someone in your life that you can open up to and be vulnerable with? Only my therapist. There's no one else.

9). Do you need peace and quiet? Yes. I sometimes get this within the confines of my apartment. But I live downtown, so it tends to get noisy.
Would meditation help? No! For certain dissociative disorders, like mine, my pdoc and mental health treatment teams at the VA have noted that it is often difficult for dissociators to meditate, and it can even make their conditions worse. Like CFS/ME, certain disabilities and chronic conditions require alternative treatments. Meditation is one of those treatments that don't work for some disorders, like my particular dissociative disorder. This isn't to say that other people with dissociative disorders can't benefit from it, but I'm one of the many who truly cannot do meditation or mindfulness courses. In fact, the treatment teams out here - both civilian and veteran - prescreen for courses on deep breathing and meditation; if you have a dissociative disorder or other disorders on their list, they need to prescreen you to see if that group will benefit you. It didn't. Even when I tried it one-on-one, I got triggered. That was part of their prescreening.
Or would listening to music help? I do have a music therapist who treats veterans and first responders. She's really good at what she does, and she understands CFS/ME, PTSD, and DID/dissociation. She sees me for free because I'm a veteran. She's NOT connected to the VA though. She's part of another nonprofit, which is in the U.S. and in a different state. She offers online sessions via Zoom. She has created themed playlists for me, some of which I create with my own favorite songs, and some that she has created beforehand. Sometimes I listen to music to help me, but lately, I haven't been able to. I used to see music as a social thing, and as a way to give me energy before I start my day. For example, I used to play music when I showered and groomed - right before I left for an outing or for school. I've deteriorated and had worsening conditions since 2018, so my music days declined. I'm barely trying to get my love for music back, since I am not used to using it for relaxation, so it doesn't work before bedtime. However, it does help when I need to deal with house chores. But it doesn't always help with even that. I have to monitor what works and when, based on all of my conditions.

10). Do you need to cry? Yes, but I don't feel comfortable crying alone. My internal parts cry inside. But we try to pace and contain, meaning, we wait until the next time we speak with our therapist. We feel more comfortable crying in the presence of our therapist.
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