RE: Living With Chronic Pain And Navigating Every Day Life ...

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.

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.

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

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

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Sunday got up early, took a shower and scheduled an appointment to have a massage.

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

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

“I absolutely am not trying to fit in.”

I put my window down and complimented the shirt.

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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

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“10 Ways to Relax That Require 10 Minutes or Less


Hey

Ron here...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ronald Smith
Rare Disease Story Shirt”

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Why Medical Gaslighting Isn’t Always Easy to Spot.

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

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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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I DONATED PLATELETS IN SEPTEMBER. I RECEIVED A LETTER FROM THE RED CROSS ABT MY WBC (WHITE BLOOD CELLS).

WHITE BLOOD CELLS ARE AN IMPORTANT PART OF YOUR IMMUNE SYSTEM, HELPING YOUR BODY TO FIGHT OFF DISEASES AND INFECTIONS. IF YOU HAVE TOO FEW WHITE BLOOD CELLS, YOU HAVE A CONDITION KNOWN AS LEUKOPENIA.

I’LL BE GOING TO A HEMATOLOGIST SPECIALIST TO TEST FOR “AUTOIMMUNE LEUKOPENIA.”

I SPOKE TO THE NURSELINE THROUGH MY HEALTH INSURANCE AND IT DID HELP.

A FEW MONTHS AGO, I WAS HAPPY ABT NOT HAVING ENDOMETRIOSIS.

STAYING BUSY HELPS ME NOT WORRY. I’M LOOKING FORWARD TO VOLUNTEERING WITH A LOCAL UNHOUSED OUTREACH PROGRAM THIS MONTH.

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TRIGGER WARNING ⛔️ (long post)
Crimes Against Individuals with Disabilities
•I Recently Spoke with an Elder Family Member Abt This Topic. It’s Still Weighing Heavy on My Mind.

Crimes of Opportunity
•Some People will “Befriend” Folx with Disabilities, Seeking to Gather Info with the Sole Intent to Rob a Person with Disabilities.

•These People Ask If You Receive SSI/SSDI.
•Ask Your Disabilities and What Medications You Take.
•Ask If You Use a Bank or SSA Direct Express Card.
•Suddenly Take an Interest in YOU.

TRIGGER WARNING ⛔️
•My Auntie’s Best Friend from Childhood, an Elder was Robbed and Murdered along with her Son.

•They Left a Check Cashing Place, was Followed Home by a Complete Stranger. Who Robbed Them, Beat Them and Attempting to Cover Up the Crime by Setting Their Residence on Fire.

•When I Experience Brain Fog from Medications, I DO NOT Divulge the TRUTH to Most People I Interact with. I DO NOT Care What People ASSUME When I Experience Brain Fog.

•I Blame Insomnia/Sleep Deprivation, Out of Concern Someone will Target Me with the Intent to Rob a Disabled Person.

•Befriending is NOT the Only Method. Acquaintances, Family Members, Friends, New Romantic Interest, Can Prey on Individuals with Disabilities.

•While Visiting My Grandma, a Local Pastor and Family Friend, Asked What I Received Disability for. I Told Him it’s Private. I Learned He’s a Pain Med Addict. I Told My Mama and Grandma to use Caution.

•One of My Sisters was “Love Bombed”, a New Romantic Interest Came Over to “Netflix and Chill.” She Fell Asleep, Woke Up, He was Gone and so was Her Prescription Meds.

•My auntie, who transitioned December 20th, 2020, was born with a rare disease called “Arthrogryposis Multiplex Congenita.” She was in a wheelchair her entire life. My auntie was robbed while in her WHEELCHAIR.

•Individuals with Arthrogryposis Multiplex Congenita require home healthcare for LIFE. This rare disease is NOT a DEVELOPMENT disability. It DOES impact joints, joint/bone development, range of motion and susceptibility to bone fractures.

•If You have One Chronic Illness, important to remember Others have multiple Chronic Illnesses. Although this Might Not Pertain to You, It Does Pertain to Others.

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Healthcare Open Enrollment Got Me Like

Accepting Applications for Quality Private Health Insurance w/Excellent Coverage in Exchange for MONTHLY Spooning, Home Cooked Meals & a SEXLESS Marriage. #OpenEnrollment #SpoonieLife #Memes #Healthcare #ChronicIllnesses

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•I Create Tasks List and Include Deadlines.

•I Request Any Reasonable Health Accommodations.

•I Take a Break When I’m Overwhelmed.

•Taking a Break For Me Includes: Watching Funny Movies, Listening to Music, I Avoid Any Serious Topics Including Politics, I Take a Walk, Use Aromatherapy, Polish My Nails, Color, Knit etc.

•After Re-Grouping/Hitting Reset•

•I Remove Any Tasks That Can Be Canceled.

•My Tasks List is Weekly vs Daily with the Exception of Deadlines.

•My Planner System Helps.

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•EFT stands for Emotional Freedom Techniques, and users say that this simple technique helps them feel better quickly. EFT tapping has roots in the 1970s when several doctors began stimulating acupressure points to help their patients deal with stress, fear, and phobias.

•I practice a form of meditation and listen to podcasts.

•I don’t participate in therapy but I do repost quotes from therapists or that mention therapy.
I prefer peer centered support groups vs therapy.

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Topic: Peer Ran Mastermind (Accountability) Groups.

Podcast: Online Marketing Made Easy with Amy Porterfield. Episode #414
“How To DIY Your Own Mastermind

I Came Across A Podcast Episode that Really Resonated with Me.

My Takeaways
It’s Counterproductive Seeking Opinions and Feedback from Individuals or Groups that Do Not Work in the Same line of Work, have the Exact Same Illnesses You Have or other Struggles.

•It Does Make a Difference Obtaining Feedback from Individuals Who Can Relate and Have Lived Experiences vs Just Giving Their Opinions.

•One or Two People Should be the Main Group Contacts.

•Set Group Rules.

•Discuss the Highs and Lows Since Last Meeting.

•Meet Virtually.

•Decide How Often Meeting Will Be.

•Smaller Groups are Best.

•Don’t Make the Group too Big, 4-6 People in a Group is Good, too Many People Makes the Group is Counterproductive and Hard to Manage.

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While watching a vlogger (entrepreneur) discuss planning and starting new projects.

She discussed her process for scheduling tours, marketing etc.

What I liked is her and other writers automatically plan for 7-9 sick days per quarter.

Everyone gets sick and employers need to acknowledge we are all human.

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It Helps for Me to Have Cleaning Hacks When I’m Symptomatic or Dealing with Depression.

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5 Ways You Might Still Get a Surprise Medical Bill
Even with the No Surprises Act and its consumer protections now in effect, you can still get an unexpected bill. Here's what to do.

5 Ways You Might Still Get a Surprise Medical Bill - Consumer Reports


I knew this was nothing to get excited about. It’s created by politicians who absolutely can NOT relate to everyday people or individuals with disabilities.

Politicians who work for the government and don’t worry about medical insurance and medical bills.

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