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

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.

Sent from my iPhone using Tapatalk

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

“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”

Sent from my iPhone using Tapatalk

Why Medical Gaslighting Isn’t Always Easy to Spot.

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

Sent from my iPhone using Tapatalk

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

Sent from my iPhone using Tapatalk

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.

Sent from my iPhone using Tapatalk

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.

Sent from my iPhone using Tapatalk

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

Sent from my iPhone using Tapatalk

1 of 2

•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.

Sent from my iPhone using Tapatalk

2 of 2

•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.

Sent from my iPhone using Tapatalk

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.

Sent from my iPhone using Tapatalk

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.

Sent from my iPhone using Tapatalk

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

Sent from my iPad using Tapatalk

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.

Sent from my iPhone using Tapatalk

Sent from my iPhone using Tapatalk

I’m not sure if this thread has been closed due to inactivity.

I have multiple disabilities and receive SSDI. I plan to begin working part-time (ticket-to-work), while attending college likely full-time.

Sent from my iPhone using Tapatalk

Last week, I signed up for Ticket-to-Work through the Social Security Administration. My youngest son turns 18 this month, and my income will change. I need to at least work part-time. I am happy to report that my new HAE injection treatments seem to be working. My HAE attacks have slowed down a lot. I received hospital bills from my last few HAE attacks. Working will help me get them paid off.

I have an assigned vocational case manager. We had a phone conversation this week and discussed resumes. I have been dealing with a lot of anxiety over how to explain the gap in my employment history. My case manager explained that I should list volunteer work and explain during interviews that I took time off to raise a family. My kids are all grown, and I am returning to work. Being disabled is very hard, and I understand that it varies greatly from person to person, depending on the type of disability (disabilities) in addition to the severity.

I have a very close relationship with my youngest son, and that’s mainly because I started receiving SSDI when he was in fourth grade. He’s a senior in high school, and I still take him to school and pick him up. I have been able to attend all his school events, band concerts, band competitions, open house events, and parent-teacher conferences. I participated in school carnivals, bake sales, and helped chaperone events. I dropped him off and picked up him and his classmates.

I found a few articles that discuss returning to the workforce. I hope others find the articles helpful too.

•Stay-at-home-mom valuable transferable skills.

Just a moment...

•Finding a job/reentering the workforce after being a stay-at-home-mom.

Just a moment...

•Finding a job/reentering the workforce after a long absence.

Just a moment...

Sent from my iPad using Tapatalk

“Tips from a rheumatologist for your journey with lupus
As a practicing rheumatologist, I have found that most people with lupus learn, over time, how to cope with the disease.

Family support helps a tremendous amount. A good doctor-patient relationship is also important. Friends can help with coping, as well.

There is often a period of sadness and grief when a person is sick, or immediately after an illness or diagnosis, but people with lupus gradually come to grips with that.

Other tips that may be helpful for your journey with lupus:

Focus on the future and what you need to do to get better.
Don’t look back at what might have caused your illness or ask, “Why me?”
Try to incorporate some level of exercise into your daily schedule.
Educate yourself about lupus and get involved in your own health care.
Stick to reliable sources of information on lupus. When it comes to reading about lupus in the library or on the Internet, be sure you are accessing reliable content. Read up-to-date books and visit trustworthy websites, such as this one, or the National Institutes of Health. Be cautious when reading blogs that relate personal stories, but not necessarily accurate medical information.

Embrace complementary strategies for managing pain. When coping with pain, visual imagery can be helpful; think of yourself watching the ocean or walking over a new layer of snow and try to relax your body. Distraction can help. Read, watch TV or a movie, pursue a hobby—anything that keeps your mind off your symptoms. Look for treatments, not cures.

Make the most of your medical appointments. When you have an appointment, write down what you want to discuss with your health care provider and prioritize it before you go so the most important issues are covered. Consider bringing someone along who can listen so that both of you have a good chance of understanding treatment suggestions. Don’t hesitate to ask questions if you don’t understand the advice. And don’t be afraid to call your physician if you have concerns, new symptoms, or any other problem.

Read: 6 keys to preparing for a medical appointment

If your symptoms worsen, talk to or visit your health care provider before changing your diet, medications, or over-the-counter supplements.

Try to talk about your illness. This is much better than internalizing your angst and worries. A psychologist or other professional counselor can help you talk about the effect the illness has on your career, family, and hopes and dreams.

Above all, realize you will get through this. With the support of your family and health professionals you are comfortable with, and your own commitment to the treatments prescribed, you can regain your life.”

Tips from a rheumatologist for your journey with lupus | Lupus Foundation of America

Sent from my iPad using Tapatalk

“Important questions for your doctor when you're newly diagnosed
When you're newly diagnosed with lupus, you have a lot of questions. We created this guide to make sure you don't miss any critical information during those initial visits with your rheumatologist.

Once you get beyond the initial diagnosis, there are other important subjects to discuss with your care team: medications, lifestyle changes, diet and nutrition, or family planning.”

Important questions for your doctor when you're newly diagnosed | Lupus Foundation of America

“Learning to accept your lupus
A diagnosis of lupus remains with you for the rest of your life. And, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself.

But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.

You may find a source of strength and growth in the knowledge that you have a chronic illness but also a life beyond it. You may realize that living with your illness has made you more understanding of others whose lives are affected by sickness and pain. You may feel a greater appreciation for things you used to take for granted, such as the love and support of family, or hobbies, work, and activities that give you pleasure.

You may also find that your life and your identity are improved and enriched by sharing your experiences with others who have lupus, whether you volunteer with a local lupus support group or chapter, or help people with lupus in your community by listening or lending a hand.

You may even discover that sharing the knowledge of what to expect from a life with lupus, and what can be accomplished despite lupus, can be a powerful lesson for yourself as well as for others.”

Learning to accept your lupus | Lupus Foundation of America

Sent from my iPad using Tapatalk