Cindy Appel

@cindy-appel | contributor
Living in the Midwest, I enjoy life with my husband and our household critters. My career as a social worker was cut short by the disabling affects of disabilities including Firbomyalgia, P.T.S.D. and Dercum’s Disease, fibro, Lipedema and Lymphedema. While active as a social worker, I had a private practice working as a family special needs coach where I assisted those needing support in their child’s IEP and 504 meetings. I dedicated my final professional efforts, advocating for my own son who was diagnosed with autism. My son is now a very independent, capable 24 year old and out there taking on the world.
No Shame

Persistent Genital Arousal Disorder Is Not Nymphomania

By Kacreasa Wagner Persistent genital arousal disorder. Just the name of it can trigger snickers and comments from family, friends and even doctors. Tell someone you are aroused 24/7 and people think you either need to “get laid” or are a nymphomaniac. Guys joke about how they wish their wife would catch it. Doctors, who are not aware of this rare condition, question your mental health. PGAD is an agonizing physiological condition that disrupts every aspect of your life. This arousal is unwanted, intrusive, and disruptive. It is not due to any normal sexual thoughts or stimulation. Because it is rare, many women (and men) have suffered for years, even decades, in silence due to fear and shame. Sex and sexuality can be a complex and confusing subject, especially if you’ve experienced sexual trauma. I’m a 52-year-old bisexual woman. I used to love sex with my partner and alone. It was fun and enjoyable. Like most, I had trauma and things happen in my youth. I dealt with them through therapy and moved on. Most of the day, my PGAD exists at a low roar. Staying busy helps. I joke and laugh about it as much as possible. Like restless leg syndrome, PGAD generally gets worse at night. I cannot sleep because my discomfort and tension have been raging for the last six hours. I try to focus on a movie, but sitting makes it worse. I try to work on a hobby, but again sitting makes it worse. I stand in the kitchen, but I have myasthenia gravis and being on my feet plus the constant physical and mental stress makes my weakness and fatigue worse. I can’t lay down because that makes it worse too. PGAD makes everything feel heightened. It’s similar to how it feels when you’re sexually turned on — except I’m not. An accidental brush of my chest against a table takes me from a 0 to 100 immediately, a shocking and uncomfortable sensation. A soft kiss from my partner almost made me pass out once because my whole body arousal went from 0 to 100 in a split second. Everything in my “body” literally screams for a sexual release. I am in a bad dream. My body rocks and pulsates almost unconsciously to some ghostly stimulation. I am not actively thinking about anything sexual. I’m exhausted. I just want to rest and watch something to distract myself from these sensations. I try and stop the waves by tightening my pelvic floor so hard that I am tense from my shoulders to my knees. I shake at times trying to fight it. I tell it to “go the fuck away,” but it doesn’t listen. I tell god he is a jerk and not funny. I start to feel like I am being assaulted by my own body. Is this where the notion of an incubus, a demon with insatiable lust who preys on women, came from? Two hundred years ago, did they think women with PGAD were witches or possessed?  You start to question your own mind. You struggle with so much fear, doubt, and shame. I am utterly alone with this beast. It grows from nagging discomfort to crazy pain. I imagine it giant and hairy, all appendages and mouth and teeth. I fight it every night hoping that tomorrow things will change. I am a victim and a warrior. I fight in the shadow of shame. So just masturbate or have sex already, right? Not that simple. I like sex and used to have no issue orgasming. Once I had one, I was satisfied for days. Since PGAD, my orgasms are hard to attain and ineffective. It takes a lot more intense vivid fantasies and sometimes pornography to reach climax. It’s like a firecracker that turns out to be a dud. All the build-up and the payoff is barely noticeable. If I’m lucky, it brings the overall intensity down enough to fall sleep. On this particular day, I masturbated at 4 PM and 7 PM, and still, my body is screaming for a release. All this frantic sexual focus can put me in a weird headspace, bringing up even more feelings of shame. I’ve had nights this bad 20 out of the last 60 days. The other 40 were still pretty shitty. It’s a lot to go through physically, mentally and emotionally. I have doctors looking at possible causes, but nothing has been determined. I’ve met others who suffer from PGAD in online support groups and have found some treatments that work, so I still have hope. My partner and two closest friends know about my condition. You have to share it with someone, it really does help. I am choosing to shine a light on my shame so that some scared person who thinks they are sick, perverted, weird or crazy knows they are not alone. You are not the only one, you have a physiological condition. Hang on because there is hope. Sign up for The Mighty’s No Shame newsletter and get more stories like this delivered straight to your inbox.

Cindy Appel

Helping My Son on the Autism Spectrum Transition to Adulthood

“I signed the lease for the apartment,” my 23-year-old son told me, “I move in 10 days from now. I also got my occupancy permit and signed up for two college classes.” This wasn’t shocking for me, because we were all in agreement that it was time and we 100 percent morally supported him in pulling this plan together. When he verbalized all he had pulled together though, for a moment, it really hit home that there was no sign of the little boy who rarely spoke, and was constantly moving as a way of regulating his sensory needs associated with autism spectrum disorder. My role in his life was certainly different back then than it had become in recent times. As parents, there is no book of directions, and in the end, it comes down to your child’s ability to problem solve and work around barriers. It can also come down to their commitment to walk through doors. Years ago, when he was a child, I kept him safe, advocated my heart out for him, and tried to encourage his emotional growth and not get in the way. I taught him to honor what he knew to be true about himself and celebrate his place in the world. That is in the past, and he got to where he is today because he took responsibility for himself and made it possible. So this step out into the world is 100 percent his victory. Do you know what I deserve credit for? Not being an additional barrier to his life, and telling him years ago not to let anyone but himself dictate what he could try to do with his life. The rest was just knowing him and listening to him. Even much of that was him being who he naturally is. My biggest barrier has been my anxiety level when dealing with the world’s attitudes about him. It’s stressful going through years of day in and day out wondering what new crisis would be created by people not respecting his right to an education, his rights under the ADA, and people being cruel within our extended family and general social interactions. Ask any parent in similar shoes and chances are they’ll share a similar experience with anxiety, even post-traumatic stress disorder. The son I raised has never been a stressor on me — it’s been the world we live in, where ableism is brutal and common. I have had to work very hard to not let my anxiety interfere with my son’s right to grow up and lead his own life to the best of his ability. His ability has proven to be pretty awesome. It’s been two months since he moved out. He lives 15 minutes away. He is the master of his own life and destiny. Over the two months, I’ve lowered my hovering score from an 8 to a 1 on a scale of 1 to 10.  He and I have had discussions about it and I’m so glad we cultivated an open relationship where he can just be honest with me. He has proven his ability to have what any other 23-year-old deserves: respect and space to grow as the adult he is. I don’t go to bed worried about him at night. I don’t wake up wondering if he will be safe today. I know he is paying his rent and bills. I know he is eating well and keeping up with his laundry and basic care of himself. He gets around on his own without problems, and takes great care of himself. He has a 4.0 this term in college so far, and his apartment is kept pretty clean.  In the past few weeks, he has made very wise plans that give him more flexibility in the future. We made some not entirely popular choices as he grew up based on what we knew to be true about what he needed. Our choices dared to think beyond what professionals were telling many parents. What Parenting Tools Made the Most Difference? 1. Maximize the growing up years to try to build life skills. I had pressure from the system to not teach him independence skills. Their view was for parents not to teach the children life skills so that when he turned 18, he would qualify for adult services.   That seemed to be the goal put upon us by his caseworker from the state. I felt it was absurd to not attempt to teach life skills in the home.  There was no way of knowing if the government would provide enough funding for everyone to get those services. If we could teach it at home, why would we want taxpayers to pay for it? I certainly had more patience and love for him than the average minimum-wage aide working for the state would. I felt the situation deserved us trying to teach him myself. Starting in his early teens, he began to learn to cook and do his own laundry. He also learned to shop for his own food. Before long, if he wanted the food he wanted to eat or to have clean clothes, he had to be the one to make it happen. We kept it all positive. He took pride in learning to do these things. I was always around to assist if needed. He used crockpots to make meatloaf and a healthy yogurt cake. He learned to grill lean turkey and chicken burgers on a panini-style grill. He increased his intake of vegetables and fruit by being involved with preparing them to eat. To this day he makes the best whole wheat pizza crust I have ever eaten in my life. He learned how to budget and how to maintain a bank account. He really loved that, because the only thing he loved more than reading was numbers. 2) We encouraged him to feel good about who he was, and to embrace his disability. This is a great time in human history for every person to embrace their worth and value. With the push for our society to be pro-diversity and inclusion, there is no better time to teach our kids to enjoy who they are and see that all of us are different in our own ways. No one should be limited by the fact they may have to approach life differently. Different or not, we all make one powerful society! 3) Know that every human life has the right to live in peace and with respect. Our kids with labels tend to have a great deal of focus on their own needs. It can potentially become a skewed view of reality to allow them to believe it’s only about them. To combat that, we always made sure he was part of volunteer work. We made sure it was a variety of places and skill-appropriate. As he got older, I never saw him look down on anyone. On his own, he now has signed up to take part in a program that emphasizes diversity and inclusion so he can learn more about the histories of other minorities. 4) We taught him to appropriately advocate for himself before he became an adult. I had worked as a social worker and community advocate for some years. I made some worksheets for him on basics about how to advocate for himself.  We would get them out and ask him questions every now and then. When he turned 18, he didn’t have to wait long to put his self-advocacy skills to test. “Please sign the paperwork,” the impatient caseworker said. He replied, “Not until I read what I am signing.” “It’s the same paperwork every year, so there is no reason to read it,” the caseworker said. “Well, I’m not signing it until I read all the pages. How about I take it home and look at it and get back with you,” my son told her. And that is what happened. I knew after that meeting where he advocated for himself with no prompting from me that he could easily speak for himself.  He had the confidence and resolve to speak up if he needed to. 5) If applicable, don’t assume the only answers lie in what the programs in your area offer. After graduation from high school, my son assumed he would have the right to determine his own career path and decide his own life options even if he worked with agencies. That was not the case. He was increasingly unhappy with the status quo offered by the agencies in our area. It seemed to us that they would go out of their way to find reasons not to provide employment services. The best advice I could offer him was that only he could determine what he tried to accomplish with his life. His choice was to dump the programs and give doing his own thing a try. He immediately got creative and proved to himself and others he could do what he wanted to do. He created his own opportunities including: lead data intern for a political candidate’s campaign office and a couple years of data work at a private but large library at a local church. He rented retail space for a collectibles business and kept it in the black for two years, Doing college-level work in accounting and computer applications has given him more options in life. 6) Remember human self-determination is paramount. As a social work student of the 1980s, I was energized by the notion that “client self-determination is paramount.” It was drilled into our brains every step of the way in all of my casework classes. I paid attention and saw what my son was communicating with me. If I was unsure, I would just come out and ask him, or I would let him know it was OK to talk when he wanted to. Sometimes I could see he was unhappy with something, so I’d ask him if I was right about what I was noticing and then he would tell me. Over time he has gotten much better about speaking up. He is a master at it now. No matter what labels are associated with someone, they are entitled to as much self-determination as possible.  It is their lives, not anyone else’s. In the case of my son, I am so excited and glad he has this chance to be on his own and do his own thing. Further, I am glad I didn’t give in to my neurotic thoughts and camp out in his living room the first night he moved in. I dealt with my anxiety issues on my own, and made sure his life focus was what he wanted, not what I wanted. 7) It’s OK to own your own anxiety and treat yourself with care, just don’t let it interfere with your child trying to come into their own. I had always wondered how him moving away from home would come about, what it would look like, and if anyone would feel lost. When he was young, insecure and it felt like him and me against the world, I thought we would both be heartbroken if and when that separation would happen. I learned early on that with independence comes safety. Since I can’t live on this planet forever, the more independent he can become, the safer he will be. His safety equals a lessening of my anxiety. Five years ago we had no idea if this level of independence would be possible. My anxiety level was out there, but there was hope with the notion of “what if.” He became his own dreamer and doer. I just kept an open mind and tried to stay out of his way. I wasn’t always perfect with all that, but thank God I didn’t do enough damage to make his options fewer. I will do what I can to heal my anxiety that remains. As long as I live, I am always here for him. And I’m finding peace in knowing he is there for himself as well.

Lupus Patient Thanked for 'Sacrifice' After COVID-19 Drug Denial

A Los Angeles woman with lupus was denied a refill of her hydroxychloroquine prescription because her health care provider was “preserving” the medication for people “critically ill with COVID-19.” She was then thanked for her “sacrifice” and “understanding.” Hydroxychloroquine (brand name Plaquenil) is an anti-malaria drug prescribed for people with autoimmune conditions like lupus and rheumatoid arthritis due to its anti-inflammatory properties. The drug recently gained national attention when President Donald Trump suggested hydroxychloroquine showed promise for treating COVID-19. There is little evidence to support this claim and several people have died from hydroxychloroquine/chloroquine overdoses. Trump’s claim has also led to people hoarding hydroxychloroquine, causing a medication shortage for people who rely on the drug to treat chronic illness. Q: "Is there evidence to suggest that [hydroxychloroquine] might be used as a prophylactic against COVID-19?" Fauci: "The information that you're referring to is anecdotal. It wasn't done in a controlled clinical trial, so you can't make a definitive statement about it." pic.twitter.com/dEjtBNMGeA— CBS Evening News (@CBSEveningNews) March 20, 2020 BuzzFeed News reported on Wednesday that a 45-year-old woman with lupus, Dale, learned her provider Kaiser Permanente halted her refills of hydroxychloroquine for the time being. The note Dale received, which was obtained by BuzzFeed, added most people who take the medication build up levels of the medication that can last in the body for up to 40 days and she should not ask her doctor for a refill. “Please do not contact your physician about an exception process to get a refill, as prescriptions will not be filled even if written by your physician,” the note reads, adding: Hydroxychloroquine does build up a level in the system that stays in the body for an average of 40 days even after the last dose is taken. If you do run out of medication and feel your condition is significantly worsening, please contact your doctor to discuss alternative treatments. Kaiser Permanente then thanked Dale for her “sacrifice” and “understanding” of the new policy. “Thank you for the sacrifice you will be making for the sake of those that are critically ill; your sacrifice may actually save lives,” the note told Dale. “We appreciate your understanding, and you will be notified of any changes in the policy as they happen. We all hope this will be a short-term situation.” For people with lupus and other chronic illnesses, hydroxychloroquine reduces symptoms caused by overactive inflammation. Unlike other immunosuppressant medications like prednisone, hydroxychloroquine also acts as a disease-modifying drug, lessening the likelihood of disease flares. “For many people with lupus there are no alternatives to these medications,” the Lupus Foundation of America said in a statement, adding: Hydroxychloroquine or chloroquine are the only methods of preventing inflammation and disease activity that can lead to pain, disability, organ damage, and other serious illness. An increase in lupus-related disease activity not only significantly impairs the health and quality of life of people with lupus but will also place further strain on health care providers and systems in a time of crisis. Dale, who said she has been taking hydroxychloroquine for 10 years, said she was worried about a lupus flare that could make her even more susceptible to COVID-19. “I am already immunocompromised and not taking this medication will likely put me into a lupus flare, making serious complications from COVID more likely,” she told BuzzFeed News. “The fact that they thanked me for my ‘sacrifice’ is disturbing. I never agreed to sacrifice my health and possibly my life and cannot believe that I am being forced to do so.” Other chronic illness patients have reported difficulties getting their prescriptions for hydroxychloroquine filled in the last week as well. Mighty community member Megan C. shared she had to reach out to several pharmacies to get her hydroxychloroquine prescription refilled. “I called every pharmacy with no luck. I was told by one pharmacy tech that doctors were prescribing it to themselves, friends, and family as a preventative which is causing a shortage,” Megan said, adding: I shared an article on Facebook and a friend who is a pharmacy tech called me after reading it telling me that her pharmacy had it in stock, but holding it from the public. She was able to fill me a 30-day supply, but she said that all of the hydroxychloroquine is being diverted to hospitals until further notice. Nobody knows if we will be able to fill our meds in the next coming months. When reached for comment, Nancy Gin, regional medical director of Quality and Clinical Analysis at Kaiser Permanente, Southern California, told BuzzFeed News the health care provider is tightly controlling its supply of hydroxychloroquine to make sure the sickest patients, including those with COVID-19 or acute lupus, have access to the medication. Gin reiterated she hopes this is a short-term solution. “Kaiser Permanente physicians and pharmacists are also working together on an evidence-based approach to identify alternative therapies for patients with lupus,” Gin said, adding: Extensive experience and research show that hydroxychloroquine builds up in the body and continues to work for an average of 40 days even after the last dose is taken. By then, we expect the drug manufacturers to have ramped up production to meet the increased demand. Until then, we are no longer refilling routine prescriptions to ensure we have adequate supply to care for our sickest patients. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

Community Voices

Those At Risk Deserve To Exist

I really do love apple cinnamon herbal tea on a coolish morning, but certainly not when it is accidently being snorted out of my nostrils and flowing down my freshly laundered sweater. When this happened this morning I had to do a double take. Did I really read what I was reading that caused this herbal calamity coming out of my face?  I did. A nationally known politician  was in the news echoing the view of others on social media that those at risk of complications and death from the COVID-19 should be glad to make the sacrifice for the US economy.

I am in my late 50’s and suffer from a combination of rare and more common chronic illnesses that can impact how I handle viruses.  Several people I love dearly fall under one or more of those categories. All of us feel responsible for not only our own health but our community’s welfare.

Who hasn’t seen what has happened in the world regarding the impact from the COVID-19 pandemic? I was already aware that because of a lack of respirators, the elderly in Italy impacted by this virus and needing ventilators were being given sedatives and allowed to perish.  Obviously it is heartbreaking for those who were allowed to die, their families and the doctors who have had to make those decisions.

What I was not prepared for was to see well educated people in the public eye, as well as normally well meaning people on social media, viewing our elderly and those with compromised health as expendable.  The economy, stocks and jobs are their only focus. These like minded people feel that I and others like myself should gladly risk our lives so that America can lower it’s defenses and go back to business as usual sooner than what likely is needed.

What really strikes a chord in me is that as a social worker, a woman, the mother of someone with disabilities and now someone with quite a list of disabilities herself, I have always known that there are people who see those like me as throw away people.

Never thought I would live to see a time in America’s history where people have the nerve to so openly own up to that point of view of questioning if the lives of any demographic were worth trying to safeguard.

Adding to the theme of the day, after coughing for a couple of days, suffering fevers up to 100.6, sore throat that ended up traveling to my chest where it hurts, that I would learn how impossible it would be to get tested for COVID-19.  I saw a message from my doctor telling me to call the COVID-19 hotline to go through their testing protocol.  I did and was told by two resources I called that because I hadn’t been in contact with anyone known to test positive, and hadn’t traveled abroad, I was not allowed to be tested.

Further, even in spite of having all the symptoms and being on several accounts high risk, I was told if I got to the point that I could not breath,  I couldn’t just contact the ER and then go to the ER. Instead I had to contact my primary care doctor or urgent care first. . I was nice, but I told the worker that if I can’t breath, as in no oxygen making into my body, I would be lucky to make it directly to the ER.  So I wasn’t going to jump through those hoops. My doctor was already involved.

When I got off the phone, I thought to myself, “Well world are you trying to tell my you are through with me?”

I admit it, the following hour, I didn’t emotionally have a good feeling about what had been read and experienced.  I got over it, I thought about how so many of us are going through this. I thought about how many, many people in the medical field do care about all their patients including those like myself. They are right now risking their lives for our welfare. We all do the best we can do for ourselves, each other and our general community.

So here I am trying to tough this out here at home with an inhaler my doctor provided me.  With luck won’t need further assistance with breathing. If I need to, I will call the ER first and go directly in.

As for the attitudes of some folks who believe otherwise, I know the world is a better place because we are all in it together.  We each deserve respect for our right to exist.

I’m sure not going to sacrifice another cup of my favorite tea because of the news or social media. We all need to enjoy those sorts of moments and not sacrifice them for any reason.

2 people are talking about this
Community Voices

Those At Risk Deserve To Exist

I really do love apple cinnamon herbal tea on a coolish morning, but certainly not when it is accidently being snorted out of my nostrils and flowing down my freshly laundered sweater. When this happened this morning I had to do a double take. Did I really read what I was reading that caused this herbal calamity coming out of my face?  I did. A nationally known politician  was in the news echoing the view of others on social media that those at risk of complications and death from the COVID-19 should be glad to make the sacrifice for the US economy.

I am in my late 50’s and suffer from a combination of rare and more common chronic illnesses that can impact how I handle viruses.  Several people I love dearly fall under one or more of those categories. All of us feel responsible for not only our own health but our community’s welfare.

Who hasn’t seen what has happened in the world regarding the impact from the COVID-19 pandemic? I was already aware that because of a lack of respirators, the elderly in Italy impacted by this virus and needing ventilators were being given sedatives and allowed to perish.  Obviously it is heartbreaking for those who were allowed to die, their families and the doctors who have had to make those decisions.

What I was not prepared for was to see well educated people in the public eye, as well as normally well meaning people on social media, viewing our elderly and those with compromised health as expendable.  The economy, stocks and jobs are their only focus. These like minded people feel that I and others like myself should gladly risk our lives so that America can lower it’s defenses and go back to business as usual sooner than what likely is needed.

What really strikes a chord in me is that as a social worker, a woman, the mother of someone with disabilities and now someone with quite a list of disabilities herself, I have always known that there are people who see those like me as throw away people.

Never thought I would live to see a time in America’s history where people have the nerve to so openly own up to that point of view of questioning if the lives of any demographic were worth trying to safeguard.

Adding to the theme of the day, after coughing for a couple of days, suffering fevers up to 100.6, sore throat that ended up traveling to my chest where it hurts, that I would learn how impossible it would be to get tested for COVID-19.  I saw a message from my doctor telling me to call the COVID-19 hotline to go through their testing protocol.  I did and was told by two resources I called that because I hadn’t been in contact with anyone known to test positive, and hadn’t traveled abroad, I was not allowed to be tested.

Further, even in spite of having all the symptoms and being on several accounts high risk, I was told if I got to the point that I could not breath,  I couldn’t just contact the ER and then go to the ER. Instead I had to contact my primary care doctor or urgent care first. . I was nice, but I told the worker that if I can’t breath, as in no oxygen making into my body, I would be lucky to make it directly to the ER.  So I wasn’t going to jump through those hoops. My doctor was already involved.

When I got off the phone, I thought to myself, “Well world are you trying to tell my you are through with me?”

I admit it, the following hour, I didn’t emotionally have a good feeling about what had been read and experienced.  I got over it, I thought about how so many of us are going through this. I thought about how many, many people in the medical field do care about all their patients including those like myself. They are right now risking their lives for our welfare. We all do the best we can do for ourselves, each other and our general community.

So here I am trying to tough this out here at home with an inhaler my doctor provided me.  With luck won’t need further assistance with breathing. If I need to, I will call the ER first and go directly in.

As for the attitudes of some folks who believe otherwise, I know the world is a better place because we are all in it together.  We each deserve respect for our right to exist.

I’m sure not going to sacrifice another cup of my favorite tea because of the news or social media. We all need to enjoy those sorts of moments and not sacrifice them for any reason.

2 people are talking about this
Community Voices

Chronic Illness: It' OK To Protect Against The Coronavirus

” Just wash your hands and remember that the stock market is falling and restaurants are really hurting right now. You need to keep being out there buying things,”

“It’s not that I don’t believe you, but why does what you have put you at risk?”

” You are spreading fear by asking about this. Businesses need you to still go out and shop”

‘ Stop overreacting. It’s just about hand washing and not touching your face.”

This is what some with #ChronicIllness are being told on social media and in other discussions when saying they are avoiding crowded public places due to having Chronic Illnesses and/or 60 or older, and the concern for the Coronavirus COVID-19.

The CDC has stated that those 60 and over as well as those who have health issues that would make them more likely to be at risk, should avoid crowds.

It is not often that the CDC has to put out such a warning. I’m newly in the ball park of that age range plus I have health issues that would put me more at risk.  I have had to adjust to all that. Really not a big deal. A person just rolls with it.  Those of us with chronic health concerns have a great deal of experience rolling with such things.

What I have found really annoying and true sign of the times, has been those in day to day life and on social media who are so concerned about the stock market and the flow of customers at local businesses, that they don’t understand why some people do need to take the world pandemic seriously.

Every time I have seen on social media such arguments going back and forth,  I have felt like I was in an alternative universe. Why would someone who meets the criteria of the CDC’s recommendations to avoid crowds, have to defend their choice to follow that advice? Has our society really lost that much of our humanity?

It’s unusual indeed but of course who hasn’t noticed the sometimes outrageous attitudes displayed by others on social media.  Also unusual has been the economy so heavily impacted. When the economy is impacted and there is scuttlebutt from politicians related to it all, some others can cop an attitude that doesn’t put much value on other people’s right to take care of basic health needs.

No one is advocating for panic in the streets.  Panic is hard on people’s emotions and #MentalHealth. It can make so many chronic health issues worse.  All of us can agree on that. What is warranted though is for each person to follow the guidelines of the medical authorities and their own medical team.  I also advocate  that on social media, you don’t have to deal with those who don’t understand. Ignore or block them. Just don’t forget that you and your health matter.

So talk to your medical team and make whatever adjustments seem relevant in reducing public contact.

Ideas For Reducing Public Contact

1) Reduce how often groceries need to be purchased.  One of the most “peopled” places is a grocery store. Whether you buy your groceries weekly, bi-weekly, or monthly, the money is still going into the economy. By a couple weeks worth at least.

2) Make use of grocery delivery services. Shipt is one such service, they recently sent a letter to their customers stating that for everyone’s health, their shoppers will drop groceries off at the door step to reduce any possible exposure to customers.

3) If you haven’t tried Skype or FaceTime, this is a great time to do so. It is a fun way to still see people face to face.

4) Because of the lack of paid sick leave, younger people who tend to work at fast food and pizza establishments, will likely still report to work even if sick. Same is true about delivery services as well. Their symptoms also may be more minor and blown off as seasonal allergies or just a cold. It is best to avoid even delivered fast food and pizzas.

5) If possible avoid public transportation, including Taxi and ride sharing type of  services that serve a multitude of people.

6) Remember masks only help if you are the person who is sick. It’s ok to have masks on hand to provide people who come into your home for any reason. Remember they don’t have to display signs of illness to give you this virus.

7) There will be other times to go to gatherings at religious houses and in the community. Find out if there is a way to view the services/events online.

8) If you are employed, work from home if possible.

Community Voices

It's ok to ignore the politics and take care of your health

The behavior of those with a political ax to grind on social media towards those of us who have to take this threat seriously, has been at times terrible. Even in support groups for chronic illnesses, politics and conspiracy theories of how this virus is a hoax, were tossed in the path of anyone who was seeking support as they prepared for this virus being in our communities. People were defending their right to take care of their health needs. What was up with that?

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ADS @adsilva
contributor

Disabled and in Denial About Precautions I Should Take for COVID-19

This week, my therapist was kind enough to schedule an “emergency” appointment for me to address my health needs and make sure I advocate for myself as the coronavirus (COVID-19) continues to spread. For those who don’t know by now,  COVID-19 is a new virus in the coronavirus family, a group of illnesses that cause upper respiratory illnesses like the common cold. I’m severely immunocompromised, and am one of those people you read about who is at much higher risk for being hospitalized (or worse) because of COVID-19. To be clear, my therapist had to email me. I didn’t have the foresight to take that extra step to address how I might be feeling at this point. During my appointment, my therapist reminded me to: Not take the train or public transportation. Stay as isolated as possible. If I’m lonely, to FaceTime friends or ask them to come over, rather than going out. Avoid places like pharmacies, etc. Ask people for help. I just sat there in a half-daze and nodded my head, reluctantly. I’ve lived with a primary immunodeficiency for 33 years, and I am still somehow in denial – OK a great deal of denial about how that actually impacts me. I was definitely planning on taking the train later that day. It’s almost as if everything she said was news to me, and I realized how dangerous my self-denial was becoming. Once at an appointment, my therapist brought up that I’ve been experiencing “ internalized ableism .” I had never heard this term before. She described how my go-to actions, like constantly beating myself up and viewing myself negatively when I can’t do things a “healthy” person might be able to, are likely the result of placing society’s ableist views directly on myself. And this time around, with a pandemic that is spreading quickly , and a health system that is lagging in testing, I am seeing my internalized ableism shine through. I had four extremely important professional trips planned this month and next, and it took me calling all three of my immunologists to make sure they all said “no” to traveling. If I can honestly reflect on this, why did I have to consult with all three of them, and hear “no” three times before I knew I should prioritize my health over my career? Why couldn’t I value my well-being first? Perhaps my internalized ableism is more pronounced because my disability is “invisible.” When I look in the mirror, I get angry with myself. My two sisters were in wheelchairs, and for me, growing up, that was the definition of “disability.” I still have trouble believing my body might need the same care and love they required as well. I am constantly pushing against myself, getting frustrated and throwing myself into bouts of depression and anxiety because I can’t accept this simple truth: I have a disability. I require accommodations, and I simply cannot do everything the same way as others who have their health. Another simple truth? I also have dreams and goals — big ones — and I deserve a space in society to try and achieve them. For people with disabilities, we’re living in a world that was mainly created without consideration for us — and much of the time it continues to be built without our input. (Special shout-out to all the new businesses and buildings that still aren’t ADA-compliant.) Sadly, I realize I’ve bought into ableism when it comes to how I think of myself and how I should be able to live my life. I “should” myself constantly – yes, I can travel there, be in public spaces without take extra precautions, eat food that I react to – all because technically, I should be able to. Now I’m realizing how much I’ve hurt myself in that process, and set myself back even further. For all of us with chronic conditions, it requires time and real effort to process how life will change when our health is constantly unpredictable. It also requires an enormous amount of self-love. So if you’re struggling to accept that you might need accommodations and extra care, especially during these more alarming times as we all try to protect ourselves and our families from illness, I want you to know that you are not alone. I’ve spent seven years as a professional patient advocate, and I’m the first to admit that self-advocacy, as much as I promote it to others, is one of the hardest things to put into action. If you have health issues ( or your child does ), I want you to know you deserve that extra care. Put yourself first, love yourself enough to have foresight, and take any necessary actions to protect your health. You deserve that extra help from your neighbor when you can’t get out or be in public. You deserve to express yourself in safe spaces, to people who understand. So let’s start supporting each other. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

Cindy Appel

Helping My Son on the Autism Spectrum Transition to Adulthood

“I signed the lease for the apartment,” my 23-year-old son told me, “I move in 10 days from now. I also got my occupancy permit and signed up for two college classes.” This wasn’t shocking for me, because we were all in agreement that it was time and we 100 percent morally supported him in pulling this plan together. When he verbalized all he had pulled together though, for a moment, it really hit home that there was no sign of the little boy who rarely spoke, and was constantly moving as a way of regulating his sensory needs associated with autism spectrum disorder. My role in his life was certainly different back then than it had become in recent times. As parents, there is no book of directions, and in the end, it comes down to your child’s ability to problem solve and work around barriers. It can also come down to their commitment to walk through doors. Years ago, when he was a child, I kept him safe, advocated my heart out for him, and tried to encourage his emotional growth and not get in the way. I taught him to honor what he knew to be true about himself and celebrate his place in the world. That is in the past, and he got to where he is today because he took responsibility for himself and made it possible. So this step out into the world is 100 percent his victory. Do you know what I deserve credit for? Not being an additional barrier to his life, and telling him years ago not to let anyone but himself dictate what he could try to do with his life. The rest was just knowing him and listening to him. Even much of that was him being who he naturally is. My biggest barrier has been my anxiety level when dealing with the world’s attitudes about him. It’s stressful going through years of day in and day out wondering what new crisis would be created by people not respecting his right to an education, his rights under the ADA, and people being cruel within our extended family and general social interactions. Ask any parent in similar shoes and chances are they’ll share a similar experience with anxiety, even post-traumatic stress disorder. The son I raised has never been a stressor on me — it’s been the world we live in, where ableism is brutal and common. I have had to work very hard to not let my anxiety interfere with my son’s right to grow up and lead his own life to the best of his ability. His ability has proven to be pretty awesome. It’s been two months since he moved out. He lives 15 minutes away. He is the master of his own life and destiny. Over the two months, I’ve lowered my hovering score from an 8 to a 1 on a scale of 1 to 10.  He and I have had discussions about it and I’m so glad we cultivated an open relationship where he can just be honest with me. He has proven his ability to have what any other 23-year-old deserves: respect and space to grow as the adult he is. I don’t go to bed worried about him at night. I don’t wake up wondering if he will be safe today. I know he is paying his rent and bills. I know he is eating well and keeping up with his laundry and basic care of himself. He gets around on his own without problems, and takes great care of himself. He has a 4.0 this term in college so far, and his apartment is kept pretty clean.  In the past few weeks, he has made very wise plans that give him more flexibility in the future. We made some not entirely popular choices as he grew up based on what we knew to be true about what he needed. Our choices dared to think beyond what professionals were telling many parents. What Parenting Tools Made the Most Difference? 1. Maximize the growing up years to try to build life skills. I had pressure from the system to not teach him independence skills. Their view was for parents not to teach the children life skills so that when he turned 18, he would qualify for adult services.   That seemed to be the goal put upon us by his caseworker from the state. I felt it was absurd to not attempt to teach life skills in the home.  There was no way of knowing if the government would provide enough funding for everyone to get those services. If we could teach it at home, why would we want taxpayers to pay for it? I certainly had more patience and love for him than the average minimum-wage aide working for the state would. I felt the situation deserved us trying to teach him myself. Starting in his early teens, he began to learn to cook and do his own laundry. He also learned to shop for his own food. Before long, if he wanted the food he wanted to eat or to have clean clothes, he had to be the one to make it happen. We kept it all positive. He took pride in learning to do these things. I was always around to assist if needed. He used crockpots to make meatloaf and a healthy yogurt cake. He learned to grill lean turkey and chicken burgers on a panini-style grill. He increased his intake of vegetables and fruit by being involved with preparing them to eat. To this day he makes the best whole wheat pizza crust I have ever eaten in my life. He learned how to budget and how to maintain a bank account. He really loved that, because the only thing he loved more than reading was numbers. 2) We encouraged him to feel good about who he was, and to embrace his disability. This is a great time in human history for every person to embrace their worth and value. With the push for our society to be pro-diversity and inclusion, there is no better time to teach our kids to enjoy who they are and see that all of us are different in our own ways. No one should be limited by the fact they may have to approach life differently. Different or not, we all make one powerful society! 3) Know that every human life has the right to live in peace and with respect. Our kids with labels tend to have a great deal of focus on their own needs. It can potentially become a skewed view of reality to allow them to believe it’s only about them. To combat that, we always made sure he was part of volunteer work. We made sure it was a variety of places and skill-appropriate. As he got older, I never saw him look down on anyone. On his own, he now has signed up to take part in a program that emphasizes diversity and inclusion so he can learn more about the histories of other minorities. 4) We taught him to appropriately advocate for himself before he became an adult. I had worked as a social worker and community advocate for some years. I made some worksheets for him on basics about how to advocate for himself.  We would get them out and ask him questions every now and then. When he turned 18, he didn’t have to wait long to put his self-advocacy skills to test. “Please sign the paperwork,” the impatient caseworker said. He replied, “Not until I read what I am signing.” “It’s the same paperwork every year, so there is no reason to read it,” the caseworker said. “Well, I’m not signing it until I read all the pages. How about I take it home and look at it and get back with you,” my son told her. And that is what happened. I knew after that meeting where he advocated for himself with no prompting from me that he could easily speak for himself.  He had the confidence and resolve to speak up if he needed to. 5) If applicable, don’t assume the only answers lie in what the programs in your area offer. After graduation from high school, my son assumed he would have the right to determine his own career path and decide his own life options even if he worked with agencies. That was not the case. He was increasingly unhappy with the status quo offered by the agencies in our area. It seemed to us that they would go out of their way to find reasons not to provide employment services. The best advice I could offer him was that only he could determine what he tried to accomplish with his life. His choice was to dump the programs and give doing his own thing a try. He immediately got creative and proved to himself and others he could do what he wanted to do. He created his own opportunities including: lead data intern for a political candidate’s campaign office and a couple years of data work at a private but large library at a local church. He rented retail space for a collectibles business and kept it in the black for two years, Doing college-level work in accounting and computer applications has given him more options in life. 6) Remember human self-determination is paramount. As a social work student of the 1980s, I was energized by the notion that “client self-determination is paramount.” It was drilled into our brains every step of the way in all of my casework classes. I paid attention and saw what my son was communicating with me. If I was unsure, I would just come out and ask him, or I would let him know it was OK to talk when he wanted to. Sometimes I could see he was unhappy with something, so I’d ask him if I was right about what I was noticing and then he would tell me. Over time he has gotten much better about speaking up. He is a master at it now. No matter what labels are associated with someone, they are entitled to as much self-determination as possible.  It is their lives, not anyone else’s. In the case of my son, I am so excited and glad he has this chance to be on his own and do his own thing. Further, I am glad I didn’t give in to my neurotic thoughts and camp out in his living room the first night he moved in. I dealt with my anxiety issues on my own, and made sure his life focus was what he wanted, not what I wanted. 7) It’s OK to own your own anxiety and treat yourself with care, just don’t let it interfere with your child trying to come into their own. I had always wondered how him moving away from home would come about, what it would look like, and if anyone would feel lost. When he was young, insecure and it felt like him and me against the world, I thought we would both be heartbroken if and when that separation would happen. I learned early on that with independence comes safety. Since I can’t live on this planet forever, the more independent he can become, the safer he will be. His safety equals a lessening of my anxiety. Five years ago we had no idea if this level of independence would be possible. My anxiety level was out there, but there was hope with the notion of “what if.” He became his own dreamer and doer. I just kept an open mind and tried to stay out of his way. I wasn’t always perfect with all that, but thank God I didn’t do enough damage to make his options fewer. I will do what I can to heal my anxiety that remains. As long as I live, I am always here for him. And I’m finding peace in knowing he is there for himself as well.

Cindy Appel

Helping My Son on the Autism Spectrum Transition to Adulthood

“I signed the lease for the apartment,” my 23-year-old son told me, “I move in 10 days from now. I also got my occupancy permit and signed up for two college classes.” This wasn’t shocking for me, because we were all in agreement that it was time and we 100 percent morally supported him in pulling this plan together. When he verbalized all he had pulled together though, for a moment, it really hit home that there was no sign of the little boy who rarely spoke, and was constantly moving as a way of regulating his sensory needs associated with autism spectrum disorder. My role in his life was certainly different back then than it had become in recent times. As parents, there is no book of directions, and in the end, it comes down to your child’s ability to problem solve and work around barriers. It can also come down to their commitment to walk through doors. Years ago, when he was a child, I kept him safe, advocated my heart out for him, and tried to encourage his emotional growth and not get in the way. I taught him to honor what he knew to be true about himself and celebrate his place in the world. That is in the past, and he got to where he is today because he took responsibility for himself and made it possible. So this step out into the world is 100 percent his victory. Do you know what I deserve credit for? Not being an additional barrier to his life, and telling him years ago not to let anyone but himself dictate what he could try to do with his life. The rest was just knowing him and listening to him. Even much of that was him being who he naturally is. My biggest barrier has been my anxiety level when dealing with the world’s attitudes about him. It’s stressful going through years of day in and day out wondering what new crisis would be created by people not respecting his right to an education, his rights under the ADA, and people being cruel within our extended family and general social interactions. Ask any parent in similar shoes and chances are they’ll share a similar experience with anxiety, even post-traumatic stress disorder. The son I raised has never been a stressor on me — it’s been the world we live in, where ableism is brutal and common. I have had to work very hard to not let my anxiety interfere with my son’s right to grow up and lead his own life to the best of his ability. His ability has proven to be pretty awesome. It’s been two months since he moved out. He lives 15 minutes away. He is the master of his own life and destiny. Over the two months, I’ve lowered my hovering score from an 8 to a 1 on a scale of 1 to 10.  He and I have had discussions about it and I’m so glad we cultivated an open relationship where he can just be honest with me. He has proven his ability to have what any other 23-year-old deserves: respect and space to grow as the adult he is. I don’t go to bed worried about him at night. I don’t wake up wondering if he will be safe today. I know he is paying his rent and bills. I know he is eating well and keeping up with his laundry and basic care of himself. He gets around on his own without problems, and takes great care of himself. He has a 4.0 this term in college so far, and his apartment is kept pretty clean.  In the past few weeks, he has made very wise plans that give him more flexibility in the future. We made some not entirely popular choices as he grew up based on what we knew to be true about what he needed. Our choices dared to think beyond what professionals were telling many parents. What Parenting Tools Made the Most Difference? 1. Maximize the growing up years to try to build life skills. I had pressure from the system to not teach him independence skills. Their view was for parents not to teach the children life skills so that when he turned 18, he would qualify for adult services.   That seemed to be the goal put upon us by his caseworker from the state. I felt it was absurd to not attempt to teach life skills in the home.  There was no way of knowing if the government would provide enough funding for everyone to get those services. If we could teach it at home, why would we want taxpayers to pay for it? I certainly had more patience and love for him than the average minimum-wage aide working for the state would. I felt the situation deserved us trying to teach him myself. Starting in his early teens, he began to learn to cook and do his own laundry. He also learned to shop for his own food. Before long, if he wanted the food he wanted to eat or to have clean clothes, he had to be the one to make it happen. We kept it all positive. He took pride in learning to do these things. I was always around to assist if needed. He used crockpots to make meatloaf and a healthy yogurt cake. He learned to grill lean turkey and chicken burgers on a panini-style grill. He increased his intake of vegetables and fruit by being involved with preparing them to eat. To this day he makes the best whole wheat pizza crust I have ever eaten in my life. He learned how to budget and how to maintain a bank account. He really loved that, because the only thing he loved more than reading was numbers. 2) We encouraged him to feel good about who he was, and to embrace his disability. This is a great time in human history for every person to embrace their worth and value. With the push for our society to be pro-diversity and inclusion, there is no better time to teach our kids to enjoy who they are and see that all of us are different in our own ways. No one should be limited by the fact they may have to approach life differently. Different or not, we all make one powerful society! 3) Know that every human life has the right to live in peace and with respect. Our kids with labels tend to have a great deal of focus on their own needs. It can potentially become a skewed view of reality to allow them to believe it’s only about them. To combat that, we always made sure he was part of volunteer work. We made sure it was a variety of places and skill-appropriate. As he got older, I never saw him look down on anyone. On his own, he now has signed up to take part in a program that emphasizes diversity and inclusion so he can learn more about the histories of other minorities. 4) We taught him to appropriately advocate for himself before he became an adult. I had worked as a social worker and community advocate for some years. I made some worksheets for him on basics about how to advocate for himself.  We would get them out and ask him questions every now and then. When he turned 18, he didn’t have to wait long to put his self-advocacy skills to test. “Please sign the paperwork,” the impatient caseworker said. He replied, “Not until I read what I am signing.” “It’s the same paperwork every year, so there is no reason to read it,” the caseworker said. “Well, I’m not signing it until I read all the pages. How about I take it home and look at it and get back with you,” my son told her. And that is what happened. I knew after that meeting where he advocated for himself with no prompting from me that he could easily speak for himself.  He had the confidence and resolve to speak up if he needed to. 5) If applicable, don’t assume the only answers lie in what the programs in your area offer. After graduation from high school, my son assumed he would have the right to determine his own career path and decide his own life options even if he worked with agencies. That was not the case. He was increasingly unhappy with the status quo offered by the agencies in our area. It seemed to us that they would go out of their way to find reasons not to provide employment services. The best advice I could offer him was that only he could determine what he tried to accomplish with his life. His choice was to dump the programs and give doing his own thing a try. He immediately got creative and proved to himself and others he could do what he wanted to do. He created his own opportunities including: lead data intern for a political candidate’s campaign office and a couple years of data work at a private but large library at a local church. He rented retail space for a collectibles business and kept it in the black for two years, Doing college-level work in accounting and computer applications has given him more options in life. 6) Remember human self-determination is paramount. As a social work student of the 1980s, I was energized by the notion that “client self-determination is paramount.” It was drilled into our brains every step of the way in all of my casework classes. I paid attention and saw what my son was communicating with me. If I was unsure, I would just come out and ask him, or I would let him know it was OK to talk when he wanted to. Sometimes I could see he was unhappy with something, so I’d ask him if I was right about what I was noticing and then he would tell me. Over time he has gotten much better about speaking up. He is a master at it now. No matter what labels are associated with someone, they are entitled to as much self-determination as possible.  It is their lives, not anyone else’s. In the case of my son, I am so excited and glad he has this chance to be on his own and do his own thing. Further, I am glad I didn’t give in to my neurotic thoughts and camp out in his living room the first night he moved in. I dealt with my anxiety issues on my own, and made sure his life focus was what he wanted, not what I wanted. 7) It’s OK to own your own anxiety and treat yourself with care, just don’t let it interfere with your child trying to come into their own. I had always wondered how him moving away from home would come about, what it would look like, and if anyone would feel lost. When he was young, insecure and it felt like him and me against the world, I thought we would both be heartbroken if and when that separation would happen. I learned early on that with independence comes safety. Since I can’t live on this planet forever, the more independent he can become, the safer he will be. His safety equals a lessening of my anxiety. Five years ago we had no idea if this level of independence would be possible. My anxiety level was out there, but there was hope with the notion of “what if.” He became his own dreamer and doer. I just kept an open mind and tried to stay out of his way. I wasn’t always perfect with all that, but thank God I didn’t do enough damage to make his options fewer. I will do what I can to heal my anxiety that remains. As long as I live, I am always here for him. And I’m finding peace in knowing he is there for himself as well.