Katy Harney-Johnson

@katy-harney | contributor
I am a business owner, writer, actor, advocate, mom, wife and chronic illness warrior. I have several autoimmune diseases, such as, Ankylosing Spondylitis, Sjogrens Syndrome, Arthritis, Vasculitis and Fibromyalgia. I also suffer from several neurological conditions including Trigeminal Neuralgia, Glossopharyngeal Neuralgia, Occipital Neuralgia, Myoclonic/Focal Seizures, and Brain Lesions. My first symptoms started at age 11 so I have been sick most of my life. I have not let that stop me from pursuing my dreams, though it has not been easy. I have found a lot of comfort in reading stories from other chronic illness warriors and enjoy the opportunity to help others by sharing my stories as well.
Community Voices
Shel

I dreamed last night that I was working on a bus while it was moving. I had some type of job that involved the telephone. One of the head bosses came aboard and told me that I wasn't doing very well. She said that she wanted to monitor my phone calls! I stood up and dropped my headset. Then I lost something else. Finally the head boss grew impatient and asked a rider in the back of the bus if she needed a job. She was going to give my job to someone else! I woke up at this point. I was really anxious. So I got a drink of water and went back to bed.

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3 Things to Know About Those at High Risk for Severe COVID-19

As I lay in the hospital, I listen to the clicking and beeping of the IV machines and monitors, waiting for my round of medications for the day to begin. I stare at the nurses bustling away. Their voices muffled under their masks as the fluorescent lights from above reflect off their face shields. I am reminded that this month marks one year since COVID-19 pushed its way into our lives. When I think back to a year ago, I remember my small businesses being forced to close, my children’s schools closing and the grocery store chaos. “Where’s the toilet paper!” I remember the confusing and ever-changing messaging from the government and the fear of what all of this meant for our futures. It was about a week later that I was sick with the usual sore throat, fever, congestion, and trouble breathing that had become part of my life, off and on for so many years.  Getting sick is a rather common occurrence for me as someone who is immune-suppressed and prone to chronic infections. In fact, wearing masks was something I had been doing during cold and flu season long before COVID-19. However, my infection last March was even more concerning because now I worried that maybe this cold was the newly revealed COVID-19 virus. I was quite scared thinking about the possibility of what that could mean for me and my family, including my spouse and children. I have been hospitalized before for serious infections and sepsis from simple colds and flu. I know how bad my body is at fighting back against viruses. Getting sick was always a scary ordeal for me, but the fear of COVID-19 left me with far more worry than the usual infection. I spent weeks trying to get tested in those last days of March 2020 and remember clearly the relentless feeling of being completely marooned. It didn’t matter that I was someone with multiple co-morbidities, that I was someone on immune-suppressing medication, that my doctor wanted me tested or even that I had a history of breathing issues. The criteria for testing in my community at that time was only available to those who had been out of the country or had been in contact with someone with a known COVID-19 diagnosis. After repeated calls and persistent attempts to enlist help, I was finally told that there was going to be some mass mobile testing coming in the next week. It took another week before I could get an appointment. Even though I felt absolutely awful, I was pretty sure it wasn’t COVID-19 because quite simply, I was still alive. Nonetheless, I was pretty sick and I needed an answer. When I was finally able to get tested, I had to drive over an hour to a testing site. I then waited several more weeks before finding out my test was negative. My ordeal last March to get COVID tested was the first of many moments throughout this last year where I would be reminded just how insignificant my immune-suppressed/high-risk label was to others. It would be the first of many challenges that would make me feel disregarded during this pandemic. As the months went on, I, like many others, struggled with the multitude of challenges brought on from COVID-19. This included having my businesses close, having my children’s schooling turned virtual including my youngest who has disabilities, having my spouse suddenly working from our dining room and taking a pay cut, no longer having a social life, trying to access my medical care and medical care for my daughter in the safest ways possible, etc. For me, however, the biggest strain on my brain was the continuous worry of possibly catching COVID-19 and even worse, as someone who doesn’t do well with fighting infections, dying from it.  I thought about what that would do to my family and I caught myself feeling guilty for even being high risk, even though that was clearly not my fault. Of course, we took every precaution possible. We didn’t leave the house except for medical-related appointments/picking up prescriptions (which for me is often) or my spouse leaving to get groceries. Of course, masks were always on. The disinfectant wipes, spray and hand sanitizer we had been accustomed to utilizing as part of our daily routine to keep me from becoming sick (pre-COVID), could no longer be found. There was no prioritization of these items for those like me who were in the highest risk of death category. Another reminder of how my health conditions and being high-risk really was irrelevant in this pandemic war. The lives of those like me, who are considered high-risk, was going unseen and this added a undertone of depression to my daily life that played like background music in my head, all the time. I would try to keep myself busy and think positive, but it was and still is very hard. Friends posting photos of themselves mask-less enjoying life as normal, arguments on the news derived from speculation rather than science and even individuals attacking me personally for simply encouraging people to wear masks for the sake of people like myself, all pulled on me like a heavy weight of woe. A person in my own town even went as far as to tell me that if I die, that is God’s plan and I should just accept it. As a 44-year old mother of three, I disagreed. To realize that some valued their “social lives” more than my “actual life” was beyond hurtful, not only for myself, but for my family as well. My teen daughter shared with me that a boy she knew had commented that he didn’t care if people died from COVID as long as his family didn’t die. He said, “Sick people and old people are going to die. I don’t care as long as it’s not my family.” He didn’t realize he was talking to someone with both a mother and younger sister who were considered high-risk and how much his comments hurt her. Every eight weeks, I would (and still do) leave on my trip to the hospital for my regular infusions and testing. I tear up each time, including yesterday, as I hug my spouse before leaving. Those tears come from the knowledge that no matter how careful I am, going into a hospital environment during a pandemic, as someone who is immune-suppressed and unvaccinated, is a dangerous risk. Now as the possibility for better days is here with vaccines, I am yet again feeling that pain of not having my risk factors matter in the efforts to save lives. In the county I live in, I am not currently able to get a vaccine. When I try to make an appointment for a vaccine in my area, I am disqualified from being able to at this time specifically because of two items on their questionnaire. Do you have a serious allergy to any medications, food or latex? Yes, I do. Do you have a medical condition or take medications that may weaken your immune system? Yes, I do. If these questions did not exist, I would qualify for a vaccine in my area at this time since one of my professions falls under the category of a teacher. Essentially, the very reasons why I am high risk for severe COVID-19, are the reasons that are being used to prevent me from getting a vaccine. Not only does this not make sense, but it is unethical and discriminatory, especially when high-risk individuals are getting vaccinated in other cities and states right now. I have family and friends that have been able to get the vaccine, and every time I hear that one of them has, I have an instant feeling of happiness and relief for them. But it is always followed with the sadness of the reminder that I cannot get one and the fear that comes with wondering when I will be able to. Another part of this struggle for me personally has been the comments from government leaders who spread misinformation about COVID facts including discouraging mask-wearing, as well as the somewhat cryptic information from trusted health organizations. CDC, for example, states on their website, “…individuals who take immune suppressant medication or therapies, might be at an increased risk for severe COVID-19.” However, they also go on to say, “they should be counseled about the unknown vaccine safety profile and effectiveness in immunocompromised populations, and the potential for reduced immune responses and the need to continue to follow all current guidance to protect themselves against COVID-19.” Essentially, what this tells us is they are aware that people like me are at the highest risk for severe complications, including death from COVID-19, but that because testing of the vaccine was not widely done on individuals like me, there’s no clear evidence to suggest how effective vaccines would be. All of this information leaves me in a deep black hole of fear.  I know there is a light somewhere at the end, but I just can’t see it yet and honestly, I really need to. I feel myself being swallowed by all of the uncertainty. Throughout this entire year, I have done my best to stay positive, take things one day at a time, appreciate the life I still have and remind myself to just hang on a bit longer. I can only imagine there are many others like me who have felt abandoned as a person with a high-risk condition or disability during this pandemic. Whenever I write anything, whether it be a script or an article like this, I always do so with the goal of writing something that can somehow help others. With that being said, here are my three things to remember about individuals who are high-risk for severe COVID-19 that I hope you take away from my story. 1.  If you are someone who is high-risk, immune suppressed, chronically ill and/or disabled and you have felt undervalued or forgotten about during this pandemic, please know your feelings are valid, you deserve better and you are not alone. 2.  Regardless of how you feel about masks, please wear them while in public.  Please remember that when people who are at high risk see you not wearing a mask, it makes them feel like you don’t value their life. It hurts. 3.  Although most people have some degree of fear regarding catching COVID-19, for those who are in the high risk for severe COVID-19 category, dying is a real concern. Please consider what that must feel like and if you know someone in this category, give them some extra support. Let them know you are aware that this is a hard time for them, you are there for them, and you do value their life.

Rape Survivor From Netflix’s ‘Unbelievable’ Shares Her Thoughts on the

On Sept. 13, Netflix released its latest true crime series, “Unbelievable,” based on the true story of rape survivor Marie who was wrongly accused of filing a false report. In a series of tweets, journalist Ken Armstrong, one-half of the reporting team that first told Marie’s story, shared how Netflix’s version of “Unbelievable” got it right for sexual assault survivors and why it provided Marie some closure. Though Netflix’s version of “Unbelievable” is fictional, many of the facts in the story follow what happened to the real Marie after she was raped in 2008. When male detectives don’t believe Marie, she recants and is charged with filing a false claim. Two female detectives states away take on a serial rapist and bring Marie’s perpetrator to justice. Susannah Grant served as the series’ showrunner. Journalist Armstrong, who earned a Pulitzer Prize alongside co-writer T. Christian Miller for reporting on Marie’s story in 2015, took to Twitter to share his thoughts on the newest telling of the story, along with sharing Marie’s thoughts. “In @Netflix’s #Unbelievable, Marie is a teen who reports being raped,” Armstrong wrote on Twitter. “I was one of the reporters who first told Marie’s full story. To me, Marie is not a character. She is someone who trusted me with her story, painful as it was. Here are Marie’s and my thoughts on the show.” In @Netflix's #Unbelievable, Marie is a teen who reports being raped. I was one of the reporters who first told Marie’s full story. To me, Marie is not a character. She is someone who trusted me with her story, painful as it was.Here are Marie’s and my thoughts on the show:— Ken Armstrong (@bykenarmstrong) September 16, 2019 He continued, adding Netflix’s eight-part series was the fourth telling of Marie’s story, in addition to his original reporting, an episode of “This American Life” and a book: In the show’s 1st episode, Marie, after reporting her rape, goes to the hospital for an exam. In the scene, we learn how many swabs are taken. Where they’re taken from. And what Marie is told after—that she might start thinking of killing herself. Each detail is accurate. I know, because I’ve read the real-life medical report. The scene is clinical, unadorned…and powerful. Susannah Grant, the series’ showrunner, wanted to capture how an investigation can become its own form of trauma. To do that, she let the facts speak for themselves. 3/ I know, because I've read the real-life medical report. The scene is clinical, unadorned…and powerful.Susannah Grant, the series' showrunner, wanted to capture how an investigation can become its own form of trauma. To do that, she let the facts speak for themselves.— Ken Armstrong (@bykenarmstrong) September 16, 2019 He said when he learned of Netflix’s “Unbelievable,” he and Miller were concerned about how the show’s creators would treat Marie and her story. “Reporters become protective of stories. We want their lessons to come through,” Armstrong tweeted. “That’s why I say that to me, Marie is not a character. Jeff Mason, the detective who charged Marie with lying, is not a character. He is a cop who sat with me and owned his mistakes, horrific as they were, and I got lucky: Unbelievable’s cast and crew, it turned out, were protective of the story, too.” 6/ That’s why I say that to me, Marie is not a character. Jeff Mason, the detective who charged Marie with lying, is not a character. He is a cop who sat with me and owned his mistakes, horrific as they were.— Ken Armstrong (@bykenarmstrong) September 16, 2019 Armstrong went on to explain how each member of the cast, including Kaitlyn Dever as Marie, Merritt Wever who plays investigator Karen Duvall and Eric Lange as Detective Parker, took great care in preparing for their roles. Of Lange, Armstrong wrote, “He could have made his character a cartoon villain. But he didn’t. Because the man he played wasn’t.” 10/ @MrEricLange was cast as the lead detective in Marie's case. He could have made his character a cartoon villain. But he didn't. Because the man he played wasn't.— Ken Armstrong (@bykenarmstrong) September 16, 2019 He also pointed out Netflix’s “Unbelievable” maintained all the original lessons found in Marie’s real story, including “the misconceptions about trauma,” “the confrontational tactics misused by the police in Washington” and “the triumph of police teamwork in Colorado.” 12/ When I did see the series, the lessons were all there:—The misconceptions about trauma—The confrontational tactics misused by the police in Washington—The triumph of police teamwork in Colorado— Ken Armstrong (@bykenarmstrong) September 16, 2019 Marie reached out to Armstrong to share her thoughts on “Unbelievable” as well. “Two weeks ago I got a call, from Marie. She told me she had just watched the series,” Armstrong tweeted. “Watching it was hard, she said. ‘I did cry quite a bit,’ she said. But she had decided she wanted to and was glad that she did. She called the show ‘excellent.’” 17/ Two weeks ago I got a call, from Marie. She told me she had just watched the series. Watching it was hard, she said. “I did cry quite a bit,” she said. But she had decided she wanted to and was glad that she did. She called the show “excellent.”— Ken Armstrong (@bykenarmstrong) September 16, 2019 Armstrong added: I asked Marie if I could share her thoughts on Twitter. She said that would be fine. She brought up one scene in particular—in the first episode, in which she’s confronted by police and recants. Marie has told me before that it can be a struggle for her to put her feelings and thoughts into words. In that scene, she said, Kaitlyn Dever captured her struggle. ‘It was, like, perfect,’ she said. 19/ Marie has told me before that it can be a struggle for her to put her feelings and thoughts into words. In that scene, she said, Kaitlyn Dever captured her struggle. “It was, like, perfect,” she said.— Ken Armstrong (@bykenarmstrong) September 16, 2019 Marie also told Armstrong she felt the show accurately represented her story and how it impacted others in her life, including two of her foster moms who initially didn’t believe her rape allegations either. Armstrong said: The series shows how two of Marie’s former foster moms doubted her account. Both later apologized to her. Marie forgave both. She kept ties with both. After finishing the series, Marie called both, to reassure them: The show doesn’t demonize you. She encouraged both to watch. For Marie, watching the work of the detectives in Colorado, 1,300 miles from where she had been attacked, reinforced a sense she’d had since first she learned about them: ‘I felt like they were my guardian angels, looking out for me.’ 21/ For Marie, watching the work of the detectives in Colorado, 1,300 miles from where she had been attacked, reinforced a sense she’d had since first she learned about them: “I felt like they were my guardian angels, looking out for me.”— Ken Armstrong (@bykenarmstrong) September 16, 2019 Oftentimes media representations of sexual assault survivors miss the nuances and difficulty of surviving a sexual assault, the process of reporting an assault and how, to an uninformed eye, trauma can make a survivor seem like an unreliable narrator. However, when done right, a film like “Unbelievable” can provide sexual assault survivors a sense of unexpected closure, as it did for Marie. Armstrong tweeted: “And watching the last episode, watching the re-creation of the Colorado detectives closing in, provided Marie something she didn’t expect. ‘Seeing him get put away, that was closure for me,’ she said.” 22/ And watching the last episode, watching the re-creation of the Colorado detectives closing in, provided Marie something she didn’t expect. “Seeing him get put away, that was closure for me,” she said.— Ken Armstrong (@bykenarmstrong) September 16, 2019 You can find Armstrong and Miller’s original telling of Marie’s full story on ProPublica below. 24/24 And sign up for @ProPublica’s newsletter for alerts on whatever big investigation comes next: https://t.co/gRkzoQvLQV— Ken Armstrong (@bykenarmstrong) September 16, 2019

15 Tips for Disneyland With a Chronic Illness or Disability

When you live with a chronic illness, you still yearn to be a part of the regular world. You still want to enjoy life, and it is important to have hobbies, activities, and events to look forward to. Unfortunately, sometimes having a chronic illness makes these things seem impossible when quite often they are still possible if you are willing to make modifications and compromises. My family has always been one of those crazy Disney families. You know the ones with annual passes, matching T-shirts, and all those must-know secret Disney tips. We go to Disneyland many times throughout the year, and it has become an important part of our family’s traditions. Even though I have struggled with chronic illness since childhood, worsening as I became older and older, my family and I have made it a mission to not allow my declining health to take away from our Disney adventures. We have however needed to make some modifications to ensure that I was not only still able to participate and have a good time but that we could all have a good time together. 1. Pick the right time to go: There are several websites that can assist you with predicting crowd levels for the parks on specific days, and that will give you further information in regards to the best times to visit the parks. If you have the flexibility, I would definitely recommend visiting the park on the lower crowd level days. Maneuvering a wheelchair/scooter through a crowded park can be difficult. Also, some chronic illnesses may be negatively affected by large crowds of people. If crowds do not bother you, this may be a non-issue for you, but if you can attend on a lower crowd level day, I would recommend that. 2. Don’t try to do it all in one day or even two: Disneyland and California Adventure have grown so much. Trying to accomplish either park in one day is almost impossible for an average family but for someone with chronic illness, it’s downright crazy. Also, keep in mind that even though the park may be open that day from 8 a.m. to midnight, do you think your body could handle going nonstop all day? Make sure to be honest with yourself and your family/friends about what you can really handle. Keep in mind the weather, crowds, etc. My recommendation, especially for those traveling a distance, would be five days. This would allow for two days at each park and one rest day somewhere in the middle to relax at the hotel. I understand that this would not work for everyone. If you have limited time, try to sit down and plan out which rides/shows are on your must-do list and be OK not doing everything. 3. Pack accordingly: If you have a chronic illness, you probably already know all about the “art of packing.” Make sure you pack appropriately. I recommend a backpack because they are easy for members of the family/friends to grab quickly while still allowing them to be hands-free to assist you on and off rides. Also, most backpacks will fit on the back of a wheelchair/scooter. Make sure to bring all of your medications, a bottle of water for taking your meds, hand sanitizer and wipes.  If you have conditions where nausea can be an issue or you need to take meds with food, some packaged snacks such as crackers can be useful. If you plan on going on any water rides, a poncho or extra change of clothes may be good. It’s not fun to be sick or in pain but being wet, sick and in pain can be really uncomfortable, especially in the winter months. 4. Bring lots of hand sanitizer and disinfectant wipes: Disneyland may be known as the happiest place on earth, but it is also one of the germiest. I have become sick on many occasions after a trip to Disneyland, even ending up in the hospital for a week once with such a severe infection. I take immune suppressant medication, and I am very susceptible to germs. I know some people may read that and think I am crazy for even going to Disneyland and you know you may be right on that. However, there are some things that bring us so much joy that we do them even when they are difficult or come with risks. Because I am at such a high risk of catching something at Disneyland, my family has to take a variety of precautions. We use disinfectant wipes on all the tables when we sit down to eat, and we sanitize everyone’s hands after every ride. For me, I also avoid touching rides as much as possible and wear a mask as well. 5. Be prepared for the walk into the park: One thing that may surprise you is the walk into the park. If you plan on driving to Disneyland, please be advised that even with accessible parking, there is walking involved and if walking is not an option, you may need to bring your own wheelchair, walker, etc. When you park in one of the Disney lots, you will need to walk to the tram pick up area. How far this walk is will depend on where you are parked, but it can be a bit of a trek for someone with chronic illness, even with a disabled parking spot. Also, once the tram arrives at the park, you will need to walk from the tram drop off point to the park entrance or wheelchair rental (which is located next to the entrance to Disneyland, outside of the park). Again, this can be a difficult walk for someone with chronic illness. If you are staying at an offsite hotel, they may offer a shuttle to the park, but most of the shuttle drop off/pick up points are still a good distance from the entrance. You may also be surprised by how long the walk is from the Disneyland Hotel and Disneyland Paradise Pier Hotel to the parks. The very nice and very expensive Disneyland Grand California is the closest with an entrance straight into California Adventure but keep in mind that if you need to rent a wheelchair, you will still need to walk all the way to the Disneyland entrance to get it. You can bring your own wheelchair or scooter as well which may be a better solution for you if walking is not an option at all. 6. Utilize the Disability Access Service (DAS). With this option, you are set up with a service that will register you as a guest that cannot stand in lines. You present your ticket at various kiosks throughout the park where they will assign you return times for rides. Essentially you will still have to wait the same length of time for a ride, but you do not have to wait in the regular line. This option is good if your issue is standing but it will not help you out in regards to walking the park. If you would like to go with this option, you will first need to go to either City Hall in Disneyland or the Chamber of Commerce at California Adventure and explain your need to one of the cast members. Individuals utilizing scooters or wheelchairs are not required to have DAS established. 7. Don’t be afraid of the wheelchair: For as long as I could, I would utilize DAS to avoid standing in lines, and I would still walk the park. Over time this became harder and harder as my diseases progressed. The first time I utilized a wheelchair was a very hard decision for me but one I really had no choice in. My disease has progressed to a point where I just can’t walk very far/stand very long. At first, I felt almost like a failure but the truth is I am not weak for needing a wheelchair, I am strong for knowing what I need and taking care of myself so that my family and I can still enjoy something we love. People do stare a little. Unfortunately, people can sometimes be a little ignorant about who needs a wheelchair and when you don’t have a cast on and you are clearly not 90 years old, some people may question it. They may think you are using it to get on rides quicker and avoid the lines. What people may not realize is that when you are in a wheelchair at Disneyland, you don’t get to skip lines. You will get your ticket marked with a return time for the ride and come back at that time. The return times match the wait times on the lines. So while yes, you are not waiting in the line, you are still waiting the same amount of time. In California Adventure, the rides were all made to be more accessible, so wheelchairs can actually go through the regular lines so again, you are still waiting just as long as everyone else. I also usually wear a T-shirt that promotes awareness of one of my diseases or other topics related to chronic illness. Quite often my family will also wear awareness shirts. I do believe this helps prevent a lot of the judgmental looks. I have actually noticed very few of them personally. At the end of the day though, you need to do what you need to in order to take care of yourself. If people do give you uncomfortable looks, try not let it get to you. Remember that you are there to have fun! I have two additional tips when it comes to renting a wheelchair. Tip one is to bring a pillow or two, especially if you have any condition that affects the back or hips. The Disney wheelchairs are very durable but not very comfortable. Tip two is if you are immune suppressed at all, make sure to wipe off the entire wheelchair with a disinfectant wipe before sitting down. If you prefer, they also rent scooters. 8. It is OK to wear a mask: As previously mentioned, I am quite immune suppressed, so I need to wear a mask when I am around crowds, on planes, etc., especially during cold and flu season. You can purchase disposable masks or washable ones. I have found that some of the adult masks are too big for me, so I found some child masks that fit my face better and guess what, they are Disney! 9. Plan for breaks: Even though you may feel pressured to keep going and going so that you don’t miss anything, it is vital that you take time for breaks for food, water, rest, taking medications, etc. Also, you may want to discuss the need for breaks with the individuals you are attending the park with prior to arriving so that they understand how important breaks are for you. Perhaps there are some rides that are not as important to you that others in your group may attend while you take a break. 10. Utilize Fastpasses: Disneyland and California Adventure both offer the Fastpass feature for a large number of their rides. You can utilize Fastpass Distribution points near the entrances of select attractions at both parks (see the park map or App for more info). Fastpass entitlements are available on a first-come-first-serve basis and are not guaranteed. Look for the Disney Fastpass Distribution sign near the entrance of a participating attraction.  If the return time will work for you, insert your valid Disneyland Resort admission ticket or Annual Passport into the Fastpass machine. The machine will generate a receipt with your return time window. You would come back to the ride at that time. When you purchase the Disney MaxPass feature, you’ll be able to make Disney Fastpass selections right from your phone using the Disneyland App. You can still utilize the Fastpass option even while using a wheelchair/scooter or DAS options. Utilizing these options together will assist you with seeing more attractions, especially if you coordinate the areas of the park you are in. 11. Utilize the train, Main Street cars/buggies, and Monorail: If you are walking the park, there are several ways to get to different parts of the park while avoiding walking. The walk from the front of Main Street near the park entrance to the end of Main Street near the castle may not seem that far, but it is crowded, and it is still a considerable walk for someone with chronic illness. There are a variety of transportation options down this street such as the horse-drawn streetcar, omnibus, jitney or fire engine. Available options do vary based on crowd levels and time of year. One of my favorite iconic Disneyland activities is the train (Disneyland Railroad). The Disneyland Railroad makes stops at several of the Disney “lands” going in a full circle around the park. The trains are scheduled to arrive every five to 10 minutes at most times throughout the day, offering you a fun and comfortable way to get around the park. Guests must navigate steps when boarding and disembarking the train. If you are planning on going to downtown Disney for dinner or you are staying at the Disney Hotel or Disney Paradise Point Hotel, the Monorail is a convenient way to get to this area from the park and back. Pick up the Disneyland Monorail inside the park in Tomorrowland or at the Downtown Disney District. The Monorail is a high-speed but comfortable approximate 13-minute ride. 12. Know your food options: In my personal opinion, I believe that Disney actually does a really good job with their food options in comparison to other amusement parks. They offer a large variety of options including many healthy choices. My best advice is to go to their website and research the food options when planning your trip. You can also bring in your own food from home with some limitations. Please reference the Prohibited Items section of the Park Rules for a list of items, including food containers and beverages, not permitted in either of the Disneyland Resort theme parks. Disneyland does offer a complimentary picnic area conveniently located outside the Main Entrance. My family actually looks forward to the food at Disneyland. Although they do have the typical fried theme park food, they also have many other healthier comfort food options. My family loves the clam chowder bowls and baked potatoes. For a nicer sit-down experience, the Blue Bayou (the restaurant inside the Pirates of the Caribbean) is always a treat. However, be advised that you will need reservations in advance (plan ahead). Although a little challenging, you can remain in a wheelchair at the restaurant, and they do offer allergy-friendly menus upon request. There are many other food options throughout the parks and restaurants in downtown Disney to choose from as well. 13. Get your accessible version of the map: Disneyland/CA Adventure offer an accessible version of the park map for people with health concerns/disabilities. This version of the map will assist you further in regards to knowing the ins and outs of accessing all the different attractions at the park while disabled. You will need to ask for this map. Usually, they will have them at the entrance and the information stations, but if not you can get them at city hall. 14. Be prepared for a medical emergency: Knock on wood, I have never had a medical emergency occur while at Disneyland but I have been present on a couple occasions when someone else has had one near me, and I have given aid since ironically I have a medical background. Please remember that Southern California tends to be warm. Drink lots of water and prepare for the heat, especially in the summer months. Make sure to have a document of some sort that details your medical history, medications, and allergies in case an emergency occurs. Disneyland/CA Adventure do have onsite emergency medical providers. You can find their location on the park map, or you can ask a Disney cast member to contact them in you need them to come to you. 15. Don’t forget that you deserve to have fun just the same as anyone else: As I mentioned at the start of this article, for my family, Disneyland has been the source of many great memories. Sometimes when you live with a chronic illness, you may think that your presence will be a burden for those around you and that you may keep them from having fun. Please remember that the people that love you will want you to be happy and you deserve to have fun too so get out there and get yourself some mouse ears and a churro and have a great time!

Why Oral Health Is Important for People With Sjögren’s Syndrome

We all grew up learning you should brush your teeth twice a day, floss and see a dentist for regular checkups. We learned that on occasion you might have a cavity that will need to be filled or perhaps crooked teeth that may require braces. For many, this is the extent dentistry concerns will impact their life. However, for me and so many others who live with similar conditions, dentistry takes a far more important role. For us, dental issues are health issues. For example, one condition I have is called Sjögren’s syndrome. It was first suspected that I may have Sjögren’s in my 20s by my ophthalmologist because my eyes were so dry. I have punctual plugs inserted into my tear ducts to make them tear normally and still have to use daily eyedrops. The diagnosis was later confirmed by my rheumatologist, and I’ve been living with Sjögren’s for over 15 years. People who have Sjögren’s syndrome have a variety of health issues. One issue is the inability to produce adequate amounts of saliva. Sjögren’s is also a condition that often accompanies other immune system disorders. For example, I also have ankylosing spondylitis and arthritis, to name a couple. With Sjögren’s syndrome, the mucous membranes and moisture secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva. Sjögren’s can also affect other parts of the body such as the joints, thyroid, kidneys, liver, lungs, nerves and skin. Sjögren’s shares many similarities to multiple sclerosis as well. Saliva contains important elements such as bicarbonate, calcium and phosphate. They not only neutralize plaque acids, but also help repair early tooth damage and decay. If dry mouth persists for months or years, the decreased salivation can lead to many oral complications such as progressive tooth decay, loss of teeth, oral infections and difficulty swallowing. Individuals who live with Sjögren’s syndrome will likely require a much greater amount of dental work than the average person without Sjögren’s. Unfortunately, this does not change the fact that Sjögren’s cruel effect on the teeth is not treated as a healthcare issue. For example, I’ve had to pay at least 40+ thousand in dental care treatments over the years, and that doesn’t include what my dental insurance has also paid. Unfortunately, even very high standard dental insurance is very limited on how much it will cover. As a result, people like me are stuck paying thousands of dollars for procedures that are the direct result of a disease rather than improper dental hygiene, something I work extraordinary hard to maintain. I belong to an online support group for other people who have Sjögren’s syndrome and the topic of dental work comes up quite often. There was one thread recently that I found rather disturbing. Many people were talking about how they were just having their teeth pulled because it was cheaper. One person in particular said that she went to Mexico to have her teeth pulled because it was so much cheaper. I find it so heartbreaking to hear their stories of how they felt they had no other choice but to have their teeth removed and go with uncomfortable dentures because they could not afford the more expensive dental procedures, even though many of these people are still considered rather young. I myself have been very blessed to have been able to afford these procedures, but even still, it frustrates me that I have had to give so much of my hard earned money to dental work. Of course, I would much rather use that money on maybe a vacation, retirement, help at home (since I am chronically ill), kids’ college, etc. Another condition I have that can be affected by dental work is trigeminal neuralgia. Having this disease means that dental work is more painful for me due to nerve damage. I require the highest level of numbing agent and multiple injections, and I usually suffer with much higher levels of pain than the average person having a dental procedure. The pain tends to last longer after a procedure as well. Also, because I take immune suppressant medications, infection is also a huge concern. If all that was not enough to make dental appointments extremely terrifying, I am also prone to airway issues and allergic reactions. I have had an anaphylactic reaction in a dental office before that landed me in the hospital. This was a life-threatening situation that could have been prevented if the dentist had been more cognizant of my healthcare issues (which I did inform him of). I have also had a dental implant surgery go so bad, it ended in a lawsuit. The implant needed to be removed and I required several other follow up surgeries, bone graphs and permanent scarring to my mouth. Another important piece to consider when we’re discussing dental care as a healthcare issue is the fact that there is more and more evidence showing that dental health can have a direct impact on one’s physical health. There’s research showing that poor dental health can contribute to cardiovascular disease, Alzheimer’s, and infertility issues just to name a few. So the big question is, if oral health is so important, how come it’s not incorporated into our physical health screenings and medical treatment plans? How come dental procedures are not covered as part of our healthcare insurance? I personally believe this is something that needs to change. In the meantime, my best advice for anyone who has a health condition that affects their oral health is to make sure you find a dental professional who really knows what they’re doing. Make sure you find somebody who is educated not only about teeth, but about your health conditions that may affect the teeth/mouth or a proposed treatment plan. Even if you have to interview hundreds of dentists before you find the right one, it is worth it to have someone you truly trust and feel safe with. I have had countless dental professionals over the years, probably more than I can count, but there have only been two who have truly treated me with real compassion, showing an interest in my health conditions and making my dental procedures go as smoothly as possible. I’ve had some pretty bad dental experiences as well. Not only did I have the one that ended up in a lawsuit, but I have had several other negative experiences. I had one dentist who actually asked me how long I would live because if I wasn’t going to live that long, it made more sense to do a bridge rather than an implant. He then proceeded to tell me how my disease would likely be fatal right in front of all of his staff. I left that appointment in tears. I will never forget it because not only was I in excruciating pain since that dentist didn’t know how to properly manage pain levels for someone with nerve issues, but my face quickly became quite swollen and bruised from his rough manhandling. All of that discomfort accompanied by the tears resulted in me actually pulling my car over and calling my spouse to come get me because the pain was so severe I couldn’t drive. Now, please don’t get me wrong, even though there are a lot of horror stories out there, that doesn’t mean there aren’t great dental professionals just waiting to be found. In fact I have found two really wonderful dentists in my searches. In conclusion, I hope that some day dental care and healthcare are treated as one. I hope that one day people who have diseases like Sjögren’s syndrome will be able to get the proper care they need on their teeth without having to pay thousands out of their own pocket or setting up GoFundMe accounts. I also hope that in the future, more dentists will take the time to learn about health conditions that may affect a person’s oral health, and they will remember to treat their patients with compassion and sensitivity. After all, our smile is an important part of who we are and we should be able to be proud of it.

Moments of Kindness From Doctors and Hospital Staff

As I write this, I’m sitting on a plane heading back home after having surgery. I flew from Southern California to Northern California to have this procedure done. I am in a lot of pain now, but grateful to be heading back home. I lie across the row of seats on the plane, my legs propped up on my spouse and my back supported with a pillow awkwardly positioned against my chair. As I stare sideways out the small airplane window, I think about how all of the doctors, nurses and others at Stanford really went out of their way to care for me with kindness, and how lucky I am to have such great providers caring for me. My physician explained every step in detail throughout the process, reassuring me along the way. He was also very attentive to my pain levels, which is always appreciated. The support staff were all very kind, checking on me often post-procedure and assuring my needs were all being taken care of. They all made a very painful experience just a little easier, and that meant a lot to me. As I think about the compassion I received during this procedure, I am reminded of all of the people who have cared for me over the years as I have suffered from on-going chronic illness. I appreciate the difference they have made and continue to make in my life. I have met so many incredibly selfless, thoughtful and caring people through this journey and they all hold a special place in my heart. To all those doctors, nurses, medical assistants, receptionists, anesthesiologists, volunteers and other healthcare providers who carry out your duties, not only with professionalism, but with compassion, I thank you. I know at times you must feel unappreciated working long hours in stressful environments. I know your bodies also ache at the end of a long day on your feet, helping others. I know you go home and lose sleep thinking about your patients and how you wish you could do more. I know you deal with people at their worst and at times you must become frustrated when they sometimes take their pain out on you. However, you still continue to do your job with compassion. You go the extra mile to ask your patients details about their lives, such as their jobs, families and experiences, reminding them that they matter. You provide support and comfort to them when they need it the most, even on days you could use some comfort of your own. You help them through the more uncomfortable parts of requiring aid, while doing the best you can to help them maintain their dignity. You do what you can to make their time in your care easier and listen to them because you know they need to be heard. You treat them with compassion because that is who you are, you are a caregiver. There are so many different stories I could tell of healthcare professionals who have made a difference in my life of chronic illness with their kindness. I could probably write an entire book of stories of the compassion given to me. Here are just a few that come to mind. I hope other people with chronic illness will read this and share some of their positive encounters as well. I know we all have plenty of negative experiences too, but being grateful for the positive ones will help us all remember that we are in this together, and there are still compassionate caregivers in this world. The Rheumatologist Who Lifted Me Up When I Was in Pain Because I have severe back, neck and hip pain from ankylosing spondylitis (AS), it can be painful for me to lie on my back, especially on hard surfaces. Unfortunately, with my variety of immune system and neurological diseases, I have and will continue to go through lots of uncomfortable tests and procedures. Many of these tests/procedures will require me to lie on uncomfortable surfaces for extended periods. One such example is back MRIs, something I have had many of. When I was in my mid-20s, I was having a very long back MRI. My rheumatologist at the time had walked me over to the radiology department and he stayed with the tech doing the test. They had to align my body just right on the table before sending me into the MRI tunnel, and I was reminded multiple times to stay perfectly still. About 20 minutes into the test, per usual, the pain was becoming quite uncomfortable. I could feel my legs start to go numb. The numbing is not a soothing one, but a painful punishing feeling. My lower back was burning with constant sharp pain. I fought through the pain for probably another 20 to 30 minutes, but as it was becoming more unbearable, I could feel the tears start to roll down my cheeks. I didn’t make a sound because I just wanted to get through it, although I knew there was a camera on me and they would see my tears. I tried to hold them back, but just couldn’t. The table I was lying on was soon pulled out so they could add contrast to my IV for the next set of scans. As they began to work with the IV, my rheumatologist walked over to me, wrapped his arms around my hips and lifted my back off the table. He was holding my back up off the table while being careful not to change my alignment. I could immediately feel the pain start to drop as he lifted my back off the hard surface. He held me up like that for several minutes even as I could tell I was becoming heavier in his arms. He looked me in the eyes and he told me I was doing really good, that he knew it was hard on me and to hang in there a little longer. This gesture may seem like no big deal, but as anyone with AS knows, taking the pressure off my back, even for a few minutes, relieving some of the pain even just momentarily, meant so much to me. When I think of this moment, I still get teary because I remember how it felt in that moment to know someone knew the pain I was in and wanted to help me. The Woman Who Brought Me a Cheeseburger Another memory that comes to my mind occurred during one of my hospital stays. I remember being unable to eat. Everything made me nauseous. The hospital food was not at all appealing and I felt pretty horrible on top of that, so my appetite was pretty much nonexistent. My pain levels were also affecting my desire to eat. When they would bring my tray, I would usually only eat the crackers. One day a nursing student who had been caring for me walked in with a huge bowl filled with a variety of different types of crackers and he carried several small cans of soda in his arms. I remember laughing a little because he looked so funny coming in with all these items. He put them on my tray and then he pulled out some cookies in a napkin and told me he got them for me from the nurse’s luncheon and they were really good. He told me that he got them special for me since he knew I was having trouble eating. Such a small gesture to some, but it meant so much that he thought to do that for me. During that same hospital stay, a couple days later, I had been moved to a different unit in the hospital. The food was still the same of course and I still wasn’t eating much. One day a woman came to get my tray and she commented that I never eat. I apologized and told her that I really did try but I just couldn’t. She asked me, “What do you like? Do you like pizza? How about cheeseburgers?” I smiled knowing those were not options on the menu and wondered if she was just trying to get me to laugh. She said, “Would you eat a cheeseburger? I am gonna make you a cheeseburger,” and she grabbed my tray and walked out of the room. The next time my tray showed up, it came with a surprise. I slowly lifted the lid preparing myself for one of the usual foul smelling options, but instead there was a cheeseburger. It actually looked and smelled pretty good, like it had come off the grill at a backyard BBQ. There was also a little cup of orange sherbet on the tray. I actually ate that day. The woman brought the same items (not on the menu) each day for several more days per my request until I was well enough to leave. Even though these providers didn’t know me personally, they went out of their way to get me to eat. I will always remember that. Another memory I have is of sitting on the edge of my hospital bed. It had been a very bad day and I felt so mentally and physically exhausted. As I sat on the edge of the bed in tears, one of nurses came over and bent down on her knees in front of me with her hands on my mine. She looked in my eyes and began to talk to me. Honestly, I don’t even really remember what she said. I just remember her eyes looking up at me and her reassuring voice. I remember the way she made me feel, like she cared. She knew I was hurting and she made sure I knew she was there for me and she helped me through a hard day with her compassion. The Hospital Staff Who Clapped for Me The last story I will tell is one that occurred when I was pregnant with my daughter. I don’t know if it was because of all of my chronic illnesses or just luck of the draw, but I had gone through years and years of fertility issues, including miscarriages. After about six years of struggling, I had become pregnant through IVF with twins, but sadly lost one of them. I was at a doctor appointment with my spouse to see how the other baby was doing and to see if she had made it to the next trimester. We were beyond relieved to find out that yes, she was still hanging in there. It was a very stressful appointment to say the least. After I got dressed, my spouse and I walked out of the exam room and into a hallway of very loud clapping. It startled me at first, and then I realized all of the clapping was for us. Lined up all the way down the long hallway was everyone who worked there, doctors, nurses, medical assistants, administrative staff. There were at least 20 if not more people lined up in that hallway clapping for us and smiling and some even cheering. I remember walking down that long hallway and hugging every single person and telling each and every person thank you. It is a moment I will never forget. As someone who lives with so many different health issues, there are so doctors, nurses, medical assistants, pharmacists, specialists, etc. I’ve gotten to know over the years. With this article, I have included a photo of myself with one of my healthcare providers. Her name is Ruth and she is a medical assistant for my neurologist. She has always been so kind to me over the years. She has taken the time to get to know me and ask me about my daughter, how I have been doing, etc. She has had to go out of her way on more than one occasion to track down documents from the hospitals, labs, etc. and she has made sure my medications are always refilled promptly when needed. Like many of my healthcare providers, she has been a compassionate caregiver with a friendly face and a welcoming smile all these years. Not a week that goes by where I am not at a doctor’s appointment, or having a test or a procedure done. Although not all of my experiences with healthcare providers have been positive, I am so thankful for all of those that have been. I appreciate those that have taken the time to get to know me, ask me about my kids, spouse, business, etc. I am grateful for those providers who have gone out of their way to minimize my pain however they can. Thank you for treating me like I matter, for making me smile and showing me compassion. Thank you for making this life of chronic illness a little easier. Please know that you are appreciated and you are making a difference in this world. Do you have a positive experience with a health care provider to share? Let us know in the comments below. Let’s celebrate kindness.

15 Tips for Disneyland With a Chronic Illness or Disability

When you live with a chronic illness, you still yearn to be a part of the regular world. You still want to enjoy life, and it is important to have hobbies, activities, and events to look forward to. Unfortunately, sometimes having a chronic illness makes these things seem impossible when quite often they are still possible if you are willing to make modifications and compromises. My family has always been one of those crazy Disney families. You know the ones with annual passes, matching T-shirts, and all those must-know secret Disney tips. We go to Disneyland many times throughout the year, and it has become an important part of our family’s traditions. Even though I have struggled with chronic illness since childhood, worsening as I became older and older, my family and I have made it a mission to not allow my declining health to take away from our Disney adventures. We have however needed to make some modifications to ensure that I was not only still able to participate and have a good time but that we could all have a good time together. 1. Pick the right time to go: There are several websites that can assist you with predicting crowd levels for the parks on specific days, and that will give you further information in regards to the best times to visit the parks. If you have the flexibility, I would definitely recommend visiting the park on the lower crowd level days. Maneuvering a wheelchair/scooter through a crowded park can be difficult. Also, some chronic illnesses may be negatively affected by large crowds of people. If crowds do not bother you, this may be a non-issue for you, but if you can attend on a lower crowd level day, I would recommend that. 2. Don’t try to do it all in one day or even two: Disneyland and California Adventure have grown so much. Trying to accomplish either park in one day is almost impossible for an average family but for someone with chronic illness, it’s downright crazy. Also, keep in mind that even though the park may be open that day from 8 a.m. to midnight, do you think your body could handle going nonstop all day? Make sure to be honest with yourself and your family/friends about what you can really handle. Keep in mind the weather, crowds, etc. My recommendation, especially for those traveling a distance, would be five days. This would allow for two days at each park and one rest day somewhere in the middle to relax at the hotel. I understand that this would not work for everyone. If you have limited time, try to sit down and plan out which rides/shows are on your must-do list and be OK not doing everything. 3. Pack accordingly: If you have a chronic illness, you probably already know all about the “art of packing.” Make sure you pack appropriately. I recommend a backpack because they are easy for members of the family/friends to grab quickly while still allowing them to be hands-free to assist you on and off rides. Also, most backpacks will fit on the back of a wheelchair/scooter. Make sure to bring all of your medications, a bottle of water for taking your meds, hand sanitizer and wipes.  If you have conditions where nausea can be an issue or you need to take meds with food, some packaged snacks such as crackers can be useful. If you plan on going on any water rides, a poncho or extra change of clothes may be good. It’s not fun to be sick or in pain but being wet, sick and in pain can be really uncomfortable, especially in the winter months. 4. Bring lots of hand sanitizer and disinfectant wipes: Disneyland may be known as the happiest place on earth, but it is also one of the germiest. I have become sick on many occasions after a trip to Disneyland, even ending up in the hospital for a week once with such a severe infection. I take immune suppressant medication, and I am very susceptible to germs. I know some people may read that and think I am crazy for even going to Disneyland and you know you may be right on that. However, there are some things that bring us so much joy that we do them even when they are difficult or come with risks. Because I am at such a high risk of catching something at Disneyland, my family has to take a variety of precautions. We use disinfectant wipes on all the tables when we sit down to eat, and we sanitize everyone’s hands after every ride. For me, I also avoid touching rides as much as possible and wear a mask as well. 5. Be prepared for the walk into the park: One thing that may surprise you is the walk into the park. If you plan on driving to Disneyland, please be advised that even with accessible parking, there is walking involved and if walking is not an option, you may need to bring your own wheelchair, walker, etc. When you park in one of the Disney lots, you will need to walk to the tram pick up area. How far this walk is will depend on where you are parked, but it can be a bit of a trek for someone with chronic illness, even with a disabled parking spot. Also, once the tram arrives at the park, you will need to walk from the tram drop off point to the park entrance or wheelchair rental (which is located next to the entrance to Disneyland, outside of the park). Again, this can be a difficult walk for someone with chronic illness. If you are staying at an offsite hotel, they may offer a shuttle to the park, but most of the shuttle drop off/pick up points are still a good distance from the entrance. You may also be surprised by how long the walk is from the Disneyland Hotel and Disneyland Paradise Pier Hotel to the parks. The very nice and very expensive Disneyland Grand California is the closest with an entrance straight into California Adventure but keep in mind that if you need to rent a wheelchair, you will still need to walk all the way to the Disneyland entrance to get it. You can bring your own wheelchair or scooter as well which may be a better solution for you if walking is not an option at all. 6. Utilize the Disability Access Service (DAS). With this option, you are set up with a service that will register you as a guest that cannot stand in lines. You present your ticket at various kiosks throughout the park where they will assign you return times for rides. Essentially you will still have to wait the same length of time for a ride, but you do not have to wait in the regular line. This option is good if your issue is standing but it will not help you out in regards to walking the park. If you would like to go with this option, you will first need to go to either City Hall in Disneyland or the Chamber of Commerce at California Adventure and explain your need to one of the cast members. Individuals utilizing scooters or wheelchairs are not required to have DAS established. 7. Don’t be afraid of the wheelchair: For as long as I could, I would utilize DAS to avoid standing in lines, and I would still walk the park. Over time this became harder and harder as my diseases progressed. The first time I utilized a wheelchair was a very hard decision for me but one I really had no choice in. My disease has progressed to a point where I just can’t walk very far/stand very long. At first, I felt almost like a failure but the truth is I am not weak for needing a wheelchair, I am strong for knowing what I need and taking care of myself so that my family and I can still enjoy something we love. People do stare a little. Unfortunately, people can sometimes be a little ignorant about who needs a wheelchair and when you don’t have a cast on and you are clearly not 90 years old, some people may question it. They may think you are using it to get on rides quicker and avoid the lines. What people may not realize is that when you are in a wheelchair at Disneyland, you don’t get to skip lines. You will get your ticket marked with a return time for the ride and come back at that time. The return times match the wait times on the lines. So while yes, you are not waiting in the line, you are still waiting the same amount of time. In California Adventure, the rides were all made to be more accessible, so wheelchairs can actually go through the regular lines so again, you are still waiting just as long as everyone else. I also usually wear a T-shirt that promotes awareness of one of my diseases or other topics related to chronic illness. Quite often my family will also wear awareness shirts. I do believe this helps prevent a lot of the judgmental looks. I have actually noticed very few of them personally. At the end of the day though, you need to do what you need to in order to take care of yourself. If people do give you uncomfortable looks, try not let it get to you. Remember that you are there to have fun! I have two additional tips when it comes to renting a wheelchair. Tip one is to bring a pillow or two, especially if you have any condition that affects the back or hips. The Disney wheelchairs are very durable but not very comfortable. Tip two is if you are immune suppressed at all, make sure to wipe off the entire wheelchair with a disinfectant wipe before sitting down. If you prefer, they also rent scooters. 8. It is OK to wear a mask: As previously mentioned, I am quite immune suppressed, so I need to wear a mask when I am around crowds, on planes, etc., especially during cold and flu season. You can purchase disposable masks or washable ones. I have found that some of the adult masks are too big for me, so I found some child masks that fit my face better and guess what, they are Disney! 9. Plan for breaks: Even though you may feel pressured to keep going and going so that you don’t miss anything, it is vital that you take time for breaks for food, water, rest, taking medications, etc. Also, you may want to discuss the need for breaks with the individuals you are attending the park with prior to arriving so that they understand how important breaks are for you. Perhaps there are some rides that are not as important to you that others in your group may attend while you take a break. 10. Utilize Fastpasses: Disneyland and California Adventure both offer the Fastpass feature for a large number of their rides. You can utilize Fastpass Distribution points near the entrances of select attractions at both parks (see the park map or App for more info). Fastpass entitlements are available on a first-come-first-serve basis and are not guaranteed. Look for the Disney Fastpass Distribution sign near the entrance of a participating attraction.  If the return time will work for you, insert your valid Disneyland Resort admission ticket or Annual Passport into the Fastpass machine. The machine will generate a receipt with your return time window. You would come back to the ride at that time. When you purchase the Disney MaxPass feature, you’ll be able to make Disney Fastpass selections right from your phone using the Disneyland App. You can still utilize the Fastpass option even while using a wheelchair/scooter or DAS options. Utilizing these options together will assist you with seeing more attractions, especially if you coordinate the areas of the park you are in. 11. Utilize the train, Main Street cars/buggies, and Monorail: If you are walking the park, there are several ways to get to different parts of the park while avoiding walking. The walk from the front of Main Street near the park entrance to the end of Main Street near the castle may not seem that far, but it is crowded, and it is still a considerable walk for someone with chronic illness. There are a variety of transportation options down this street such as the horse-drawn streetcar, omnibus, jitney or fire engine. Available options do vary based on crowd levels and time of year. One of my favorite iconic Disneyland activities is the train (Disneyland Railroad). The Disneyland Railroad makes stops at several of the Disney “lands” going in a full circle around the park. The trains are scheduled to arrive every five to 10 minutes at most times throughout the day, offering you a fun and comfortable way to get around the park. Guests must navigate steps when boarding and disembarking the train. If you are planning on going to downtown Disney for dinner or you are staying at the Disney Hotel or Disney Paradise Point Hotel, the Monorail is a convenient way to get to this area from the park and back. Pick up the Disneyland Monorail inside the park in Tomorrowland or at the Downtown Disney District. The Monorail is a high-speed but comfortable approximate 13-minute ride. 12. Know your food options: In my personal opinion, I believe that Disney actually does a really good job with their food options in comparison to other amusement parks. They offer a large variety of options including many healthy choices. My best advice is to go to their website and research the food options when planning your trip. You can also bring in your own food from home with some limitations. Please reference the Prohibited Items section of the Park Rules for a list of items, including food containers and beverages, not permitted in either of the Disneyland Resort theme parks. Disneyland does offer a complimentary picnic area conveniently located outside the Main Entrance. My family actually looks forward to the food at Disneyland. Although they do have the typical fried theme park food, they also have many other healthier comfort food options. My family loves the clam chowder bowls and baked potatoes. For a nicer sit-down experience, the Blue Bayou (the restaurant inside the Pirates of the Caribbean) is always a treat. However, be advised that you will need reservations in advance (plan ahead). Although a little challenging, you can remain in a wheelchair at the restaurant, and they do offer allergy-friendly menus upon request. There are many other food options throughout the parks and restaurants in downtown Disney to choose from as well. 13. Get your accessible version of the map: Disneyland/CA Adventure offer an accessible version of the park map for people with health concerns/disabilities. This version of the map will assist you further in regards to knowing the ins and outs of accessing all the different attractions at the park while disabled. You will need to ask for this map. Usually, they will have them at the entrance and the information stations, but if not you can get them at city hall. 14. Be prepared for a medical emergency: Knock on wood, I have never had a medical emergency occur while at Disneyland but I have been present on a couple occasions when someone else has had one near me, and I have given aid since ironically I have a medical background. Please remember that Southern California tends to be warm. Drink lots of water and prepare for the heat, especially in the summer months. Make sure to have a document of some sort that details your medical history, medications, and allergies in case an emergency occurs. Disneyland/CA Adventure do have onsite emergency medical providers. You can find their location on the park map, or you can ask a Disney cast member to contact them in you need them to come to you. 15. Don’t forget that you deserve to have fun just the same as anyone else: As I mentioned at the start of this article, for my family, Disneyland has been the source of many great memories. Sometimes when you live with a chronic illness, you may think that your presence will be a burden for those around you and that you may keep them from having fun. Please remember that the people that love you will want you to be happy and you deserve to have fun too so get out there and get yourself some mouse ears and a churro and have a great time!

Roseanne Barr Says 'Roseanne' Character Killed By Opioid Overdose

Update: As Barr said last month, her character was indeed killed by an opioid overdose. In the episode that aired Tuesday, the story of the Conner family picked up three weeks after Roseanne’s funeral. They all believe she died of a heart attack in her sleep. But then Jackie (Laurie Metcalf) finds out that the autopsy revealed she actually “OD’d on opioids.” Dan (John Goodman) remembers how Roseanne had knee surgery and was taking opioids, though at first he thought she only took them for two days. But then the family realizes she had been stashing pills all over the house, including a bottle prescribed to someone else. Jackie suggests that maybe Roseanne took pills right before going to bed, and “with her health issues, it was enough to stop her breathing.” Roseanne Barr said Monday her titular character, Roseanne, will be killed off by an opioid overdose on the show’s spinoff, “The Conners.” “It wasn’t enough to just do what [ABC] did to me. They had to cruelly insult the people who love that family in that show,” Barr told conservative personality Brandon Straka on his YouTube show “Walk Away.” “Roseanne” was abruptly canceled by ABC in May after Barr posted racist tweets about former President Barack Obama’s adviser Valerie Jarrett. In May, “Roseanne” remake included a storyline about Roseanne (the character) abusing prescription opioids for knee pain. During the episode, Roseanne says she’s taking the medications for pain but begins getting the drugs from friends when her prescription runs out. Her husband also offers to get a prescription for his back, so she can have more. Many people who abuse opioids do not get addicted because of their prescriptions — it’s typically from prescriptions of those close to them. Studies have shown between less than 1 percent to 12 percent of chronic pain patients become addicted to opioids. While the percentage of people with chronic pain who become addicted is low, the latter study found that 21 to 29 percent of chronic pain patients misuse opioids. According to the Centers for Disease Control and Prevention, more than 200,000 people died in the U.S. from prescription opioid overdoses between 1999 and 2016. ABC told The Mighty it would not confirm the character’s fate. Although the network has not confirmed anything, John Goodman, who played Roseanne’s husband Dan, said in late August her character was going to be killed off. ABC announced the spinoff series in June, and said Barr would have no financial or creative involvement in the new series. “The Conners” premieres Oct. 16.

Cynthia Germanotta on How We Can Talk to Children About Mental Health

Do you talk to your kids about mental health? So do I! At least that’s what I thought I was doing. My husband, Joe, and I always made an effort to talk to our girls about how they were feeling and the problems they were facing as they were growing up. But, with the benefit of hindsight and a healthy dose of honesty, I realize now we may have been listening — but we weren’t always understanding. As a mom, it’s hard to watch your children experience the painful emotions that we all feel sometimes – especially when they’re grappling with their mental health. My own daughter, Stefani (who most of you know as Lady Gaga), began to struggle with anxiety and depression when she was an adolescent and there were many times I felt helpless. My instinct was to turn to what I had been taught growing up, relying on my generation’s emphasis on grit to get you through the tough times. While learning you are strong enough to cope with life’s ups and downs is a vital lesson, I realize now my approach wasn’t always applicable to what my daughter was going through, and that my response when she tried to share how she was feeling wasn’t always helpful. I had this instinctive desire to protect and fix which, while well-meaning, was more of a response as to how I might deal with things. And I know I’m not alone in this realization. My team at the Born This Way Foundation and I have had the honor of talking with young people and parents from communities across the country and from all walks of life. From conversations with middle school students in Miami and homeless LGBTQIA+ youth in Oklahoma, dinners at our restaurant in New York City, to more systemized research we’ve conducted, one common theme continues to emerge: We don’t just need to talk about mental health within our families — we need to have better conversations about mental health. We need to learn — as adults who care about the youth in our lives — how to have conversation that are open, honest, ongoing and judgment-free . Recently, we asked 20 young people and 20 of their parents and guardians to tell us about their lives, relationships and mental health through online diaries, answering a series of questions each evening over the course of several days. Through these diaries, the disconnect that too often exists between parents and young people when it comes to talking about serious issues including stress and mental health became clear. Here are some of the lessons we learned: Parents underestimate the stress their children are under. For example, one young woman said, “I feel understood in most departments. My parents understand my willingness, playfulness, and humor best [but] I feel misunderstood when it comes to anxiety and emotions, it’s hard to dissect for them.” At the same time, parents are concealing their own stress from their children. We heard from parents and guardians who said things like, “My sons are too young to understand,” and, “I don’t want to stress them out, it’s my job to protect them from these things,” when describing why they don’t open up about how they’re feeling. Young people are particularly unwilling to open up when they fear being judged. In the words of one young man, “I’d tell my parents more secretive stuff if I knew they wouldn’t judge me or make me feel stupid.” Overall, parents think they’re having conversations about mental health with their children, but a lot is getting lost in translation. For example, there was the father who talked confidently about how he and his daughter, “discuss dealing with everyday stress, how it can be managed by rest, healthy food and exercise.” However, his daughter shared how, “I’ve talked to my parents about anxiety and stress. My mom is a bit more understanding. My dad sometimes doesn’t always recognize the issue.” Another young woman described how, “I’ve talked to my parents about anxiety, but sometimes I think they don’t believe me,” while her mother told us, “I’ve talked to my daughter about anxiety issues, she sometimes has mild panic attacks. I encourage her to go to counseling at college.” So what, as parents and other adults who want to do better for the young people in our lives, are we supposed to do? Here’s some suggestions based on what we’ve heard from youth: Resist the temptation to judge. We’re all carrying the biases of our particular generations, life experiences, opinions and beliefs. But if we want young people to be honest with us, we have to prove to them we’re willing to set all that aside and help — or just listen. And when we’re able to do that, it can make all of the difference. As one young woman told us, “I recently had to confide in my mom about a serious problem. She didn’t lecture or judge me, she just helped me take care of it. I think that started me seeing her more as someone I could go to, not just a ‘mom.’” Be honest about your own struggles. Is it any wonder that young people feel like adults don’t understand how they’re feeling when those adults are never honest about their own stress or anxiety? We need to be brave enough to be honest with young people — so that they understand they’re not alone, so that they can see that life might not get easier as you get older, but you can get better at coping, and so that they have role models for healthy conversations about emotional well-being. Keep talking. Get rid of the idea that talking about mental and emotional health is a “check the box” conversation you only need to have once. This isn’t “a talk,” it’s an ongoing dialogue. So keep talking about the serious stuff and the fun stuff. The awkward stuff that makes you both blush and the sensitive stuff that makes you both cry. The sources of joy and the sources of stress. But most importantly, just keep talking and just keep listening. I know all of that is easy on paper and — more often than not — difficult in practice. So get comfortable with the idea that you won’t always get these conversations right (no one does!) and commit yourself to keep trying anyways. I’m still working on it every day. ( Looking for an invitation to start practicing better mental health conversations in your family? Check out our #BeKind21 challenge . It’s an opportunity to build habits of kindness that will support the wellness of yourself and those around you.) We want to hear your story. Become a Mighty contributor here .

How I Balance My Opioid Use to Manage Chronic Pain

Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication. Like many pain patients, I have been dealing with tremendous fear in regards to my future due to the fact that pain medications are currently being taken away from pain patients. Pain patients are unfairly being penalized because there are so many struggling with addiction in our county right now. We have an epidemic of addiction in this country that needs to be dealt with. However, I do not believe taking pain medication away from chronic pain patients is not the answer. In medicine in general, treating patients with the one-size-fits-all approach is an ongoing problem. You may have 10 individuals with the same disease with completely varying symptoms and degrees of pain. Treatment plans should generally be more individualized. Pain management is no exception to this theory. I have dealt with severe pain my entire adult life and I have had quite a bit of experience with pain medications. Taking pain meds as prescribed (generally several times a day) may cause physical dependency. Physical dependency is not comfortable but it is also not the same as addiction. I have taken control of my pain management and I am able to utilize pain medication safely and comfortably because of that. I believe other pain patients can and probably already do the same. I believe that exploring options for better utilization of pain medications is key. In my 20s, I was taking a pain medication prescribed by my physician about every four hours. I required this medication to deal with my severe pain but I did have concerns. I started to notice that when I didn’t take it on schedule, I would begin to feel very sick. I would get a fever and chills, become nauseous and very irritable/uncomfortable. Once I took my dose, I felt better.  The medication treated my pain and allowed me to function and be productive. However, I was concerned that my body was becoming physically dependent on this drug and I asked my physician about my concerns. His reply was that this particular drug was not even classified as a controlled substance and not to worry about it. Side note: The drug I am referencing was re-classified as a controlled substance in 2014. I no longer have this physician and haven’t for a very long time. There have been periods in my life where my pain has been less and I have needed to come off pain meds (specifically pregnancy). I have been able to do so successfully. During pregnancy, immune system diseases, such as mine, may show improvements in pain. This is not the case for all women but for me, my pain was not quite as severe during pregnancy. I still had pain during pregnancy but the day-to-day level was more manageable. I had stopped pain medications completely prior to getting pregnant since I was utilizing fertility measures where my pregnancies were planned. When I decided to become pregnant in my late 20s (not long after having that discussion with my physician about my concerns of physical dependency), I knew I would need to stop taking all of my medications. It was a very scary decision and I did fear that I may not be able to do it but I wanted to try. I told my rheumatologist that I had decided to stop taking my anti-inflammatory, biologic and pain medications. I told my neurologist, cardiologist and gastroenterologist that I wanted to stop taking those medications as well. I did this over the course of many months and for the most part it was pretty smooth. My heart medication was the last to go and my heart did require some close monitoring during pregnancy. Not all of it was smooth, however. I will never forget the nightmare of coming off of my pain meds. I tapered them down over the course of a week. I remember the miserable nausea, fevers and the feeling like you want to peel your own skin off. I remember taking anti-nausea medication and Benadryl which helped only mildly. The first week was absolute misery but the uncomfortable feeling went on for a month. I experienced horrible pain as well until I became pregnant about 10 months later. After that experience I was absolutely certain that I could never go through coming off pain medication again. Once my daughter was born, my pain levels began to slowly rise again. My other health conditions began to get worse as well and slowly medications were once again added. I tried everything to deal with pain. I changed my diet, I was prescribed a TENS device, I tried massage and acupuncture. You name it and I tried it. My doctor tried a variety of medications including low dose chemo but my pain got worse and worse. I couldn’t sleep. I had trouble doing the things I once loved, such as playing softball or teaching a class. My daily pain levels were becoming unbearable and pain began to once again rule my life. My pain had a significant negative impact on my life and my ability to function. I finally gave in to trying pain meds again. This time I was prescribed a different pain med, one I have now taken responsibly for about 10 years. When I decided I needed to utilize pain meds again, I knew there was no way I would ever allow myself to be put in the same situation as I had in the past. I would never want to feel the discomfort of physical dependency and I would never want to go through the agony of withdrawal. I made the decision to take control of my pain management. Here are some of the ways I have accomplished this : 1. I only take pain meds when my pain is a 6 or higher on the 1-10 pain scale, or if I know it will be a particularly pain-causing day. (An example may be that I will be standing at a gathering/function for hours that day). 2. I do not take pain medication on a prescribed schedule. I take them less often. The only exception to this is when I am bedridden from illness or surgery and then I do need to take them on schedule. 3. I allow for flexibility based on my symptoms and what I need to accomplish that day. There are days where I may not even take any pain meds at all. 4. I am responsible with my medication. My medication is locked up just the same as any valuables would be. I do not share my medication or leave it where others may access it. 5. I take my medication for physical pain only. I do not take pain medication as an escape from my life. 6. I take only enough pain meds to make my pain tolerable and rarely even feel any sort of “high” from taking them. 7. I follow the rules set forth by my physician such as getting all my medication at one pharmacy and telling him when new medications are added. 8. I utilize a physician who is proactive in my pain management and knows how to prescribe responsibly. He does see me on a regular basis and makes himself available to me when I have questions or concerns. 9. I utilize other treatment options for pain as well. I currently utilize a variety of other non-narcotic medications and non-medication treatments as well. My pain medication is only part of my pain management. 10. I have learned how to balance and taper as needed. (For example, if I need to take more medication because I am bedridden, I taper slowly back down after I am able to get up and be mobile again.) I needed to come off pain medication again briefly about three years ago (again due to infertility treatments/pregnancy) and was able to do so easily that time and without any issues. I tapered down my dose slowly over the course of about two weeks. I utilized medications such as acetaminophen and anti-nausea medication and had a very easy transition. I believe the reason this experience was so much easier than the one in the past was because I had taken control of the amount of pain medication I take. My body had adjusted to the increase and decrease balancing plan I had created. In conclusion, I believe the key to helping individuals with pain is to remember they are individuals. We need to expand beyond the one-size-fits-all approach to medicine. We need to stop blaming chronic pain patients for the drug addiction problem in this country. Nobody should be brought to the point of considering suicide because they cannot get relief from their pain. Taking pain meds away from chronic pain patients is not the answer. Coming up with safer guidelines and providing more support and education to doctors and patients is vital. I am a patient on pain medication. I take my medication responsibly and have zero signs of addiction. Pain medication allows me to function and contribute to society. Pain medication is not going to take my life; pain medication is saving my life. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via BananaStock.