Putting My Health on the Line Due to Inaccessible Toilets

For 250,000 disabled U.K. residents, going to the toilet is a military operation. Only you never hear about it. Why? Because talking about going to the toilet isn’t exactly fun. Sure we joke about those type of Facebookers who write a status about every single move they make — including going to the loo! For the majority, going to the toilet is a private, dignified human need that is straightforward and requires no second thought. Only those 250K I just mentioned are living a very different existence, merely because going out of the house means they’re venturing away from the only accessible toilet that meets their needs.

I am one of those 250,000 and for 14 years I’ve been too stubborn and proud to stand up (no pun intended) and say  surely I should be able to go out freely and not have to worry about the next time I need the loo, on top of all the access issues I and every other wheelchair user faces on a daily basis!

So what exactly is the problem? Let me explain…

It’s wonderful that you will find a “disabled toilet” in nearly every public place. It is. They consist of a toilet with grab rails, and sometimes space to park a wheelchair, but nothing else. This means if you are unable to self-transfer (physically stand or shuffle from your wheelchair to the toilet) then these toilets are not accessible for you. Due to having rods put in my back in 2002 at age 14, I lost the ability to self-transfer from my wheelchair. It was a very necessary surgery, but it wasn’t without its risks. One of which was that I’d lose a bit more strength on top of my already evident muscle weakness due to my muscular dystrophy. That surgery extended my life at a cost, but I’m not embittered by it. Though I do wish things were easier! From this point on I could only be transferred via a hoist or person lifting me. Lifting somebody with MD who also has metal rods in their back can be painful and risky. Not to mention for the PA/carer lifting a grown adult compared to a child can be a health and safety issue… So hoisting it was!

Campaigning for changing places.I quickly realized that if I drank normally, I’d need to leave wherever I was abruptly and get home as fast as possible to go to the toilet. I tried to persevere and due to my stubbornness of not wanting to let toileting dictate to me when and for how long I left the house, I developed a system. I did what disabled people do best, adapting to the hand we’ve been dealt, but again it came at a price. A price that didn’t raise its ugly head until many years later…

In order to go out and enjoy life, through trial and error via what they term “Pee Math,” I learned the only way to go 9-5 without being so desperate I had to abort wherever/whatever I was doing at the time was to limit my fluid intake to a measly 1-and-a-half child-size cups per day. It was a very slow adjustment to get down to that little liquid. If I’d have gone cold turkey, it would have backfired. So over those two years I’d mastered measuring the golden liquid content my bladder could hold all day. I learnt “tricks” to get past the thirst, such as applying lots of lip balm, chewing gum to produce more saliva and distracting myself whenever extreme thirst hit. I thought I had it all figured out. Family would give me a pat on the back and joked about my “bladder of steel!” Foolishly I thought this way of living was sustainable.

The let down once I was finally home and had access to the toilet was excruciatingly painful. My bladder often couldn’t relax; it’d spent all day holding it in and now it only let go in painful dribs and drabs. Often I’d sit for half an hour, holding my lower stomach in pain on the toilet. Yet once it was over I’d persuade myself it wasn’t that bad — because look at all I got to do out and about today! I’d convince myself it was OK to live in pain. It was better (in my mind) than being confined to my home, just for access to a loo I could actually use. Wouldn’t you do similar? A new day would start and I’d do it all over again, and again and again…

Five years into this way of living, it finally started to take its toll on my health. I was 19 and kept getting back-to-back UTIs. I was constantly at the GP for more antibiotics. I’d unintentionally done it to myself, and was what doctors termed “socially incontinent,” meaning I had full bladder control but lacked the ability to physically go to the toilet without a hoist and a PA. The infections were relentless. I was fever struck, hot flashes and constant urgency started to now ruin my ability to go out. Now I had to stay at home by the toilet or risk having public accidents. Now I was in constant UTI-related pain, not just when on the toilet. I saw people less and less. I even opted to wear pads at one point, just so I could try to go out.

My confidence was literally in the toilet and depression clouded my spirit. I am an active person and being chained to a toilet was like my disability was getting one up on me, when all I’d ever felt up to then was acceptance for the way I am. I’m very easygoing by nature and take most things in my stride, but this was beyond me. I saw no way out other than to stay at home, wear nappies or get a hospital-style catheter. What kind of options are those for a young woman?

It wasn’t until I was 21 that “Changing Places” was becoming known through word of mouth in the disability community. Everybody, including me thought this was a huge breakthrough. Finally an accessible toilet for those who need more than just grab rails! Changing Places toilets are spacious. The toilet is clear on either side for carer support if needed. You have a ceiling track hoist that runs over the toilet and across the room over an adult-size adjustable changing table. Basically my exact setup at home, only I get changed on my bed then get hoisted as my bathroom isn’t big enough for its own changing table. The first Changing Places loo I ever used was on a trip to the Trafford Centre and it was amazing! To be able to go shopping and literally “nip to the loo” like everyone else was so empowering. Using that toilet made me feel less disabled then I’d felt in a long time!

Sadly, these toilets are costly and although disabled people are campaigning up and down the country, writing letters to local councils and MPs to get at least one of these accessible toilets in every town/main attraction/shopping centres etc., the reality is they are few and far between. In fact, most able-bodied people don’t know they exist at all.

In the meantime the Trafford Centre Changing Places toilet is my local accessible loo and it isn’t exactly local at two hours away. I’m lobbying as a North West Trailblazer to hopefully convince my local council to install one in the town centre etc. but I’m running out of time. Life goes on despite when you endure.

Due to now developing a high resistance to six common antibiotics that target UTI’s and having the “cillins” off the table to me as I’m allergic to all in the penicillin family, I am having to take drastic action. My urologist doesn’t know what will happen when I become resistant to the low dose continuous antibiotic I am on now. At best it’s taken away the burning sensation, but my body is still in a constant state of infection. I’m feverish on and off throughout the week, I’m fatigued, I’m weak and I’m done! Reaching out to others with MD who have lost the ability to self-transfer I learnt there’s a way out of this cycle through getting a suprapubic catheter. Keep in mind I’ve been outright refusing a standard catheter (that goes through the urethra) since I was offered it as a pre-teen as catheters cause infections too, plus I didn’t want a bag attached to me constantly. I still have full bladder function after all. It’d be foolish to knowingly take away an ability my MD hasn’t made me lose just because it’s an easier toileting option. I heard my fellow MD friends out and I realized, this wasn’t about pride anymore. This was about toileting impinging on my quality of life and I felt an SPC would give that and my dignity back. Something I feel I haven’t had for years…

But what’s the difference between a standard catheter and a SPC? A standard catheter (or ISC) goes directly into the urethra and drains your bladder continously into a bag strapped onto your stomach or leg you try to hide under your clothes. A SPC is a catheter that goes into your bladder through a small incision or stoma into your navel area. You have the option of a “flip flo” valve and still feel when you need to urinate. You literally go into bathroom, park your wheelchair next to the loo, hold your catheter tube over the loo and flip the valve to drain. Or you can attach a bag. This gives the user independence in that they no longer have to transfer and some people can manage to operate the valve themselves, therefore becoming in control of their toileting needs again. With a SPC you still have the option to have a wee normally should you want to as well.

I’m now on the waiting list for this operation, a voluntary surgery that is medically unnecessary. The catheter will give me a new lease on life and control over my toileting for the first time since childhood, but there are risks with any surgery with MD. My respiratory system is compromised so I cannot have a general anesthetic; I’ll be awake during the procedure and I need to be on my BiPAP. There is also the risk that due to pain or complications I could end up in ICU with difficulties breathing through my limited lung capacity. Yet these risks with surgery for the SPC are just as risky as carrying on the way I am, eventually running out of treatment options for the infections and potentially ending up with sepsis. That is the bottom line.

All this because I can’t use a standard disabled toilet. It’s mind-boggling. It’s mine and 250,000 other disabled persons’ reality. I bet you can’t fathom going out for a drink with friends and staring at your glass thinking “If I drink the rest, I’ll have to go home to the toilet.”

It’s been a long 14 years but this is me taking control back the only way I can.

Full Source: disableddatingclub.com

A Conversation With Two Black Women Suicide Attempt Survivors

I recently had the privilege of talking to two Black women suicide attempt survivors, Kellee Nicole, my former college roommate at the University of Pennsylvania — where she was a varsity cheerleader and her bipolar disorder was misdiagnosed for years — and T-Kea Blackman, a mental health advocate fighting to destigmatize and encourage conversations about suicide and mental health in communities of color with a mental health podcast called Fireflies Unite.

An edited, condensed version of our conversation appears below.

On the Black-White Suicide Paradox

According to the Centers for Disease Control and Prevention, Black women have (and have always had) the lowest rates of suicide in the country compared to white men, Black men and white women.

Kellee: “I don’t believe that statistic. Maybe the different ways Black women are dying aren’t considered suicide, because from what I know and the research I’ve done, we are dying… And if you counter in suicidal ideation and all the women who attempt and don’t report, Black women are probably up there near the top. I never went to the hospital after any of my attempts.. And then there’s all the self-destructive behavior that may not look like a suicide attempt but in reality, it is.” 

T-Kea: “I agree. Even though we may die by suicide at lower rates, I would say that we struggle internally more and we probably have thoughts of suicide more, but we just may not act on it for reasons like we hear in church, that if you die by suicide, you’re gonna go to hell… But I truly believe we are dying on the inside, because I know before I had my attempt, I felt like I was dead on the inside.” 

On Being a Strong Black Woman and Performing Wellness

Kellee Nicole cheerleading

Kellee Nicole, photographed by Wildersee

T-Kea: “We are the ones who can’t have a mental illness because we have this narrative of the strong Black woman. Yeah, we’re strong, we’re Black, but that doesn’t mean we should have to carry all this weight on our own. Why wouldn’t we seek help? Our first instinct is to pray about it or to go to a church. I’m not saying we shouldn’t do those things but there’s a double standard. If someone has AIDS or cancer, you would tell them to go to the doctor, but because my mental illness is emotional and mental, I’m told to pray about it. It’s not given the same amount of severity. We need to understand and accept that cancer and mental illness are both illnesses that can both essentially kill people.”

Kellee: “I could go on about the performance of not being depressed or feeling suicidal for years. It takes so much mental energy that it just drains you and makes you, or makes me rather, even more depressed… I believe I learned how to hide my symptoms through cheerleading, a sport I started when I was 11 years old. You are always told to smile and be energetic and this usually overshadowed my depressive symptoms.”

On Mental Health and the Black Church 

T-Kea: “The Black church can be very helpful, but it can also be very detrimental. Growing up, I was very religious… church provided me with some sense of hope and relief from my dad’s struggles with drug abuse and selling drugs, and my mother being in a verbally and physically abusive relationship… Once I was diagnosed with depression and anxiety, and I went to my church family, they were very supportive. They would say things they believed to be helpful, like a pastor told me I should talk in tongues for 20 minutes a day and people said I’d go to hell if I died by suicide, as opposed to telling me to go see a therapist. I do believe their hearts were in the right place. I just think they are uneducated and ignorant when it comes to mental health.

…My religion at the time of my attempt played a huge role. I was at the point where I didn’t care because I was like there’s no way I’m supposed to sit here in all this pain. When I get into in an episode, I also experience body aches and body pains in addition to the emotional and mental heaviness of it. I was struggling emotionally, physically and mentally for months at a time and I was not getting any relief, so at the point, I didn’t care what a pastor or a book said because I was hurting so much. A person can only take so much. And so I believe that there are a lot of other women who may be in that situation. While they might not have the attempt, I’m pretty sure lots of women have actually have the thoughts.”

Kellee: “I grew up Christian. My family is devoutly Black Southern Baptist. I was taught to believe that praying to a God or a Higher Power would somehow ‘fix things,’ or at least make them more tolerable, so religion, for me is closely linked to my mental health. Telling me that I wasn’t getting ‘better’ because I wasn’t ‘praying hard enough’ was not a fun experience, or knowing that I could never tell my family about being queer out of fear of losing any financial support. Now I identify with atheism, which has made me more tolerant of all forms of mental health treatment, even the types not ‘professionally’ prescribed.” 

On Myths, Shame and Storytelling 

T-Kea: “Telling my story is very liberating because when I was first diagnosed with depression and anxiety, I was really shameful. I thought it was a character flaw, that there was something wrong with me, and that I shouldn’t be feeling this way because of my accomplishments and accolades. We’re taught to associate material things and accomplishments with whether or not someone can have a mental illness, it’s like, you have money, why are you depressed. Yes, money can impact your mental state if you don’t have enough of it and it can certainly be triggering… but you can have all the money in the world, you can have all the degrees in the world, but you can still be broken… So for me, I felt really ashamed, but once I started talking about my story, I said, wow, this is very liberating.”

Kellee: “I guess I find telling my story therapeutic in a way. It reminds me that these things really happened and sometimes hearing other stories helps, but sometimes it just pushes me into darker places.”

T-Kea BlackmanOn Suicidal Ideation, Misdiagnosis and Events Leading Up to Attempt 

Kellee: “I went to therapy from freshman year of college until the week before I left school, and they misdiagnosed me for four years, and it only made my condition worse, and it made my life at Penn hell. I was on different medications, none of them worked, none of them helped, some of them made me worse. I took two or three semester-long breaks from school. One day, I was depressed about something, really, really depressed. I took all of my [medication] at once, and I sent a message — maybe a cryptic email, wasn’t really a goodbye or suicide note, it said ‘live your best life’ or whatever — and basically didn’t expect to wake up the next morning, but I did. I was part of the school gospel choir, and we just happened to be singing at this church that morning, so, I went and sang at the church and acted like nothing was wrong… I just wanted to be around friends.” 

T-Kea: “I first started showing symptoms or signs at like 13 or 14, and throughout high school, suicide ideations would come and go, and I would just suppress it. Then in college, the same thing would happen… I think what was triggering in grad school was that I was dealing with financial stuff, how I’m going to pay for school, how I’m going to get a loan and pay it off, and then just trying to simply survive day to day, groceries and my car and those day-to-day things you need to survive. In addition to working every day and being a full-time grad student, my mom was still in this abusive relationship and my siblings were calling me and telling me about fights and things that were happening. Even though I wasn’t there, I still had all of that sitting on my back. 

It’s only so much a person can take… It just got to the point, around 24, 25, when I just couldn’t take it anymore. I was tired of suppressing all of this stuff. I was experiencing body aches, the anxiety was getting really bad, and not being able to get out of bed, and I was just like, I can’t do this anymore, and so that’s what led to it. I texted some friends that I probably wouldn’t be here by the time they find me. I started drafting a letter to my siblings because I’m the oldest of seven. I was hoping I would just fall asleep and wouldn’t wake up, but it just so happened my friend ended up calling the police and they got there in time and they rushed me to the hospital.” 

On Suicide as Selfish and Suicide as Self-Care 

T-Kea: “I don’t view suicide as selfish because for me, it wasn’t that I wasn’t thinking about other people. I love other people and I know other people love me. I always knew that. I have a great support system. I’m so blessed between family and friends. My situation wasn’t that I didn’t think anyone cared. I was tired. I was drained of dealing with all of that emotional and mental heaviness. For someone to say that another person is selfish, you’re not the one in that person’s body, you don’t know what they’re feeling. You wouldn’t say that to someone with another condition, Oh, you’re selfish for dying.” 

Kellee: “A lot of people think that not dying from suicide is God giving you a sign that you’re destined for greater things or something like that, but being an atheist, my thought is that suicide [can be seen as] one of the biggest forms of self-care because even though things may seem temporary or for others they may appear temporary, we don’t know how long that person has been suffering.” 

On Supporting a Loved One With Mental Illness

Nineteen out of 20 people who attempt suicide do not die. How do we help those who struggle with suicide ideation and/or have attempted suicide? 

T-Kea: “It’s not necessarily what you say but your approach… One friend was very dismissive when I told her about my attempt, and when you’re in that state, to have someone dismissive, that could have been the very trigger. But they didn’t think about that… A friend for me is someone who can take me when I’m doing great and you can take me when I’m low. You can’t just pick and choose when you want to be bothered with me because that’s not what a friendship is.” 

Kellee: “When you know someone has suicidal thoughts or depression, check on them every day, even if it’s just a text, even if they don’t respond. There could be that one day they respond… But just the constant knowing that someone is out there, that someone cares, is a good reminder that someone is thinking about you.”

 On Each One, Teach One

Kellee: “I honestly don’t believe there’s a reason I’m still alive… but since I am, I may as well write about it. I plan to write about how both gymnastics and being a cheerleader over half of my life shaped my mental illnesses, both positively and negatively, from pre-adolescence to early adulthood to now. Being a college athlete and involved with Division I sports while being improperly treated for Bipolar I disorder was a disastrous environment, hence me never graduating from Penn. Basically, I want to be a cautionary tale.” 

T-Kea: “I want to start building a community for my people, people of color, Black people, to be able to have these conversations and to create a safe space for people to feel like their life matters and their story matters. A lot of times we want to feel validated, we want to feel important, we want to feel like people understand us. Through the podcast, my writing and speaking opportunities, campaigns and programs, I intend to do just that. If I can just help one person, then that one person will help someone else, and it will be like a ripple effect.”

For more stories about mental health in the Black community, visit So Black and Blue.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.

We want to hear your story. Become a Mighty contributor here.

Lead photo provided by contributor

Full Source: disableddatingclub.com

9 Apps That Can Help People With Chronic Illnesses Track Their Periods

If you’re of a certain age, you may remember the days of marking your period on a calendar — maybe coming up with your own system of symbols and colors to keep track of your symptoms and when it was supposed to arrive. Well, thanks to smartphones, your desk or pocket calendar is no longer needed. There are tons of apps (many of them free) designed specifically to track not only when your period will start and end, but also symptoms, birth control methods, fertility and overall health.

The challenge in choosing which of these apps to use when you have a chronic illness is that many are not really designed with you in mind. Many apps place a large emphasis on fertility, which you might not want if you aren’t able to get pregnant. Not all apps make it easy to track a wide range of symptoms, medications or irregular periods.

The Mighty complied 9 period-tracking apps that offer features uniquely suited to those who have chronic health conditions that may affect their period. Let us know in the comments if you’ve found any other apps to be helpful in keeping up with your cycle.

1. Spot On Period Tracker

screenshots from spot on app

Spot On comes from the experts at Planned Parenthood, and it offers tons of features that can help you get a better sense of what’s going on during your period. You can keep track of symptoms like acne, cramps and fatigue as well as manage birth control methods and where you’re at in your cycle. You can also find resources and health information from Planned Parenthood.

Download Spot On for free from iTunes and Google Play.

2. Flutter

screenshots from flutter app

Flutter calls itself the “app for painful periods,” and was designed with endometriosis and reproductive conditions in mind. Its aim is to identify signs of trouble in your cycle early on so you can seek treatment. You can track your period and symptoms every day as well as the location, severity and type of pain you’re experiencing. There’s also a medication log, birth control reminder and information about endometriosis.

Download Flutter for free from iTunes.

3. Day After

screenshots from day after app

Day After lets users not only record their physical symptoms, it also incorporates a personal diary feature so you can get a holistic view of your health and wellness. Mark your diary and period tracker with stockers for moods, symptoms, sexual activity and life events.

Download Day After for free from iTunes.  

4. Clue

screenshots from clue app

Clue bills itself as gender-neutral and inclusive, as exhibited in its pink-free and flower-free design. It uses an algorithm that gets “smarter” the more you use the app to track things like flow heaviness, moods, cervical fluid, pain and more. Clue can also import and sync data from other apps like Apple Health. The journal Obstetrics & Gynecology named it the top free menstrual tracking app in 2016, so if you’re looking for a scientist-approved app, Clue may be it.

Download Clue for free from iTunes and Google Play (Clue Premium subscriptions start at $6.99 per month). 

5. Period Tracker

screenshots of period tracker app

Period Tracker offers a huge array of graphics you can use to track symptoms and moods. You can also create custom icons for aspects of your health you want to track that aren’t already included. A month-view calendar allows you to easily glance at your current cycle. Charts for period length, cycle length, symptoms and more provide a longer-term view. If cute design features help bring a bit more positivity to your period, you may prefer this app over the more no-nonsense Clue and Groove (below).

Download Period Tracker Lite for free from iTunes and Google Play.

6. Groove

screenshots from groove app

Groove sets itself apart with its ability to customize exactly what you want to use the app for. You are asked to select your “goal,” like “track my cycle” or “avoid pregnancy,” which allows you to avoid seeing information (for example, fertility) that isn’t helpful to you. You can also indicate things like if you have irregular periods and your sexual orientation. The graphics are clean and gender-neutral if flowers and hearts aren’t your thing. Ten percent of all proceeds are donated to Femme International, an NGO dedicated to helping the health and safety of women in developing communities.

Download Groove for free from iTunes.

7. Cycles

screenshots of apple watch, ipad and iphone using cycles app

This app is uniquely accommodating to irregular periods since you can simply adjust the dial feature to indicate when your period starts. However, it doesn’t have the mood and symptom-tracking capabilities of other apps. Cycle’s most defining feature is its ability to loop your partner into your data (this does require an in-app purchase). You can invite him or her to view your data and even send them reminders, so they know when you might need extra support. Women with endometriosis and other reproductive health issues may enjoy giving their partner a closer look at their cycle.

Download Cycles for free on iTunes.

8. Phendo

screenshots from endo app

Created by Citizen Endo, a Columbia University-based project dedicated to discovering more about endometriosis, Phendo is designed specifically for women with endometriosis. By joining Phendo, you’re also joining a Columbia University research study about endometriosis, so the data you enter will be anonymously sent to researchers. Another bonus: since the app is tailored to endometriosis, it doesn’t include the fertility component that most other apps do. “In a way, the fact that the disease has not been well studied is an opportunity here because the field is wide open,” Phendo co-creator Noemie Elhadad told The Mighty about the research possibilities of the app. “We can really do something.”

Download Phendo for free from iTunes.

9. Flo

screenshots from flo app

Flo utilizes artificial intelligence to make its predictions about your cycle and it claims to be highly accurate even for those with irregular periods. It also offers recommendations if it notices recurring symptom patterns, or if you live with conditions like polycystic ovary syndrome or endometriosis. There’s also a lifestyle and fitness component so you can import data from other health apps and log factors like weight, PMS symptoms, sleep and sex drive.

Download Flo for free from iTunes and Google Play.

Full Source: disableddatingclub.com

Behind the Vacation Photos of a Person With Chronic Illness

Did you see my vacation pictures?

Yes, I went on vacation.

Yes, I have a chronic illness.

And yes, I am still in pain.

I learned years ago to fit my chronic illness into my life, and not my life into my chronic illness. So the vacation to Disney World that I planned with my best journey friend nine months ago just happened – even in the midst of a rheumatoid arthritis (RA) flare. I am not going to lie, it was not easy and I felt pain every day I was there. But every bit of pain was worth the memories I made.

Mariah Carey sings the words, “She smiles through a thousand tears.” And no statement could be more fitting for a chronic illness warrior’s vacation photos! Like any person, the pictures we post on Facebook are our best ones. No one, healthy or sick, wants to post unflattering vacation photos on social media. Before I posted my vacation pictures, I studied them like a teenage girl trying to impress a crush. My checklist included questions like:

Does my prednisone weight gain show too much?

Are my fingers noticeably swollen?

Is my smile on point?

After posting my vacation photos, I knew I would hear a lot of different statements – but one I knew I would hear more than once haunted me, “Are you feeling better? It looks like you are.”  Nothing could be further from the truth and posting my best vacation photos failed to show all of the truth of my vacation.

The truth is that chronic illness does not take a vacation. Chronic pain does not take a vacation. Disability does not take a vacation. And, rheumatoid arthritis does not take a vacation. I packed it all up and took it all with me to Florida. My medications, calls from nurses, calls from the pharmacy, and immune dysfunction all made the trip with me. And getting to Florida took extra preparation from my medical team. A week before I left, my rheumatologist worked tirelessly to patch me up by providing 12-15 injections to help with my flare. Also, taking a vacation meant an increase in prednisone. My doctor doesn’t discourage me from living life or vacationing, especially since he and I both know that life is uncertain when one has rheumatoid arthritis.

Many with chronic illness have a behind the scenes story concerning their vacation photos, the stuff we try to hide behind the smile that we post on social media. I want to give you the behind the scene look at my recent photos and share what they did not show. Hopefully, my candidness will clear up any misconception that the smile in the picture gives.

The writer and her friend standing together on vacation.

So what did my pictures fail to show? For starters, the flight to Florida from California was a long flight. While the healthy world congratulated my husband and I on finding a direct flight, my body suffered from a long period of travel without the opportunity to walk around. Sometimes layovers are a welcomed break as it gives me time to move around beyond a plane seat.

Another behind the scenes photo would be the physical ordeal that required us to request for a room upgrade because my joints and lungs couldn’t make the 10 minute walk to our “garden view” room. And, once we arrived in our “upgraded” room, I found myself unprepared for the wood floors. Walking on wood floors with arthritic feet is as painful as walking on rocks with bare feet.

While I posted several pictures at the park, the un-posted picture would show a need to request a disability assistance pass. That request is always awkward because my illness is invisible and there is fear that I may be seen by others as “taking advantage” or “abusing the system.” It causes anxiety at the start of any vacation at a theme park. Also, because I have RA, mornings are very tough and that morning pain doesn’t take a break when on vacation – so many morning hours were often lost while I “thawed out.” Often the first thing my husband and I did upon arriving at the parks was have lunch. That is why there are more posted night photos than daytime vacation photos. I joke a lot about being a vampire because my friends see more night photos than day photos, and that’s the reason why.

I didn’t post the pictures showing my constant need to stop and rest, which was the result of my current flare state. I looked for benches and areas I could sit and rest. And medicine doesn’t take vacation either. I probably should have bought a ticket for my traveling pharmacy. I still have to take my medicine while on vacation, so pictures fail to show that I was actually eating “that” or drinking “this” while I took prednisone so I could keep going.

My Starbucks from the parks photos were a daily staple and pretty popular with my friends and family. But, what you didn’t see was a day I cried into my Starbucks coffee because it was the day my body decided it had enough with my vacation shenanigans. Yep, I cried into my Starbucks while at the happiest place on earth.

There is so much more than the above examples, but I’m certain that you are starting to see the pattern. This pattern is all too common for so many in my shoes. Like I said before, we fear posting vacation photos for the misconception they may give. Just because our vacation looks painless or healthy in the photos we post, it probably is not the total truth. The pictures we choose to post are putting our best “sick” foot forward!

So, to the friends who have seen my pictures and wonder if I’m feeling better, I’ll just say this: my mind and spirit were energized, but my body will probably be in recovery for a few more weeks – and that’s OK. I made some really wonderful memories and brought home some pretty awesome Mickey ears!

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Full Source: disableddatingclub.com

15 Cover-Up Brands for When Your Illness Makes You Break Out

One of the “fun” (read: annoying) side effects of chronic illness is the havoc it can wreak on your skin. Maybe your medications cause you to break out, or you’re highly sensitive to sun, or you sweat frequently, leading to clogged pores. Or, maybe you have a diagnosed skin condition, like psoriasis or rosacea. While you should never feel like you have to cover up the challenges you’re having with your skin, some of us enjoy experimenting with makeup, or feel more confident after using a bit of foundation or concealer.

If you’re a makeup enthusiast with chronic illness, you may not be able to throw on any brand you find at the drugstore. The last thing you want is for the makeup you use to cover up blemishes to actually create more, so gentle makeup that doesn’t have harsh chemicals or scents, is your friend. We asked our chronic illness Mighty community to share which makeup brands they use that are ideal for people with sensitive skin. Check these out if your illness leads to skin challenges.

We hope the products below, all recommended by our Mighty community members, help you or a loved one in your health journeys. Just so you know, The Mighty may collect a share of sales from the Amazon links on this page.

1. Bare Minerals

bare minerals liquid concealer

“Bare Minerals has been great for me. Lasts ages and I don’t need loads of it to have good coverage. Perfect for when the red splotchy rash appears on my cheeks or my skin gets bad,” said Evelyn Shepard.

Buy the liquid foundation featured above for $34 from Bare Minerals.

2. Lauren Brooke Cosmetiques

lauren brooke concealer

“It’s a natural brand with lots of organic ingredients. I’m chemically sensitive and this brand does not make me react or break me out. It has helped improve my breakouts and heal my skin faster,” said Sarah Langer.

Buy the creme foundation featured above for $32 from Amazon.

3. The Body Shop

body shop tea tree bb cream

“Tea tree tinted moisturizer and their eyeliner pen and waterproof mascara are the only things I can ever use that don’t leave my skin bright red/flaky/spotty!” said Nae Waters.

“The Body Shop liquid foundation is fab and never irritates my skin (which is irritated by everything),” recommended Hannah Dickinson.

Buy the BB cream featured above for $16 from The Body Shop.

4. Dr. G

dr g bb cream

“I use a BB cream. Dr. G’s Daily Safe BB Cream. Doesn’t irritate my super sensitive skin, has medium coverage, and has the great benefits of a Korean skincare brand. It doubles as lotion and sunscreen so it makes mornings super easy,” said Jenn L. Bullock.

Buy the BB cream featured above for $32 from Amazon.

5. Jane Iredale

jane iredale bb cream

“Jane Iredale has been the only makeup that has never irritated my skin. Even with other mineral makeup the eyeshadow always gets me because of ingredients like Carmine. The BB cream has great coverage for rosacea. They will exchange anything that doesn’t work for you or send samples,” said Ramona Rhae.

Buy the BB cream featured above for $48 from Jane Iredale.

6. Physicians Formula

physicians formula instaready bb cream

“I use Physicians Formula Instaready BB Cream. It has a nice consistency and it had the highest SPF (30 to 40 SPF depending on what type you get) I could find that didn’t make my face feel and look greasy. Since I have a high sun sensitivity it helps my face to handle what little sun it gets,” said Marisa Powers.

Buy the BB cream featured above for $14.99 from Amazon.

7. IT Cosmetics

it cosmetics cc cream

I like IT cosmetics. The CC cream feels light, covers well and natural with sunscreen. I have sun sensitivity with lupus so sunscreen is a must and the two-in-one is fast and easy!” said Jessica Clark.

Buy the CC cream featured above for $42.99 from Amazon.

8. Maybelline

maybelline fit me foundation

“I have extremely sensitive skin. I’ve used Maybelline Fit Me Foundation with SPF 18 Octinoxate Sunscreen for many years and have never had an issue with it!” Amanda Gates said.

Buy the foundation featured above for $7.99 from Maybelline.

9. Mary Kay

mary kay liquid foundation

“I have had the best luck with Mary Kay. No strong fragrance or smell. And it actually makes my skin feel better,” said Kathy Zabliski.

Buy the liquid foundation featured above for $19.97 from Amazon.

10. Kat Von D

kat von d tattoo cover concealer

“My disease causes flaming red spots on my face. Kat Von D tattoo concealer works beautifully and doesn’t irritate my already inflamed skin,” Debby Ritenbaugh Brown recommended.

Buy the tattoo concealer featured above for $15 from JC Penney.

11. Fenty

fenty foundation

“Fenty has been the first liquid foundation that hasn’t made me itch terribly,” said Christa Riter.

Buy the foundation featured above for $34 from Fenty.

12. Hourglass

hourglass vanish stick concealer

“Foundations I use are Kat Von D and Fenty. Both cover so much and are not hard on my skin. However, Hourglass Vanish Stick is nothing short of sorcery and is so gentle on the skin,” said Amy Perry Archibald.

Buy the “vanish stick” featured above for $46 from Sephora.

13. Cover FX

cover fx creme foundation

“Cover FX concealer available at Sephora. It was designed for [people with skin conditions and burns]. It feels so light on my skin. It’s pricey so I only wear it for special occasions,” said Mandy Russell.

Buy the foundation featured above for $28 from Cover FX.

14. Wet N Wild

wet n wild concealer stick

“Wet N Wild has always worked for me… it’s relatively cheap, great coverage, comes off easily and doesn’t make you break out,” said Stella Cavender.

Buy the concealer featured above for $3.99 from Wet N Wild.

15. Younique

younique powder foundation in compact

“Younique… The only make up I’ve been able to use regularly for about 15 years!” said Emma Hill.

Buy the pressed powder foundation for $32 from Younique.

Full Source: disableddatingclub.com

10 People With Disabilities Share Their Secrets for a Successful Relationship

Valentine’s Day is upon us and love is in the air! But for many people with disabilities, finding a loving and supportive partner can be a challenge. Finding love with a disability often means overcoming society’s judgments about what makes a person attractive and sexy. Joyful images of roses and romance contrast with the knowledge that the disability community faces disproportionately high rates of domestic violence. But when we look beyond all that, we can see plenty of reasons to be hopeful.

Society is beginning to recognize how much people with disabilities have to offer in all aspects of life — as employees, volunteers, friends, parents, lovers and partners. People with disabilities do find love, and have relationships and families, just like everyone else. Some of us partner with able-bodied people, while others choose another person who has a disability or chronic illness — and both options are valid. What matters is finding the right person who will love us for who we are — someone who doesn’t ignore or disregard our disabilities, but sees them as just one part of us.

We asked Mighty readers on social media to share their love stories with us, how they met their significant other and their tips for sustaining a strong relationship when one or both partners has a disability or chronic illness. We noticed many common threads: honesty, good communication and the recognition that relationships aren’t something to take for granted. Loving someone, disabled or not, requires hard work and commitment. Here’s how 10 couples have lived and loved with disabilities.

1. Be Honest About Your Disability

“My story is unique. I had severe rheumatoid arthritis for 6 years before I met my husband in 2004. I work full-time and was [employed] at the time. My RA affects all aspects of my life even though it is under control. However, I didn’t know if I could have kids and germs are a serious issue. I was completely honest in my online profile and he wasn’t afraid. Life isn’t always easy but he is an amazing  husband and father to our kid and husband.” –Stephanie DeNicola Turner

2. Have a Sense of Humor

Mario and Kim.“My fiancé Mario and I have been together for 15 years. We both were born with a condition called spina bifida. We met playing wheelchair basketball in a class at our local community college, two years before our first date. It is by far the best relationship I’ve ever been in… we are, above all else, best friends. We have so much in common it’s almost scary, we have inside jokes between us, and always laugh when we’re together. Most importantly, we are each other’s rock. We’re always there when we need each other, and we can talk about anything and everything.

Two years into our relationship, Mario had to go on hemodialysis three days a week. Since then, we both have spent time in and out of the hospital, sometimes with long recovery periods. We joke around about taking turns in the hospital, and how we sometimes skip our turn, because the other goes in back-to-back. One of the many things Mario has taught me is to keep a sense of humor. He always makes me laugh. The other thing I’ve learned from him is to have patience and appreciate the little things in life. He’s the most amazing person I’ve ever met, and I feel so blessed he chose me as his life partner. It makes me angry that we cannot get legally married. Mario has to keep his MediCal, and his only source of income due to not being able to work. But the one thing the government, nor anyone else, can’t take away from us is our deep love for each other. Our commitment to each other, through the good times and bad, is the most important thing in our lives, and I know in my heart that will never change.” — Kim Ezell

3. Your Family Is Your Rock

Lora with her husband.“My husband and I have been together 33 years. I had polio at the age of 3. I walked with a limp for the majority of my life until [I developed] postpolio syndrome around the year 2000. I’ve been using a wheelchair since, and have had four surgeries since 2011. My husband is my rock and my family are awesome people who care for me with all the love in the world.” — Lora Duguay

4. Love With All Your Heart

Lorna Elaine with her husband.“I have been with my able-bodied husband for almost 30 years. I have peroneal muscular atrophy (CMT) and have never been able to walk normally. We met at 19 and 20 and were married 2 years later. I was told that having children would put me in a wheelchair. We had four and I am still standing. My husband loves my soul. He has seen me through many challenges both physical and emotional and is the finest person I have ever known.My advice is to do as he does – to love the soul. To love with trust, vulnerability, and complete abandon because life is short and the opportunities for real love are few and far between.” — Lorna Elaine

5. Take Care of Each Other

Courtney with her husband at their wedding.“I married my husband in 2015, after knowing him since eighth grade. He knew I was disabled, with many chronic conditions including fibromyalgia and PCOS, and a few mental illnesses. I knew he was disabled due to prior cancer treatment making him lose ribs and parts of a lung, and with PTSD. We also found out later he has fibromyalgia. The best advice I can give is to help each other as often as possible, help each other get dressed, bathe, help each other emotionally with little things, get each other coffee or something when the other is having a bad day, get them their favorite chocolate or let them sleep in. Love each other and communicate about any issues your having physically or mentally that day, make each other smile, be their friend and their caregiver when needed, and it will all work out.” — Courtney Heathfield

6. See Each Other’s Strengths

“My girlfriend reminds me of my strength and beauty during these hardest days. She recognizes my pain, but convinces me of my worth, and affirms that the weakness my disability causes is also the root of my deepest strength. She tells me often how much she admires me for my resilience, and always assures me that I am perfect in her eyes – disability and all.” –Ashley Burnside

7. Don’t Settle

Alexandria with her partner Connor.“This is Connor and I. We’ve been together two and a half years. I was born with a yet-to-be-diagnosed rare disorder that affects my muscles and joints — my muscles are very tight and I lack a lot of ability to bend. I also have rheumatoid arthritis and fibromyalgia. For me, the most important thing was finding someone who is compassionate and understanding; someone who doesn’t see my physical disabilities when they look at me, but me as a person. Communication is a big part of the relationship too. You need to find someone you feel comfortable asking to help with the things you can’t do, whether it be putting on your socks or standing to wash dishes. My best advice is to learn about communicating effectively, don’t settle for anything less than you deserve and don’t be afraid to go out and try to meet someone. There is someone out there who will love every part of you just as it is.” –Alexandria Pattie

8. Relationships Require Hard Work

Laura with her husband.“I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) three months before our wedding date and right as my temporary field research position was ending and I was losing my medical insurance. After the doctor gave me the diagnosis, I went to my then-fiancé’s office to tell him the news. I told him I completely understood if he didn’t want to get married, and I wouldn’t judge him for it. He laughed incredulously and gave me a big kiss and said, ‘Let’s get married at city hall tomorrow so you can get on my insurance.’ So the next day we got married in secret and then still had our big wedding a few months later. We’ve been married for seven and a half years and together for 14 (since I was 19 years old). MS has put a wrench in some of our plans, but it has taught us how to be good communicators, how to be supportive and still care for ourselves, how to find the good in every day. I am beyond grateful for this wonderful partner in life, not because he loves me in spite of MS, but because he loves me and I love him.

My advice for any couple, whether or not one or both of them is ill or disabled, is to not take your love and relationship for granted. Long-term commitments require work and honesty and compromise. If you ever feel that you’re not communicating properly or not getting your needs met, don’t let it slide and hope it gets better. Address the situation and put the work in to remedy it. Couples therapy is not a dirty word. Just like your car needs an oil change and tire rotation, your relationship will need maintenance as well.” — Laura Jones

9. Love Is a Gift

Felix and Denis.“I have invested my life in the search for love and that gift was given to me 18 years ago when I met Denis. He quit his job and has been taking care of me. He does all the things I can’t do anymore. He feeds me, bathes me, dresses me, grooms me and I’m very well taken care of.

My family is very understanding and supportive of my health condition. I still have a few very close friends. I also have the conviction that in the moment of truth, when it will be time to say goodbye, there will be living angels holding my hand, giving me the peace I need to depart happily. Meanwhile, I live and keep on fighting.” –Felix Garmendia

10. Your disability or illness doesn’t have to define your relationship.

Christine and Thanh at their wedding.“My husband, Thanh, and I got married before I ever got sick. We’d been married for over a year when I first got MS symptoms, and almost two years by the time I got diagnosed in January of 2017. We’ve been together since 2009. We met working together when I was 17 and he was 19. I don’t think it’s much different since my diagnosis — all couples have their issues, and MS is just something that we work through together just like anything else. My advice would be to be patient and kind to one another, and to do your research! Also, always talk about what’s bothering you, illness related or otherwise. Communication is even more important when an illness is involved. Other than that, my only advice is to not let an illness or disability come between you! A person isn’t defined by an illness and a relationship shouldn’t be, either.” — Christine Yvonne Hoan

Full Source: disableddatingclub.com

A Valentine’s Day Letter to Crohn’s Disease

Yes, you read that title correctly. I used the words “Valentine’s Day” and “Crohn’s disease” in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

A photo of the writer holding a heart with "Crohn's" written above it.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past, you come to realize that you were given this hand of cards for a reason.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare-ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided — and love yourself and your disease for a second.

We want to hear your story. Become a Mighty contributor here.

Full Source: disableddatingclub.com