When Fighting to Get Well Feels Like Climbing a Mountain

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Growing up, I had only ever seen people skiing on TV, during the Winter Olympics and while watching things like James Bond movies. I always hoped to try the sport out myself, and when I heard about a school ski trip (at 16 years of age) to Mt Ruapehu, in the North Island in New Zealand, I jumped at the chance. The trip was not cheap, and I had to pay for travel, accommodation and hire equipment myself. My parents did not have the money.

I worked at a supermarket in Auckland and saved every penny to attend the trip. It turned out to be a group of 20 students who happened to be rich and snobby and who were all well experienced in skiing. Looking back at the experience, I now realize just how unprofessional the three teachers were and that they pretty much were on vacation themselves and were not interested one iota in keeping an eye on any of the students. We arrived at Mount Ruapehu quite late in the day. In fact, there had been a huge snow drift, meaning we were stuck at the bottom of the mountain with all our luggage to carry up. The lifts had closed for the day and we had to literally climb a snowy mountain with our gear to reach our log cabin.

The teachers went ahead and the students followed. I found the journey difficult. Walking through knee-deep snow as the sun went down and dragging my luggage was a hard task. The cold air began to affect my lungs, and my asthma got out of control. I had to stop to find my inhaler. No one stopped to wait. Everyone simply carried on, and I found myself halfway up a mountain with asthma and not one person in sight. It was evening on a dark, wintery night, and all I could see was a black sky and white snow. I did not know where to go but simply followed the footprints in front of me. The experience was quite distressing, and I remember crying to myself and feeling scared and exhausted.

Eventually after a few hours, I arrived at the log cabin. Everyone else had settled in and chosen their beds, the dinner was nearly cooked and I was just arriving. No one wanted to talk to me. I was certainly the odd one out, with no experience and pretty much a loner by myself for the whole week. However, I decided that I would not let this upset me, and the next day I went out with my skis and taught myself to ski. I started off on a small slope and then moved up the mountain to a bigger slope and so on. Eventually I was at the top of the slope skiing as well as the other students in my group, and they were just staring at me in shock. I had a bittersweet skiing holiday where I enjoyed myself with my own company. Sadly, the holiday came to an abrupt end when one of the students in the group had an accident that left him paralyzed. I have never been skiing since and don’t think I’d ever be well enough to do it again, but I did get to experience the sport, and despite the social nonsense, I enjoyed the thrill of skiing fast down the mountain.

I think one day I’d like to take my daughter to the snow, and if I’m well enough, we could get some tire inner tubes and ride down the mountain together. That would be so cool! It is going to be a some time before I get well, but still I can have goals, dreams and plans for the future.

Although my experience at 16 was not the best, I did learn a few lessons at a young age. I learned that in order to do something difficult, something that is incredibly hard such as climbing that mountain and walking through the unknown, I need to be strong. I need to depend on myself because the harsh reality is that in today’s world, I believe many people only think of themselves and focus on what they can get out of life. I recognize that there are genuine people out in the world who do care, and I do have some supportive friends in my life (especially online, as that is where I do most of my socializing as an unwell person). However, the truth is if I want to make something of my life, to be the pro blogger I want to be, to be the mother I want to be, the wife I want to be and live the dreams I want to live, I need to take those steps toward these dreams on my own. I am fortunate to have my husband by my side pushing me up and sometimes dragging me up the mountain we are climbing together. 

At times it is hard trying to accomplish what seems impossible, especially in relation to my health goals and dreams and all the steps I need to make to get there. I feel the National Health Service (NHS) is letting me down and that they really do not care. I have my relatives who love me and friends who support me from a distance. I even have some blogging friends who support me in the blogging community, and for that I am truly grateful, but at the same time if I don’t work each day to fight my cause and try to be heard, to raise awareness for my illness in the hope of one day getting better, I will not get anywhere because no one is going to do it for me. 

I have three main health goals for 2016, and they all revolve around my illness, adrenal insufficiency. Adrenal insufficiency is a condition where the body fails to produce cortisol, the “stress hormone.” This can be life-threatening and causes symptoms such as muscle weakness, nausea, low blood pressure and headaches.

My first goal for 2016 is to lose more weight, to strengthen my muscles and use my wheelchair less often. When I first went on steroids for adrenal insufficiency, I gained weight. I’ve been working towards a healthy BMI and lost 30 pounds so far. Losing weight will ultimately reduce my daily steroid dosage, which will be better for my body.

My second goal is to find a new endocrinologist who will work with me to use the adrenal pump. I’m currently on hydrocortisone tablets, which do not keep my health stable. I would like the opportunity to have the best medical option available. Finding the right endocrinologist to wrk with will be a major stepping stone to improving my health.

My third goal, which is related to goal two, is to raise the funds to purchase my own adrenal pump and cover the cost of consumables, medication and private appointments. I don’t have much choice as my NHS endocrinologist is not familiar with the adrenal pump and unwilling to consider this as an option for me.

I don’t mean to offend, but the truth is, I am on my own. No one is going to do the work that needs to be done in order for me to reach my goals. I must fight my own battle, and when it feels like I’m doing it on my own, I must not give up. When I do get to the top of this mountain, I will ride back down and enjoy the scenery and the view. Those who have supported me will be remembered, and those who simply couldn’t care less, well, I’ll ride straight past them and onto better and greater things.

Angela in the hospital holding a stuffed panda
Angela in the hospital holding a stuffed panda

Follow this journey on Days In Bed.

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3 Things I Want the Parent of a Child With Adrenal Insufficiency to Know

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My mom and I have been in your shoes. I remember the doctor coming in and hurriedly explaining adrenal insufficiency to us. No cure. Diseased for life. Steroid dependent. Be mindful of stress. And yet, I can live a “normal” life?

Over the years, we slowly realized we weren’t as isolated as we thought. We worked together and learned together. As someone who has lived with this diagnosis for more than a decade, I would like to share some insights with you.

1. Yes, cortisol controls a lot.

The production of cortisol within the adrenal glands influences so many things: heart rate, blood pressure, blood sugar. The ability to fall asleep. The ability to wake up. Balance, appetite, mood, weight, memory, emotions, electrolyte balance. And this seemingly overwhelming list isn’t even fully inclusive!

Doctors are still discovering more things that cortisol influences. But the good news is that as you work out a treatment plan tailored to your child, some of these seemingly unrelated symptoms should resolve themselves.

My mom and I had no idea that my frequent hospitalizations due to severe dehydration were a symptom of undiagnosed adrenal insufficiency.
My mom and I had no idea that my frequent hospitalizations due to severe dehydration were a symptom of undiagnosed adrenal insufficiency.

2. Yes, this disease is worsened by stress.

Please don’t see this as an opportunity to try to isolate your child from any situation that might be considered stressful. Instead, work with them to teach them how to identify potentially stressful situations and practice steps to take to help reduce the overall stress load. Also, please keep in mind that not all stress is bad. Extremely happy and joyful moments can still be considered stress on the body, but it’s good stress.

​Holding a baby tiger in Thailand is a good type of stress.
​Holding a baby tiger in Thailand is a good type of stress.

3. Yes, you will occasionally mess up.

And that will probably cause your child pain. Please forgive yourself. We forgive you. We know you’re trying your hardest, and we know this isn’t an easy disease to manage. Allow yourself grace. Use the lesson you learned today to make tomorrow better.

Amber Nicole.4 This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me.
This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me.

Every day, you will continue to discover new things that will help you and your child manage this disease better. Welcome them as learning opportunities. And as your child continues to grow, know that your role in helping manage this disease will continue to change and evolve. Over the years, my mom went from being the sole person managing my disease to allowing me to have full responsibility.

That being said, I know she is never more than a phone call away if I need her.

A photo of my mom and me.
A photo of my mom and me.

Follow this journey on Clearly Alive.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When People Say ‘You Don’t Look Autistic’

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“You don’t look autistic.” This is a common statement I hear if I ever tell someone my diagnosis. I use a service dog for my autism and severe migraines, and I am currently training his successor. So people are always curious as to why someone who can walk, speak and seems perfectly “fine,” uses a service dog. Most people assume I am training them for someone else in more “need.” While it is no one’s business, it is a common question.

Service dogs are trained to mitigate multiple different disabilities. Many are visible and many are invisible. Having one or the other or even both doesn’t make us any less disabled. Just because you can’t see my autism, doesn’t make me not disabled. My neurological conditions don’t have a “look.” Autism doesn’t have a specific “look.” It doesn’t usually affect an individual’s physical features. Autism can have physical manifestations, such as motor-skill delays and balance issues. I personally have balance and gastric issues connected to my autism. But even those aren’t “visible” to the untrained individual.

Autism is a part of everything I do. It’s a part of me. I can’t turn it on and off at will. Autism partially makes me who I am, but that doesn’t mean I should be singled out or treated differently. And I honestly prefer to be treated as everyone else. Is this too much to ask? Apparently in the United States, it is quite a bit to ask for. There are autism stigmas everywhere. I believe the new “Sesame Street” character, Julia, even empowers the stereotypes and stigma about how autistics should act. We are all individuals and cannot be stuffed into a tiny box of absolutes. We should be treated as individuals and respected as such.

The stigmas hurt us more than they help us. Every fellow autistic I know and have come into contact with wants to be an individual. They also have strong voices of their own, and they want to be heard. Does this mean every autistic is like this? No, but the adult ones I have met are.

So, the moral of this post is basically to think before responding to someone’s diagnosis. Saying something like, “You don’t look autistic,” is rude and assuming. Don’t put us in a small box. It isn’t easy for many of us to open up to people.

Please don’t make our lives harder with assumptions. Let us spread our wings and be ourselves.

Liz Bernstein.1

Follow this journey on Liz’s Life, Aspergers, Gluten Free and Raw Fed Aussies.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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10 Things to Know Before Our Special Needs Family Visits for the Holidays

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Dear Family and Friends,

We’re on our way to visit with our autistic boys in tow for the holidays, and here’s what we want you to know.

Our lives are a bit chaotic, and we parent just a bit differently at our house for reasons you cannot fully understand. These things may seem odd, different or just wrong as far as you’re concerned. I get where you’re coming from because I used to think the same way, but there really is a method to our madness, and if we’re going to get to be a part of each other’s lives during this holiday season, there have to be some ground rules.

1. Try to be understanding.

We fight every day to make the lives of our kiddos as productive and fulfilling as possible. This means many sleepless nights, meltdowns, IEPs, ignorant educators, medical evaluations, neurological evaluations, testing evaluations, doctor’s appointments, pharmacy stops, short order cooking, ritual habits from before daybreak to after bedtime, countless therapy sessions, driving the equivalent of a super commuter every week and virtually no time for ourselves. We do not need or want your sympathy or praise, but a little understanding will go along way.

2. Don’t be offended or get defensive if…

We stop at McDonald’s before coming to your house to grab some chicken nuggets. My kiddos will only eat a few specific things made a certain way with specific tastes and textures. And no, they will not eat what you put in front of them. We love your cooking, but my boys do not have the same adventurous palates. We are trying to compromise.

Also, my boys sometimes choose to close themselves in a room and play their electronics as opposed to playing with the other children. They do not like lots of noise or stimulation around them. It truly hurts their ears and overloads their senses. If they do come out for snippets of time, we see that as progress. Let them come and go as they please. Enjoy the time they are out and around people. In fact, it would be helpful if you plan on having a safe room set up for them to escape to. You don’t need much in there except an outlet to keep the electronics charged.

3. Try not to react (or overreact) to meltdowns or tantrums.

There is a difference between a meltdown and a tantrum. We have learned that reinforcing tantrums causes more tantrums. Inversely, a meltdown can be caused by a myriad of stimuli occurring around my child. We will deal with these according to the suggestions we have received from our therapist. And no, I don’t want your opinion on how you would deal with a child behaving this way.

4. It’s OK for them not to engage with everyone else.

We allow our boys to sit and watch “SpongeBob SquarePants” the entire time we’re there. Right now it’s their thing, and it keeps them engaged in a way only they understand. No, they don’t want to watch the game. Not to mention all the hoopla surrounding watching the game sets them on edge. Someday, I dream they will be interested in football, but today they are not, and I have come to accept that as a possible fact for the rest of my life.

5. Certain foods (like mashed potatoes) taste great with ketchup.

If my son happens to join us at the dinner table, he only eats the mashed potatoes smothered in ketchup. We take our wins where we can get them, and him being at the table is a win. Did I mention the ketchup? Please buy an extra bottle while you’re out shopping, but in case you forget, I will keep my emergency supply in reserves.

6. Pacing is a fact of life and doesn’t hurt anyone.

One of my boys might start to walk around in circles from the kitchen to the living, down the hall and back around the kitchen. This is called stimming, and it’s his way to manage the world around him. It can be soothing for him to do this for up to 30 minutes or more. You may also want to ask us why and when does he does this. I have loads of answers for you, so let’s discuss them over a beverage.

7. Exercise can be a great, calming activity for my boys.

If you have a trampoline in the yard, this could be used as a very good heavy movement tool for the boys to enjoy. My oldest has been known to jump for up to four hours nonstop. He will tolerate a few additional jumpers as long as they don’t interlope on his activity. These kinds of activities can actually calm him down for hours afterward.

8. Headphones and earplugs aren’t signs of rudeness.

My boys don’t take off their headphones the entire time they are there. They listen to lots of things and sometimes nothing at all, but by having the headphones on, they are able to moderate the volume of sound emanating around them. This helps keep them grounded and balanced.

9. We’re not being rude if we leave early.

If we need to leave early or one of us heads back to the hotel with the boys, we’re trying to be considerate of you and also keep an eye out for their wellbeing. They can really only handle so much of the chaos going on around them. Chaos can be defined as people talking in groups with several conversations going on at the same time, kids screaming and playing tag in the backyard and the general festivities that happen when families get together just a few times a year. Don’t try to keep things down on our account. We knew what we were getting into when we came, and we’ll go with it.

10. Don’t judge, just accept. And talk to our kiddos.

Don’t judge us, don’t belittle our parenting choices and don’t give us your opinion of how or what we’re doing with our kids. Don’t parent our kids for us when we’re around. Just accept us and accept we are here with you, and we’ll be excited and happy to come back again.

Do engage with our kiddos, ask kindly worded questions about behaviors you notice with our kids and take steps to understand a little of what our lives are like. There are some great blogs, Facebook pages and books that share a little about what our lives are like.

With this new understanding, you will help us keep autism awareness alive and growing.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the People Who Bullied Me Because of My Chronic Illness, Thank You

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Growing up, I had severe migraines. We didn’t know why; we just assumed it was nothing, and I went on with life. We all started to notice my right eye was lower then my left. Knowing this was an incredibly sensitive subject for me. My family thought it was simply a lazy eye.

In January 2007, that all changed. A doctor did a biopsy of the bone just above my right eye. The results came back to be fibrous dysplasia, a rare bone disorder that eats away healthy bone and replaces it with fibrous tissue. In March 2007, I had my first facial reconstructive surgery. For this surgery, they cut me from ear to ear, pulled my face down and shaved back the fibrous dysplasia. They also took a piece of my rib and built me a brand new eye socket.

We hoped this would be a great fix, and I could go back to life as if nothing had happened. That’s when I lost my first set of “friends.”

In order for me to go back to school, I had to compromise by going to the nurses’ office and taking short naps throughout the day to make sure that I wasn’t overworking myself. Even though I hated this, I did it. Anything to be back at school with my friends, right? 

Soon, I began hearing hurtful things like how I faked it all, that I was just being a baby, that there obviously wasn’t anything wrong with me and that I didn’t deserve to take short naps and just wanted attention. And these were my “friends” saying this.

Thank you to my sixth-grade “friends” who taught me my first important lesson in life: That some people just aren’t good enough for my love.

Flash-forward to high school, where the bullying only got worse. It didn’t take long for other students to notice my slightly lowered eye and the small bald spot from my surgery when I was in sixth grade. Being tall, tan and blonde, I was the perfect target for being called Barbie. But I want to thank the girls who called me a f”***ed up Barbie,” because you gave me confidence and made me proud to look like the way I am.

By the end of freshman year, it wasn’t just girls bullying me — it was guys, too. They called me “Scarface” and said I was scary. Thank you to those boys who made me proud to show off my scars. Thank you for making it easier to explain why I was “Scarface.”

When I had my second reconstructive surgery, I was an adult who had to go grocery shopping and had bills to pay. My grandmother forced me to get into a wheelchair so I didn’t have to walk around Walmart. To the greeter at Walmart who laughed at me for having to be pushed around in a wheelchair: Thank you. You — and my grandmother — helped me accept that it’s OK not to be able to do it all. It’s OK that I just had major surgery and couldn’t function the same as I used to. Thank you for helping me understand myself and my limitations.

When I had my third reconstructive surgery, I was a new mother and a new(ish) wife, and I had to get groceries. Thank you to those who glared at me for having to use the motorized wheelchair (while holding my 1-month-old) to grocery shop. You helped me realize that even though I have limitations, they’re nothing to be ashamed of. I was embarrassed to use the motorized wheelchair at the beginning of my grocery trip, but by the end of it, I had my head held high. Thank you for helping me get to that point.

The burden of having a chronic illness is hard, not just on the patient, but also on the family and friends of the patients. The one good thing that comes out of having such a rare disease is connecting with other people who have it, and finding out who will always be there for you and who never was.

So to all the bullies I had growing up, although you didn’t make it easy for me to accept that I have fibrous dysplasia, I truly thank you for helping me find myself. Thank you for teaching me to be proud of my scars. Thank you for giving me the confidence to say I earned my scars, and I am proud to show them off and tell you how I got them.

Thank you for making fun of me. Thank you for calling me names. Thank you for molding me into the confident person I am today.

And yes, I do forgive you.

Skye Miu Steppe.2-001

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Santa Poses for Sweet Pic With Exhausted Boy Who Just Had Seizure

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A mom captured this seriously sweet photo of her son with an accommodating Santa.

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Courtesy of Samantha Wade

Samantha Wade took her 2-year-old son Ryland to see Santa at a mall in Ohio, but then he had a seizure right before he got to see St. Nick. Ryland has epilepsy and can have anywhere from one to six or more seizures a day depending on many factors including the atmosphere and the amount of sleep he got.

Despite being completely exhausted from his seizure, Ryland’s mother was still determined that he would have the chance to see Santa. Undeterred by the fact that he couldn’t even open his eyes once he was in his lap, the sweet santa decided to play along and feign sleep, allowing Wade a precious holiday picture.

Wade posted the photo to The Mighty’s Facebook page on Monday. With it, she wrote:

I just wanted to share this photo. We took my son Ryland to see Santa Claus today at the mall. It was an event for kids with special needs, and it took place before the mall opened. It was very quiet and relaxing, the perfect environment for a child who needs more of a calming experience with Santa.

Ryland had a seizure before we went, and this one took a toll on his energy, but nothing would stop him from meeting Santa! When I set Ryland on his lap, he wouldn’t open his eyes for anything… but Santa immediately cuddled with him and very quietly talked to him for awhile. When it came time for a photo, he pretended like he was snoozing along with Ryland, making for one awesome picture and a very memorable moment for us!

Sometimes you just gotta go with the flow, and I’m so glad Santa Claus did.

“When people see the photo, I want them to realize that just because he has daily seizures, and some really deplete his energy, we do our best to go about our day anyways,” Wade told The Mighty in a Facebook message. “Whether it be running errands, visiting family, or sitting on Santa’s lap, he deserves every opportunity that’s presented to him and we’ll do everything we can to make that happen. We refuse to keep him cooped up in the house, regardless of seizures, and if he happens to sleep through what we’re doing, that’s just life with Ryland, and we’ve learned to go with the flow.”

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