Coding a web site.

Why I Made a Website About My Rare Condition

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I have arthrogryposis multiplex congenita (AMC). I was born with clubfeet, flexed knees, flexed hips, flexed elbows, and wrists. I have a history of scoliosis which caused intractable pain resulting in the need for orthopedic surgery. Over the years I have had 17 surgeries and countless hours of physical therapy to help make me more mobile and ultimately have the opportunity to have long term employment.

Due to my anterior horn cell disease and subsequent body changes, I do not have the strength, endurance, nor the pain management I had in my younger years. I now have limited tolerance for sitting, standing, and walking. There is no evidence in the literature that adults with arthrogryposis will get stronger or more mobile with age.

One in 3,000 are affected by arthrogryposis and there are various versions of the condition. I believe the version I have is known as Esobar syndrome. I say “believe” because I have never been tested for it, but the symptoms are very similar to mine and that’s the conclusion my PT at Alfred I. DuPont Institute in Delaware has reached.

Being a professional graphic/web designer I have created a site for others with AMC to help spread the word about the condition.

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Thinkstock photo by Welcomia.

 

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Thank You to Anyone Who Has Helped My Child With Food Allergies

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Food Allergy Awareness Week is May 14 through May 20. I’ve been thinking a lot about how far we’ve come in regards to my son’s food allergies. We made it two years without any major food allergy reactions. (Knocks on wood.) My 6-year-old child is alive and thriving. He has learned so much and continues to get used to his life with food allergies. And we have you to thank for it.

To anyone who has helped my child with food allergies,

Some of you have children with food allergies, or you have them yourselves. Some of you have relatives, friends, students or co-workers with food allergies. Some of you teach my child. Some of you feed my child. Some of you come into contact with my child. Some of you don’t even know my child.

But all of you have made a difference in our lives.

You understand that a child’s life is literally at stake. You understand how difficult it can be to navigate this allergen-filled life. You don’t laugh at cruel food allergy jokes or comments. You speak up when my child or any children are bullied.

You show you care on many days, in a million different ways.

You keep my son’s allergens, which are all nuts, away from him. You don’t offer him food, drinks or candy. You wash your hands when you enter our home. You respect our wishes and needs. You always try to help keep him safe.

You watch him closely at school. You keep an eye on him while he’s on the playground. You send me food allergy articles and video links. You pray for a cure while donating to organizations who are trying to find one.

You give us hope.

You choose to walk with us on this difficult, and sometimes scary, road because you know we would do the same for you. You know the health and welfare of a child is of utmost importance, and that not eating certain foods to keep a child unharmed is a small sacrifice to make. A sacrifice you choose to make each and every time because you know my child’s life is more important than a bag of nuts or whichever allergen could hurt him or some other child. You know he is still learning how to live with food allergies, and that a kindergartner needs a lot of help to stay healthy and make good decisions.

You don’t roll your eyes at us or make disparaging online comments about those with food allergies, because you have the intelligence, depth and compassion to know we did not choose this life. You know that anyone can get food allergies at any point in their lives. About 15 million Americans currently have food allergies and millions more worldwide have them. You know this and have learned the symptoms and how to use an epinephrine auto-injector.

You have seen many pictures of children who have died from food allergies. You know that I carry these children with me each and every day, and hope that my child does not suffer the same fate.

You know my son had his first anaphylactic reaction at the age of 4; you know how scared I was and continue to be. You know how I watched his face turn a pale shade of blue, and saw him struggle for air, during other reactions that were exacerbated by his asthma. You know those memories haunt me daily.

Boy wearing a jacket over a t-shirt that says food allergy wars and has an illustration of a boy holding a lightsaber

You know that when I look at my son, I still see a little baby. A baby created by love, a baby I will always love. A baby I will always protect no matter how old he is. A baby I cradled in my arms, a baby who is now a little boy. A boy who happens to have food allergies. A boy any mom would do anything to protect if he were her own.

Thank you for being able to put yourself in my shoes, and for realizing that my son’s life is as precious as your own child’s life. You know I will do anything I can to protect your child, and all children.

Thank you from the bottom of my heart for helping my child with food allergies. I am forever grateful for wonderful people like you. May my child always be surrounded by such love.

May that love follow him wherever he goes.

Sincerely,
His Mom

Follow this journey on Poetologie.

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How I Have Benefited From Keeping a Health Journal

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Recently, I found myself being very discouraged in my health journey. The days seemed to be blurring together, and I was beginning to feel like every day was simply an endless array of symptoms, pain, and medications. Because of this, I decided to start my own health journal to keep track of the days and reflect on them. I figured it would be beneficial, but at the time, I had no idea just how much of an impact it would have on me.

I started by getting a blank journal and recording things that were specific to my health. I wrote down things such as any symptoms I was experiencing that day, my mood, what I ate and how I felt after, any medications I took that day, my pain level and how I felt overall. At first, recording these things seemed tiresome and repetitive. It was even frustrating reflecting on the days and seeing the pages were full – full of symptoms and pain and medications. In the beginning of my health journal, I found myself feeling even more discouraged than before I started. I wanted to call it quits.

But suddenly, something changed. About two weeks into my journaling process, I was flipping through it and noticed just how much the days fluctuated. There were days when there almost wasn’t enough room on the page to hold all of my pain and symptoms. But every so often, I would have days when the page was bare, only a few symptoms and barely any medications. I began to realize that by keeping this journal I wasn’t just keeping track of the bad days, I was documenting the good ones too.

Furthermore, I came to understand that keeping a health journal helped me learn to appreciate the good days more, because I was able to recognize them more easily. It can be fairly simple to become discouraged with your health and overlook the good days because they are so few and far between in comparison to the bad ones. We often let the good days get lost in the never-ending line of bad pain days, but my health journal showed me that they’re there, and they are well worth celebrating.

I would encourage anyone struggling with their health to keep a journal. It can make you feel less distressed and discouraged, and it can help you to better appreciate the value of each day by showing the good within the bad. It also ensures that you don’t forget that there are good days, when the pain is a little bit less and the joy is a little bit more. These days are worth acknowledging and celebrating, no matter how few and far between they may be.

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Thinkstock photo via iprogressman.

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8 Reasons You're a Warrior for Graduating College With a Chronic Illness

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Graduating from college: a big accomplishment by anyone’s standards. You’ve had to worry about balancing classes, a social life, work and sleep, all while learning how to manage your time and be independent for the first time in your life. It’s not easy! Add a chronic illness or two on top of that and you’re in for a special kind of hell. If you make it through college with a chronic illness, you’re the real MVP. Here’s why:

1. You have to deal with teachers who are ignorant or refuse to accommodate you.

You get to deal with the professor who refuses to let you turn your work in via email even though you physically can’t leave your bed. Or the professor who laughs and doesn’t believe you when you tell him about your illness. And the one who says, “I’m sorry, but rules are rules,” when you ask about excusing an absence or turning in an assignment late. Or maybe the professor who tells you that you need to take the test in the class with everyone else, regardless of what your accommodations letter says. You might also have a professor tell you to drop the class because you’ve missed too many days and “maybe it’s not for you.” This is especially relevant if your chronic illness is invisible.

Pro tip: Register with your school’s Disability Resource Center or visit your student ombudsman (Yes, that’s a real word. Google it!) to help deal with these difficult professors.

2. You have to work really hard to get through each day.

Waking up on a “bad day” and exerting a lot of effort just to attend a class or two but being so tired you can’t follow along with the teaching, dragging yourself home and fighting the need to get some rest since you have to do homework, emailing a professor for the fourth time to try to schedule a make-up exam, trying to teach yourself lessons you missed or couldn’t pay attention to in class because you were too sick, re-reading the same page eight times to try to grasp the concept since your head is pounding, pushing through pain to do seemingly pointless assignments, having to stop, take medicine and go to sleep because your body isn’t functioning, then waking up first thing in the morning and fighting through the medicinal fog and sick feeling to finish the homework so you can start the whole cycle over again.

3. Medication side effects.

Enough said.

4. You frequently miss classes.

Any college student will tell you that once you miss class and get behind, it’s tough, but possible, to catch up. When you have a chronic illness, you will probably miss class and get behind pretty quickly…but as you’re trying to catch up, you’re still battling illness and you’ll continue to miss additional classes. Missing class means having to teach yourself the material, trying to get notes from others in the class, coordinating with the teacher on missed assignments and make-up quizzes (if they even let you make those up), hoping the test isn’t entirely lecture-based and crossing your fingers that the teacher won’t hate you.

5. You miss out on the “normal” college experience.

When you have a chronic illness, you have to weigh whether certain activities are worth it. Going to a football game (even without the tailgate) might mean you spend the next two days in bed, unable to do any schoolwork. Going to parties or clubs? Forget about it. You might not even be able to hang out with friends on campus after going to a couple classes because it is so incredibly exhausting. Maintaining a social life is difficult because most people don’t understand why it’s so hard for you to go out.

6. Staying up late isn’t an option (without serious consequences).

It’s not just that your body will be barely functioning if it’s overly tired while you’re staying up too late, but that’s part of it. It’s just not possible unless you’re prepared to be severely ill and deathly tired for a few days – but people don’t often understand that your body just doesn’t recover as quickly as theirs. But when you have to spend twice as long on an assignment as everyone else…sometimes all your free hours during the day aren’t enough to get everything done. Choosing between getting enough sleep and working on a project that’s due the next day is just another one of those “What’s more important: health or grades?” questions.

Oh, and coffee could make you feel sick, interact badly with your medicine or give you a headache for two days, but you’re welcome to give that a try.

7. You have to deal with the stigma of having accommodations.

So many people just don’t understand chronic illness, and everyone handles it differently. Some will look at you like you are not equal to them. Students in your class may judge you for getting extra time for assignments or different exam accommodations. Your teacher may question your chosen major and suggest you choose something easier. People who don’t know about your condition may see you walk out of the Disability Resource Center and say, “I didn’t know you were disabled! So, what’s wrong with you?” Friends will tell you it’s not fair that you can get an excused absence because of your chronic illness and they can’t. Team members think you’re lying when you tell them why you’re unable to make it to a group project meeting. These things can be offensive, hurtful, belittling and embarrassing.

Here are some of our favorite comments we get from classmates regarding accommodations: “Whaaaaat?! Oh my gosh, you’re so lucky!”

“So is your exam like open book and stuff?”

“Haha that’s great, I should tell them I have ADD or something so I can get that stuff too!”

“That’s not fair. I bet I could get an A if I had all the accommodations you do.”

8. You constantly think about quitting.

Medical leave sounds great until you realize how difficult it would be to come back from.

If you graduated college with a chronic illness, you’re a warrior. Don’t let anyone downplay your accomplishment. You did it! And that’s a big deal! If you’re still in college or plan on going to college with a chronic illness… You can do it! It may take you longer, it may be hard and you might have to push yourself more than ever before…but walking across that stage knowing everything you went through was worth it is one of the best feelings in the world.

college graduate standing in front of a fountain wearing her cap and gown

Congratulations! Now to find a job that will accommodate you…

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New York City MTA Introduces Courtesy Buttons for Passengers With Disabilities

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New York City wants to help passengers with disabilities find a seat on public transportation. On Sunday, the Metropolitan Transit Authority (MTA) began a pilot program designed to help people with disabilities, senior citizens and pregnant women get a seat on the city’s buses and trains. The program, which runs through Labor Day, provides those who request them with pins reading, “Please offer me a seat. Courtesy Counts.”

Courtesy Counts Pin


“Pregnant riders, seniors and those with disabilities often need seats more than others but their condition may not always be visible,” MTA interim executive director Ronnie Hakim said in a press release. “We hope this campaign will help their fellow riders to be more willing to offer them a seat without having to ask a personal question first.

Currently, passengers with disabilities have access to priority seating, seats which are designated for those who are unable to stand for the duration of their journey. However, these seats are often used by non-disabled passengers.

The program follows two recently filed class action lawsuits against the MTA, claiming New York City’s public transportation is inaccessible to people who use mobility devices and those with disabilities that make it difficult to use the stairs. According to the lawsuits, less than 25 percent of subway stations (112 out of 472) have elevators, making New York City’s subway station the least accessible in the United States.

“While we continue to designate ‘priority seating’ for riders with disabilities, this is another way to expand the availability of seating for those who need it most,” Hakim added. “The MTA is committed to promoting access to our system for people with disabilities. Over the coming years, this will involve spending billions to make more of our system ADA-accessible through the addition of elevators at stations and focusing on ways we can improve the availability of our existing elevators.”

The awareness buttons are similar to the ones introduced last August by London’s department of transportation as part of a pilot program. In April, London began offering the pins on a permanent basis. The MTA says its program is the first of its kind in the U.S.

Those interested in receiving a pin can easily apply on the MTA’s website. Pins are mailed out within two to three weeks. 

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When Chronic Illness Puts You at the Mercy of Others

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For those of us who have been bitten by the “chronic disease” bug (pun intended), you are well aware of everything I am going to say.

This is for everyone else…

I have had many beautiful people support me from afar during my journey; cheering me on via my Facebook wall, “liking” my statuses every time I had a major update during my treatment and sometimes “sharing” my GoFundMe page. Don’t get me wrong, any support I can get I will gladly accept with open arms and roll around in it because this chronic world can be so lonely – but it’s the very few people who support me up close that make or break me.

The reality of living with a chronic, invisible illness is that no matter who you are or what disease you possess, you are at the mercy of anyone who believes you. This may sound strange at first, but I assure you it is a very real and very unfortunate reality.

The doctor that I go to, an LLMD whom I will refrain from naming, has a front desk staff that is less than pleasant, to put it nicely. Every time I am standing at the desk I am greeted by an irritable employee with a God complex. This person is in charge of making sure I can get my schedule straight with appointments/treatment protocol, giving me my allotment of supplements and returning my phone calls (whenever they feel like it). They have given me a problem every single time I have interacted with them. I have been mistreated on countless occasions and even the people that are kind enough to sit in the waiting room with me have commented on the negative nature in which I am being treated. Do I say anything to anyone? Of course not. Why? Because this office is the only one that will treat me. This office is the only one that has not told me I was “crazy” for feeling the way I do. This office has me at their mercy because I cannot afford to hunt for another doctor who will take me seriously.

My friends are amazing. Our group text is always blowing up with exciting news, plans for hangouts and the usual college agenda so I feel relatively in-the-loop even though I’m homebound. That being said, they can also hurt my feelings. I don’t hold it against them for not inviting me places because the obvious will tell them that I cannot attend due to my illness – not that I wouldn’t highly appreciate being asked anyway. Only one person in this group will visit semi-regularly and when they do, they are usually on their phone the entire time texting their significant other, playing games or browsing Instagram. I am very grateful that they came over but I wish they wouldn’t look like they would rather be anywhere else other than sitting with me.

On occasion other members will stop by in groups of two or more but they won’t stay for more than 20-30 minutes and won’t offer to help me do anything (suffice to say the typical “if you ever need anything” comment that they will never follow through with). They often make comments about maybe stopping by when “everyone else is busy” or offering to do things with me that they know I will never be able to do so they aren’t tied down (go drinking, dancing, etc.). Can I complain? Can I afford to tell them how I feel? Not really. Without them, I have zero human contact during the day. I live alone and I’m always afraid if I rock the boat in any way I will lose the already very minimal human interaction I get. I am at the mercy of whatever quality of friendship I can get.

My point is if you care about someone who has a chronic illness, check yourself every now and again. They may literally be at your mercy. Think of the phrase “don’t bite the hand that feeds you” and imagine you are the hand. Oftentimes they cannot drive or they might use a wheelchair and do not get the opportunity to leave the house much, so you are the only way to a life outside those walls. If you have some free time to visit, leave your phone in your bag or car and engage the person if they are up for it. If you have nothing to do, make a plan with them to get some fresh air. Above all, don’t hold it against them if they cancel last minute because believe me, that is the very last thing they want to do. As someone who relies on everyone around her to get out of the house, I relish any opportunity I have to do so and will plan days in advance to rest up in an attempt to have the energy for it.

Make Uncle Jesse proud and “have mercy.”

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Thinkstock photo via Tharakorn.

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