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When a Stranger Gets to Decide If You’re Disabled

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No one wants to be disabled, and no one wants to go through the disability process. I stopped working two years ago and applied for disability. I worked for as long as I could and pushed myself day in and day out just to get through each work day. I was sick and exhausted, and there were plenty of days that I cried on my way to work or on my way home because I felt so terrible.

When I applied for disability, I knew the process would take awhile. I thought to myself, “I have plenty of medical records, and I know how sick I am so that should be enough, right?” Wrong. I was denied. Then, I was denied a second time. Then I went for my hearing in front of a judge. I tend to be a nervous person, and this experience made me feel worthless. I’m young and have complicated chronic illnesses, and I knew this stranger was going to spend 20 minutes with me to decide whether or not I was disabled. 

Having a chronic illness is a constant fight with your pride. It does everything to steal your life away from you, and all you can do is hold on for dear life. There’s no way to show the people in your life or strangers you meet just how tough the battle you’re fighting every day is. 

The disability process has made me question myself on more than one occasion. On my “good days” I would think to myself, “Maybe I can do this. I don’t feel well, but maybe I can figure something out so I can work again.”

Then I would have a flare day. A day that was so miserable that I questioned how I could live the rest of my life this way. These days remind me why I’m not working and brave the humiliating disability process.

After my hearing, I was denied again. I wasn’t surprised. Mostly, I was disappointed. It’s difficult to get to a point of accepting your illness without identifying yourself as your illness. You put on a brave face and pretend to feel better than you do while still facing the reality that you’re disabled. Living this way is your full-time job. The balancing act of being disabled and identifying as yourself — that is a full-time job. And then someone tells you that, according to them, you should be able to do light work, as if all of your challenges are just minor inconveniences.

If you’re fighting this fight, stay strong! You know who you are and how your life has been affected. I hope the process will be easy for you and that you have great medical professionals who keep real records. 

Either way, I know how hard you’re fighting, and I believe in you!  

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What Love Looks Like to Me After My Chronic Illness Diagnosis

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Language tends to be a big obstacle for me. I have trouble communicating how I am feeling. I don’t always feel safe to let people know that I need to rest, that I want some time away. The mind lies — it uses my confusion of language to be a vicious little chatterbox.

Since I have been diagnosed with a chronic illness, I have really struggled with what words to use. At first for me it was necessary to say I was sick, otherwise I would keep pushing myself and not take the time to really get better. But now, I feel that word doesn’t fit. I feel sick a lot of the time, my energy is low and I feel a lot of pain. But I am not just one thing. I am not just someone doctors gave a label to. I am not just someone struggling with everyday activities on certain days. And I am not just someone who feels great and happy. I am all of those things and more at any given moment.

We went to visit some friends this weekend, and words like “burden,” “selfish,” “helpless,” “high-maintenance,” “inconvenient,” “demanding” and “difficult” kept coming up. They were the lies my mind was telling me, but my friends made sure I felt loved and safe. I finally asked myself — is my idea of love too constricted and in need of expansion? It completely changed my state. After all, who else can define what love is to me, what love looks like to me, other than me?   

Love is my friends taking 30 minutes to look for a restaurant that is safe and comfortable for me to eat at.

Love is my husband understanding that I can’t eat with him at the airport because the sight and smell of food is making me feel sick and stressed.

Love is my friends being willing to try new things because it is safer for me to eat, for them to go out of their way to ensure the ingredients are the best possible even if they are more expensive.

Love is my husband going to pick up the dog after a long day of work so I can rest just a little bit longer.

Love is my best friend sending me videos and photos as she runs races I wanted to be running with her. It is her dedicating her miles to me, and her continuing to cheer me on even when I cancel at the last minute. 

Love is anyone understanding that sometimes I just need to rest and sleep, even if it is on their couch five minutes after I walk in the door. It is them letting me sleep even though they want to spend to time with me.

Love is someone making a meal for me, and just being happy I am keeping them company as they do all the work. 

Love is my husband remembering what time my doctor’s appointments are so he can send me a sweet message at the perfect time.

Love is me listening to my body and resting, sleeping and speaking up if something is going to help.

Love is me communicating with my medical team and asking for more pain medication instead of just accepting that procedures are going to be painful. It is me realizing that not all the pain is necessary, and in fact it helps them to treat me better. It is information, not complaining. 

Love is the friend who sends me messages every couple of days asking me to lunch and checking in with me. And when I respond that eating out is difficult, he reminds me that the food is not the important part, he just wants to see me and make sure I am doing all right. 

Love is sometimes crying because of the pain or stress or whatever, no matter if I am in the grocery store, a plane, anywhere. It is letting the emotions go instead of hanging on to them because I am worried about what people will think. 

What will you decide love is today?

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Why I Won’t Make a New Year’s Resolution as a Person With a Chronic Illness

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Being chronically ill can make life unpredictable. That, in combination with the unpredictability of everyday life, is enough to send this control freak into panic.

Every year, people look at the new year as an opportunity to begin a new lease on life. Resolutions are made, goals are set, changes are promised — the whole shebang! For me, those things likely last a day, and then I’m back to my old ways. And if I’m being honest, sometimes hearing resolutions can upset me.

“I want to lose weight.”

I’d really like to gain or at least sustain and maintain my weight

“I want to stop drinking so much.”

I’d really like to be able to drink but not alcohol. I just want enough to stay hydrated.

“I’ll work out more.”

Seriously?

I can grasp at my attempts for resolutions. I can make them until I’m blue in the face if I’m being honest. But when I fail at keeping up with those resolutions due to circumstances beyond my control, the guilt overwhelms me.

So I’m starting a new tradition — one that makes me happy and is attainable. Instead of making a resolution, I’ll choose a word to help me navigate the year. Think of it as a pair of glasses: This word becomes my glasses, and I do my best to view the world and my circumstances through the eyes of this word.

For 2017, I chose the word “acceptance.” I’m choosing to accept my circumstances and learn to live with them instead of disputing them and fighting against them.

I will accept my abilities and accept the things I struggle with.

I will accept myself, my body, my conditions and my emotions.

I will accept my thoughts and opinions.

I will accept my reality instead of comparing it to what I’d like it to be.

I will accept that my dreams may not be attainable right now, but I have faith they will be attainable in the future.

I will accept the people who make an effort to be in my life and accept those who don’t feel I have a place in theirs.

I will accept the reality I face, the experiences I endure, the pain I feel and the limitations I am held back by.

I will accept and endure the emotions I feel as opposed to disputing them.

I will accept that God’s plan for me is different than those of my peers.

I will accept that I am still important despite the detour my illnesses force me to take.

I will accept that some of the goals I make will not be attained, and I will accept and allow myself to mourn and grieve that.

I will accept that my life is carried out in a manner that the status quo states is wrong. 

I will accept myself as I am.

Now don’t confuse this theme of acceptance with the notion of settling. I will not settle for anything less than I deserve or anything less than I want for myself.

I will not accept the standards people hold me to, regardless of how low or high those may be.

I will not accept or allow my limitations to be a permanent reality.

I will not accept the mistreatment and hurtful thoughts and words I may face.

I will not accept the negative opinions of those who don’t understand my values and morals.

I will not accept the idea that I am any less worthy than a healthy human being.

I will not accept the notion that my illnesses make me a lesser human.

I refuse to accept the thought that a hurdle is too big to overcome or that a setback is permanent or that a mountain is too big to climb.

I will not accept negative opinions of my actions by people who underestimate me and my abilities.

I will not accept the idea that I am less, that I am incapable, that I am a failure.

I will not accept anyone who doubts or gives up on me.

The key to all of this is to find a word that empowers you and encourages you when things get tough. It’s a word that is important to you and will guide you through the things that you find difficult.

There is no need for empty resolutions or unrealistic expectations. Choose a word that represents what’s important to you and allows you to unapologetically live and act and attain the goals you want to achieve.

I’ve found that the acceptance of your reality and of your circumstances is the key to being free. Be aware of the choices you make and the potential you possess. You are fearfully and wonderfully made, and once you accept that your path is different than your peers, a whole new world of self-discovery opens up.

Regardless of what word you choose or resolution you make, life is what you make of it. It may not always be bright skies and sunshine, but it won’t always be gray skies and storms, either. If anything, don’t measure the upcoming new year on the accomplishments you attained or those you didn’t. Choose to celebrate the fact that you survived another year, whether that was in and out of the hospital or bedridden at home — you did it.

That in itself is pretty badass if you ask me. So keep on keeping on, and may the next 365 days be kind to you and be filled with good health, happiness and endless amounts of love and laughter.

Here’s to another year of finding grace in the good and the hard and surviving despite the odds stacked against us. Onwards and upwards, my friends, and happy 2017!

Follow this journey on #SimplySabrina.

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Secrets of People With Chronic Illnesses

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Why Some New Year’s Resolutions Won’t Work for People With Chronic Illnesses

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A lot of people make New Year’s resolutions. Many of them focus on things people want to do to become healthier. As a person dealing with multiple chronic illnesses, my resolution list is drastically different and much more limited than the lists of healthy individuals. There are some things my physical limitations won’t allow me to change. 

Here are some common New Year’s resolutions and why they won’t work for me or others with chronic illnesses: 

1. Lose weight.

I have gastroparesis and a number of other gastrointestinal issues. If anything, my resolution would be to not lose any weight, but it’s not a decision over which I have any control. I am on TPN (IV nutrition) every day, but one bad flare, an infection or any physical complication can destroy that plan. In some instances, people with chronic illnesses have the opposite problem and can’t lose weight no matter how hard they try because of the conditions they have or treatments they are on.

2. Maintain a routine workout plan.

My body completely defines what I’m capable of doing from one minute to the next. I may feel energetic and up for a walk in the park, but by the time I get my clothes or shoes on, I may need to crash for the rest of the day. Instead, my resolution is to stay as active as I possibly can, whenever I can, to avoid losing more strength. 

3. Be more socially active.

My mind wants to do it all — to go to every party, every outing with my friends and participate in every volunteer opportunity that comes my way. But I have to resolve to set boundaries. I have to listen to my body and remind myself I can’t do as much as I would like. I can’t keep up with my peers. I can’t do everything I want to do, but I will do what I can and be proud of every accomplishment I can make. 

4. Eat a healthier diet.

I have no options. I wish I could eat. Period. Instead, I have to resolve to maintain a healthy schedule infusing TPN, fluids, get my labs checked and central line dressing changed weekly and maintain as sterile an environment as possible while connecting to my “food” every single day to avoid getting sepsis. 

5. Maintain a healthier sleep pattern.

Sleeping can be a challenge for people who are chronically ill. Some need a lot of sleep, others can’t sleep for various reasons and many have trouble maintaining any kind of routine sleep schedule due to medications, symptom flares, hospitalizations, medical equipment that malfunctions in the middle of the night or other factors. Plus, my body may go so far and just need to stop suddenly. A simple catnap doesn’t do the trick. I may still be exhausted, or it may be impossible to wake up from the catnap, which throws my sleep schedule completely off. 

6. Begin working on an developing an overall healthier lifestyle by combining all of the above.

Although I can decide to do everything I can to fight the effects of my illnesses on my body, I only have so much control. My resolution in this area never changes. I will follow my medical regimen as closely as I possibly can so that nothing I do inaccurately will impact my health in a negative way. I will walk or exercise in some way as much as I can. I will keep up with my medications, my TPN, my fluids, my doctor’s appointments and tests, and I will stay on top of symptoms and inform my doctors of any concerns. I will try to rest as much as I need to, but also maintain as healthy of a social life as possible for my psychological well-being. 

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While healthy individuals can take on most of these resolutions, people with chronic illnesses often can’t. But that doesn’t mean we can’t change anything. Every year my resolution is to change aspects about myself that I recognize I need to develop throughout the year that have little to do with my physical health, but so much to do with who I develop into as an individual and the legacy I leave behind. Do I need to give more? Love more? Forgive more? Cut back on frivolous things that preventing me from doing more productive things? Is there a project I can start that gives back to others? Can I begin a new hobby? Learn something new? Set a reasonable goal to strive to reach in a year or two? What do I have control over that I can change about myself this new year to become a better person overall? 

We all have things we can work on. If we can’t change our physical health and appearance, there are other things we can change about ourselves. Often those changes are the most difficult ones. We may not recognize them all at once, right at the end or beginning of a year, but we should always be open to them and not delay making changes as we recognize them.

Don’t put undue pressure on yourself to change a lot of things all at once or worry about changing things you can’t control. If you can make changes to improve your health, do it! But even if you can’t, focus on becoming a better you and what you can do to develop a healthier attitude, more positive outlook on life or create healthier relationships. 

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Why I'll Try to Be Kinder to Myself About My Chronic Illness in 2017

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This year, my chronic pain reached new heights, and I was formally diagnosed with multiple chronic illnesses. I spent a substantial amount of time in waiting areas, exam rooms and pharmacies. My illnesses can be limiting, and this year they were more debilitating than ever before.

I’ve spent the better part of the year feeling sorry for myself, judging myself and beating myself up. I haven’t been able to meet my own expectations when it comes to employment or creativity. I constantly worry I’m not living up to society’s expectations by falling short of the norm of the 40-hour work week.

It feels like the whole world is judging me for not being productive enough, not earning enough money and not being independent enough. Even though I know my pain and illnesses are real and incapacitating, I say horrible things to myself every day and berate myself for my inability to live a normal life and do what I imagine the rest of the world is doing with no problem.

I tell myself I’m worthless.

I tell myself I’m useless.

That’s why I only have one New Year’s resolution this year: to stop judging myself for being chronically ill. I want to be kinder to myself and more understanding of my limitations. I want to stop imagining that the world sees me as useless and recognize that I always do the best that I can. I work through my pain every day. I take care of myself. I’m lucky to have support systems that allow me to pursue medical treatment and rest when I need to. And I won’t necessarily feel this way forever.

Although none of my conditions have a set end point, and I’ll likely struggle with them to some extent for the rest of my life, all I can do is be gentle with myself and work as hard as I can. I know it doesn’t help when I tell myself I’m a waste of the world’s time and space. Dwelling on my pain and all the things I can’t do only makes it worse.

I resolve to be more understanding of myself the way that I hope others are understanding of me. Just because I struggle and can’t do everything that healthy people can do doesn’t mean that my life isn’t worthwhile or valuable.

I will continue to seek opportunities that work for me and my body. I won’t push myself too hard just because that’s what’s expected of me. I’ll do everything I can to keep up, to earn money, to be social and to live a happy life. As long as I do those things and as long as I try my best, I’m accomplishing what I need to accomplish.

I resolve to take care of myself and give myself permission not to be perfect, to take breaks and to ask for accommodations when I need them. I will not be embarrassed or ashamed of what I go through, nor will I allow anyone to make me feel like I’m faking or “not really sick.” Including myself.

In 2017, I resolve to be more accepting and patient with myself, even when things get tough or seem hopeless and when it feels like the pain is unfair or will never end. I resolve not to let my illness define me and the way I live my life, but I will also accept when I need to slow down or stop to take care of myself.

It’s a lot to ask, but in 2017, I’m going to try to be kinder to myself about my chronic illness.

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