Sometimes I'm a Warrior

My Journey with Superior Mesenteric Artery Syndrome, POTS, and Other Chronic Illnesses

[smasyndromegirl]

[smasyndromegirl]

It's kind of amazing what a smile can do to your face. When I don't smile I look so sad and tired. No matter how bad I feel, a smile makes me look so much more alive.

[smasyndromegirl]

Our roommate lost her job, I was forced to take unpaid time off due to health, and we are short on rent. I can't afford medicine. We can't afford food. And if it can go wrong, it is going wrong. I don't know what to do. My family is poor. The government doesn't care. And I'm just tired and sick and need a miracle.

[smasyndromegirl]

Big slice of humble pie....

Before being diagnosed with SMAS I never asked for help. I was raised to be independent and self-sufficient. I had two jobs and maintained straight A's in school with extracurriculars. I was an honors student in the top percentage of my class. I moved out on my own at 17 and always paid my rent, utilities, car payment, and phone bill on time with my own money. But getting sick changed everything. My hours at work get cut all the time. I pass out and am forced to take time off. I have medical bills on top of medical bills and tons of medications I have to pay for. I can work less, but have to cover twice as much as before I got sick. And because of my age and because my condition is rare, I can't get any aid from the state unless I quit college and my job and basically never leave my bed - which is absolutely ridiculous. I'm a physics major. If I get my degree I can one day afford not only to pay off my medical bills, but to help fund research for rare conditions and help others like me who are young and dealing with terrible chronic and/or incureable illnesses. So I have to ask for help. I have to ask for donations just to stay alive and off the street. I have to swallow my pride and ask for help to stay in college. It's nobody else's job to help me. Nobody is obligated to take care of me. And I'd never want to put that on anyone even if I could. But I still have to cross my fingers and hope for generous people to find me. Honestly, it feels awful. I'm thankful for each donation. They mean so much to me. But I also feel so guilty that I even have to ask. It's a humbling experience and I just hope that one day when I'm in a better place I can pay it forward. For now I'll do my best to be a good person, work hard, help others in any way I can, and get through to better days.

[smasyndromegirl]

I'm still alive and sometimes I even put in the time and effort to wear makeup.

[whatsuprubberduck]

Friend: You’re too young to have so much wrong with you.

Me: Clearly someone didn’t tell my chronic illness(es) that.

[chronicchillpill-blog]

is anyone else afraid of talking about a having a good day with people because you dont want your issues to be invalidated simply because this day isnt as bad as it couldve been?

like, i hate telling people “sorry i was sleeping” because i dont want them to think my severe issues with sleep have gone away.

or i hate how obligated i feel to bring my cane everywhere because if i dont, people might assume that i never need one.

does anyone else feel like this or am i weird?

[smasyndromegirl]

[smasyndromegirl]

I just wanted to thank the amazing donors that are making my goals and dreams a reality, and let those who care or who are following my story know what's going on. My gofundme is linked in the description of the video if interested, as well as some of my other social media so you can stay updated.

[smasyndromegirl]

Social Media

You can find me on Instagram and Snapchat @ravenskye96 and in a few videos on YouTube about health under the name Raven Wilkinson. I love to spread awareness for invisible illnesses and make new friends.

[smasyndromegirl]

I am ready for fall and to pull out the rest of my sweaters.

[justsomeantifas]

doctors are such assholes to people with chronic pain. they want us to suffer so bad lol. like they’re so afraid to prescribe pain pills, and law makers have no idea the shit we go through to just exist so they keep making it more and more difficult for us to you know just live our lives……

[justsomeantifas]

Even in college the idea of pain pills and antidepressants are automatically discussed as a negative. Every single professor that has ever brought up this topic has gone out of their way to explain to the class that these should not be prescribed. The only focus is ever on the abuse, addictions, and overdoses rather than you know… the people that need it and how it helps them.

So naturally the whole class discussion always becomes medication is bad and the true answer to pain or depression or anxiety is dieting, exercise, herbs, yoga, etc. The discussion becomes even more scary when you hear how many actually want to go into a field that will directly deal with patients in this situation. And if a classmate speaks up about the benefits these medications have for some people it turns into a never ending argument of “there are better options,” or “they just haven’t tried everything available.” 

[chiffonknuckle-deactivated20170]

Bless you for this

[smasyndromegirl]

The lower it went, the better I felt....

Growing up we didn't have scales in our house. My mother struggled with anorexia, and in order not to trigger herself, she just didn't keep one around. So even though I was dissatisfied with my weight in high school, I never actually knew what the number was unless I had just been to the doctor. It kept me from obsessing. When I was diagnosed with Superior Mesenteric Artery Syndrome I was put on TPN. I had lost a lot of weight and had been weighed many times. But I wasn't doing it all the time at home. However, when on TPN you have to weigh yourself daily to make sure you don't have a fluid buildup and so your doctor can see if you're gaining or maintaining weight appropriately. And it became habit. TPN forced the numbers to go up. And I hated it. I had no control over it. I was being fed tons of fat and calories through a tube in my arm. Before losing weight from SMAS, I had been overweight, so even though I had lost a lot of weight before diagnosed, I felt like I was finally looking good for the first time in years. I didn't want to gain it all back. After stopping TPN, weighing myself daily continued. Since I had given up all food while on TPN, it was easy to only introduce healthy ones back. I became obsessed with eating only the healthiest foods and exercising like crazy. I watched the numbers on the scale drop and it felt amazing. I never had an eating disorder before TPN. I never was an over-eater, and due to health issues I went through periods of not eating much. But it was never a conscious choice in an effort to lose weight. Now, I've been battling this obsession with the scale and my weight for over a year. Due to my condition my weight never gets very high and I can't over-eat. But I still feel panic when my jeans are tight. Or I become entirely depressed or wallow in self-loathing if the number on the scale goes up. I've never admitted this part of the struggle that chronic digestive illness has brought for me. I avoid talking about how much I hate my body or how illness has destroyed what little self-esteem I had before. So thank you for reading. I just needed to put it out there in case anyone else struggles the same way.

[smasyndromegirl]

I feel like I used to be pretty. Even just a few weeks ago. Now I'm just empty and tired.

[smasyndromegirl]

me: please don't panic and overanalyze things again

brain: how bout i do a n y w a y

[the-beauty-of-words-blog]

[ehlersdanloszebra]

When someone tells me I'm too young to understand pain