Living Behind Closed Doors of CKD by Karley Perez

The world is full of chronic illnesses, many people like to pretend like they don’t exist and live in a perfect world. However I’m sure most of us are pretty aware of how unrealistic that mindset is. I’m Karely, a not so typical 27 year old living with a chronic illness my entire life, along with other non-chronic but certainly traumatizing illnesses. My chronic illness is called Chronic Kidney Disease (CKD), meaning losing function in your kidneys. For some people it happens during a period of time it either take months or maybe even years. For myself however I was born with this disease, my specific condition was that my kidneys didn’t fully develop as a baby.

Unfortunately I was not diagnosed till I was 7 years old, the years before that consisted of common kidney failure symptoms. These symptoms include; nausea, vomiting, fever, loss of appetite, lower back pain, constant urinary infections, and very low energy, which are all the things I had as a child. This was in the early 90’s, my mom took me to any and every hospital possible but no luck in diagnosing me with the correct illness I had. Finally my mom ended up taking me to a whole known neighborhood family doctor who was also a psychologist. Just by my mom simply explaining to the doctor all my symptoms, he right away guessed it was my kidneys, so he sent me to get blood tests and sure enough I was Diagnosed with CKD.

My kidneys were no longer working at this point, so it seems like the doctor caught it just in time. I was sent to a hospital to see a Nephrologist which is a doctor that specializes in kidneys, so that I can begin a treatment called dialysis. Dialysis is basically a treatment that does the job an actual kidney would do, just not as efficient. I had what’s called a peritoneal catheter put in my stomach because that’s how I would get hooked up to the dialysis machine. This now meant I had to be careful in how I played, I had a strict diet because my toxins were not being cleaned out of my body since that usually happens when one urinates. That’s the job of a kidney to  collect the toxins you consume and empty it out by urinating.

The doctor had told my parents it was best if I had a kidney transplant as soon as possible for my benefit. At which point my mom decided to get tested to see if she could be a donor, since we are all or most born with 2 kidneys if your healthy enough and are a match you can donate one. The process of being tested to be a match takes months because they like to be very careful and sure that the kidney transplant will work out. Six months after I began the dialysis treatment I was able to receive my mom’s kidney. It was a success, the kidney was working perfectly and my mom stayed healthy. This was only days before I turned 8, I was discharged on my 8th birthday and ready to live a new life.

Things were not at all what we all expected, because with kidney transplants come anti-rejection medications that help keep your kidney going. However these medications had quite an effect in my physical appearance; I was always shorter than everyone else, I looked weirdly swollen and harry all over but especially in my face. You can imagine the hell kids at school put me through for looking so different from anyone else, constantly picked on and left out.

As bad as it was feeling or being physically ill, nothing scarred me more than the psychological trauma the kids in elementary school and middle school put me through. With my physical appearance being so different than everyone else’s I was pretty much the easy target. I still had a friend here and there throughout elementary school but it didn’t stop others, especially the little boys from calling me names. By my last year in elementary school finally one girl stood up for me when another was calling me names, that was the first time someone defended me because I was too afraid to say anything. I felt for that moment that some kids really did have a heart, especially since my teachers every year would explain my condition to the rest of the class.

Once I got to middle school I hoped to find the girl who once stood up for me, but I had found out she moved away. I ended up spending all of 7th grade alone with no friends at all, because I had reached the age where boys started noticing girls and of course I was the last person they would look at. Though the swelling from my face had gone down a bit I still had very hairy face, arms, and legs, so I would wear layers to cover it up. But once I had to change for P.E. with my shorts, and short sleeved shirts all eyes were on me, and not in a good way. I can hear the whispers and laughter from the other kids, I begged my doctor to give me a not so I wouldn’t have to do P.E. Which she did, but either way it was to late, everyone knew what I tried to hide, and I didn’t like talking to anyone about how much emotional pain I was in, no one was aware of what I was going through.

By 8th grade I had made a couple of friends that I would eat lunch with but eventually one decided she was too smart to hang out with us and the other one had to go to a foster family. I was found alone yet again; somehow I still made it through middle school and had my promotion. After 13 years of traumatic schooling experience, when I entered high school I isolated myself before anyone had a chance to push me away. Most of high school I spent missing days and weeks because I was constantly hospitalized. My transplant had failed after 4 years due to one of those side illnesses I had mentioned before. I restarted dialysis when I was about 12 years old.

In the eyes of the teachers and classmates in my high school I was just slacking off because I never told them about my health. I wanted to hide that part of my life and try to be normal like everyone else and maybe even be popular or have a boyfriend. That was a huge mistake that now as an adult I see, because even though yes it’s true that our illness does not define us but it is part of whom we are. I ended up dropping out of high school my junior year because it was basically impossible for me to graduate. I tried going to a continuation school but as soon as I turned 18 they kicked me out and lost all the credits I had earned.

/There were online classes I tried taking to earn my high school diploma but that same year 2007 I was called in for my second transplant. I was so happy and excited hoping things would change and I would feel better after this. Boy was I wrong, the donor was a deceased donor and the doctors committed negligence in not checking the kidney before putting it in me. I ended up almost dying while they were pumping me with fluids and strong medications.

I was hospitalized for almost a month and hardly remember much because the medications they gave me caused terrifying hallucinations. My parents and I were heartbroken because after waiting almost 7 years for another kidney it ended up not working though they still kept it inside my body. I was back on dialysis once again within a year or so, waiting once again for another transplant that would actually work this time. During this time I struggled to try and have a normal life and figure out a way to get my high school diploma because I really wanted to go to college. The online classes didn’t work, the counselor advised me to just get my GED.

My early twenties I spent mostly with my ex-boyfriend who I had settled for because my self-esteem at this point was lower than dirt. He was verbally and mentally abusive especially about my health, it’s like he wanted me to continue hiding that side of me. It seemed to annoy him when I was in the hospital or sick instead of being supportive. I lasted 5 years with this man helping him get out of drugs and alcohol abuse but in the end I was never accepted by his family or friends. Everyone told him I would die soon and he should be with someone prettier that didn’t have health problems.

I’m a firm believer in everything happens for a reason, the 2nd transplant I had that never really worked began bleeding one day causing blood clots and major pain. At that moment I finally opened my eyes and knew this guy was only going to bring me more anxiety and stress than I already had so I broke up with him before going to the E.R. My sister in law worked for a clinic with a doctor that worked in a local hospital so she convinced me to go to that hospital instead of my usual as she knew I was terrified of my old hospital after almost killing me. Once I was there, the doctor ordered some tests to be done and found out that the kidney had a loose artery that was bleeding onto my bladder. Unfortunately they don’t to big surgeries in that hospital so I begged them not to send me back to my old hospital.

Thanks to my sister in law, she pulled some strings and got me into one of the best hospitals in the state. There they had to remove my kidney which is a dangerous procedure that they don’t usually do unless it’s absolutely necessary. It turns out I stopped breathing during the procedure and ended up in a coma for like 4 days, I was on a breathing machine and my parents by my side afraid to lose their daughter. After those days I woke up with a tube down my throat and the doctors calmed me down and explained that they were going to remove it but I had to try and breathe. I ended up with the oxygen mask for a few days and no longer on the breathing machine, and eventually moved on to the oxygen they put through your nostrils.

After that experience I remained on dialysis for many years but I didn’t want to just live life on dialysis. I was determined to get my high school diploma not GED so I found out that there is a test to get the equivalency of a diploma and right away began hitting the books to study for it. It took me like 4 tries to pass, there are only 2 sections, English and math, I passed the English on the first try but math has never been my best subject. I just received my diploma in November 2016, feeling so proud that I never gave up.

I began going to a community college when I was 24 because they accepted me without the actual diploma as long as I promised to have it before finishing my college courses. I’m still going to that college now, I have been taking only a couple classes per semester because I knew with dialysis I would be missing a lot of classes.  I decided to major in Liberal Arts: Social Behavior, specifically getting certified to become a substance abuse counselor. So  far I’m doing great with a 4.0 GPA, and unlike grade school in college I decided to stop hiding part of who I am. I’m more open to telling people about my health and I have made so much friends that have been understanding and help me when I have to miss class.

Since the beginning of this year however I am not going to school because I just got my 3rd transplant on January 14th and its working great! I have never been happier than I am now and I finally feel free, it’s a feeling I have never felt before and I love it. I cannot wait to see what the future holds, and I really hope this kidney will last me the rest of my life. As normal as I would try to lead my life before by going out with my friends, or going to concerts and meeting my favorite country singer, I was never feeling all that great. It’s different now that I have a working kidney, I don’t have to fake being ok anymore, because I really do feel energetic and happy.

So here is my message for you reading this today, whether you have the same illness or a different one or maybe a similar one. Never hide who you are or part of your life from others out of fear that you will not be accepted into society. The people that are worth keeping around will stand by you even when they know the real you, every part of you not just the good. Don’t lose hope, don’t give up because as cliché as it might seem it really is true, what doesn’t kill you only makes you stronger and wiser. Don’t ever hide your emotional pain especially from your family because if there is something I have learned is that had I opened up to my parents, I could have avoided years of being bullied.

If you didn’t know much about my condition or had not even heard of it, I hope you understand it now. This way you can keep watch of any symptoms that might be abnormal such as the ones I had as a kid. Remember it can be fevers, loss of appetite, pain when urinating, lower back pain, not able to keep food in, losing energy or constant urinary infections. Keep in mind that a lot of people constantly have urinary infections and just assume taking antibiotics will fix the issue and that will be the end of it. However if it’s constant and many urinary infections or kidney infections it can at some point damage one or both kidneys to where they stop working. Take care of your body, and don’t be afraid to see a doctor because you don’t want to hear what they might say, that doesn’t magically make you better.

I have wanted to begin an online support group for a while because even though we all have supportive friends and family I know sometimes they don’t fully understand. I haven’t been able to gather enough people so if you are interested please feel free to let me know, let us be there for one another even if it can’t be in person. Sometimes just talking to someone online chats can change everything and turn things positive especially if they have been in your shoes.

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Karley at age 8 after her first kidney transplant.
[Image shows a young girl laying in a hospital bed, wearing glasses and with dark brown hair.]
[Image on the left shows Karley standing outside a house, she’s got one hand on her hip and doing a thumbs up. In the image to the right is Karley sitting in a hospital chair post op attached to monitors and pumps.]

This is Karley after her 3rd Transplant.

 

Thank you, Karley, for sharing your story.

Stop Suggesting Cures for the Chronically Ill/Disabled

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[Image shows three spoons on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Stop Suggesting Cures for the Chronically Ill/Disabled” and includes a flat faced smiley face but without a smile, just a straight line.]

For some reason when you are chronically ill or disabled, people find it necessary to suggest advice, often unsolicited, on ways they think will solve all of our problems. Often times they come from a place of not knowing what else to say, or trying to be helpful, without realizing that this is what we have doctors for, or that if we were interested in holistic medicine, we would ask or look into it ourselves.

Of course sometimes you just have to laugh at some of the ridiculous things that are suggested at times. I asked people with chronic illnesses/disabilities to tell me some of the most ridiculous things suggested to them as cures, some of the answers were simple such as “Have you tried yoga?” to more out there suggestions such as exorcisms. Here are some of their answers:

  • “You don’t need a bottle that rattles. You just need sunshine and running shoes.”

                  -Becca Smith

  • “Homeopathy for a neurological tremor disorder.” -Calandra Moore 

 

  • “An exorcism….no joke.” -Jillian Marcaccio 

 

  • “Lose weight and quit smoking to improve my congenital deafness because both of those decrease blood flow….” -Brianna Ebeling Butler 

 

  • “Eliminate red dyes…. they legit told my mom to not give caffeine, chocolate, or red dye and it would help.” -Lexie Moore 

 

  • “Colloidal Silver. The stuff that turns you into a smurf.” -Jason Whackolas 

 

  • “Just think ~happy thoughts~.” -Ashley McKay Brash

 

  • “I’m not kidding, I’m not making this up, my manager thinks if I find my true love my heart problems will stop.” -Rosaline Clark 

 

  • “Getting pregnant and having a kid, ‘it just resets everything’.” -Liz Gardner 

 

  • “That my joints would hurt less if I stop wearing jeans.” -Allyson Marie Sutphin 

 

  • “Taking a bath would help ease my depression.” -Caleb Rose 

 

  • “The suggestion that the medicine itself is what is making me progressively sicker, and the suggested remedy is to “just stop taking your medicine.””  -Gretchen Meunier 

 

  • “Listen to music. Calm Down. Be Happy. (Depression)” -Haylee McNally 

 

  • “I was told that just getting over it and being happy would cure my PTSD, anxiety, and depression…” -Olivia Parsons 

 

  • “I’ve heard praying or as people have told me “you’re not praying and believing hard enough”, someone even told me I must not be a good enough or true Christian otherwise I’d be cured by now.” -Ari Dennis 

 

When you look at some of the things suggested, from people with no medical experience, it just seems bizarre. If you’re one of those people who swear your essential oils, or wraps, or multivitamins will cure people who doctors are unable to cure, please reconsider.

You are only playing into the stigma that chronically ill/disabled people are just not trying hard enough to be normal/healed, and that it is our fault for being sick since we refuse to try some of the ridiculous suggestions given to us. If there was science backing it up, I would give it a consideration, and maybe talk to my doctor.

Ultimately, I trust my doctor who went to medical school over someone who believes vaccines cause autism and that holistic medicine can cure anything and that “Big Pharma” is just hiding cures for things.

So before you offer unsolicited advice, even if you have good intentions, think about whether or not you are really helping, or just hurting. Thank you.

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“Ambulance Dollars – Feeding Tube Awareness Week” by Tyler Stagman

Today’s Tubie Guest Writer is Tyler Stagman:

 

“I was warned when I agreed to the gastric tube that many people would not know what it is or how it works. I was lucky enough the first few years I had it to have a place nearby where they knew how to care for the tube, including placing it and taking care of any problems or questions I had with it.

Now that I have moved, I have found that I constantly have to advocate for myself even more than I did before, because many of my doctors are not familiar with my disabilities or how my care needs to be more hands on than most people. Every time someone has to check my stomach, I show them where the tube is and tell them not to press on it or too close to it. Most people are accommodating, but others do not take the time to care.

I am constantly surprised how many medical professionals do not know what my gastric tube is let alone how it works. I was hospitalized recently, and during my stay I received antibiotics via feeding tube twice a day. I had to teach every nurse I had during my stay how to give my medications via gastric tube. Even though I was there to get better and be taken care of, I had to teach my care team how to care for me. Most of my nurses took it very gracefully and were willing to take the time to learn. I did have one nurse who became frustrated and wanted me to just do it myself. While I understood that it can be frustrating, I was also frustrated that while I could be getting some much needed rest between being poked, prodded, scanned, and questioned constantly about my health I had to take the time twice a day to explain how to administer a medication, something I could do easily in under a minute.

Since my diagnoses I have learned two very important things: You are your biggest advocate. Do not be afraid to advocate for yourself! You are not being rude, you are not being condescending, you are telling your care team how they can best care for you! Most people admire you for advocating for yourself and do not see it as rude. The second thing I have learned is that the best way to raise awareness for yourself and about your medical conditions is to educate others. Your doctor cannot help you if they don’t know what is going on or how to handle the problem! In the interest of education and raising awareness I have made a video demonstrating the basics about using a gastric tube.”

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[Image shows a lady to the left with short brown hair and straight bangs in a sweater, and a younger lady next to her with long brown hair in a purple-ish shirt with a brown over sweater, she is smiling and looking into the camera. They appear to be sitting at a table with white cups on the table and something that is red and white checkered.]

Guest Writer: Joseph Smith

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[Image on the left shows 22 year old Joseph Smith taking a mirror selfie, he has short dark hair, and is wearing a black long sleeved shirt with a white under shirt. Image on the right shows Joseph Smith as a baby in a striped jumper with
a severe bilateral cleft lip and palate.]

I was born at a local hospital here in Parkersburg, West Virginia with
a severe bilateral cleft lip and palate.

The moment I was born, the doctor said, “He’s not breathing” then left
the room and never came back.

I was immediately life-flighted to a larger hospital where the doctors
said it was the most severe case they had ever seen.

They said I was having such difficulty breathing on my own that I
wouldn’t survive long.

I was placed in an incubator and hooked up to machines to help me
breathe, for what my mom says felt like for years. After finally being
able to breathe on my own, they let my mom hold me for the first time.

The doctors told my parents I should be able to live a full life, but
with some complications. Complications such as never being able to
speak correctly and my voice would sound like it was coming from my
nasal passage due to the large gap in my palate.

My family didn’t fret. I immediately started speech therapy as soon as
I was able to talk and before I turned four, we had a speech therapist
come to the house to work with me.

I went to several speech therapists everyday from four years old up
until my freshman year in high school. That is until I got to high
school when they said there was nothing more they could do to help
because my speech was as good as it could possibly get.

My most memorable speech therapists were two of the nicest and caring
ladies I have ever gotten the chance of knowing. I was embarrassed to
have to go to speech therapy early on and they made me feel that by
going to them, it showed that I wanted to better myself, for myself.
Mrs Taylor and Mrs. Zablocki were two of many to have changed my life
forever. Going to them never felt like work or a burden. They made it
fun by playing games and just having casual conversations about our
days and lives. Without them I don’t think I could have done so well
with my therapy.

Now let’s back track a little bit to my surgeries. I’ve had over
seventy – 10 on my left ear, 12 on my right. I had a titanium ear drum
placed in my right ear due to severe hearing loss (a common side
effect to having cleft). After the last article I wrote for a cleft
awareness page I have recently gotten a hearing aid for said right ear
due to it becoming so great in hearing loss as well as the titanium
ear drum failing to do its job.

The rest of my surgeries have ranged from reconstructing my upper lip
and my palate by doing multiple bone grafts, skin grafts, and skull
grafts, to cosmetic surgeries where they broke both of my jaws,
aligned them, and wired them shut so my bottom lip wouldn’t stick out
past my upper lip as much.

They also did multiple skin grafts to make my upper lip as normal as
possible, as well as took chunks of my ribs, skull, and both of my
hips to rebuild my upper lip and nose.

Now that you know what has happened you can now begin to understand
the way I felt. They say you can’t miss something you’ve never had,
for me that is upper teeth. They also say that when something becomes
normality, it ceases being painful. That was my case with surgeries.
After awhile I quit taking pain meds all together. When they took a
rib out I didn’t take pain meds, when they bolted and wired my jaws
shut I didn’t take pain meds. The thought in my head was I’m going to
feel this pain regardless whether it be once the drugs wear off or if
I get it over with now.

My real struggle though was recovery, the after effect of surgery was
the worst. You’re swollen, you can’t do anything, and that
overwhelming amount of pity you get from anybody who looks at you
kills every fiber of your being. That’s the worst part about growing
up with cleft, when people look down on you and when you can’t do the
things that everybody else can because of your restrictions.

Growing up was difficult, I had friends but I had more people who
teased and ridiculed. People who didn’t understand so they felt the
need to belittle. Every summer I was sitting on the sidelines instead
of running around like a normal kid. I was recovering from surgeries
every summer and having more than I ever expected. I was lost for the
longest time and I put on a fake smile and a cheerful laugh to fool
everyone else.

I can remember when I was in fourth grade two “friends” thought it
would be hilarious to put me on the backpack rack by my hoodie hood
while the teacher stepped out for a second to help another teacher
across the hall. When she returned she was livid and I pretended as
though it didn’t phase me and that it was a big joke.

That teacher is and always has been my inspiration for becoming an
advocate to help others who have had a harder time dealing with
growing up with cleft than I had. At the beginning of fourth grade I
wasn’t sure that I would be able to attend due to having a large chunk
of my hip bone taken out to reconstruct my upper lip and I was unable
to walk without a walker. The second week of school I still wasn’t
there and told my dad that I wanted to go and just see how it went.

I remember vividly going into the music room where my class was and
having to use a walker. All my friends in my class greeted me with
open arms and were ecstatic to see me and showed no interest in the
fact that I was having to use a walker. After the music class my
classmates had gym so they went there and my dad and I talked to my
teacher Mrs. Maul. She made it very clear that she would go above and
beyond to make me feel comfortable during my recovery.

She made good on that promise and let me bring a pillow everyday of my
recovery to class to sit on so that my hip wasn’t uncomfortable, she
let me play pranks and personally played games with me in the
classroom while everybody was on recess. To this day I am grateful
that I am able to consider her as my favorite teacher as well as a
lifelong friend that I try my best to keep in touch with through the
years.

Baseball was my outlet from all of my frustrations. My way of getting
away from my problems and forgetting everything and I have played for
the last eighteen years. Last year I discovered my passion and that
was to spread awareness for my birth defect/disability. I’ve done a
few things to which I got to share my experiences and help others who
have gone through what I did and may not have coped as well as I have
been and that has given me the greatest purpose in my life.

Looking back I wouldn’t change one single thing that I’ve been through
– it is what has made me to be the person I am today.

I’ve preached and preached this saying constantly: there’s always
someone out there that has it worse off than I do.

I’m writing this story now after 22 years of surgeries I’m finally
done with. I’ve been cleared of all my surgeries and I’ve overcome
things nobody deemed possible.

My goal in life now is to help as many more people as I possibly can,
whether it be with cleft or anything else for that matter, I’m willing
to do anything in my power to help anybody out there in need and I
encourage anybody and everybody to reach out to me if/whenever they
have a problem or just need someone to talk to.

The one thing I want to reiterate and make sure everybody in the world
knows is: you are not alone.

I dedicate this chapter of my life to you Mrs. Maul.

I am me, I am Cleft Strong.

 

 

Thank you, Joey for sharing your story with the world. 🙂

To share your story, email me at gshockey@wvup.edu

“Hope is a Dangerous Thing”: Accepting Things As They Are

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[Image shows 3 spoons lying on a laptop keyboard. Overlapping is a clipart image of torn notebook paper with a red paper clip. On the paper reads “Hope is a Dangerous Thing”: Accepting Things As They Are” with a pink daisy in the upper right corner. At the bottom of the banner is the Url for Thee Crohnie Grace Blog]

“Let me tell you something, my friend. Hope is a dangerous thing. Hope can drive a man insane.” -Stephen King

There was a moment in my life when all I wanted was for all my illnesses to be cured. I prayed and pleaded with the rulers of the universe that something would happen, a miracle maybe, and I would wake up and not be sick anymore. This was what I spent all day thinking about and wishing for. I became depressed because I wasn’t content with treatments and having a bit of normalcy, I wanted to be like “everyone else” and be healthy again. It was a terrible mentality that I struggled with for years.

And at some point, with the help of friends struggling as well, I realized that I didn’t need to be cured to be happy and feel whole. Everyone else wanted me cured. But I was content for the first time with the treatments, for the good days, for the treatment, instead of wanting more all the time.

If someone were to offer me a cure right now, I would still likely take it, but not for the reasons I used to. Before, I wanted to fit in, be like everyone else, to be seen as their equal. And now I’ve accepted my limitations and I couldn’t be happier. I am whole still. I am no less than everyone else and I have no desire to be cured for the benefits of others.

Even now a days I will have people ask me “Well is that feeding tube going to be permanent? When are you getting that ostomy reversed? You should try walking more without your mobility device?” And it’s because they think these things make my life less than whole, or at least that’s what I imagine.

But I have been given a number of extra good days thanks to my feeding tube, my ostomy, and my mobility device. I have accepted that these things are a part of my life, and it has empowered me and helped me become a happier person overall.

And it’s also just highly unrealistic to hope for cures for everything. My genetics are messed up and that’s pretty hard to reverse, so I would much rather have a good quality of life rather than focus only on curing things. As well as the fact that diseases mutate, much like the million flu strains we have now-a-days. So we may be able to eliminate one of the causes of a disease, but that doesn’t mean that genetics won’t continue to mutate, continue to change and evolve, and then we will end up will a million and one types of said illness.

Plus the “cure mentality” leaves disabled people out of movies, comics, books, shows, etc. Often times when a character becomes disabled it is wrote out of the books, or “cured”. Think Hunger Games, Katniss and Peta both were left disabled after the first Hunger Games but it was completely wrote out of the movies. In the comic books, Hawkeye is deaf, and in the Avengers he can hear. In the DC comics, Batgirl becomes disabled and in a wheelchair up until she was magically cured. And they justify this by saying, “It’s a fantasy world.”

If people can have mutant abilities, why can’t they be disabled, something that exists in the real world. The lack of disabled characters in media is disheartening, not only for someone like me at 18, but for children who are disabled and cannot find anyone to relate to in these forms of entertainment.

Accepting things is okay, it’s not giving up, it can be relieving to accept your limitations and stop trying to pursue something unreachable. It has given me a peace of mind. Being disabled is okay. It’s not a bad thing. It’s not a good thing. It just is. And we need to stop that erasure. I am Grace, I have red hair, and I also have a feeding tube, ostomy, and use a mobility aid. It’s just a fact.

Neurofibromatosis Awareness Month by Guest Writer Cassie Gunn

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[Image shows: 3 spoons laying on a laptop keyboard with a clipart of torn white paper with a red paper clip. On the paper are the words “Neurofibromatosis Awareness Month by Guest Writer Cassie Gunn” with the End NF blue and green ribbon above the text. And my photography logo at the bottom.]

May is a very busy month for awareness, there is arthritis, lupus, mental health, Ehlers Danlos Syndrome, World IBD Day, Lyme Disease, and there is also Neurofibromatosis (NF). Something many do not know about. So we have guest writer Cassie Gunn to talk about her experience with NF Type 1.

Neurofibromatosis Awareness Month

by Cassie Gunn

My name is Cassie Gunn. I was born April 5th 1990 in Edinburgh Scotland UK. I was born with Neurofibromatosis type 1 or NF1 for short. NF1 is an incurable progressive life threatening, life limiting condition that acts like cancer causing the body to grow tumours on the skin or nerves.
NF1 affects everyone differently so I will discuss how it has affected me… 🙂
For me NF is 99% internal, my spine and sciatic nerves are covered in hundreds of tumours thus causes 3 permanently slipped discs and Scoliosis.
I suffer from severe chronic nerve pain on a daily basis. I spend most of my time house bound lying down on electronic heat pads to try and ease my pain.
I have tried over 30 different painkillers including Morphine and different pain patches but none have helped me to even ease my pain.
At the moment I take Oramorph (liquid morphine) and Naproxen (type of inflammatory) to help to try and at least give me some relief.
I attend the chronic pain clinic every 12 weeks to see my specialist but if it’s an emergency I can see him sooner.
My pain specialist is the first doctor to actually sit down and actually listen to me, which makes me really happy.
Due to the severity of my pain, I began doubling up my painkillers by myself without anyone including my mum knowing, I was taking 38 painkillers a day to try and ease my pain. Taking these didn’t ease my pain and eventually my GP asked why I was needing my painkillers so soon and that’s when I told him what was happening. He wasn’t amused.
I have also recently been diagnosed with Gastroparesis and Ehlers Danlos Syndrome type 3, both conditions can also be connected to Neurofibromatosis.
Due to being chronically ill, I have lost all of my friends and my dream job of being a police dog handler.
I attend a respite to help me get out of the house and meet people who are my own age.
Due to NF is also have hearing loss in both ears so I wear hearing aids, poor eye sight, seizures, low muscle tone and Aspergers (form of Autism).
My total diagnoses are:
  • NF1
  • Gastroparesis
  • Elhers Danlos type 3
  • Aspergers
  • Scoliosis
  • Depression
  • Misophonia
  • ADHD
  • High anxiety
  • OCD
     All of these are often connected to NF.
     At first doctors believed that I had Fibromyalgia but it turns out it was something much worse.
     NF didn’t affect me until 2010, I now rely on a wheelchair outside of the house as I struggle to walk far on my crutches..
     It’s difficult being in so much pain, suffering from chronic nerve, muscle and joint pain 24/7 gets depressing after a while especially when I can’t sleep at night.
     I am glad to have Facebook where i can connect with fellow chronic illness warriors, I know I am not alone.
Thank you, Cassie for speaking out and raising awareness!
If you would like to submit your story or experience this week, you can send me approximately 500-1000 word submission with or without a photo to my email: gshockey@wvup.edu 
Thank you!

Lyme Disease Awareness Month by Guest Writer Mikaela Cash

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[Image shows: 3 spoons laying on a laptop background while a clipart of torn white paper with a red paper clip is in the center. On the paper in green words says “Lyme Disease Awareness Month by Guest Writer Mikaela Cash” with a small green awareness ribbon overtop.]

May is a very busy month for awareness, there is arthritis, lupus, mental health, Ehlers Danlos Syndrome, World IBD Day and then there is Lyme Disease. Something many do not know about. So we have guest writer Mikaela Cash to talk about her experience with Lyme Disease.

Lyme Disease Awareness Month

by Guest Writer Mikaela Cash

As a child, I was always told to stay away from woodsy areas and to constantly be checking my hairline for hidden ticks, but I was never told why these tiny little creatures were so dangerous. That is, until I suddenly got sick. I went to specialist after specialist in an attempt to figure out what was wrong with me, but with every diagnosis came more questions. Nothing was adding up. Every once in awhile, one of my mom’s friends would ask her if I had been tested for lyme disease, but we were so stuck on the diagnoses I already had that us and all my doctors kept thinking that it couldn’t possibly be lyme. This went on until earlier this year when my mom started to question whether it really could be lyme that I had. And when we found the horrible stretch mark-like rashes all up my sides, it was decided. I had lyme disease.

Of course, testing was still needed, but the rashes on my sides were characteristic of an infection called bartonella that always goes hand-in-hand with lyme disease. Within the next few weeks, my first blood test for lyme came back negative. The testing for lyme is so inaccurate, however, that it almost never comes back positive the first time. So we tried again with a second, better test. This second test not only came back positive for lyme, it came back positive by diagnostic standards set by the CDC, which is extremely rare and requires testing to come back positive for several strains of the disease! Along with being positive for lyme disease, my testing also told that I had two lyme disease co-infections, which included the bartonella that we had already assumed I had from my rashes. I finally had a diagnosis!

By now, you may be wondering what this lyme disease I keep mentioning is. Lyme disease is a bacterial infection caused by an infected tick bite. The symptoms are different for every patient and often mimic the effects of other diseases, which is one of the reasons why it is so hard to diagnose. And as I said before, the tests are horrible and it is very common for results to come back with false negatives. This is why even if you have tested negative for lyme, it can never truly be ruled out as a possibility.

It might seem like lyme disease is rare, but you’d be surprised how common it really is. Very recently it has become more clear how common lyme really is. More and more people are being diagnosed every day, even if areas where ticks aren’t thought to be found in. Lyme disease is quickly becoming a pandemic, and nobody even realizes it! May is Lyme Disease Awareness Month, and I am here to spread awareness. I’ve barely said in this article, and yet I have said so much. I am telling you right now that even if you don’t think you have lyme disease, to be tested anyways. And don’t be like those people who give up after the first test comes back negative. Go back and do a more accurate test. Always consider lyme disease as a possibility until proven otherwise.

All of this does sound awful, but there is hope. Lyme disease is treatable! But the treatments mean nothing if nobody is being diagnosed. So please, do your research and educate yourself further on lyme. Talk to your doctor about running tests. And most of all, help in the struggle to raise awareness! In this month of May, I challenge everyone who reads this to find at least one fact about lyme disease and share it on all your social media platforms. With your help, so many more people can be able to get the help they need.

Thank you, Mikaela for speaking out and raising awareness!
If you would like to submit your story or experience this week, you can send me approximately 500-1000 word submission with or without a photo to my email: gshockey@wvup.edu 
Thank you!