My October Update: College and Health

blog-post

[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “My October Update: College and Health” with an orange leaf and at the bottom reads “Thee Crohnie Grace”]

 

The last time I posted was to bring awareness to Dysautonomia, since then I had my home infusion for the first time with Entyvio, saw a doctor about having difficulty swallowing, scheduled an ultrasound of my throat, saw an electrophysiologist and have to get a tilt table test to confirm what my cardiologist and electrophysiologist are almost certain is POTS, all while trying to balance my 5 college classes.

image1-99

[Image shows me on the couch with a green and brown blanket, I’m in a maroon sweatshirt with my port accessed, wearing my glasses.]

It was a bit of a hassle, one nurse showed up on Friday just to tell me she couldn’t do my infusion because I’m not homebound. Despite them calling a week earlier to tell me this already, they still showed up to essential waste my time. I was so upset. I was anxious enough because I had never had it done at home, and this nurse kept trying to reason with me and apologize. And I understood that she was sorry, but honestly it just annoyed me more.

Luckily we were able to get in contact with a different home health company who sent someone on Saturday so my medicine wasn’t put off another week, since it was already late. She was really nice and helpful and showed me how I could feel my port better since it was really deep, and she mentioned it still felt tilted but not abnormally so.

I tried to get my mom to watch The Little Prince during my infusion but she only half paid attention. It went by slower than normal because they didn’t send a pump so we just had to let gravity do it’s thing.

Once the infusion was done, she drew up some labs and off she went.

Shortly after, I began to have pain when swallowing. With all the changes in weather I assumed it was just a cold, or possibly tonsillitis since I had an issue with that a few weeks back. I ignored it and tried sipping on some hot tea, tried gargling some salt water, all the home remedies on could think of.

After two days of not being able to swallow my own saliva without pain, I went to QuickCare, where they gave me some heavy antibiotics and told me it was pharyngitis. I said sure and started taking the antibiotics and just hoped it would go away soon.

In the meantime I studied my butt off for my biology midterm which would be the deciding factor on whether or not I would be dropping the class.

Half way through the week I got my lab results. My white blood count was normal, I was anemic, and my lymphocytes and eosinophils were high. So that meant I didn’t have an infection because my white blood count would have been up. So with that I called my primary doctor and scheduled an appointment thinking it could be an allergic reaction (which my grandma and biology teacher still believe it could be).

So I went to see my doctor, she reviewed my labs and insisted if I was having an allergic reaction to the Entyvio that the benadryl I take every day for other allergies would have been helping. So she looked in my throat, she said it didn’t look red at all. So she began to feel around on my neck, she pushed in one spot and I noted that it specifically hurt in that one area when she pressed which was much lower down on my throat. She told me that since the neck has a lot of muscles she could only feel about 1/4 of the thyroid but thought she might have felt a knot or something, so she ordered a throat ultrasound to better examine my thyroid.

On top of that I had mentioned I was throwing up bile and having a sharp pain in the upper right side of my abdomen. I figure when I go to my doctor might as well get everything taken care of while I’m there so I don’t have to come back later. She felt around, and said she’d have them go ahead and do a gallbladder ultrasound while they were at it for me.

And with that I had to wait and deal with the pain when swallowing. I don’t go for my ultrasound until the 7th so gonna have to deal with it a while longer which sucks but it made me realize just how quickly I adjust to pain, like it still hurts to swallow but if I’m not focusing on it, I almost forget about it, it’s slowly becoming a new normal for me.

In the meantime I did other things like college and hanging out with my family!

image4-52

[Image shows my grandma squinting, she has long brown hair and is in a red tanktop, me in the middle with a dark green dress and brown sweater, my mom next to me with her hair in a braid, sunglasses on her head in a grey short sleeved sweater and above us is my sister Shelby smiling and looking like a super model.]

My family and I went out to a local farm and did a hay ride that didn’t have hay, fed goats, etc. I carved pumpkins with my dad and Sara (his fiance). And I binge watched a lot of Grey’s Anatomy with my grandma.

What time I didn’t spend with family was either spent studying, at the college, or at Amtgard or D&D the two things I do a week with friends, because I’m a geek.

image3-70

[Image shows me in a brown and cream medieval dress with a dark brown wool cloak with my arm extended looking up with closed eyes, I have a brown lipstick on and have an opalite headband like a circlet on.]

I passed my biology test, finished all my assignments for the week and had been surviving college, and squeezing my doctor appointments in early in the morning before my classes.

I saw my electrophysiologist Thursday, the only day he comes in to town for local appointments. I was really anxious, despite the cardiologist saying he was positive I had Postural Orthostatic Tachycardia Syndrome, he couldn’t do anything and thought an electrophysiologist could, but I was afraid the electrophysiologist would write it off as issues with my Crohn’s as so many doctors in the past have.

So many of my issues for so many years had been wrote off because of Crohn’s. If it weren’t for friends telling me I need to talk to my doctors about other possibilities I never would have learned about Gastroparesis, or EDS.

But the electrophysiologist was super nice, very sociable, and agreed with the cardiologist and said he was almost positive he was right, but he was going to confirm via a Tilt Table Test, he said he got plenty of information from my heart monitor I had to wear for a month, but that it was the formal way to confirm diagnosis.

So with that he told me to continue my Cardevilol for now while he looked into some medication that might be better for me. And scheduled the tilt table.

image1-100

[Image shows me sitting by the bathtub in a “Team Dysautonomia” tank top with my thin glasses on and a “meh” expression.]

 

Overall it’s been a crazy couple weeks, but tomorrow is Trick or Treat and I’m gonna dress up and pass out candy with my dad, Sara, and Chris. And Monday will be my college support group’s first official meeting! A lot still to come as my doctors want to try to redo my botox injections and pyloric dilation to try to get me off the NJ tube since it definitely doesn’t help my throat. In the meantime I’m hanging in there and smiling the whole way through. Life is good and I am happy. 🙂

image5-44

[Image shows me in the car I’m wearing a tan/white sweater and green with a black collar shirt under it. I have my opalite choker on, wearing some neutral pink lipstick, basic makeup. NJ tube, thin glasses, and purple fingernails with my hand resting against my face.]
Advertisements

Dysautonomia Awareness Month

blog-post

[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “Dysautonomia Awareness Month” with a teal awareness ribbon. At the bottom in small red text reads “Thee Crohnie Grace”]

According to Dysautonomia International, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

All my life I had issues with tachycardia and low blood pressure, my dizziness was often wrote off as “Well you just stood up too quickly, that happens to everyone.” 19 years later, I have a cardiologist scheduling me with an electrophysiologist to confirm his diagnosis of POTS, one of the different forms of Dysautonomia.

Other forms include: Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

Over 70 million people world wide lives with Dysautonomia. It often is a comorbidity of Ehlers Danlos Syndrome as well as: diabetes, MS, RA, Sjogren’s, and others.

Since the majority of my zebra friends have POTS, that is my main focus here.

The diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more when standing in the first 10 minutes of standing, or a heart rate of over 120 in the first ten minutes of standing.

Symptoms range from mild to severe. POTS is a syndrome, it stands for Postural Orthostatic Tachycardia syndrome. Often it is caused by another disease. It has many causes including but not limited to:

  • Autoimmune Diseases
  • Chiari Malformation
  • Diabetes and pre-diabetes
  • Ehlers Danlos Syndrome
  • Multiple Sclerosis
  • Mitochondrial Diseases
  • Mast Cell Activation Disorders
  • And Many More!

Currently there is few treatments for POTS, mostly just increasing fluids and salt intake, some doctors will recommend Beta Blockers, compression socks, and various other life style changes.

Some things that people with Dysautonomia wish people knew:

“That it’s not over-exaggerating or being a drama queen and it’s a serious chronic illness that effects all of the body functions we don’t consciously control. I’m not lazy, I’m not making excuses, and I’m not faking.” -Ari Dennis 

“That just because I look perfectly health doesn’t mean I am. My diseases are still trying to kill me and one day they’ll succeed.” -Leigh Bullis

“Don’t laugh at me or call me lazy when I ask you to pick something up that I dropped. Bending over is one of the biggest challenges I face, and I think out of everything, it’s the most under estimated of struggles.” -Allie Mary

“It’s not funny when I fall or forget words or phrases when my brain is literally lacking oxygen. And it’s not fun to be forced to spend the majority of your day with your feet propped up, and the rest of the time with them not up having a migraine.” -Kaylee Gallagher
“Don’t tell me it must be nice to lie down most of the time because it’s not… it can get quite depressing after a while.” -Cassie Gunn

I never realized it wasn’t normal until it started getting bad. I stand up and my heart rate goes to 160 sometimes higher. The room will get dark and stay like that for a long time sometimes or until I sit back down. I can feel my whole body pulsing, my chest feeling like I can’t get enough oxygen, like there’s been weights put on top of me trying to lower me to the ground. When I walk, it feels like I’m on a boat, everything feels like it’s shifting right under me. I’ve ran into walls at the college because my balance was thrown off by the dizziness.

October is Dysautonomia Awareness month, but for some people it’s 24/7.

 

 

Citation

“Dysautonomia International: Postural Orthostatic Tachycardia Syndrome.”Dysautonomia International: Postural Orthostatic Tachycardia Syndrome. N.p., n.d. Web. 13 Oct. 2016.

 

LARP and Cosplay: A Packed Couple Weekends

blog-post

[Image shows three spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “LARP and Cosplay: A Packed Couple Weekends”. Below is clipart of a medieval sword laying horizontally with ivy growing up from the bottom of the paper up behind the sword.]

Last weekend, I made my way to Hagerstown, Maryland with my over-belt (mentor/friend) and my boyfriend. I was excited and nervous. The weather was not looking promising over the weekend and also this would be my first event using my wheelchair. I was determined to build up my self confidence and arm strength over the weekend and gain some independence. Of course I ended up learning that it is okay to ask for help, especially when it is pouring down the rain and the field is very bumpy.

The first day we got there around 1, after a 5 hour car ride, the rain was light so not too bad, but chilly. Luckily I had the cloak I had made.

image6-21

[Image shows me in a brightened out background, short red hair with my wire wrapped circlet. Glasses on with my NJ tube but little makeup. I have my brown cloak on with my LARP clothes underneath.]

I made my way from camp to camp for a little bit, learning quickly that arm rests on a wheelchair were a pain in the butt, or in this case a pain in my arms since my arms kept hitting the arm rests.

But regardless I made my way from place to place, with the occasional help when I would get stuck in a small hole on the wet field. I hung out with some friends I hadn’t seen in a while and felt pretty confident about my wheelchair for the first time. It’s amazing how surrounding yourself with positive and supportive people can make such a change in how you view yourself.  Nobody helped without asking, which was nice. They all knew I wanted to try to be independent. And to cope with anything awkward I would make jokes. Jokes are sort of my go to when I feel awkward.

I frequently would tell people if they asked if I needed help, “No it’s okay, it’s arm day everyday.” And would flex my non existent muscles.

That evening was one of the roleplay courts ran by our lovely king, Nim Ruin. The rain was pouring and with the help of some great people we made sure I got to attend court by the king!

image7-18 [Image shows Marcus wearing a green and black tunic with a white belt on the left holding up on the poles to a canopy, in the center is me in my wheelchair being pushed by a guy in all black garb, then holding up two of the canopy poles in the front was a man in a red tunic and black pants and another LARPer in a green and brown tunic with brown pants.]

With my little entourage of awesome and amazing people, we braved the gross wet weather and made it across the field and everyone enjoyed court. We stayed for a while afterwards to chat with people before heading to the hotel where I could take off all the wet garb and get a nice hot bath, which was definitely needed by the lack of feeling in my toes.

The next day, we got up bright and early, my HR was not cooperative at 156 that day, but regardless I gathered my stuff and got ready to enter in the Arts competition they hold at each event. Due to my busy schedule, I only had two necklaces to enter. But regardless I was hopeful for good results, and by that I mean just beating my friend, Ryan. We like to bet each other on who is gonna beat who, for bragging rights.

I hung out mostly with my belted family that day, though my knight was unable to attend, it still is a family to me. They are all fantastic human beings.

After a while, Ryan decided he wanted to head off site to find food. One of the things that Hagerstown has that my town does not is a Red Robin, and while my stomach said “No, Grace, that seems like a bad idea.” My tongue said, “Heck yeah, Garlic fries!”

So I went off with Ryan, we went to Red Robin, where I enjoyed Garlic fries and a clean bathroom. Then we went back to the hotel where the garlic fries got their revenge on my stomach, but it was still worth it. 10/10 Would have done again.

Then to avoid having to change into my court garb in the nasty camp bathrooms, I went a head and changed. I accidentally tore my surgical glue off my port incision but luckily it was closed up and looking healed so I didn’t complain, the glue was itchy anyway.

image8-14

[Image shows me from the chest up, you can see my brown and cream satin dress and the red part of my chest with my closed off incision. Red hair, glasses, NJ tube with a purple end, and my wire circlet.]

We went back to the camp site and hung out for a while more, before my Uncle Tato invited me to go out with his friends to Five Guys and for Fro Yo. I laughed as he elbow slammed some random guys fries, thinking they were his friend’s. And also as he and his friend Juan filled their cups up with little yogurt and mostly candy. They were a riot, and I laughed so hard my jaws hurt for the rest of the night.

Tato helped me out a good bit navigating over some less than accessible places. Overall it was a blast. We stayed on site that night late, til I got sick in the really gross bathrooms and started feeling really bad. Then we went back to the hotel, I was too exhausted for a bath. And told myself I’d take one when I got home.

The rest of the week was dedicated to college and planning for the upcoming Pop Con at my college, WVUP. My plan was to go as Poison Ivy with my friend Jess as Harley Quinn. Sadly she didn’t get off work til I already had to leave, but I had a great time and met many awesome cosplayers and new friends.

image2-5

[Image shows me in a long red/orange wavy wig. I have bright red lipstick, green eyeshadow and contoured around my nose and cheeks green as well. I’m wearing a green top covered in faux ivy, I’m not wearing my glasses. Behind me is a photoshop of a bunch of ivy.]

The doors opened at 11 and my grandma took me. I met up with my friend Alexis who was volunteering with various other SGA members. I rolled around looking at all the vendor set ups and surprised at the amount of cosplayers at WVUP. I made sure to take plenty of pictures with other cosplayers.

[Image to the left shows me in my wheelchair in my long red wig, green ivy top and green gloves and green leggings next to a classic style Harley Quinn in a blonde pony tailed wig, and with a massive hammer which is cut off but says “Your Face Here” etched on it. Image to the right shows me with a more modern Harley. In burgundy and black costume and with her natural hair next to me with her arm around me.]

I got to meet a variety of Harley’s. My favorite being the girl in the photo on the right who when I asked for a picture got down and personal and said, “We’re going full homo on this one.” I about died laughing we had to take two photos.

On top of that there were a ton of Jedi’s which made me super happy.

[Image on the left shows a 7-8 foot tall Chewbacca cosplay along with a girl with a blue/green walker/roller in an amazing jedi costume with her hair pulled back into a pony tail, next to me in my wheelchair in my Poison Ivy cosplay. Image on the right shows my friend, Wendy, going all out posing with her green light saber and in her Jedi cosplay next to me who was laughing with my hands up.]

Ironically the girl on the right is in my art class and her and her entire family do Star Wars Cosplay. Her sister is the girl on the left and I think it was her dad as Chewbacca. Made me decide I am definitely gonna join the 501st Legion and join in on the Jedi fun.

On top of the cosplay they had a few artists there drawing cosplayers which was super cool. Me, and two girls got drawn together. Alexis as Fiona from Adventure Time and the other girl as a make-shift Game of Thrones cosplay using a roman esque dress.

image9-6

[Image shows a caricature doodle of the girl in a roman looking dress with a small dragon, Alexis as Fiona with Cake, and my as Poison Ivy holding a potted plant in my lap. On the paper says JD. Williamson 2016.]

I got my picture taken by a handful of cosplayers who loved my costume, some who even thought my wig was my natural hair which was funny. I had a blast. Even got to run into an old high school friend dressed as a dapper Deadpool or “Dapperpool” as he called it.

image10-5

[Image shows a man in a tuxedo and top hat with a dapper cane with a purple Deadpool mask, next to him is me motioning towards him in my Poison Ivy costume trying to keep a straight face.]

Overall it was a fantastic time and between the LARP and Cosplaying it really helped build up my confidence with how accepting and nice everyone was. It made it so much easier on me to enjoy an event and not feel dizzy and in pain the entire time.

I think only once did I have an awkward experience and that was with a guy as a ghostbuster telling me how inspirational it was for me to cosplay in a wheelchair and I couldn’t help but chuckle a bit because it took like zero effort and sometimes I can’t help but laugh when people call me inspirational.

Especially since I was cosplaying a villain ;D

But overall it was a fantastic event, and I wish I could have stayed for their cosplay contest but it wasn’t scheduled til late and I hadn’t planned on staying the whole time cause I had plans with my father.

This week will be dedicated to studying biology, showing my friend a game called Oxenfree, planning my trip for Cinci and scheduling my Entyvio infusion with home health care since my insurance will not let me do it at the infusion clinic anymore. Stay tuned for next time 🙂 And thanks for continuing to read my stories and follow along with my life.

 

Guest Writer: Joseph Smith

img_2813

[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