[Image shows three spoons on a laptop keyboard. Overlaid is a clip art of torn white notebook paper with a red paper clip that reads “#This Is My EDS Part 2” with a zebra head. In the bottom left corner is the banner for Thee Crohnie Grace]
Part two of the #ThisIsMyEDS Tag is all about Diagnosis with Ehlers Danlos Syndrome since diagnosis often doesn’t occur until later in life and is under diagnosed since it can cause an array of different problems per person.
1) How Long Did Your Diagnosis Take? When and how were you ultimately diagnosed? It took 18 years before I was diagnosed. Due to having Crohn’s since I was little, many doctors blamed my problems on Crohn’s and it’s related issues. At one point my GI had put on me Celebrex because he believed I had Juvenile Rheumatoid Arthritis because it is common with Crohn’s. When the joint pain and joint related issues began to get worse they finally sent me to a Rheumatologist who told me I had Ehlers Danlos Syndrome and no arthritis, and after a genetic study it was determined I had the COL5A2 mutation that is linked with Classical Ehlers Danlos.
2) What was your emotional reaction when you were diagnosed? And Now? Honestly it was a huge relief to know it wasn’t all in my head, that I had validation, and relief to just have an answer. Of course then there was a bout of sadness over the lack of treatments and the fear of getting worse. Now I’ve just kind of accepted things and am at peace with my health overall.
3) When did you first start experiencing symptoms? When did you acknowledge them as symptoms? When I was 9 I started getting bad joint pain, around the same time I started Remicade for my Crohn’s disease, I assumed it was just a side effect of medicine and wasn’t until other problems surfaced that I began to suspect something was off.
4) Was there a specific age where your head drastically changed? If so, when was that? My junior year and that summer were when things really started causing problems. I had lost a lot of weight from a bad Crohn’s flare and the weakness and fatigue made the pain even worse, things were subluxating and dislocating more frequently and I started using a cane because I found standing and walking to be incredibly painful and I felt off balance quite frequently because I put all my weight on whichever side hurt the less.
5) What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? I have access to all my needs really. Medicine wise I rely on pain medication and lots of medication for comorbidities such as gastroparesis and POTS. I have an NJ feeding tube that keeps me nourished and keeps my medicine in my system. Mobility device wise I use a walker on a every day basis and a wheelchair as needed for longer events or things that require a more extensive amount of walking. I also use braces and KT tape on a regular basis due to joints dislocating or subluxating.
[Image shown at the top left shows my thighs and knees sitting in a car, my left leg has a brace and my right leg is taped with pink and purple KT tape. Image shown at the top right shows me sitting in a wheelchair in a cafeteria with my brother standing behind me holding his phone down for me to see while our friend stands to the left looking at his phone. Image at the bottom shows me in my dining room from the thighs up, my hands resting on the handles of my walker, I’m in white shorts and a pink shirt with some planets and text that says “Far Out”]
6) How often do you go to the hospital? How comfortable are you in medical environments? I go to the hospital for follow ups with specialists and procedures as necessary, I tend to avoid the ER unless it’s for something that can be handled locally (like my kidney stones) because all my main doctors are 4 hours away at Cincinnati so we can usually schedule a direct admit to avoid the hassle of dealing with an ER since they are not usually equipped to deal with chronic issues. Honestly in a hospital I am pretty comfortable now (I used to not be) but I still get very uncomfortable in ERs due to many ERs not knowing how to handle chronic illnesses and such.
7) What kind of resources and support do you use? My family and friends are really my main support. There’s not many sources around here so I rely on doctors and in depth research when it comes to questions and resources.
And that concludes part 2! We are nearing the end of May and there is still one segment left so stay tuned and remember that when the month ends, awareness shouldn’t stop there. Spreading awareness can help by gaining the attention of others, raising money for research which could lead to treatments or resources for EDSers everywhere.
[Photo shows three spoons laying on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “#ThisIsMyEDS Part 1: What EDS Is Like On My Body”. Below the text is a picture of the profile of a zebra head. In the bottom left corner is the blog banner that reads “Thee Crohnie Grace”]
“For EDS Awareness Month I’d like to try and uplift the DIVERSITY of EDS and how it impacts our lives as individuals. EDS manifests itself on a wide spectrum and our symptoms can be fluid as well.” -Annie Segarra
You probably know Annie from her Youtube videos where she talks about disability and diversity. Annie also has Ehlers Danlos Syndrome and is an activist when it comes to spreading awareness. Thus came her idea of EDS tag. It includes three separate parts to be released over the month of May (EDS Awareness Month). This is the first part which is mainly a bit of an introduction and just covering some of the basic stuff, so let’s get started. And if you have EDS, feel free to join along and tag in with the hashtag: #ThisIsMyEDS
1. Name, Pronouns and EDS Type: So my name is Grace, my pronouns are she/her or they/them (Gender is a social construct) and I have Classical EDS which was formerly known as Type 2.
2. How Are You Feeling Today? Overall I feel pretty decent, of course I’m also writing this after taking pain medicine and Benadryl haha.
3. Can You Explain EDS in a Sentence? Ehlers Danlos Syndrome is a genetic connective tissue disorder in which the body doesn’t produce enough collagen or produces defective collagen.
4. Whats Your Favorite Analogy for How EDS Feels? OR What EDS is Like? For me it feels like my joints are like wet spaghetti or like I’m being held together by very old rubber bands that stretch way more than they should and snap very easily.
5. What Are Your Symptoms and Comorbid Illnesses/Conditions? I have chronic pain in my joins, sometimes muscle pain from bruises, hyper mobile joints that frequently subluxate or dislocate, stretchy skin, trouble walking, poor memory and trouble regulating body temperature. Comorbid illnesses such as POTS, Gastroparesis, Cluster Headaches and Crohn’s Disease.
6. How Does EDS Impact Your Daily Life? Well I have to use a walker or wheelchair now to get around, I’m in physical therapy twice a week, I’m tube fed, I have an ileostomy, I have to take medicine in the morning, afternoon, and night. I’m unable to work, but I am still in college. I very seldom leave my house except to go to college or doctors’ appointments anymore. I am often in too much pain to do much of anything except stuff I can do from bed or from a couch, I’m always exhausted no matter how much sleep I get and have trouble getting to sleep because of pain or here recently because of cluster headaches. It can sometimes do a number on me emotionally because there’s so much I want to do any I’m unable to do it. Such as the fact I didn’t go to my latest LARP event because I was feeling so horrible.
This concludes the first part of #ThisIsMyEDS. Part two will be done on the 15th, and part 3 will be done at the end of the month. To learn more about EDS check out The Ehlers Danlos Society.
[Image shows me with strawberry blonde hair without my glasses, my makeup is on and my feeding tube is dangling over my arm. I’m wearing a white halter tank top and wearing a Mjolnir necklace. Along the bottom in black text reads #ZebraStrong and has the face of a forward facing zebra.]
[Image shows three spoons on a laptop background, overlaid is clipart of torn white notebook paper with a red paperclip. On the paper in black text reads, “Learning to Accept Your Limitations: PT and College” and a black disabled logo of the stick figure in a wheelchair. In the bottom left corner is the blog logo]
It has been a while since I have gotten to post because college keeps me extremely busy and I have to ration my energy to high priority things like college, homework, self care, etc. As finals are nearing I have been even busier and struggling with headaches and vomiting a lot more here lately, no real reason except probably a mix of stress and the changes in weather.
I hit a bit of a low point this weekend. Most of the time I am an extremely upbeat and positive person with everything that is going on, but every once in a while it hits me harder and I start to get a bit maudlin. It’s hard to accept my own limitations sometimes. There was so many things I used to be able to do that I no longer can. I have to put my health before things I love far too much it seems. And while I know things could always be worse, they could be better.
This weekend I was supposed to attend my spring LARP event in Maryland, but thanks to a hip dislocation and headaches and nausea I stayed home because I knew I would be miserable. Even if I did have fun, I would suffer from it for twice or thrice as long as the event itself. It was going to rain which meant pushing myself around in the mud and it’s hard enough to navigate rough terrain in a wheelchair when it’s dry, let alone wet. And while I could have taken my walker then I would be in pain from stressing my joints even more after various dislocations the week before. So I stayed home.
At first it was a moment of relief because I knew that I would feel better physically staying home, but emotionally it took more of a toll. A lot of frustration and tears, and watching Moana on repeat for 2 whole days.
I was eagerly awaiting my PT (physical therapy) which was today. I was anxious because not many doctors know or understand Ehlers Danlos Syndrome, so I was afraid of getting a doctor who had no idea what to do, or get a doctor who was unwilling to listen or would push things too fast.
[Image shows me standing with my walker in khakis and a blue and grey striped shirt, feeding tube not hooked up]
I was happy to find out that my PT knew about EDS, knew not to push the movement but that I needed to do non weight bearing muscle strengthening exercises. She was incredibly nice and funny and talked to me like a friend while we did evaluation of my joint strength and did a few chair practices and had me walk a bit so she could see how I walk so she could better evaluate what braces would work best for me.
She told me to let her know when my pain was too bad and we could stop, but I pushed through because I was a bit excited and it felt so good to know I was making an effort. I often feel like people think I do not make an effort because I use mobility aids and because I’m not up moving all the time. So it felt validating to know that my PT acknowledged my pain and weakness and we worked with that to still get some exercises as well as she encouraged the continue of KT tape because it is good at helping with stability.
[Image shows my legs covered in KT tape laying across a couch with a white blanket with owls and a green blanket down towards the feet]
We only had a bit of issues with some buckling of knees when she had me walk with the bars which caused a bit of a sharper pain in my right knee and some bruising but overall I was extremely pleased with my first day of PT and she wants me to come back twice a week and she gave me some chair exercises to do at home.
[Image on the left shows me sitting in lavender shorts with my knees with KT tape and then using a belt to do some strengthening exercises from today. Image on the right shows a paper with a fold in the middle, it has little images of people sitting on chairs doing exercises and text explaining those but it’s not very visible]
After PT I went home and ended up taking a nap once I set up my feeds because I started getting a really bad headache. I woke up throwing up so I missed my class of the evening. I did some PT exercises while watching Moana for probably the 100th time (seriously the best movie ever).
Finals coming up have me a bit stressed out so I’m trying to remember to allow myself time to relax, hence this blog post, because if I stress too much I will become overwhelmed, I’ll get sick and it will make the things I stress about even harder. So I have to take a deep breath, remember my limitations, and do what I can in that moment and try not to overwhelm myself by the future. Present day Grace has to take care of Future Grace and the only way she (I) can do that is by remembering self care and to accept my limitations, no matter how hard that may be.
[Header shows three spoons on a laptop keyboard with clipart of torn white notebook paper with a red paperclip. On the paper reads “College With a Disability” and a red symbol of a stick man in a wheelchair. In the bottom left corner is Thee Crohnie Grace blog logo]
College can be hard enough on the average person. It is a strenuous full time job of writing papers, studying, reading the material, re-reading the material, studying some more, and praying that you pass the midterm tests.
[Image shows notes featuring details about the skeletal system. There’s a blue gel pen and a set of highlighters on top of the paper.]
For people with disabilities or illness, this can be especially hard. Previously on here I discussed the issue of accessibility in college. I discussed how some lecture classes were nothing but stairs, how some class rooms were so cluttered you couldn’t fit through, etc. This semester has made it apparent that there is still more to discuss: absenteeism, testing, pain management and fatigue management while at college.
It is important that regardless of severity of your illness or disability that you know help is offered, though some colleges are more accommodating than others. Some colleges allow extra test time, or taking the test at a different time alone to make it more accessible, while some colleges have better things to offer such as text-to-speech options, transportation from classes (at larger colleges), and in some cases omitting the 3-absentee rule.
This is why it is important to talk to the disabilities office at your college to see what types of accommodations can be made for you. Of course some will require notes from doctors and proof of diagnosis before you get accommodations, but in some cases simply talking to your advisor or talking to the disabilities office about your concerns for the semester can help them find a way to help you out.
In my case, I have preferential seating (even though in college there’s very rarely assigned seating), but after I had an issue with one professor assigning seats and trying to put me in the top row (of stairs), we talked with disabilities and got it all sorted out. I can take my lab practicals by myself while the teacher switches out the slides for me, because after the first practical we discovered that her testing style was not very accessible. You had to move around the class room, you only had a minute to answer 3 questions per slide, and people were not pushing in their chairs, which makes it a bit hard with a mobility device.
[Image shows me standing with my walker, I’m wearing jeans and a white t-shirt with sign language spelling out “Bruh” and carrying my backpack over my shoulder hooked up to my feeding tube.]
Some professors can be really accommodating on their own if you talk to them. For the changing of lab practical style for me, I didn’t even have to go through the disabilities office. I simply messaged the professor and explained how it was difficult with up and down movement due to my POTS and that without people pushing in their seats I couldn’t maneuver around to the stations easily.
But the biggest issue is attendance at college, most colleges have a rule that after 3 missed classes, they can simply fail you. While some professors are lenient on this policy, others will dock your grade a letter for every time you miss. Talk to your professors and the disability office. Sometimes they can make accommodations so that absenteeism isn’t held against you.
Being in college all week can be hard when you also have doctors’ appointments throughout the week almost every week, not to mention surgeries, unplanned ER trips, and not to mention just being too exhausted or in too much pain to make it to class some days.
I think colleges tend to forget this. It is hard to keep up with everything and also keep up with all the college work. I am only taking 4 classes this semester but am still struggling because I also had to have surgery, deal with pain and exhaustion, brain fog from medication, etc.
And then some colleges decide the best way to deal with people struggling in college is to guilt trip them. My college sent out emails to students saying their grades reflected on them, their family, their significant others and could negatively impact the rest of their lives.
This is not the way you deal with students when 1 in 2 Americans now have a chronic condition of some kind whether it be something like Asthma or something more severe like Cystic Fibrosis. Regardless of severity, there is an increase in chronic illnesses and diseases, which means an increase in disability. Which is expected to only increase as the years go on.
With this in mind, you think schools would be more equipped to handle the students out of nearly 133 million people struggling. And while some people can manage their illnesses and have zero interference with college, many struggle with controlling symptoms and side effects of their illnesses.
Perhaps this stems from the fact that the majority of illnesses are invisible illnesses.
“Notably, 26 million persons were considered to have a severe disability; yet, only 7 million persons used a visible device for mobility. Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers. In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.” -National Invisible Chronic Illness Awareness Week
So with the facts, why are colleges still lacking a lot of accommodations? I have been thankful that my college has worked so well with me, but I know others who attend my college and have disabilities or illnesses who receive limited to no accommodations or support from professors. I think it’s important to talk about these things in order to see a change.
With statistics showing that chronic illnesses are on the rise and will continue to rise, it’s important for the world to take the steps to make sure everyone has a chance to receive education.
Is your college accommodating to your illness/disability? If not, what would you like to see be changed?
To quote Malala Yousafzai, “Let us remember: One book, one pen, one child, and one teacher can change the world.”
[Image shows the edge of a laptop and the top of a notebook with a handful of tabs reading things like “Intro”, “Ch. 2”, “Lang.”, and various other tabs.]
[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. In black text on the paper it says, “The Reality of Life with a Chronic Illness”. There is a picture of a loop recorder and a bard power port in the bottom corners of the paper. And it the bottom left corner is the Thee Crohnie Grace blog logo.]
This week has been a rough week for me, I started with a cold and ended it with surgery and my Entyvio infusion. My electrophysiologist had decided at our last appointment that with how high my heart rate was getting (190+) that he wanted to monitor my heart more regularly. He suggested a loop recorder, a chip that is inserted under the skin to monitor the heart. For many it is placed under conscious sedation but he only uses lidocaine shots and no other drugs. When I mentioned to him that because of my EDS that local numbing doesn’t always take on me, he insisted that connective tissue disorders have nothing to do with numbing and that lidocaine works on EVERYONE.
Luckily, when I got the hospital for the procedure Thursday the nurses at the Cath Lab recognized me almost immediately since I’m there frequently to place my NJ tubes and they have come to know me as “the girl who places her own tubes”.
[Image shows my legs crossed and feet bend inward with my hospital gown with blue and green diamonds on it. My feet have purple and pink ankle socks on them.]
When I mentioned to them my anxiety about the numbing not working they basically said screw what the doctor said, you’re one of our favorite patients and if you need something we will help you. So they got a higher percentage of lidocaine and also gave my dilaudid and fentanyl to help calm me down. Sadly it didn’t do much.
[Image shows me in a hospital bed, there’s an IV pole behind me with two bags hanging from it. I’m resting my hand against my face and have my glasses on and am wearing a hospital gown.]
After an hour or so another nurse came in and actually explained the procedure to me, something the doctor had not done. They brought in everything into my room, not taking me back to any OR or anything. They cleaned my chest off with betadine and alcohol.
It was then that they pulled the screen up to keep me from seeing what was happening, which only made me panic more. I was upset at the doctor for being rude and not listening and I was upset that everyone kept telling me I shouldn’t worry because it was just a simple surgery or being told by a doctor who had never gotten a tattoo that if I could handle a tattoo, then I could handle this surgery. They gave me a couple shots of lidocaine which I felt all of, and then a sharp pain and burning which took my breath away as he cut an incision into my chest above my tattoo. I started hyperventilating from the pain and couldn’t make out words or full sentences from the pain and also from the panic. I felt terrified, in pain, and embarrassed by my reactions.
Once it was over they glued the incision and patched me up with some gauze and IV3000 because the nurse remembered that I had sensitive skin to other adhesives.
[Image shows a picture of my chest, you can see my previous scar from my port surgery, my phoenix tattoo and then a bloody glued up incision above the tattoo.]
[image shows me with my glasses pushed up onto my head, wearing a hospital gown with orange betadine stains, my mom is sitting behind me in a jean jacket.]
My mom helped me calm down before we left and went to drop off my prescription for some pain medication. Friday went by fine, minus some pain and discomfort and some feelings of nausea but nothing too bad.
[Image shows me in a grey tank top, my feeding tube unhooked and hanging down, my chest is taped up with a small piece of gauze over my incision, no glasses on.]
Saturday I woke up bright and early for my Entyvio infusion, my plan was to get my infusion, change my surgical dressing, and then go to the comic convention that was taking place at our local art centre. I woke up with a fever but otherwise feeling just fine.
[Image on the left shows me with my makeup done, no glasses, in a black lacy top with my Mjolnir necklace, under the lace you can see my tattoo faintly and the gauze over my incision site. Image on the right shows a white thermometer on a blue, white, and yellow bed cover, the thermometer reads 101.8]
My home health nurse got there around 11 and we went to change my surgical dressing first since it was covering the access point of my port. As she changed the dressing the glue fell off and the wound opened and began to ooze. Leading me to freak out a bit. She tried to access my port once we got it recovered. Twice she stuck me and while it was in the port, there was no blood coming back when she pulled on the syringe.
[Image shows me visibly upset, holding a dressing onto my chest, my black shirt unbuttoned to access the site.]
After the second try and seeing that the wound was oozing through my new dressing, we decided it would be wise to go to the ER and get it checked and that she would come back tomorrow and we could try again.
So my mom and I headed to the ER, expecting them to close the wound with stitches or something.
[Image on the left shows me with my glasses on and face being covered by a medical mask, my hand still on my chest. Image to the right shows me in the emergency room with a gown on.]
Due to the fact that the flu is rampant right now, my mom made me put on a mask to keep me from getting anything from the other people sick at the ER. Once we got back the nurse said all they could do for the opened surgical site was clean it out and bandage it, that they weren’t allowed to close it once it reopens because it would risk sealing in something that would lead to an infection.
[Image shows my from half the face down to the top of my chest, my dressing has been taken off and there is a small incision gaping open in my chest above my tattoo, my feeding tube is hanging down across my chest.]
So they patched me up and sent me home, they didn’t do labs, or anything except slap a bandaid on my open wound. And with that I had missed the first day of the comic convention. So I went home and slept for a while and anxiously awaited the next day when my home health nurse would be back to try to access my port again for my infusion.
So today I woke up, my chest itching and covered in red patches. So on top of my pain medicine, I also took some benadryl to help with the rash all over my chest.
[Image shows me in a dark green tank top, my tattoo and Mjolnir necklace showing, and my incision covered with special bandaids, my chest covered in red splotches all over.]
And then we waited for the nurse to come back, we set everything up, she tried to access my port again and still no blood draw. So she got a different sized needle and tried a second time, still nothing. Determined though to not get stuck again and also to get my port to work because it needed flushed regardless of whether or not I got my Entyvio infusion.
So she had me raise my arms, lay on my side, lay back, turned the needle every which way, until finally after 30 minutes or so of digging around and trying to find the perfect position, we finally got blood return and was able to flush the port. So she flushed it with heparin before we started the infusion just to be safe.
[Image shows a black and white picture of me laying back, with my glasses on, necklace laying off towards the side and port accessed and taped down.]
By the time everything got finished today, I had missed the second day and final day of the comic convention. It has been one hellish week and I will be so thrilled when things ease up, but it has been a good example of how no matter how simple a surgery is, it’s still surgery, there are still complications that can happen, and pain is pain. And this is just the average life of someone with a chronic illness.
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.
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.]
[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
“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.
“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.”
[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.]
[Image shows three spoons 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 “Feeding Tube Awareness Week” with an image of a red heart with an outline of a feeding tube. In the bottom left hand corner is the logo for Thee Crohnie Grace Blog]
This week starts off Feeding Tube Awareness Week, but for me I spend the majority of my time educating and bringing awareness to such things. So I will be discussing only briefly what feeding tubes are and what they do and then I will be giving some quotes from other Tubies on what they wish people knew about feeding tubes!
So what are feeding tubes? They are an alternative way to receive nutrition when it would otherwise be very hard for someone to receive nutrition through oral intake. There are various reasons as to why people need feeding tubes. Some reasons include malnutrition from Crohn’s disease, GI paralysis from various illnesses, Gastroparesis, inability to swallow from various causes, MALS, and many other reasons.
There are many different types of feeding tubes: Naso-gastric, Naso-jejunal, G tube, GJ tube, J tube and so forth.
A Nasal tube is inserted through the nose and either goes into the stomach (gastric) or further into the digestive tract and into the small bowel or jejunum.
[Image on the left shows a white silhouette of a man with his head turned to the side but body facing forward, it shows a feeding tube as a dark blue line going down the nose and esophagus and into the stomach, then shows a lighter blue showing where the nasal jejunal tube would be placed. Image on the right shows a white feeding tube coiled up on a grey background with a red end.]
With a nasogastric tube people are often able to insert the tube themselves and remove it. With a nasojejunal tube they are often placed by a radiologist since they must be guided into the small bowl under x-ray.
With other tubes like a G, GJ, or J tube, they are surgically placed and inserted straight into the stomach or jejunal.
[Image shows a tan silhouette of a person with their head to the side showing a simple doodle of the stomach and intestines. It shows a direct G-Tube leading into the stomach.]
With a GJ the G tube has an extension tube that goes into the jejunal. And with a J tube, it goes just straight into the jejunal.
So What Do Other Tubies Want You to Know About Feeding Tubes?
“Your throat can kill you if you have a simple cold… feels like something is rubbing raw against a cut open skin when swallowing.”
“People stare at you in public.”
“When you get your tube caught on something and you try to save it by falling or ruining something cause you’d rather not have to go to [the ER].”
“Waking up in a puddle of bile and formula…while you sleep and it disconnects.”
-Sydney Rohmann
“It’s okay to eat in front of me even when I can’t and to invite me to hang out even if it is food-centered. I hate feeling left out simply because they don’t want to hurt my feelings or “make me hungry.” -Elizabeth Schmidt
“Just because someone has a feeding tube doesn’t mean they can’t eat some things orally. In fact some people (not all people) can still eat a little bit orally even though they have a feeding tube.”
“I also wish people would just ask when they have a question instead of just staring. We are still normal people. We just have a medical issue…”
-Riley Skapik
You can have a feeding tube and not be dying.
Anyone of any age can have a feeding tube.
They are not always comfortable. For some people they can be quite painful.
They are life saving devices.
It is not a scary thing.
It is possible to throw them up if you’re not careful. And it is not enjoyable.
I am a college student who has had an NJ tube over a year now, and before that had an NG tube for almost a year. Soon, hopefully, I will be getting my GJ tube placed since my nasal passages have been developing more scar tissue which can make placement harder. But I am grateful for my feeding tube helping me maintain my weight and help me stay nourished.
[Image shows me in a blue and grey striped shirt with my hair pushed back by my glasses, my hand is resting on my face. I have my feeding tube hooked up. At the bottom in the middle is a red heart with a feeding tube outline and in white text in the heart says “I am a tube”.]
[Image shows a sepia colored background of a wooden table with notebooks laying on it stacked on top of each other. Overlaid is a clip art of torn white notebook paper with a red paper clip with a pen in two different shades of red. In red text on the paper it reads, “Making First Impressions: College and Disability” and in the lower left hand corner is the logo for Thee Crohnie Grace Blog.]
Last Monday was the start of the new semester, due to errors with registration I was a class shorter than I had originally planned which made my schedule pretty light. I was hoping for an easy week, but for people like myself sometimes the first week is more stressful than even finals week.
The first week I always have to meet with the disabilities office to sign off and give a list of my professors, for they all will receive a letter about how I have various illnesses, various medical devices, and that they should try to be accommodating to those things.
Typically when teacher’s receive this, they tend to all think the same thing: sick girl who will miss class a lot, struggle, and expect the teacher to hold their hand and walk them through things. I’ve seen the way teacher’s have treated me in the past and I know that this tends to be the conclusion some harsher teacher’s will come to, while others will be extremely kind and accommodating or even the occasional “Yours story has inspired me.” or “You’re such a brave girl.”
I have discovered a way to combat this over the last few semesters though, and it basically comes down to trying to look and act as abled bodied as possible the first week, talk to the teachers before they get the disability office’s letter, and prove that I am ahead of the ball game by working twice as a hard as other students.
[Image shows school supplies on a hard wood table. Sticky notes, a binder, notecards in a plastic container, notebooks, etc.]
So come Monday when I went to my first class (U.S. History) I had already got my books, notebooks, highlighters, pens (that you don’t have to push down hard to use), and had tried to make myself relatable to the Professor. I had heard about the professor from other people, I knew he was very down to earth, liked comics and geek-y things, and little did I know that I had actually met him at a convention before.
So I put on my Xavier’s Institute shirt and a nice cardigan and khakis and braced myself. Luckily once I had arrived and saw the Professor I remember that I had met him at a college comic convention in October of 2016. The class went smoothly and afterwards I did my usual routine.
“Hi, my name is Grace. I always like to let my professors know ahead of time that I have a handful of medical issues. I have Crohn’s and I have an ileostomy so sometimes I leave to take care of it, but it rarely causes issues. I also have Gastroparesis, basically my stomach doesn’t work, this is my NJ feeding tube, the pump sometimes beeps but it’s nothing to be alarmed about and I can take care of it. I also have Ehlers Danlos Syndrome, my joints dislocate a lot, sometimes I use a wheelchair but on good days I can manage with a cane. And I have Postural Orthostatic Tachycardia Syndrome, so standing long can cause me some issues with dizziness and passing out.”
“And I sometimes miss class for doctor’s appointments but I try to schedule those around class if possible. Last semester I did miss a week for kidney stones, which also happened the semester before that, but hopefully this semester will be kidney stone free! But I just like to be upfront and honest and let people know so that if something arises it isn’t a surprise.”
Luckily since my Professor had met me previously and followed me on some social media he was already a bit informed about my health and conditions. It made it much easier and far less intimidating.
Luckily Monday I only have that one class. Tuesday I only had attended painting but had missed my very first anatomy and physiology lecture.
The previous art teacher had retired and was also my previous advisor. So when I made it up to the art room, I was anxious to meet the new professor and to see if they would be covering for the advisor position as well since I was changing my major to genetics.
The best part was that our new professor was not only a hilarious woman, but she too had previous interest in genetics and science before deciding to be a teacher. She had moved from Richmond, Virginia and was in fact taking over as advisor. I was so anxious about finding out that the college didn’t have the painting supplies for the class, and also that I needed to pick up my Anatomy and Physiology lab book that I forgot to talk to her before fleeing the class.
So she instead received an e-mail but she was extremely understanding. And I had to message my Anatomy professor and explain why I missed the first class (doctor’s appointment) and she seemed to be understanding as well though a bit more formal about it, so it was hard to tell tone.
Wednesday was Anatomy Lab and History again. It would also be the first time meeting with Anatomy professor who also was the professor for the lecture hall. The class seemed to go smoothly, there was a girl in the class who I had known from a few years back. My passion for science made the class go by quickly.
I went up and talked to the professor and was giving my routine speech when I noticed that my feeding tube was leaking formula not only on me but all over the floor… which made things a little bit more awkward considering it made for a poor first impression and left a lot of things out due to my panic of trying to fix my tube.
On top of that I noticed my ostomy had started leaking in history class but luckily it wasn’t until the end of class and I was able to get home and change it.
And Thursday was my final day of classes and first day of Anatomy and Physiology lecture hall. Seeing as how I had already met with the teacher I decided to just stay in the back and try to avoid people. I have discovered that when you are visibly sick in a class full of nursing students, people love to be nosey. Sometimes I don’t mind and will answer questions with no problem, but other times people would ask questions while the teacher was lecturing and then I was annoyed.
Luckily it has been a long weekend with plenty of time to study, make up notes, and keep ahead of the classes. Hopefully the rest of the semester will go by with minimal issues, for me and for everyone else out there. Being chronically ill is hard, and being a chronically ill college student is even harder, but I can do it.
And it’s thanks to biology and my biology professor last semester that I finally discovered what I’m passionate about and what I want to do with the rest of my life: Genetics 🙂
[Image shows me in a white t shirt with a green alien and the shirt says “Don’t be sad, be rad.” and I’m wearing a mint green skirt with suspenders and have my backpack over my shoulder, glasses on, feeding tube, make up done, etc.]
Thee Crohnie Grace 