Hey, I’m Casey and this is MY STORY
I was born in 1992.
In 1994, when I was 18 months old, I had open heart surgery. I had an atriceptical defect and pulmonary stenosis. With a single surgery the doctors were able to fix my heart.
However, it is hypothesized that do to the physical trauma I went through as a baby that my immune system was damaged/compromised/slowed down. Leading to…
1999 I was diagnosed with type 1 diabetes. After spending two weeks on the couch, unable to do anything from a lack of energy, eating everything I could get my hands on, (and LOSING TEN POUNDS) and wetting the bed, (something that never happened), my mom took me to the doctors. She had called them describing my symptoms earlier, but the nurse insisted it was a growth spurt. After seeing the doctor she sent me to the hospital saying I had TYPE 1 DIABETES. The nurse practitioner met us downstairs by the ER stating that I was around two hours away from entering a diabetic coma. A few insulin shot and 12 hours of intense diabetic training, we were sent home, armed with shots, insulin, and a lifetime of being the human pincushion ahead. I was 7 years old. This was the beginning of my autoimmune adventures.
Sometime between the time I was 10 and 12, I was diagnosed with hypothyroidism. I was prescribed a tiny pill and told that that would take care of it. I moved on with life.
When I was 13 years old I had shingles for the first time. Shingles is a reactivation of the chickenpox virus in the body. I had chicken pox when I was 5 or 6, hence the reactivation. Traditionally you don’t get shingles til you’re over 40. Having them so young was a foreshadowing of my future with autoimmune diseases.
I moved from upstate NY to NC when I was 16. It was only a few months after I moved that I suddenly started experiencing some weird stomach issues. I couldn’t eat without having terrible gas, and nasty stomach bloating. These are not symptoms a teenage girl would like to have when she is in a new town trying to make new friends. My new endocrinologist reminded me that my blood tests had shown positive for CELIAC DISEASE,it now seemed that the symptoms of this autoimmune disease had started to show themselves. I started eating a strict gluten free diet. Which means you ELIMINATE ALL WHEAT, OATS, WRY, BARLEY AND MALT from everything you eat. Fortunately my mom was diagnosed with celiacs two years before me, so switching diets wasn’t as hard as it is for most. Mom had done a lot of the trial and error with products, so I wasn’t eating all cardboard.
I began college in the Fall of 2010. I loved it. I was competitive and dyslexic, which surprisingly was a great combination. I dove head first into study at my local community college. I was working part time at an italian restaurant as a hostess, paying for my schooling, living at home with my awesome parents and doing well in school.
Yet, in 2013, the year I started school film school at UNCW, I started to slowly get sick. During my first semester I took 5 courses, all of which took their toll on me academically and physically. I spent more time at school than I did at work and I spent more time at work than I did awake at home. I almost quit film school after my first semester, but after passing the course and getting into the program without even applying, I decided to push through for another year. I pushed through for another year and slowly the academic classes started to get easier. However, during spring semester of 2014 it was as though my body slowly lose energy. I would be driving home from school and feel as if I could fall asleep in the seat. Eventually I began taking a regular afternoon nap.
Summer hit and I was determined to save enough money to pay for my next semester of college before the term began. I started working in the kitchen at the italian restaurant. This meant early mornings bent over boiling pots of pasta and crab dip. I figured because I wasn’t “eating” the pasta that it wouldn’t affect me. Well I was wrong. After four weeks of working 40 hours a week and trying to keep up with an insane social calendar, my mom sat me down and asked me why I was so angry all the time and why I had to have something to do every hours of everyday. I was surprised by this conversation.
It was then I realized, I was exhausted. I filled up every hour of every day with something to do because I was afraid of rest. I felt as if I stopped and rested for a minute that I wouldn’t be able to get up again. The realization of this fear manifested itself in anger. My amazing mom noticed both of these things, and helped me see them. Together, we headed back to the doctor for tests. I stopped working, I would wake up in the morning for a few hours, then after lunch I would go back to bed for a few hours and get up again in time for dinner and a few hours before going to bed for 8 hours. Between the doctors appointments, and the CHRONIC FATIGUE I began to struggle with DEPRESSION. I would lay in my bed and ask myself what was the point of life if I spent it in bed? My parents reminded me that there was so much I could do from my bed. I would start to pray for people I knew who were as sick as me or worse, and from that place of giving my heart to others and wallowing in self pity, I began to struggle less with depression and anxiety.
We discovered that my chronic fatigue was caused by new food sensitivities and a hormone imbalance. To discover these answers I went through FOUR DIFFERENT DOCTORS AND THREE MONTHS OF TESTS AND APPOINTMENTS. During this time I was able to isolate some symptoms instead of ignoring them. One of them was terrible burning pain in my core, pelvis and legs whenever I went to the bathroom. NOTHING would make this pain better. I would lie on my back on the floor with my knees bent (this was the only position where the pain wasn’t unbearable) and i’d wait until it passed, which could be up to a half hour. This pain is called Irritable Bowel Syndrome (IBS), there isn’t much of a reason for it other than your gut being inflamed due to the types of foods you are eating. In the end I ended up cutting all dairy, rice and corn from my diet. I also started cutting back on refined sugar and starch, avoiding eggs and any form of grain in most foods as well. I slowly began to get better.
I tried to return to work, but my body was still in recovery. Work only lasted three weeks before a melt down from exhaustion and feeling like a failure. My parents looked at me and told me to first focus on figuring out how to live with my health being so high maintenance. Then they said to focus on school and completing my degree. They supported me entirely for the next 6 months.
I spent those 6 months learning how to cook. With such a limited diet I knew it was going to be a challenge, I was able to master it and returned to cleaning a few houses and babysitting for work in the spring, on top of going to school part time.
In the spring of 2015 I was feeling better. I had the opportunity to work on a film doing my dream job while simultaneously going to an OBGYN to figure out how to resolve my hormone imbalance. For years I struggled with a horrid menstrual cycle. My period would last up to two weeks, and then I would still spot in between cycles. I experience bad mood swings as well. After an internal ultrasound they said I had POLYCYSTIC OVARIAN SYNDROME (PCOS). PCOS is where cysts from in your ovaries and can cause terrible pain during menstruation and ovulation, it also causes irregularity in your cycle. They also said I most likely had ENDOMETRIOSIS, which is where endometrial tissue forms outside of your uterus. Yet another thing that causes chronic pain and irregularity. The doctor started birth control trials to see if it would help regulate my two problems and also balance out my PROGESTERONE DEFICIENCY. This was a disaster. The first trial would give me four week cycles. The next two caused me to gain ten pounds and gave me chronic migraines. There I was again, summer of 2015, spending most of my time in bed, again. Finally the doctor took me off of birth control. Instead, they gave me an IUD. This completely eliminated my cycle and I was able to give me a break from the pain I had been in for ten years.
After this series of medical problems, I was an emotional wreck. A year had gone by of relentless trial and error with medications, weight gain (and struggling to lose even a pound), and chronic fatigue. I began to look for support groups and some support. I was able to find some community with food struggles through Overeaters Anonymous, other than that I was alone in my struggles with diseases, sensitivities and syndromes that are completely invisible to the naked eye. And it wasn’t over.
Fall of 2015 I was taking 4 high intensity courses trying to finish up my degree by spring of 2016. The stress of the semester along with some other commitments brought me back to filling up everyday with business. I started to notice that anytime I ate I was getting nauseated. I tried to ignore it for two weeks. Then it got so bad that the only thing I would be able to stomach was bananas and almond butter. Back to the doctor we went. More test, more trial and error discussion. I started to lose a pound a day due to not eating. They believed I had GASTROPARESIS, a common diagnosis for diabetics. Gastroparesis is where the muscles and nerves in you digestive system stop processing solid food enough for you to eat without discomfort or constipation. So I spent three months eating soup, yogurt, applesauce and no solids at all unless I chewed for ages.
I became extremely frustrated when the medical tests from this round of doctors trips showed that THERE WAS NOTHING WRONG. Terrified, sicker than I could remember and desperate to have some sort of normality again I examined my current health issues in depth.
TYPE ONE DIABETES ended up being the culprit of all my problems. Remember? Type One Diabetes was the disease I got when I was 7? Between school and work and all my food allergies, as well as all the different pills and birth controls I had filtered through the last two year I had completely ignored my diabetes. I still took insulin and tested my blood sugar two or three times a day, but all the doctors started pointing at the MONSTER of a disease Type One is and said, “Casey you need to start controlling your diabetes.”
Apparently my bloodsugars had been staying in the high 200 and the 300’s on a regular basis, this caused nerve damage in my digestive system which lead to the precursors of gastroparesis. We caught the problem before any permanent damage happened.
(As a reference point a normal healthy person’s blood sugar ranges between 80 and 100. Doctors would like to keep a type one diabetics levels between 100 and 150. My average blood sugar was 280….. See the problem?)
But hold on a second. HOW DO YOU CONTROL TYPE ONE DIABETES?? When your body doesn’t produce any insulin and you've gotten used to ridiculously high blood sugars and sure I have an insulin pump but that’s supposed to make it easier? NOW I have to magically monitor my blood sugars 24/7, make sure I don’t eat anything with gluten, rice, dairy, corn, eggs, refined sugar or starch and make sure I take all my pills, oh and don’t forget to exercise!! On top of that go to college and make some money so you can have a dating and social life.
The doctor gave me a DEXCOM sensor to help with monitoring my blood sugars. Everyone who knew me was so excited about this new piece of tech. I was not. Now I not only had a MINIMED INSULIN PUMP which had a site on my skin 24/7, but now I was going to have another site, this one bigger and much more noticeable. Now, I had the challenge of coordinating two sites on my stomach and back, as well as have two separate devices beeping my hourly. The pressure was on, I needed to get my bloodsugars under control while feeling like the borg from Star Trek and every time I tried to lay down either my pump site of my sensor was stabbing me. Finding a comfortable way to sleep at night was a challenge and waking up to an alarm screaming at me saying I had a low blood sugar left me in 2 am tears more than once.
To put it simply, I wanted to give up.
I remember crying at the kitchen table to my mom a week after getting the DEXCOM. It had been a really rough day. I spent all morning trying to get my blood sugar out of the 200’s. I drank liters of water, gave myself what felt like boatloads of insulin and watched my sensor as it kept alarming HIGH GLUCOSE ALERT. Around 3pm that evening it started to come down, and ended up dropping into the 60’s. Now my DEXCOM was screaming LOW GLUCOSE ALERT. I ate something to correct for my low, which resulted in my DEXCOM beeping yet again RISE RATE ALERT. Let’s just say that when it began to rise again I fell into a puddle of tear. Saying over and over again to my very patient and loving mom...
“I don’t know how to do this”
The very next night I had another meltdown to my best friend, a weeping sobbing mess on the floor of my bedroom. This time I would say over and over again….
“How am I supposed to do this the rest of my life when i’m so ready for it to all be over?”
This certainly doesn’t look like a very hopeful situation does it? I promise, it gets better.
I slowly began to eat solid food again. I completely cut refined sugar and all starch from my diet. I joined a crossfit gym that not only gave me a new way to exercise regularly, but it also was a place where I could physically get rid of some of the emotional angst I experiences daily. I took my time with my last college semester and graduated with honors.
Life returned to a steady “normal”. I was getting my blood sugar under control, working a steady full time job as a dog sitter/walker and started a serious relationship with a great man. Life was looking up at last, until August of 2016. I once again began to experience terrible nausea every time I ate. This time I would have terrible stomach stabbing pain and cramping after meals, even smoothies would give me these pains. I would be curled up in bed or on the floor with chronic pain that I would have to lay there for up to an hour until it went away enough for me to go about life until the next meal. One night the pain was so bad that we went to the ER, thinking it was having a gallbladder attack. The ER doctor said that all the tests showed that I was completely normal and sent me home saying I should contact my Gastroenterologist. So went back to the doctors and I was diagnosed with Gastritis, Chronic IBS and Hip Arthritis.
I spend a lot of time crying over my diagnosis. I was certain I had Crohn's or Gastroparesis. I wanted to some scary disease that would justify the pain I was in. Once again I was having regular meltdowns and wondering if my life would ever get easier. I wondered if I would ever not be in pain.
Any days I felt well and happy were always cast in shadow, a shadow that said, “enjoy it while you can, you’ll be feelin rotten again soon.”
I was put on medication to help reduce the acid in my stomach and regular pain meds to dull the nerve pain I was experiencing with the IBS. I started eating again without pain. Cut back on my working hours by half to reduce stress and began working out regularly. Things were getting better physically, but I was still an emotional wreck.
Not long after my last disappointing diagnosis, three months later in November to be exact, I found out I had shingles again. This took place while I was spending a week in NYC with my boyfriend and his family. I couldn’t see the outbreak of my shingles rash in the middle of my back, and my boyfriend and I weren’t on “would you look at the strange pimples on my back and tell me if they look normal or like something is wrong with them?” stage…. So I had NO CLUE that what I thought was pimples on my back were shingles. SO I walked around New York City for days with my right side it horrible, almost unbearable pain. We started to think it was gall bladder attacks. I spend a whole day in the tiny apartment sleeping and tossing and turning in pain trying to suppress it because the last thing I wanted was to go to the ER in NYC. Upon returning home I had my mom look and she immediately recognized it as Shingles. But the hard part was I had gone too long without seeing a doctor about it so I couldn’t get any medication for it. I spent the next two months taking tons of ibuprofen and hot baths to try to stop the pain. Eventually I healed, the rash disappeared and the pain was gone. But MAN IT WAS ROUGH, and yet another thing on the long list of medical issues I have suffered from.
After a Casey crying session with my incredible supporting parents one fall evening after coming to terms with my multiple diagnosis and an existence with autoimmune issues I really started to think about my life and the thoughts I was choosing to think. And I decided to change. I began to write down my medical history and take a good look at it in the face. You’re currently reading what I started writing then. It was hard, I didn’t realize how much had happened in the span of three years. Looking at my life and the struggles I have faced I saw something absolutely amazing.
I’m still alive.
My body was made perfect. It’s not perfect now, but it is also not my responsibility to make it flawless again.
IT IS NOT YOUR RESPONSIBILITY TO BE PERFECT.
NOW WHAT?
After I came to this realization I did not have to be perfect I began to figure out how to do life with some sense of normality.
I DID NOT HAVE TO BE IMMACULATE, BUT I HAD TO DO MY BEST.
The most important thing in my day to day life was doing the best I had with what I was given and what the day threw at me and let go of everything that fell apart.
Life didn’t get easier.
I let go of trying to do everything right
BUT EVERYDAY I DO THE BEST I CAN
Slowly, steadily, I began to feel better.
I accept and forget the bad days
I celebrate the good days
I look into the future and accept the challenges it will bring and look forward to the joy it holds.
Does my story sound familiar? Do you struggle with Diabetes? IBS? Endometriosis? PCOS? Hypothyroidism? Weight gain? Migraines? Celiacs disease? Food sensitivities/allergies? Depression and Anxiety about your health? Does tomorrow feel impossible and the future feel hopeless?
I KNOW EXACTLY HOW YOU FEEL.
When I was struggling for three years straight during college I kept looking online for help. Someone who had been where I had been and had made it through ok. I couldn’t find anyone. With the help of my family I was able to make it through my struggles, but not everyone is as blessed with an incredible family as I was.
I hope this site and my story have brought you some encouragement. I invite you to do everyday in disease with me. I’m still figuring it out, but there is no voice for invisible diseases. Together let’s create a community where we can be there for eachother. Let’s laugh about our blood sugar lows and cry over IBS together. Let’s share dairy free/gluten free recipes, let’s hold each other’s hands when we are in the hospital battling yet another autoimmune issue.
I will share what I have learned and what I am learning with you. Together, let’s do our best everyday and not be defined by our health problems. There is so much joy to be had in our beautiful bodies, so let’s enjoy them for as long as we can.
