I thought that for this post I would tell everyone how I got my chronic illness. It was a complicated series of events and is not the happiest of posts. My hope is that it’ll help someone else to avoid a similar situation but also to realize that sometimes there’s nothing you can do; don’t beat yourself up over things you did with the information you had at the time.
In 2013 I left my original university for Kent State University. I left because I was extremely ill mentally, which had caused me to be ill physically. Depression had its claws in me so badly that I had failed to eat properly or do anything other than lay in bed. Needless to say, I had a rough time during the transition to health.
Finally, in the 2014/2015 school year, I was feeling healthy, happy, and like my future was finally unfolding. Spring of 2015, I was accepted into and then as the upcoming secretary of The National Society for Leadership and Success (Sigma Alpha Pi) KSU Chapter. I was going to be attending main campus instead of commuting to the regional campus by my parent’s home. I would finally be taking full time credit hours after a few semesters of time to heal. I was excited and looking at life with a “this is my time” kind of attitude.
So, on February 16th, 2015, as I walked into a restaurant for lunch the first thought I had before walking in to eat was: “Things are finally looking up for me. I can finally live the life I’ve been wanting.”
I was so wrong.
About an hour after eating I became violently ill. I’m talking (sorry for the detail) both ends violently ill. This was the first time since I was two or three, that I had ever vomited. It scared me. I didn’t even know what stomach nausea was until that day. My mom is a nurse and we’d always joked that if I ever threw up, it’d be something really serious. You can imagine my anxiety when I remembered that with my head over a trashcan.
I was shaking and not handling it well. But, unlike my classmates who later reported the same symptoms, mine didn’t last several days. I got sick once. In one moment I was done with what we think was a virus. I went to sleep and was better, with the exception of a stomach ache, and ready to get back to class.
My stomach hurt until that weekend when my parents left for a resort vacation. I have heard that sense of dread is a symptom of illness sometimes, so I think it’s relevant to say I was terrified my parents were going to die on that trip. They’d traveled before, I was used to them doing so. I’d never worried like this. But, I drove them crazy asking what would happen if they did, where would I go, could they please be careful and call me every day….it went on and on.
During the week they were gone I was able to eat, and felt good. I ate all my favorite foods (I’ll admit vegetables were not usually on the menu) and thought my illness was over.
That week, if not for the weeks that followed, would have been one of the worst weeks of my life. A friend broke the news to me in that week, now that they felt they could, that someone I trusted with my life, an incredibly close friend who I’d grown up with but gotten to know well in the last two years, had done something to me that was illegal, hurtful, and betrayed my trust in ways that I never thought they would.
I could have taken legal action, and would have, but by the time I had decided I might want to I was already too sick for it. I told this person’s brother, who assured me he would keep them away from me and asked me to please not pursue it. I agreed, on the condition that the ex-friend not do anything else like what he had done. After a lot of pain and hatred, I did end up moving on from the stress of the whole thing. I did not forget, of course.
I’m convinced the stress from that whole event contributed to everything that happened next. A virus, plus bad eating habits, plus a huge and heartbreaking stressor, were enough to put my body in a place of extreme weakness. I wonder a lot if things would be different if I hadn’t been so hurt by it all.
The next week, I went with my father to his work to do some homework. They have dogs there, which were great for a stressed out college student. I was getting stomach pains similar to what I’d had with the virus and it made me nervous. My dad, and his friend/co-worker, asked me to come out to eat. During the meal I started feeling more and more nauseous.
I left and drove the 15-20 min home while my anxiety spiked and my nausea was intense but was different from the nausea I’d had when I was sick. When I got home, my mom helped me as I lay on the bathroom floor and in my bed, panicking about why all this was happening. I was nauseous but not getting sick, I was shaking, and it was full body torture I wouldn’t have wished on my worst enemy.
That torture continued for over a year until I found CBD oil (get to that later). For four months I couldn’t eat more than goldfish crackers without feeling sick, and was bed ridden except to make trips to the doctors. My doc did so many tests, she was certain there was nothing wrong with me, that it was anxiety. One day in her office, while I was waiting for an appointment, I started feeling bad enough that I was afraid I’d faint. I went to the desk, shaking and probably looking pretty frail at that point, and asked for water. The receptionist promptly called a nurse.
They sat me in a wheelchair, took my vitals, and told me my blood pressure was way too high. As concerned (and seemingly anxious about whether I was contagious) onlookers watched, I was rolled away to lay down in her office. Nurses checked on me but they left me in the room alone to suffer, with no medicine or fluids, for over an hour.
My doc finally came in, and continued to brush off how I felt, even given my high BP. I told her I would rather die than live like this another moment. She gave me a shot of Zofran, called my dad, and sent us to the nearby ER.
When we got there, we found out she forgot to call the ER ahead of us, so the intake nurse wasn’t the kindest. She was rude and told me I didn’t need to be there, while I fought back tears of desperation, and my dad fought back his fury at her lack of empathy.
I was finally seen, tests were run, and I was sent home with heavy antibiotics (for what they said was a bladder infection) and a script for Zofran for my nausea.
I ended up taking two rounds of antibiotics before docs were satisfied with my bacteria count, and I took Zofran as needed for a while. It helped, but also gave me different kinds of nausea and malaise. We assumed that was a side effect.
I made another trip to the ER after telling my parents that my nausea and pain were unbearable. They couldn’t figure out what was wrong either. They sent me home with a GI cocktail which definitely made me feel better for the first time in months. I was so relieved I asked if I could get a prescription. Of course I couldn’t. That’d be too easy.
I returned to my doctor. My mother is a cardiology nurse, and worked in the Cleveland Clinic Foundation’s Main Campus cath. lab for 11 years. She knows how to listen to heart beats. Growing up, she’d always hurt an odd, but regular rhythm, to my heart beat every time I was sick. She told my doctor about this and said she hears it more and more often now. She asked if we should get a referral to cardiology, since my doctor wasn’t getting any answers (I underwent 51 tests that year). My doctor just sent me to a social worker to “rule out” psychosomatic symptoms, and continued me on Zofran.
The social worker ruled out psychosomatic symptoms, and for those of you who are familiar with it, Zofran is black labeled for heart problems. In the cardiology department it is avoided at all costs, and should never be given to someone with a heart problem or irregularity. My doc still refused to send me to cardiology. So my mother and I did it ourselves.
I’m very glad I did because once school started, after other tests, I underwent a cardiac catheterization and was diagnosed with Inappropriate Sinus Tachycardia. THANK YOU CCF CARDIOLOGY FOR GIVING ME VINDICATION. After being told over and over that my problem was all anxiety, I had a physical diagnosis.
Now, I was switched to a doctor that specialized in these things and he disagreed with the exact diagnosis. He told me I didn’t really fit in anywhere. So currently my diagnosis is “tachycardia” but that doesn’t quite fit either. I’m in the medical no-man’s-land and there’s no treatment. I did get off that horrible Zofran though.
I quickly left my doctor after realizing the possibility that she caused my condition in the first place by ignoring my mother and I and giving me Zofran anyway (my mother had warned her, long before it was administered, about my heart beats). She hadn’t treated me like a knowledgeable individual who knew my own body. I was just a dumb patient who couldn’t possibly know the difference between anxiety and a physical illness. This infuriates me to this day, and I urge everyone to get second opinions if they don’t feel quite right about something their doctor is doing. Also realize they do have more training than you, so if multiple docs from more than one specialty tell you to do something, you may have to just accept it.
I still had stomach problems, even after I worked hard to recuperate and be able to walk longer distances. I was later diagnosed with gastroparesis, and got that managed through diet as well.
In 2016, I met my current roommate and friend in the dorms. He told me about a sublingual substance I could try called CBD oil. It worked! I could eat! I didn’t feel nauseous after eating or during the day. I could walk longer distances and didn’t struggle with my heart problem as much. Because of him, I have a life. CBD oil is amazing and I’m so overjoyed it’s legal in my state. I don’t know what I would do without it.
That is my illness story. I’m not sure how I managed it, but I survived a time that I’d consider sheer torture. I was malnourished, and mentally drained. I was tested over and over and put through every crappy moment of doctors doubting my own certainty about my body. I was lucky. A lot of people have it worse. But, we all need to stick together no matter how severe our illnesses. The medical community here is full of caring doctors and nurses, but the system is crap. It sets everyone up for failure. For large bills and no answers. For fear and disappointment because you need the “right symptoms” to see a new doctor without it costing you the full amount without insurance. We are all just trying to feel better, to survive, to function, to not struggle so much that we consider suicide.
If you’re someone struggling with an illness, whether it’s depression, another mental illness, a physical illness you have a diagnosis for, or one you don’t, and you’re seriously thinking of suicide, please seek help. Sometimes science just doesn’t have the answers yet, but there are people out there trying to help. People who haven’t even met you, but still care about you. You’re just as important as anyone else, and there may be a treatment or a cure coming. I was so certain that in any moment I could end my life and that torture, but I’m glad I didn’t. I wouldn’t have met my best friend, or made so many wonderful memories. I would have hurt my family and friends immensely, and I don’t ever want to cause them pain.
Sometimes we need help, to stay hanging on. If you need it, go get it. You do not have to deal with things alone.
Lock, Stock, and Spoonies 