My story is not a typical one. However, elements of my story, details about my struggles, are universal.
Four years ago, when I started to research my symptoms to look for answers doctors weren’t giving me, I found communities of tens of thousands of people who were seeking answers, just like I was. Sometimes those answers would be for what was happening to their bodies, others how to cope with it all, diagnosis or not. But we were all desperate for support that would give us the information and strength to move forward.
When Things Were Good
I wasn’t always sick; I just wasn’t healthy. A past eating disorder, two kids, and depression held at bay by binging had led my weight to balloon to a shocking number. Diets never lasted long, gym memberships went unused before they were canceled, and I avoided mirrors and scales.
I don’t know why a switch flicked in my brain one day. All I know is that I joined the now-defunct Sparkpeople, followed their free program, and within two years, I had lost two hundred pounds. It was a combination of diet and exercise, plus directly addressing my feelings about food, my body, and the difficulties in life that led me to vastly overeat.
Things were going great for me, and I felt like I could take on anything. Then on Mother’s Day, while my kids were at their grandparents for the night, I felt a horrible pain in my back and side. I withstood it for a few hours before ending up in the emergency room, where I would be diagnosed with my first real medical problem: a kidney stone.
While it wasn’t 100% clear what had caused my kidney stone, the type was consistent with a build-up of sodium that may have been related to my significant and rapid weight loss. That was my urologist’s theory and it was a bit of cruel irony. How could such a healthy change lead to something bad?
For six weeks, I paced, drank water and diet cola, used a urological medication, and downed copious amounts of pain killers to try and pass the little bugger. When I finally did, they took me in for lithotripsy to smash the ten other stones that had been lingering, unknown, in my kidneys. A collection of tiny time bombs that were a signal that things were not going as well as I had thought.
Eventually, it was all over. I thought things would only get better from there as I continued my weight loss and fitness journey. I tried to slow down the descending numbers on the scale to avoid the same pitfall. I felt good for a couple of years.
Then came the pain again.
I was rushed to the emergency room; there was no stone. The doctor tested me for infection and didn’t find that either. What he did discover was an inflamed pancreas. As the young ER-resident showed me the imaging results, he explained it was a mild case of acute pancreatitis.
Since I didn’t drink and didn’t have any traditional risk factors, they considered it a fluke. I was sent home with more painkillers, a strict no-food order (not that I could have eaten), and I spent a few days in bed, drinking clear fluids when I could.
It would be one of six pancreatitis attacks I would have that year. The final one would land me in the hospital for two weeks with the most painful experience of my life. It would also lead to an eventual diagnosis of Pancreatic Diabetes, or Diabetes by pancreatic injury. My pancreas had died, causing a form of late-developing Type 1.
I was placed on a feeding tube during the recovery period, which I would stay on for three months. I often had nausea during that time, which was to be expected. It was not until the tube was gone and nausea didn’t go away that I realized something more was going on.
Ain’t Seen Nothing Yet
It would be two years before I received any real answers. Regular vomiting, stomach pain, a feeling of fullness…those were only some of the issues I had developed somewhere down the line. I spoke to doctors over and over again. I complained. I was ignored.
Frustrated with the lack of progress, I eventually left my network of increasing doctors and went to someone new in a different city. They took one look at my history and sent me to a gastroenterologist and a rheumatologist to finally figure out what was happening. By the end of that month, I had two new and definitive diagnoses.
‘It’ Had a Name
The first of the villains that had taken over my body was Behcet’s Syndrome or “Silk Road Disease” It caused full-body arthritis symptoms frequent painful mouth sores and was likely connected to kidney stones, recurring infections, worsening immunity, and pancreatitis that I had been experiencing.
Second, I had developed an uncommon form of gastroparesis. That meant my digestive system had slowed to a crawl, so food remained in my stomach longer. It was affecting my appetite and causing nausea that had become such a challenging part of my life.
Due to my diabetes, this presented a problem. Since my food wasn’t digesting, my sugars were harder to control. It would spike, and getting it down was a constant struggle. This led to an increase of infections, especially Urinary Tract Infections (UTI’s). Because of my immune dysfunction, getting rid of these infections could take several rounds of antibiotics, and it further spiked my sugars. It was a vicious cycle.
Having The Answers
All of this was overwhelming, as you can probably imagine. But I had my answers, I knew what was happening to me, I wasn’t crazy. Armed with the names of my demons, I was ready to tackle it all head-on. I was going to get my health in check, learn to live my life again. I was going to be strong.
Sadly, it was not that easy. What happened next would be harder than the initial discovery. The journey has been a long one, and it is still ongoing. At least I am on the right trail.
Over the past year in particular, amidst many changes in my life, I have found some hope. It is an ongoing process, one that brings a daily battle. Sitting here writing this, in the middle of what is a fairly severe Behcet’s flare, I want to talk about the more positive side of my life. I want to discuss how I am treating these diseases, and where I am now.
For many years I worked as a freelance writer, as I raised my small children. Once they got a bit older I went back to college, got my degree, and started working out of the home. Sadly, my conditions made it harder and harder to maintain a job with a regular schedule, and in the summer of last year, I quit what will almost certainly be the last job I hold.
Instead, I have gone back to writing. I can make my own schedule, take on work as I need, and take breaks when I have no choice but to do so. It isn’t as consistent and it certainly isn’t where I thought I would be. But it pays the bills and gives me the freedom I need to focus on my health and being at my best.
I had some rough months. My fatigue was unbelievable and sometimes I would sleep up to sixteen hours a day. My nausea and vomiting were a daily battle, leaving me even more exhausted and miserable. The arthritis symptoms meant I was always in pain, and I was put on a constant regime of opiates that left me sleepy, fog-brained, and was murder on my already delicate stomach.
Rather than go over everything that happened to pull me out of that funk, I will just say what has changed. The first thing I did was go off the pain meds. Some people absolutely need them to function and they are wonderful for that. But my personal reaction to them, even when cutting them down, was too much for me to handle.
The difference was extreme enough that I started to wonder about my other medications. At the peak of my med use, I had a list 17 pills long, around 6 of those being supplements like fish oil and a multivitamin with additional iron. I did something I would not recommend, as the safety of it was questionable: I went off of almost everything.
I went from a laundry list of pills every day to just taking insulin, a medication for my Behcet’s symptoms, and fish oil. The effect was almost immediate. I had more energy, my nausea reduced significantly, my skin even got better. I was still in pain, and the stomach issues were far from gone, but it all felt much more manageable. There was no doubt I was suffering from polypharmacy trouble (the use of multiple drugs for one condition, in this case, drugs that were having adverse side effects).
I have since added a couple back in, but I am doing much better. I am starting to exercise again, my sleep schedule is mostly normalized, and I am adding more activities and responsibilities into my day. As someone who once had boundless energy, the change is difficult but I feel like I am getting back to myself.
The Critical Role Of Self Care
One thing I have had to learn is that self-care is more than just a buzz phrase. In the past, I was one of those goal-setting go-getters. I would set tasks for myself and get them done, no matter how long it took me. It was one of my favorite things about myself, and my days were always full to the brim.
Now, I just can’t do what I used to. The most intense grieving I have done has been for the loss of that side of myself. It took me getting part of that person back to realize she wasn’t gone, just a bit more limited in what she was able to do. I have to rely on others and I have to allow myself to engage in self-care.
Eventually, I learned to recognize when my symptoms were indicating a flare was coming. I came to trust my body when it needed more sleep and stopped fighting it. I take the time to relax and just enjoy downtime, even when I have more of it than I want. If I am doing something and find myself having to push too hard to finish, I put it aside.
Lower Expectations Aren’t Failure
In the end, this was the greatest lesson I ever had to learn. I rebelled so hard against accepting my new disability because I felt like I was giving up my goals, my dreams, my sense of self. If I expected less I was failing. I was a failure.
Thankfully, I have broken through that barrier. I am not a failure. I am strong. I am capable. I am a wonderful mother, a caring friend, a loving wife. I am an embarrassingly obsessed dog mom and mediocre but enthusiastic cook. I am stubborn and vicious about what matters to me, a fighter to the end. I am good things and bad things and neutral things.
And yes, I am also sick. I am disabled. I am a person with Behcet’s, pancreatic diabetes, gastroparesis, recurrent pancreatitis. I have a benign tumor I need to have removed this year. I have mental health problems exacerbated by my physical issues.
I am all of those things, and I am growing. I have a future and it doesn’t always look bright. But I am going to bring my shades because even when it looks dark, I know the sun is just behind the clouds. I’ll need them for the rest of my journey.