My name is Brooke and I am a woman in pain.

I’m going to start with my current diagnosed conditions and then I will loop back around to begin my story. I have also found out that the way I think and write is different, but I don’t care.

Ehler Danlos Syndrome, Sjogrens, Ankylosing Spondylitis, lupus, Fibromyalgia, Gastroparesis (I have a gastric stimulator implanted in my abdomen – I’ve had it for 16 years with two battery replacements), paralyzed digestive tract (mouth, esophagus, stomach, small and large intestines and rectum), live with a permanent ileostomy named Lilith (Lol!), Chronic Migraine, Occipital Neuralgia, Vagus nerve damage, Reactive Tachycardia, POTS, no vascular access (I have an implanted port in my chest).

Prior to September 19, 2009, I was an active mental health and substance abuse therapist. I earned my masters degree one year earlier. I was married and had a six year old son who had just started kindergarten. I had some symptoms of depression and anxiety which resulted in being put on multiple medications by doctors in what eventually turned out to be multiple misdiagnoses of my condition.

Within a six year period I was getting progressively more ill. My marriage ended, and my son and I are dependent upon my parents for the most basic of needs including a place to live as I am totally unable to work. This was crushing to say the least.

Obviously I have had more doctor appointments than most people have in a lifetime in trying to cope with and find the cause for my increasing list of symptoms. September 19, 2009 is significant in that I had an ovary rupture and nearly bled to death and would have died had my aunt not found me and rushed me to the ER.

Following that surgery my gastrointestinal system went into shutdown. I could not do the most basic of things such as eat without vomiting and was unable to eliminate waste. Various meds and yet more tests. I got down to a weight of 87 pounds.

At 30, I was given a life sentence, as in the prison of your own body and mind. A life sentence of nausea, vomiting, wrenching, burning, aching and stabbing. My bones feel like they are being ground to dust, acid eating my insides feel like the teeth of a piranha chewing through my guts. I can lose 40 pounds in less than four months because I’m slowly starving to death. I had no idea how painful it is to starve. I was anorexic most of my life prior to getting sick. It never hurt like this.

I got so sick that my son bought me a walker for my 42nd birthday. I use it to this day. I’m too sick to stand, but I don’t LOOK sick. I have had to deal with dirty looks from people. I also have a handicapped placard. Once a lady yelled across the parking lot at me, “Those spaces are for handicapped people only! Not for the lazy”.

PTSD develops over time due to being misunderstood or not believed and sometimes even from abuse by medical professionals. I completely lost my identity, career, friends, relationships, car, home, and the ten years I spent in college (my Bachelors degree and Masters degree), my brain, and one of the biggest blows was the theft of my art, ballet. I had to mourn the loss of ME.

To this day, I have had 43 surgeries. I woke up during three surgeries because the doctors never took my EDS into account. This disease makes you burn through anesthesia like crazy. It also helped me in ballet, ice skating, gymnastics, surfing, scuba diving (at age 12 I became the youngest person to earn a NAUI Jr. Open Water One Card), snow and water skiing. It makes me VERY flexible.

I could go on for hours about what I have lost and what has been done to me for days. I’m going to change direction. I want to tell you how I took ballet back. I began dance at age three. Ballet was my first love. My amazing dance teacher planted a seed in my soul during that first class. I continued to dance for 25 years before chronic illness stole it.

During lockdown in 2020, I ordered a pair of my favorite pointe shoes and just kinda tried to stand on them every once in a while. In 2022, I had my colon and rectum removed and a permanent ileostomy surgery. My entire abdomen was cut open. Four months after the surgery, I grabbed my cane and stood on pointe again. I started just playing around on them for fun. I noticed I could do a little more as long as I hold onto something.

Fast forward to today. My family built me a dance room. I can’t dance in the traditional sense. I started posting pictures of me on pointe wearing cute ostomy bag covers from a lady in Canada who started an ostomy bag cover company. I started ironing on patches, sewing little charms onto them and just making them fit ME.

I also modify my clothes. My ballet leotards have a hole cut in them so I can pull my bag through and wear my cute ostomy bag covers. I don’t tuck it in. I’m so proud of my ostomy that I had Lilith tattooed around the outside of my ostomy bag on my stomach. To top it all off, I had a pair of pointe shoes tattooed next to it.

I’m always evolving, changing, and trying to adapt. My favorite thing is wearing my pointe shoes and a cute ostomy bag cover for impromptu pictures on vacation or even my infusion appointments. Lol! Living in chronic pain can be done. Finding joy can be found. My soul is so much happier now.