How Jen's Chronic Illness Changed Her Life
By Jen | @justjenbrodeur | August 9, 2018
How Jen's Chronic Illness Changed Her Life
Hey everyone! My name is Jen and I’m 35 years old. I never thought I would actually admit my real age, but when I almost died at 33; I embrace every day that I wake up in the morning. I’m a mom to two beautiful teenage daughters. I’m a hospice RN when I am healthy enough to work.
I have a myriad of chronic illnesses - today I want to tell you about the one condition that makes the most impact on my every-day life. In September 2016 I had been extremely sick. Between mid-August and mid-September, I was in the Emergency Room several times with breathing problems. Diagnoses included pneumonia, whooping cough, and an inflamed trachea.
On September 17, 2016 my life changed forever. I was having severe trouble breathing. There were elephants in my bedroom. I was delusional. My mother insisted I go get checked out and thank goodness I listened. I called 911 and while I was waiting for the ambulance I fell and I couldn’t get up. There were people in my house (hallucinations). I couldn’t breathe & my abdominal pain was excruciating. I was so out of it that I wasn’t even scared. I just wanted to sleep.
Once I arrived at the hospital I was rushed into emergency Trauma Surgery. I had over 2 liters of fluid in my abdomen (which was interfering with my breathing). The trauma surgeon believed I had a perforated bowel. She told me several times I was going to wake up with a colostomy. I didn’t care. I wanted the pain to stop. I was in surgery for hours. The trauma surgeon was wrong - I had an ulcer in my stomach that literally exploded and was the size of a quarter just pouring my stomach contents into my abdominal cavity. I was extremely close to death. I managed to avoid the colostomy as my stomach was the problem. My stomach was patched with mesh over the ulcer.
After my life-saving surgery, I was in the ICU for two weeks with peritonitis, organ failure, and ICU delirium. It was hell on earth. I had to learn how to walk again as my abdomen was cut up the center from 5” below my navel to my sternum. It’s a big scar & it hurt like hell. After a brief stay on the medical floor I finally went home after about 3 weeks in the hospital.
Two weeks later I was re-admitted to the hospital with pleural effusions and sepsis. I was in for two weeks on Vancomycin and Zosyn and eventually went home on IV antibiotics through a PICC line for six weeks. I still felt horrific pain to my stomach and was dealing with managing my illness and trying to be a mother.
I’ll spare all of the details of every hospitalization, but I was also admitted to the hospital for:
- 15 blood clots in my lung (deadly).
- severe abdominal pain with a question of stomach cancer.
- a corrective surgery in October 2017 to repair 20+ incisional hernias from my lifesaving surgery.
- multiple endoscopies (when a camera is inserted through the mouth and into the stomach to visualize the ulcer).
- hospitalization this month for vomiting blood and abdominal pain.
- many ER trips for abdominal pain.
How has having a chronic illness changed my life?
After my surgery, I had to stay with my parents - my children were 11 and 13 years old and it was extremely gracious of my parents to let us stay with them for about 6 weeks until I could walk again. I had to re-learn how to walk at the age of 33 with a large fresh incision and weak muscles in my legs. I used a walker for a very long time and needed a wheelchair for doctor’s appointments and avoided activities that required a lot of walking. That “healthy-looking” woman in the grocery store using the mechanical cart? That was me - it took many months before I could walk through the grocery store to feed my kids. I have a massive scar that causes chronic pain every time I change positions. Unfortunately, the only medication I can take for pain now is Tylenol.
I have a list of dietary restrictions that are permanent. No citrus, no spicy foods, low acid (I miss you, marinara sauce), no soda or carbonated beverages, coffee twice a week, and no alcohol. It’s hard for me when I am eating with family or friends because people forget about my restrictions. Since my surgery, I have this new reflex- if I eat something that I shouldn’t, I physically cannot swallow it- I have to excuse myself and spit it out. I follow these guidelines as if my life depends on it.
My medication regime is pretty extensive. In the beginning, I needed a lot of help with managing my meds but I can handle it myself now. I’m on a first name basis with everyone at the pharmacy. I take more meds than my parents and my 82 year old grandmother combined.
I battle anxiety and depression every day.
Every day I fight to make good decisions for me and my children. They’re the reason I didn’t give up when I was close to death. They’re the reason I try my best every day to be the best mom possible. Sometimes it’s hard to get out of bed; both physically and emotionally. I keep fighting- these girls deserve the best and if it weren’t for them I probably wouldn’t be writing this now. I do see a therapist every week and a psychiatrist regularly.
I have learned so much about myself since this happened. I have massively cut down on social media and hanging out with friends to really be present and be there for my children and doing my best to enjoy every day I have on this earth. Being present in the moment is key. I am almost 18 months out from my lifesaving surgery. My mission is to educate people as to WHY the doctors believe this happened in the first place. I was on the maximum prescription dose of Motrin (ibuprofen, Advil) for years after a car accident. I always took my medication with food or on a full stomach. Any non-steroidal anti-inflammatory drug can cause stomach upset and in cases like mine, ulcers.
I’m happy to report that my ulcer has finally healed a year and a half later. I struggle daily with body image issues from all of the scars on my stomach. I’m excited for the future - when you have a near death experience you never take another day for granted. Waking up in pain every morning is still waking up! I can’t wait to see what the future holds for me and my kids.
I would like to share a quote from one of my favorite poets,
r.h. Sin: “Pain shapes a woman into a a WARRIOR”.
Jen is a proud RN, who graduated in the top of her class with honors. After being a mother, nursing is her true calling. She loves working with patients and their families at the end of life. In addition to this diagnosis, Jen also has migraine headaches, inappropriate sinus tachycardia, POTS, IBS, sleep apnea, and chronic Lyme disease. Currently out on medical leave; she plans to return to work as soon as she is able. Jen will forever be grateful to Dr. Kim- the trauma surgeon at UMass University Hospital who saved her life.
CLC Twitter Admin