“‘You don’t look sick…’ ‘You’re too young to be this sick…’ ‘It’s all in your head…’
Nobody wakes up one morning and decides, ‘Hey, I think I will be miserable and chronically ill for the rest of my life!’ We don’t get to choose. It’s PREDETERMINED, in some ways or for some of us. We are and always will be—Chronically Awesome!
Life had different plans for me, all right. From birth, I was set up for a complicated life. I was born with drugs in my system and feel the effects of it daily. As a kid, I was prone to getting sick. My emotions are connected to my health which made everything more sensitive. Stomach and sinus problems, headaches, and balance issues… UGH! My teenage years were more of the same, just with new complications and changes. Depression, anxiety, PTSD, endometriosis, interstitial cystitis, knee surgery, an appendectomy, miscarriage, and tubal pregnancy. After my last daughter was born at 21, I had a hysterectomy because I could not stop bleeding. I was devastated but knew I had no other choice.
Adulthood is where things get tricky. In 2018, I became fully aware I had more going on medically than we knew about. I finally had my dream job as a hospice CNA, was happily married, had four beautiful children…and then my large intestine quit on me out of the blue.
November 23, 2018, started off like most days. I was up early for work, had a great shift, and had planned to go to the salon with my mother-in-law. Little did I know, my body was preparing for full-out war and I was the enemy. While at the salon, my stomach started in pain and was becoming distended. I fought through the pain until we got home, and I was no longer able to hide it. Tears streaming down my face, I gave in to the pain and went to urgent care. It would be the first of countless times. I passed 30 or more visits in 2 years. They performed a CT scan, bloodwork, and asked a series of questions, which all determined I was ‘constipated.’ Laxatives were advised and I was sent home, feeling down and yucky.
Frustration mounted as I felt worse and the medications were not helping. At the emergency room, the same process was repeated, but the medications were stronger, and everyone was lost as to why nothing was helping. Day after day, week after week—we were at doctor appointments, urgent care, emergency rooms, and trying medication after medication. Still no relief. I got a gastroenterologist about 3 weeks into this, and by then was on short-term medical leave from work. Appointments were the only time I left the house, the bathroom was the only time I left the couch. My world was slowly caving in on me, and I was scared. But I was not alone, never alone. I had my incredible family by my side and needed them now more than ever. My husband, my children, my father-in-law, and mother-in-law kept me going, their love pushed me through. They are why I fight and continue day after day with as good of an attitude as I can muster.
The G.I. specialist ordered test after test, trying to figure out why I was so sick and unable to get any relief. Those tests were awful. Invasive and exhausting. My diet was a mess and eating always made me feel worse. I got no relief from sleep, and even that had become tricky. I was constantly bloated, to the point people were asking, ‘How far along are you?’ or ‘When are you due?’ If only they knew I was slowly dying on the inside and never able to have another child. By now, I had been to the ER/urgent care at least ten times. I had so many enemas I was on a first-name basis and talking trash to the nurses. ‘Butt Stuff’ was a frequent thing and no longer humiliating. SO many doctors and nurses saw or had to touch my butt, it was a running joke. After months of misery, doctors, and testing, we had a culprit and a plan to see a surgeon.
Months of medications, laxatives, side effects, and a definite change in everyone’s mood. We were scared, confused, and lost. I had been so close to death, we had plans made. The children would have what they wanted of mine (clothing, jewelry, pictures, and such). My husband would move on and have a happy life—maybe even remarry. I did not want to be on life support, but I wanted to be given a fighting chance. My body may be weak, but I am FIERCE! I have made peace with the possibilities, but I am not ready. I am not done living! I want to see my children grow, see them graduate, get married, and have their own children. My body did not really agree. I was getting worse, losing weight, and strength… fighting to keep a good attitude and outlook. It is a dark place being chronically ill.
‘Colonic inertia’—my hell, my diagnosis. ‘The inability of the colon to modify stool to an acceptable consistency and move the stool from the cecum to the rectosigmoid area at least once every 3 days.’ In other words, my large intestine was now paralyzed, and I was unable to have bowel movements. I was impacted. My insides were swollen and irritated, food attacked me, and I was beyond fatigued. There were so many days I begged for death, for a release.
In March, we finally got into a colorectal surgeon in a different city. Someone who FINALLY knew what colonic inertia is and how to treat me. I went in begging for surgery, even if it meant having a colostomy. My dad came from Florida to Colorado to help and give some support. We needed answers and we needed each other. With my father on one side and my husband on the other, tears of joy streamed down my face. ‘I’m getting fixed! She said I’m a good candidate and won’t need a colostomy bag!’ The surgery was scheduled for April 5, 2019.
April arrived, and after being told in late February I needed emergency surgery, the day was FINALLY here! I was prepared and so ready for this next step. My dad arrived and we a got hotel close to the hospital my operation would be in. We spent the last night there before surgery, so there was no rush for our 5:30 a.m. check-in time. I could barely sleep, I had so many emotions. Before I knew it, it was time to go—surgery day! Prayers were said, love was given, and promises were made as I was rolled away. The medications were slowly calming my nerves as we went down the long, cold hallway toward the operating room. Waking up, the first thing I remembered is needing to know where my husband and father were, and if I could have cranberry juice. I always want cranberry after some sort of procedure. Next, I noticed the pain was COMPLETELY different than what I had grown so used to… then back to sleep.
Time to move around and get clean! Oh my, the shower was incredible! The water ran down my body and over my new incisions, and it stung. My husband helped me get dressed and then it was time to go home and start healing… or that was the plan. I was released after being at the hospital for a total of 4 days. The drive from the hospital to home was exactly an hour-long drive, but our stops made it longer. I was sure people were concerned when my giant, teddy bear of a husband practically carried me into a bar to use their restroom. The looks we got as he went into the bathroom with me, as I was unable to completely do it myself, but this is not the first or last time we got looks like this.
I was on day 3 of being home, day 7 post-op, and something just was not right. I asked for some soup, trying to get some comfort—apparently potato cheddar was the wrong choice. No sooner than I take a couple of bites, I was crying from the pain. We try medicine, switching positions… no change. Once again, we were rushing to the closest emergency room, and I was struggling to fight for my life. We got to the hospital in record time, and per usual it turned into a waiting game. We tried to explain I needed immediate help, but they pushed us aside. It was not until I was throwing up bile they even thought to offer a bed instead of a wheelchair. Remember, I was only 7 days post-op from a MAJOR abdominal surgery. So, they finally got me in a room and my husband called my surgeon to explain what was going on. The surgeon got on the phone with the hospital doctor (who I had been treated by several times by now), and the next thing I knew, I was finally getting medicine AND being transferred to the hospital where my surgeon was.
I arrived by paramedic, with my husband following us there, and they had a room ready for me. I got all set up in bed, they started an IV and got ahold of my surgeon. I was still throwing up and no change, so it was decided I needed an NG-(Nasogastric)tube. I have never in my life experienced something so uncomfortable, and I have been through some stuff! Well, the tube did not get connected completely and I was choking on my own bile while still throwing up. My husband got the nurses and let them know, per my request, they could take out the tube or I would. The doctor found out, per CT-scan taken when I got there, I had an ileus, a ‘painful obstruction of the ileum or other part of the intestine.’ This also led to a giant hematoma that, in the end, had to be removed. I then was back home, trying again to get used to my ‘new normal.’ I was finally getting some energy. We found a diet that was mostly working for me, and things were starting to look up for us.
I had a couple of months like this, and then I started to decline. Again, nobody understood what was going on. Heart problems and blood pressure, but nothing too bad. More tests, more new doctors, and more questions left with no answers. I was unable to eat a normal diet. After surgery, gluten was no longer an option, but now I lost more options. As the months went on, I lost fiber, red meat, eggs, most vegetables and fruits, and dairy. More doctors, more tests. Fibromyalgia and Chiari malformation, my most recent diagnosis. Fibromyalgia has been expected for a while now, but finally confirmed. It was both a relief and a frustration. Another diagnosis with no answer or hope for much help other than management. My medications do help, although I take around 30+ pills daily. Finding what works for my body has been so important because no two illnesses are the same. Everyone handles and feels things differently.
Talking with others helps, but fatigue makes that hard sometimes. Self-care is SO important. And having people who love you and are there for you really is what makes all the difference. I get told so often I am strong, and dealing with everything life must throw at me with grace, but I could not have done it alone. I share my story because when I felt alone in the world, there was someone who was there for me, someone who understood the pain and darkness. You are NEVER alone if you do not want to be.
It, also, is a progressive kind of fun thing, like some of my other conditions. Unlike my other conditions, this one is going to be managed and taken care of however needed, as soon as needed. We are not messing around or waiting. We cannot. I have already chosen life, remember? So, I will manage as I can, I will go to appointments and take my medications… and when the time comes, I will have decompression surgery on my skull. Possibly once, possibly multiple times, but I will NOT give up or give in. My health does not define me, and it will not control me. I am still Mia, just a different version who must take it a little slower and love herself a little more. And maybe, this was a lesson I needed this whole time, to love myself and let others love me.”
This story was submitted to Love What Matters by Mia D. of Colorado Springs, Colorado. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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