Mom Guilt Living With A Chronic Illness

It’s like missing my kids growing up even though a lot of the time I’m sitting right there.

Chronic illness officially took over my life in November of 2014, but I had been sick on and off for a few years before that. Phantom cramps and stomach pains. Scans and tests didn’t find much of anything at all. We thought it was female-related, so I had a hysterectomy. Then we thought I may have an issue with gluten. Then the pain would go away for awhile and I would get better. In 2013, the pain became so great I couldn’t eat. Out came my gallbladder, and I was diagnosed with my first case of pancreatitis. Nothing to worry about, the doctors said. Pancreatitis can happen with a bad gallbladder attack. I thought I was going to be okay.

I was okay. For more than a year, I felt great. I was back to my old self again. I was super mom running around with the kids. I could eat whatever I wanted. Life was good. Then, Thanksgiving 2014 rolled around and I could barely eat again. I tried just calling the doctor, but all that got me was an immediate recommendation to head straight to the nearest emergency room. I knew I wasn’t coming straight back, and I was getting admitted. What I didn’t realize was that this was the first in a never ending string of ER visits and admissions to come.

I was diagnosed that night with pancreatitis. Over the coming months that diagnosis turned into acute pancreatitis, and that diagnosis turned into chronic pancreatitis. I didn’t drink, smoke, or do illegal drugs. I didn’t even abuse legal ones. I had two genetic abnormalities. One was a pancreatic divisum, a case in which you usually have a single duct going in and out of your pancreas, but I had two. Apparently that can cause issues. I also had genetic testing performed and I was found to have a PRSS1 genetic mutation, which also affected my condition. In other words, I was born with this problem, it wasn’t going away, and if it didn’t get fixed, I was in danger of getting pancreatic cancer.

As most people who have dealt with pancreatitis or know someone who will tell you, the condition is extremely painful. From November 2014 until March 2016, most of my time was spent in the hospital. I would be there for a week or two, home for a week or so, and then the pain would get so bad again I would have to go back to the hospital. Eating was torture. I lost about 70 pounds, 50 of those in the first three months of my illness. I missed dozens of hockey games, dance lessons, and school events. I lost count of the nights I didn’t get to tuck my kids in, even when I was home, because I was too weak to get out of bed. When eating because too much the doctors would put feeding tubes in. They were just as painful to me as food, but they kept me home longer. The kids would try and help my husband with the feedings and to carry my pole up and down the stairs. They would snuggle in bed with me and on the couch. When I was in the hospital they jumped in bed with me there too. I took tons of pictures on my phone whenever I could just so I had them when I wasn’t around. I was missing so much it made my heart ache. What would make my heart ache more were the cries and screams when my condition got too painful at home and I headed to the ER once again. I felt like I was failing my kids, like I was letting them down. Why couldn’t I be stronger? Why couldn’t I handle this? I still in my head think that sometimes. It’s hard for me as a mom to grasp how sick I was, and still am to a point, and that I can’t make everything better for my babies. That I can’t protect them from this. That I have a major weakness. This is not anything I ever wanted for them to have to go through.

In March of 2016, I underwent a surgery called a TP/AIT, Total Pancreatectomy and Auto Islet Cell Transplant. In a 13-hour surgery, my pancreas, appendix, spleen, and duodenum were removed, and islet cells from my pancreas were translplanted into my liver, in the hopes they would eventually begin to take over the function of my pancreas from there. Until then, I would be a diabetic, but no more pancreatitis and no more massive suffering.

So far, recovery has been long and frustrating. You are warned the recovery time from a major surgery like the TP/AIT can take up to a year. From a pancreatic perspective, I’m doing okay. My islet cells seem to be cooperating, and I require very little insulin. In fact, my endocrinologist is moving me off of some of my injected insulin and onto oral medication instead, and at a much less frequent dose. My recovery site has given me issues. I’ve still had pain and have required hospitalizations on an average of once a month since October. Recently tests reveal the surgery site and my stomach lining was covered in ulcers, so we are working to get that cleared up now. Fatigue is still a major issue as well. I just can’t do what I used to do. Errands all day physically take me out the entire next day. I’ve had to cancel evening plans because pain strikes me that afternoon. I cannot work a regular job. I cannot exercise regularly, hardly at all actually, as it will put me in pain. Cleaning more than one room in the house causes major fatigue. And I’m still missing hockey games and dance lessons.

I try to run kid-related errands and spend as much time with them as possible, but I still feel like a lump on the couch. Like Sheldon Cooper, I have my spot. My body has limits now, and I almost feel trapped in a prison. Chronic illness is not something I would wish on anyone. I keep positive and stay as active as I can. I have been blessed with amazing friends and a saint of a husband. I just pray I am doing the best by my children. I feel like I need to do more, but forgive myself when I truly can’t.

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Jen Forsyth
Jen F. lives in Gibsonia, PA and is a mom to three kids. After battling two school districts in seven years for her own autistic son, Jen started The Happier Autism Family, where she became an educational advocate, representing families at IEP and other meetings, and she also empowers parents via public speaking and social media, teaching about education law and what to expect when having special needs children in school. In her spare time, Jen can been seen running like crazy to hockey and dance practices, and posting as many pictures of cats she can find to Facebook.