Single Parenting with Crohns Disease
I’m awake, it’s 6am. I am enduring sharp searing pains in my stomach and am boycotting everything edible. I can’t stand upright because the pain in my stomach is strong enough to make me short of breath. Do you want to know what I’m concerned about? I’m concerned that I won’t be able to play with my daughter today, much less get my chores done. Living with Crohns Disease is very difficult and it makes a single mom’s job nearly impossible some days.
Crohns Disease is an inflammatory bowel disease that affects the entire GI tract at times. The symptoms are swelling, bloating, diarrhea, vomiting, ulcers (through the entire GI tract), malnutrition (in extreme cases) and weight loss for starters. It can affect any age group and has a slight tendency to run in families depending on the doctor you speak to. Crohns is currently a life long illness, meaning it has no cure, although if you find the right combination of medicine, you may go into remission.
My daughter was born in June of 2007. I was married at the time and we lived in a decent 2 bedroom apartment. She was the light of our lives and our world revolved around her that is until I started to get sick. Within two weeks of her birth, I started to experience severe pain and went to the doctor. My doctor, while very calming and nice, didn’t take the chance to investigate at first. She assured me it was just my body adjusting to having a child. Months went by and slowly but surely the pain increased and I needed a surgery in October of 2007 to drain an abscess that had made me septic. Time went on and the pain increased again along with other not so pleasant symptoms like diarrhea and nausea. I started seeing doctor after doctor and specialist after specialist. In December of that year I was misdiagnosed with Celiac Disease, but obviously my symptoms got worse. By April of 2008 I landed in a local ER, where my step mother worked as a Radiologist, after losing 80 lbs total since the surgery in October. A GI came down to see me and instantly sent me to CAT scan and within the hour had diagnosed me with Crohns Disease and I was hospitalized.
Now my days consist of extended stays in my bathroom and multiple medicines. My doctor is wonderful and constantly trying new medicines with me despite me still being in denial. Since my diagnosis in April of 2008, I have been in remission for a total of 6 months, 4 months in the winter of 2009/10 and 2 months this fall, although it seems this most recent one is coming to a quick end. In late 2009, I separated from my husband but quite honestly didn’t have any idea how hard being a single mom would be albeit with a chronic illness.
Being a single parent is hard no matter which way you slice it. You have to do everything on your own, without support from another, and still be a super hero. I couldn’t imagine doing this with a new born, seeing as how I’m having trouble putting on my cape and tights for my 3 year old. Add in Crohns Disease and I’m lost. I can’t tell you how many times “No I’m sorry baby, we can’t go outside to play today, Mommy doesn’t feel good” has left my lips so far. It’s very saddening for me to have my daughter run up to me and chant “Mommy takes pills” when I’m taking my morning doses. Or worse yet, when I lay down, regardless of my health have my daughter ask me “Mommy sick? Your stomach hurt?” It honestly breaks my heart just a little more each day.
To think that my Crohns Disease is only registered as Moderate gives me the chills. I already have to deal with arthritis, which is another symptom, and a possible diagnosis of Fibromyalgia and to think that it only gets worse? For medicines I am currently on 4000 mg of anti-inflammatory a day, and steroids. I’m weaning off the steroids as it is dangerous to be on them for too long. The side effects from that are brutal; swelling of my joints, water retention, exhaustion, nausea, you name it. It just baffles me that some of my fellow “Crohnies” are facing surgery and colostomy bags and have monthly infusions because my medicine stopped working for them.
The idea of my disease getting worse is a major cause for anxiety. How would I handle taking care of my daughter if I’m worse than I am now? Are the medicines going to be able to control it this time? It’s definitely daunting and very, very scary. The financial aspect is even worse.
Imagine it’s nearing Christmas time, a time w hen a family exchanges gifts and spends time around the dinner table. Now imagine having to pick up your prescription for steroids. You don’t have health insurance anymore after losing your job to the economy and the state has luckily covered you with Medicaid. You pull up to the Walgreens drive through window, your daughter happily chirping about what she wants for Christmas in the back seat and the pharmacist hands you a bill after your credit card has been declined. Medicaid doesn’t cover this medicine he tells you, the total cost is $4,400 for one month. That’s almost six times your mortgage, which you can barely pay after daycare expenses. Now what?
Those daunting numbers are something a Crohns patient has to deal with a lot more frequently than I’d like to admit. Maybe it’s do-able with two incomes? I don’t know, that’s not currently an option for me, let’s just say I haven’t found a way to fix my finances this year, and it’s going to be a very bleak Christmas. Now remember, I have moderate Crohns. How does someone, whose disease as advanced beyond mine handle the financial aspect without health insurance? I’m completely clueless.
I guess if I had one wish, short of a cure, I would wish for a higher awareness of Crohns Disease and more tolerance. Crohns is not just a tummy ache and it makes it very difficult to live your life sometimes. Crohns is part of my life, just like being a single parent, but I refuse, absolutely refuse to let it BE my life. So today, despite the pain, I’m going out in the front yard to play in a pile of leaves with my 3 year old.