Bumps To Babies | Parenting with a Chronic Illness
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Parenting with a Chronic Illness

In light of Chronic Disease Awareness Month, I’ve been reflecting on how my chronic illness impacts my life, especially as a parent.  Like all mothers, I have growing concerns for my children, hoping that I can keep them safe from harm.  But living with a chronic illness, those concerns feel more real, simply because I worry about my ability to always be there for them.  The older I get, the more I realize that my chronic illness plays a bigger role in my life than it did 20 years ago, when I was first became symptomatic.  I try to remember that younger version of me, before I had kids.  I was more carefree, not thinking about the consequences my illness had on anyone else.  But, I will say, the minute I became a parent, my illness was no longer my own.

I was diagnosed with Crohn’s Disease when I was 22 years old.  I started having symptoms; however, nearly 5 years prior.  I was misdiagnosed during those years and suffered daily.  Crohn’s Disease affects the digestive system of the body, usually in a progressive nature, worsening with time (CrohnsandColitis.com, 2016).  Symptoms include: recurrent diarrhea, rectal bleeding, extreme weight loss, fatigue, abdominal pain, and reduced appetite (CrohnsandColitis.com, 2016).  For most of my college life, I suffered with all these symptoms to an extreme.  My breaking point came when I got pneumonia after years of not providing my body the necessary treatment.  My parents knew I needed a physician who could bring new answers.  I sought treatment at UCLA, with a well-known Gastroenterologist.  Once he properly diagnosed me and gave me a treatment that helped my symptoms, I was soon in remission.  I’ve been receiving the same medication, Remicade, for over 14 years now.  My body has relapsed several times since starting the treatment, which has led my doctor to increase the dosage multiple times.  Fortunately, I’ve been able to find stability with my current dosage.  Those who are unfamiliar with my medication may not realize the amount of health risks that accompany this type of treatment.  Remicade lowers my ability to fight off infections, in addition to increasing my risk of developing some rare cancers (Remicade.com, 2017).  Fear of these risks never crossed my mind when I first started the treatment.  But after my first child, I was overwhelmed by the possibility of having an adverse reaction to my medication.

Being a parent with Crohn’s disease, my health is constantly in the back of my mind. My medical file is as thick as some geriatric patients, something I know from my doctors constantly reminding me, “You’re a very sick woman.”  I have had multiple procedures, and numerous surgeries related to my Crohn’s diagnosis.  And with each surgery, I go a number of days or weeks without being able to pick up my children, sometimes bedridden due to discomfort.  I then rely on my husband and mother to help around the house to make sure everyone is cared for.

As I embark on my 15th year receiving the treatment, I can now see my children find it normal when a nurse comes to our house and administers my medication.  My body is compromised with more susceptibility to infections, sometimes making even the simplest cold feel like influenza.  I’ve noticed that when I get my intravenous infusions[1], my body is more exhausted and worn out.  When I was in my twenties, I could quickly bounce back after my treatment, but now my body simply needs a break.  I receive my infusions every 7 weeks and each time my kids come over, rubbing my back, and ask if my “boo-boo” will get better.  It takes everything in me not to cry, because I wish I didn’t have to show my kids how hard my body has to work each day.  My treatments have become so ‘normal’ in our household; my infusion nurse feels more like a family member.

I used to feel like my body let me down when I became ill years ago.  But today, when I look in the mirror, I see a person who has triumphed over so much hardship.  My body has put me through grueling tests.  I’ve survived and even brought life into this world.  Although it takes more work for my body to be at its best, I show my children that with willpower and strength I can accomplish anything I set my mind to.  People with chronic illness do not walk with less might; they understand what it’s like to live with difficulties thrown at them and still find a way to get up in the morning and face each day.  My illness doesn’t keep me from living my life and being a great parent.  It motivates me to see that I am unique and have fought battles that some people may never have to, yet I persevere.

References

Crohn’s Symptoms (2016).  Retrieved from

www.crohnsandcolitis.com.

Remicade Infliximab (31 January 2017).  Retrieved from

https://www.remicade.com 

[1] Injected directly into a vein, provided by a medical professional (Drugs.com, 2017).

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