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What Did it Feel Like When You Realized that You Forgot?

To be honest, I completely forgot.

I forgot what it was like to live a life that didn’t look like this.

Labs and infusions and pills – so many pills.

Appointment after appointment. Doctors on speed dial. Lists of symptoms. Deficiencies. Allergies. Medications. Supplements. Side effects.

I forgot that this isn’t normal for most people

Let me rewind.

Last week, I spent several hours at my infusion center to receive my routine remicade infusion through a port in my chest. During that time, I watched Netflix, did some work, wrote a little, and texted with a friend. A healthy friend. A friend I love very much, but a friend who is not entirely familiar with the ins and outs of what I lovingly refer to as “the chronic life.”

She asked me what it was like to feel something flowing into my veins. She told me that she’s never had an IV before. In that moment, I was so glad that we were texting, because if we had been on the phone or face to face, she would’ve seen me literally stop in my tracks. When I paused to think about her question, I realized something that felt significant to me.

My friend meant nothing by asking me this question. She didn’t mean to upset me, to make me think, or even to serve as a comparison between her life and my own. She cared about me, and she just wanted to try to understand more than a basic explanation of how Crohn’s Disease affects my life from day to day.

In that moment, I remembered that what has become my routine is entirely unfamiliar to many others

When I got home that night from my infusion, I made a list of all of the things that I have long since stopped thinking about related to my life with IBD. I was surprised to see on paper all of the things that have become second nature to me. Here’s just a few, in no particular order.

  • Running to Walgreens to pick up prescription refills
  • Setting time aside each week to fill my am/pm pillboxes
  • Routine appointments for medication related lab work
  • Scheduling life around trips to the infusion center
  • Becoming used to needles – for blood draws, peripheral IVs and to access my portacath
  • Stocking my cabinets with Drip Drop packets, especially during the summer
  • Never leaving the house without a water bottle, medications, wipes, calmoseptine and an extra pair of underwear
  • Pre-screening restaurants to ensure they have something safe on the menu
  • Knowing where there is a bathroom, regardless of where I go
  • Regularly using the apps DrugStars, MyChart, Walgreens, Blue Cross Blue Shield and SitOrSquat

I reached a point where I stopped writing, and began to really think about everything I had written down.

I expected to feel sad

I began experiencing symptoms of IBD 9 years ago, and although there were short bursts of “normal” in the beginning, the routines from my old life have long since faded away. After coming to this realization, I expected to feel sad.

Instead, I was distracted by the feeling of gratitude

Sure, the daily normal I live now is different than I once could have imagined; but in a way, I feel like it has set me up for success. I almost never feel unprepared, whether that’s having the right things in my house, in my purse, or as a resource in my phone. When my family or my friends have medical questions, especially if they involve the GI tract or medication reactions, they know they can call or text me at any time of the day or night.

As I begin to walk through the In-Vitro Fertilization (IVF) experience, I am not afraid of the injections, the blood draws, or the surgical procedures. I’m not worried about being a mother when my child gets sick, because I know I will always be able to empathize with their pain. I even realize that I have become thankful for the quiet and the boring days, because if I am not dramatically ill, there are things to be grateful for.

In truth, I’m not entirely sure when I forgot that my normal with Crohn’s Disease wasn’t just my normal, but I’m glad that I did.

What about you? Did a certain moment, friendship or experience make you realize that you’d forgotten about your IBD adjustments? I’d love to hear your stories below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    7 months ago

    Great question.

    I can’t think of an exact moment, but I will say whenever I had friends visit me at the hospital, I could always see the look in their eyes when they saw me hooked up to an IV. Or when they saw me have an infusion done. It always hit me then, that wow, my normal is not their normal. And then I would take a second and step back and realize how “not normal” my normal is.

    Always dancing,
    Elizabeth (team member)

  • Amanda Osowski moderator author
    7 months ago

    Elizabeth,

    I absolutely relate to this!

    Amanda (team member)

  • ginamm
    9 months ago

    about 5months ago i started seeing a new rheumatologist and she asked me to explain what was happening to me and my symptoms leading up to my crohn’s /behcet’s disease diagnosis. i said well, i’m 51 now and i started when i was 19 and was diagnosed with iritis and went on about everything i went through with that, the constant stomach pain i dealt with on a daily basis and painful sores in my mouth and other areas for years. at 24 being diagnosed with colitis after filling the toilet up with blood when i thought i was having diarrhea and when in the hospital for 6 days when this happened i passed a clot the size of a large rock. cataract surgery at the age of 40, diagnosed with crohn’s/ behcet’s at 42, and at 44 having a total hip replacement after dealing with and working with severe pain in my lower back hip and down the top of my leg for 2 yrs., and all the other daily symptom we deal with with this disease! then i paused for about 10seconds, and a huge emotional feeling came over me! i apologized to my dr. and said while i was telling you all of this it reminded me of everything i have gone through all these years and i’m still here! i have no problem talking about my disease especially if it can help other’s! it doesn’t bother me anymore when someone says to me “you go to the dr,’s to much! you look fine, your not sick!” I’m grateful for the life that i have and everyone who’s in it!

  • Amanda Osowski moderator author
    9 months ago

    What a great attitude! You’re an incredible testimony to the strengths of chronic illness patients. Thanks so much for sharing! – Amanda (InflammatoryBowelDisease.net Team Member)

  • rjbender
    9 months ago

    Wondering how others handle feeling as though your careers are being sidetracked because of Crohn’s issues? I believe I’m not getting anywhere because my supvr/company does not understand this disease and the time off it sometimes requires (doctor appts, hospital stays/surgeries, feeling too ill to come into the office, etc.) And when I ask to work from home, it feels like it is granted grudgingly and goes against me ever having a chance for upward mobility. Yes, I have this illness, but I’m not ready to give up and let it control my life… so why do others seem to allow it to do so? Along with the Crohn’s and Exocrine Pancreatic Insufficiency (EPI), I was just recently diagnosed with stage 4 cirrhosis of the liver due to what my doctor thinks is non-alcoholic fatty liver disease (NAFLD). He told me to lose the 20 extra pounds I’m carrying around and to stay on the Humira and Azithroprine (Imuran) even though they both can cause liver issues. I’m so confused right now… go with my gastroenterologist’s advice and stay on them or refuse to take them and insist he find something else to try. I have been on these two medicines since 2011. Thirty-seven years of Crohn’s and I’m getting really tired of having to advocate for my own health because the doctor seems to think the biologics are the only way to go. :'(

  • Amanda Osowski moderator author
    9 months ago

    RJ – Thank you so much for commenting. I’m so sorry that you also feel like your career has been sidetracked because of Crohn’s issues. This is an incredibly hard thing that many of us in this community have faced.

    There are a few articles written by other team members that have helped me greatly when thinking about my professional path, and I thought I would share them incase they helped you too.

    https://inflammatoryboweldisease.net/living/life-by-design-ibd/

    https://inflammatoryboweldisease.net/living/crime-of-ibd-theft/

    https://inflammatoryboweldisease.net/living/brand-new-job-brand-new-issues/

    With regards to conflicting medication recommendations, I am so sorry. I know firsthand how exhausting and frustrating that can be. My personal recommendation would be to see if you can get a second opinion from someone in both specialities. I am sending you so much luck.

    Warmly,
    Amanda (InflammatoryBowelDisease.net team member)

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