#ccawarenessweek

I am blessed to have family and a lot of friends who support me and who I can go to vent, ask questions and sometimes even just a hug on those really bad days. (either by phone, text, email and even on Social Media) Special thanks goes to ALL~ who have been with me since I was officially diagnosed and I’m extremely thankful for these people 💜

—IBD AWARENESS WEEK— • • So I saw this infographic and I started to wonder what my costs for living with IBD translated to... so I sat down and decided to figure it out. 🤔 • • Health Insurance through my Employer: $6052.32 per year for my family, divided by 3 of us = $2017.44/year for me • + Deductible & Out of Pocket Max: $6,000/year • + Copays for IBD related care (just going to say an average of 8 specialty visits per year)... $360/year • + Short Term Disability I pay for through my employer: $444.88/year • + Long term disability through my employer: $107.10/year • + Prescription costs (only IBD related ones): $2,460 • + Vitamins, Supplements, Etc. due to anemia & other vitamin deficiencies: $720/year • = $12,109.42 • • This is approximately 25% of my entire annual salary. Yes, you read that correctly. I have medical debt piling up because unfortunately, I can’t even afford the deductibles required by my insurance plan. That’s the reality of it. 😔 • • These numbers don’t even take into account my prescriptions for other things...or when insurance deems something unnecessary...or a doctor goes out of network...or in the event I wind up in the hospital. So really this $12k is just a base line... a “best case scenario” for my IBD. • • Unfortunately this is the reality for so many of us. And that is why it’s important to shed light on this devastating issue. We need change. 💔 . . . . . . #ibdvisible #ibdawareness #ibdawarenessweek #ccawarenessweek #ibdwarrior #ibd #ibdsuperheroes #friendswithcrohns #crohns #crohnswarrior #crohnsdisease #crohnsawareness #crohnsandcolitisawarenessweek #crohnsandcolitis #crohnsandcolitisfoundation #colitis #ulcerativecolitis #spoonie #invisibleillness #chronicillness #invisibleillnessawareness #chronicillnesswarrior #autoimmunedisease #finances #financialimpact #healthcare #healthreform #insurance #insurancesucks #spoonie https://www.instagram.com/p/B5uAwoXgPHb/?igshid=1cndtr619f67t

Today I’m back on Capitol Hill with @crohnscolitisfoundation to talk about the #safestepact during #CCAwarenessWeek ! (at United States Capitol) https://www.instagram.com/p/B5sTx1eAeRA/?igshid=1usf1ry5kp8h9

— IBD AWARENESS WEEK — • • All about relationships... • • Relationships are tough enough as it is, but add a chronic illness on top of that and they can be even more of a struggle. However, the people that are meant to be in your life will stay, and those who don’t were not worth your energy and spoons. 🥄 • • Today, I asked my husband, my best friend, and my mom to give me their perspective on being my biggest supporters and caregivers living with IBD. And they did not disappoint. (I went live and shared their full stories if you want to listen.) 😊 • • My husband touched on his fears leading up to my surgery and how he looks out for signs I’m not feeling well even when I don’t say anything. My mom touched on how much awareness is needed and how hard the diagnosis process was/can be and how living so far away from me is difficult for her. And my best friend Katie threw it back to my first ER visit and the struggle of watching me go through something we knew nothing about, as well as the impact it’s had on so many parts of my life. 💜 • • It’s important to remember that although we are the ones physically going through things, our loved ones are going through things mentally for us. 💜 • • I urge you to ask a loved one or two how your disease affects their life and their perspective, I think you’ll be surprised at their answers! I know I was! 💜💜 . . . . . . . . . #crohns #ibdvisible #ibdawareness #ibdawarenessweek #ccawarenessweek #crohnsandcolitisfoundation #crohnie #crohnswarrior #crohnsdisease #crohnsawareness #crohnsandcolitis #crohnsandcolitisawarenessweek #colitis #ulcerativecolitis #spoonie #ibd #ibdwarrior #ibdsuperheroes #friendswithcrohn #invisibleillness #caregiver #perspective #chronicillness #chronicillnesswarrior #chronicillnessawareness #autoimmune #autoimmunewarrior https://www.instagram.com/p/B5rX69PgowI/?igshid=8wn6khd3e7vu

-IBD AWARENESS WEEK- • • Caregivers... what’s a caregiver? I’m sure everyone’s definition is a bit different, but for me a caregiver is someone who helps you get through. Someone who supports you and is there for you when you need them. No matter what. 💜 • • I am extremely blessed to have so many amazing individuals in my life that are there for me and are willing to help me back up when I fall. Without them, I wouldn’t be as strong and resilient as I am in facing the battles I do with my Crohn’s disease. 💪🏻 • • I am so thankful for all of these individuals and so many more that I couldn’t fit into pictures. 💜💜 . . . . . . . #crohns #ibdvisible #ccawarenessweek #crohnsandcolitisawarenessweek #crohnsandcolitisfoundation #crohnie #crohnsdisease #crohnswarrior #crohnsawareness #crohnsfighter #friendswithcrohns #colitis #ulcerativecolitis #ibd #ibdawareness #ibdwarrior #ibdawarenessweek #ibdsuperheroes #caregivers #spoonie #invisibleillness #invisibleillnessawareness #chronicillness #chronicillnesswarrior #autoimmune #supportsystem https://www.instagram.com/p/B5o8WYVgAxU/?igshid=1eqineavj3eao

It’s IBD Awareness Week! 💜 • • I’m looking forward to sharing a little bit about what IBD means in my life and in that of my family as well. I hope you’ll join the millions of IBD patients and caregivers around the world and help us raise awareness for this invisible illness! ❤️💜❤️ . . . . . . . #crohns #ibdvisible #ccawarenessweek #crohnsdisease #crohnswarrior #crohnsawareness #crohnsandcolitis #crohnsandcolitisawarenessweek #colitis #ulcerativecolitis #ibd #ibdawareness #ibdwarrior #ibdawarenessweek #spoonie #invisibleillness #invisibleillnessawareness #chronicillness #chronicillnesswarrior #chronicillnessawareness #ibdsuperheroes #friendswithcrohns https://www.instagram.com/p/B5jLdiJgsxO/?igshid=1gzi92dt9mxpx

If you happen to be in @grandcentralstationnyc , in the West Helmsley Walkway on 46th and park ave, look up and say hi to me and @larrydn7 representing @crohnscolitisfoundation and the #IBD community! If you take a pic a tag me, I’ll repost in my instastories!! 💜 #ccawarenessweek #crazycreolemommylife #ulcerativecolitis #jpouch #ibdmoms #nyc #grabdcentralstation (at New York, New York) https://www.instagram.com/p/BrYkk7SHCYY/?utm_source=ig_tumblr_share&igshid=9ss1qt3qkiuw

As Crohn’s and Colitis awareness wraps up I wanted to share my personal motivation to keep fighting.... I look at their faces and I’m reminded of how lucky I am to have my family. They continue to inspire me and have motivation to try the next treatment... to get out of bed when I can barely move... to advocate for myself and try to help other moms in my situation. I love the fact they are so close💜 even though there’s more than six years apart. I watched as my 14 year old daughter takes her little brothers hand while trick or treating... because she wanted to make sure he didn’t get lost. My kids are breaking stereotypes about autism every day. Love..affection... empathy.. funny.. caring about those around them..Not exactly what the general public understands about autistic kids. They inspire me to do and be so much more... I often think how things might be different if I didn’t have a family 🤔 I think my life would be different and not in a good way. What is your motivation? My motivation calls me mom #ibdawareness #myIBD #ccawarenessweek #chronicillness #spoonie #autisticpride #motivation #stelara #ibdmom #crohnsdisease https://www.instagram.com/p/BrFaMKEnG1M/?utm_source=ig_tumblr_share&igshid=xd7jqejsgs5v