Shear Truth This mom's life with Crohn's disease

At least someone is sleeping 😂 #goldenretriever #goldensofinstagram #newhorizonsservicedogs https://www.instagram.com/p/BrkGFHBnl3o/?utm_source=ig_tumblr_share&igshid=v0recg8an2ih

Friday I had to say goodbye to my IBD specialist she had an opportunity to head the GI department at a university in another state... My anxiety is not even measurable. If there’s one thing I’d tell anyone with IBD... Especially the newly diagnosed is to seek out a IBD specialist research hospitals usually have IBD clinics. When I first started seeing her no one would help me. I’d been diagnosed and undiagnosed a few times by the time she took over my care. Being able to be open and honest with your doctor is so important! You need to be an active member of your care team.. if a doctor won’t listen to your concerns and be open to your suggestions then it’s probably time to find a new one. Hoping the transition is smooth I really dislike change🤬 I’m not keen on there being a lapse between GI’s..... ** side note** I swear every GI’s office looks the same 😂 #clinic ibd #crohnsdisease #chronicillness #butyoudontlooksick #spoonie #gastroparesis #anxiety #UC #crohnsmom #advocate (at Shands At the University of Florida) https://www.instagram.com/p/BrcEx4Bn1gr/?utm_source=ig_tumblr_share&igshid=1wo5bln8bzrwu

It’s safe to say this trip for clinic is off to a rocky start🤬 my specialist is about 2.5 hrs from me. A semi truck clipped my car on the way up and didn’t stop or exit the interstate. It was so scary!! I’m lucky though I wasn’t hurt and my car is drivable so I’ll make it to clinic tomorrow...#spoonie #wtf #ibd #mycar ☹️#lucky #chronicillness #butyoudontlooksick #clinic #crohnsdisease https://www.instagram.com/p/BrXBo57HRwn/?utm_source=ig_tumblr_share&igshid=1h3vs4iuh6ecz

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

IBD is So much more than a bathroom disease.. I finally gave in a few years back and got a port for Entyvio infusions and home hydration. Fast forward three years and I’m inpatient with a line infection our best guess was 🤔 I’d been exposed to the bacteria during a hospital stay. I was away from my family for six days as the doctors tried treating my infection. Only to lose my port the following week and left with an open wound and a picc line for another few weeks of IV antibiotics. Ibd patients are more prone to infection from the meds we take and interventions needed for treatment. No two patients are the same in their disease path this is #myIBD #chronicillness #ibdawareness #ccawarenessweek #spoonie #butyoudontlooksick #ibdmom #entyvio #hydration #centralline #crohnsdisease https://www.instagram.com/p/BrB_2gRnB4v/?utm_source=ig_tumblr_share&igshid=19qhq6wwr7q5x

Fatigue.. Something most with IBD struggle with even when in remission. I never knew it was possible to be so tired you can’t sleep and when you do sleep you wake up tired. #ibdawareness #spoonie #butyoudontlooksick #ccawarenessweek #crohnsdisease #nausea #💩 #myIBD #chronicillness https://www.instagram.com/p/Bq_vRGgH3u7/?utm_source=ig_tumblr_share&igshid=kbjm7pg7o8zj

You would never know that I have a central line tucked in my dress. I think I look pretty healthy here, right? They don’t call it an invisible disease for nothing the endless infusions and doctors appointments feels like a full time job. It’s amazing what a little makeup and dry shampoo can do. #ccawarenessweek #ibd #crohnsdisease #spoonie #chronicillness #butyoudontlooksick #piccline #ports https://www.instagram.com/p/Bq9Vc3LHvTZ/?utm_source=ig_tumblr_share&igshid=o4159ehler3c

This week is Crohn’s and UC awareness week! I’ll never forget the first time I heard the words. Crohn’s disease like many others with IBD I have joint issues.. hair loss.. I’ve had obstructions and surgery.. my dentist is buying his next boat with what I pay him and I deal with ulcers in my mouth sometimes down my throat. I even have a central line that I use for hydration and IV meds. IBd is more than a bathroom disease #ibdawareness #crohnsdisease #ibdmom #spoonie #biologics #chronicillness #butyoudontlooksick https://www.instagram.com/p/Bq9S-ubn2KW/?utm_source=ig_tumblr_share&igshid=1jdkrhvnliyj4

The joys of night sweats🤬I wake up freezing and soaked like I’ve been Outside playing I’m the rain. So far I haven’t found anything that really helps🤔 and open to suggestions #ibd #spoonie #nightsweats #chronicillness #gastroparesis #crohnsdisease https://www.instagram.com/p/BqzazzQHx2M/?utm_source=ig_tumblr_share&igshid=1hby66s8e5rmn

Do I know how to party or what!!! Nothing says good time like #Stelara and B-12 but so far so good. This has been the best med this far besides #humira fingers crossed we can get it moved to every four weeks #butyoudontlooksick #crohnsdisease #UC #ibdwarrior #spoonie #chronicillness #B-12 #ibdwarrior https://www.instagram.com/p/BqeRDDfnphT/?utm_source=ig_tumblr_share&igshid=yzc5hb7zvewi

So let’s talk hair loss ladies..🤬 This is the result of simply running my fingers through my hair . (This happens several times a day) It’s getting so bad... sometimes I’ll close my eyes while I’m brushing so I don’t notice how thin it’s getting or a new little bald spot that appeared.... I’m not ashamed to admit it.. I’m vain! I’ve always had pretty thick hair until getting sick a few years back. It’s hard as a woman to literally have your hands full of what makes you feel feminine or pretty. This recent flare has been relentless.. Ibd is more than a bathroom disease! Many of us deal with skin..eye..and joint issues I’ve even chipped a tooth because this disease has stripped my body of nutrients and some of the meds cause bone and calcium loss. Ibd is a theft! It steals your energy it steals your friends.. sometimes your job.... it steals parts of your body. It steals the ability to just enjoy yourself because you never know if you’ll feel unwell when you get there... it steals the memories you could be making. It steals your freedom sometimes it steals your happiness... But today it’s stealing my hair😔 #spoonie #gastroparesis #ibd #ibdmoms #chronicillness #hairloss #UC #crohnsdisease #butyoudontlooksick #ibdwarrior https://www.instagram.com/p/BqSIDp0Hdc7/?utm_source=ig_tumblr_share&igshid=2eu866cmjoez

It’s been a very long night... I just need a break #phenergan #nausea #fatigue #spoonie #gastroparesis #ibdmom #chronicillness ..... I often wonder how other people get through days like this? https://www.instagram.com/p/BqFB0zWHqUw/?utm_source=ig_tumblr_share&igshid=13a01dzsxxpeo

This is Brave💜 I know he’s gorgeous but he’s so much more than his handsome looks😊 I could have never anticipated the positive changes he would bring for Landon and myself.... I never imagined the role he’d play in our family.. So as the holidays approach and your feeling like giving I hope you’ll consider New Horizons Service Dogs... https://newhorizonsservicedogs.org/about/ #newhorizonsservicedogs #servicedogsofinstagram #spoonie #chronicillness #autisticnotbroken #ibdmoms #crohnsdisease #payitforward (at New Horizons Service Dogs) https://www.instagram.com/p/BqEn_R5n3tg/?utm_source=ig_tumblr_share&igshid=hmo7u4k3rvez

Best looking service dog around! I absolutely love his groomer who did Christmas pictures for her clients. #newhorizonsservicedogs #goldensofinstagram #brave #superhero #servicedogsofinstagram #servicedog (at SouthShore Pet Grooming) https://www.instagram.com/p/BqBDx9_nsAt/?utm_source=ig_tumblr_share&igshid=7js8rwcq8vkk

Off to a rough start today... I’m kinda curious why IV Tylenol still comes in a glass bottle 🤔 we’re trying to find some alternative pain control for upcoming motility testing.. Anyone else have any experience with IV Tylenol? Did you find helpful? The jury is still out on this one for me time will tell.... #chronicillness #ibdawareness #spoonie #crohnsdisease #gastroparesis #butyoudontlooksick #hickman #fatigue #nausea #phenergan https://www.instagram.com/p/Bp4c7MMnrbb/?utm_source=ig_tumblr_share&igshid=14r6h56nspq1c

My life saver! I won’t lie popping them open takes a little practice but I’m so thankful it’s available so I’m not 🤮 all day. #gastroparesis #ibdmoms #spoonie #chronicillness #chronicpain #butyoudontlooksick #crohnsdisease #nauseasucks https://www.instagram.com/p/Bp161hmnLRR/?utm_source=ig_tumblr_share&igshid=u9tf8vibq5vm

I love Halloween more than any holiday...🎃 today started off rough but I pulled it together and broke down and rented a mobility scooter for tonight.. Best choice of the night I was able to trick or treat with my family.. and get to make memories and witness how awesome my daughter is to her brother.. Not to cool to hold his hand.#crohnsdisease #autistic #spoonie #motility #savethespoons #chronicillness #siblinggoals https://www.instagram.com/p/BpnnweElGEe/?utm_source=ig_tumblr_share&igshid=1su0imu6nc78l