Never Give Up

Crohns Warrior www.crohnslifehope.wordpress.com

[crohnswarrior]

We were missing green beans....really!! My family would kill me if there was no green bean casserole.. Thank goodness Dollar General was open and had 6 cans. . Happy Thanksgiving 💜💜 .... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate #ibdsuperheroes https://www.instagram.com/p/CID8-lUjsQn/?igshid=gifrqz6df2pu

[crohnswarrior]

Missing my crew today more than ever... Pandemic fatigue is real and many of us are probably really feeling it today... Just remember having an empty seat for 1 holiday or even 2 is better than the seat forever being empty.. Use your phones or whatever you have to send your Thanksgiving messages and keep everyone safe... Much love sent to all today, I know how blessed I am to have this group of people who have helped me more than any of you realize! Sending those prayers and those encourging words have pulled me through some dark days.. and for that I am so greatful!! Happy Turkey day everyone.... #ibdsuperheroes #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CID1LPKjyhY/?igshid=19vulx9p85zih

[crohnswarrior]

Captin Kitty took over Mack's (my English Mastiff) bed lol.... The cats always take his things over poor puppy.... .... #catsofinstagram #spoonie #dogmom https://www.instagram.com/p/CH_tofzjfW-/?igshid=ovfl8edyof5q

[crohnswarrior]

Find something goid to focus on today.... dont let whatever you are struggling with get you.... I have had bad news after bad news lately with my health but today I will not let that control me. Today I'm greatful I have my family with me, my 1st grandbaby is in the way, and I am blessed in so many ways so that is where my focus lies.... Remember #itsalltemporary and #wegotthis ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate #ibdsuperheroes https://www.instagram.com/p/CHpuIlxDWie/?igshid=29fny4es1gzz

[crohnswarrior]

Doubt I will be sleeping anytime before Wednesday. Finding out my new line is already infected was enough to make me worry but then telling me the CT shows "something" and I will need to wait till Wednesday to talk to Dr Rex has my mind racing. All they could say is he has some ideas and I will most most likely have scope or MRI and surgery again soon...😔 Why can't my body just wake up and realize I need nutrients... I need to be able to eat again... I need to get over these infections, and I need to stay out of hospitals where Corona is and my risk is greatly increased!!! We are running out of options but yet my body still says F@#% You...😔 .... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate #ibdsuperheroes https://www.instagram.com/p/CHjz3fSDR6O/?igshid=10rz21r5aflp1

[crohnswarrior]

So cultures are positive again with fungal infection... back on another iv antibiotic and my CT shows possible blockage so my Crohns has decided to flare it seems.... So I talk to GI Wednesday, probably scheduling scope or MRI and then possible surgery on top if dealing with infections.... some day I gotta catch a break, right?? .... .... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHitG8MjTEs/?igshid=boo455z64odl

[crohnswarrior]

Sitting in the waiting room.... I hate that this is the one provider who HAS to physically see me and I can not just do a virtual visit 😔 At least they always set me right after lunch so I am alone in the waiting room and usually in the back before any other patients arrive. Hopefully it is a quick "no new news" visit but that has not been my luck lately. I should get culture results and CT results today.... 🙏💪💜 .... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate (at Good Samaritan) https://www.instagram.com/p/CHik5X0DbKi/?igshid=fuqmtwvm6yq

[crohnswarrior]

My mantra today...lol .... ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHiObOPDW1E/?igshid=zmd2h5a2mysx

[crohnswarrior]

I get registered and sit down and 2 people here are coughing thier heads off..... i know I need these tests but it is so nerve wracking sitting around people who are waiting on chest xrays and can't stop coughing.. couldn't they split up patients and have the ones with respiratory symptoms be separated. Ugh!! It really sucks to be such a high risk patient in these uncertain times.... ..... ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate (at Good Samaritan) https://www.instagram.com/p/CHf38AMDv-6/?igshid=1odmb169n7jrz

[crohnswarrior]

🙄😔💜💜 ... ... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHcNW_cjksc/?igshid=ayxj28sehb0g

[crohnswarrior]

Yes my body is rejecting me lol... ..... ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHbxx8cDCVz/?igshid=x9qi7zpssgb1

[crohnswarrior]

So they came and pulled new cultures.... 🤞🤞🤞 Please let it come back negative... I have CT this week too, hopefully we can find where this outrageous white count is coming from.... 💪💪💪💜💜💜 ...... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHbJ01yDBem/?igshid=1clup74zk8f5m

[crohnswarrior]

No two people are the same and even if you share a diagnosis, your experience with said illness can differ greatly. I too often am told of so and so that someone knows who has Crohns but seem fine, or weigh a normal weight, or still works and on and on... I don't need anyone's judgement on how my disease compares to the next... I happen to have a very aggressive form of Crohns and many comorbidities, although you or someone you know has Crohns too does not mean we will be the same "sick"... And just because they might've responded well to a specific treatment does not mean I will. We are all just doing our best to carry in with these chronic conditions the best we can. Don't judge, just try to understand and have some compassion! ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate #ibdsuperheroes https://www.instagram.com/p/CHUSvtLjydb/?igshid=17wm98ck1m9wu

[crohnswarrior]

Baby shopping with @hannah_blakely23 today was fun.... cant wait to meet you baby Catiller ..... #grandma #spoonie #blakelybunch #crohnies https://www.instagram.com/p/CHT3ZwSjErR/?igshid=1f67kudnrw89w

[crohnswarrior]

Can we just call it.... He won!!!! .... ... #votejoe #election2020 #ridinwithbiden .... #spoonie #crohnies #autoimmunedisease #wearethevulnerable #socialdistancing #juststayhome #pandemic2020 #quarentine2020 https://www.instagram.com/p/CHSwqdJDmLV/?igshid=9icwsqx8gz16

[crohnswarrior]

So after my PCP threatened my TPN supplier with a call to the dept of insurance I get my TPN delivered tonight, spoonie win! But........ When my infection kicked off last week I had a 18000 white count, went to 8000 when I started treatment but as of yesterday it is back to 30000+..... You can keep trying dear crohns but do not think for one second I am ready to throw in the towel. Its not over!!! ..... ..... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHQ3ronjGn6/?igshid=r7yojwku13xt

[crohnswarrior]

So sick of ending conversations with medical professionals and suppliers with them saying sorry!!! Dont be sorry....do better. This is my life they are playing with... 🙄😔 ..... ...... #spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #port #ostomy #stoma #colostomy #highriskcovid19 #pancreatitis #mentalhealthawareness #EPI #patientadvocate https://www.instagram.com/p/CHOmOFeDIub/?igshid=1dn8ub2kjbii5