5,022 Posts

theperksofbeingamixedgirl Snugglin' with my blanket ️I hate how Instagram only shows you a limited amount of notifications. Three people tagged me in a post while I was making blankets and I can't see who it is I know one of them wanted to do SFS but I don't want to do those right now because I feel like it gets on everyone's nerves. I mainly do them so I can spread awareness about those with chronic illnesses & those who support those with chronic illnesses ️ I'm watching 90 Day Fiancé since I've missed the last few episodes. I think Amy on this show is a absolutely beautiful soul & Danny was extremely blessed to find a great girl like her ️ Tomorrow night we're gonna be leaving. I think we're doing lunch or dinner with one of my mom's old coworker who now is a pastor at a church up here tomorrow.
My joints are getting really bad & my mouth & throat is so raw from these ulcers it hurts so bad. I have magic mouthwash and carafate at home so I'm going to drown my mouth/throat/esophagus with that when I get home. I hope everyone is having a great night tonight! I'm a little sleepy from the pain/nausea meds but I'm trying my best to kik everyone back Please pray for me; this Crohn's flare is so painful. My body is going haywire because I'm only days away for my treatment being due(Cimzia). Can't wait till Friday/Saturday so I can take it Ask.fm •link in bio•
Kik: curlycrohnie
52min

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hopecourageinspiration Right for a Friend, Not Right for Us
**
We each walk a unique path. What may be right for a friend may not be right for us. We have an individual calling, a unique journey.

We may not understand why what’s right for a friend isn’t right for us, but God guides us for a reason. He knows more about us than we could ever imagine. He infinitely knows the path He’s set us on.

God has different plans for each of us, but He doesn’t push or shove us down the path. Instead, He gently leads us, inviting us to follow. The more we allow Him to lead us, the more we’re able to hear Him in our daily lives.

Understand that any “no” is a doorway to a far greater “yes.” Your “yes” will look different from that of your friend and that’s exactly what God wants for your life, for you are uniquely loved and uniquely blessed.

Your path may look different than you imagined and that’s okay. Each day, God is leading you on a journey for which your meant. And He is with you. **
Did you like this Every Day Hope Message? Get your daily dose of inspiration, delivered right to your inbox - sign up at: http://everydayhopemsgs.com/subscribe/ and receive a free download of my eBook, Days of Hope: 72 Inspirational Messages Designed to Start Your Day Right!
47min

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Normal Arthritis Natl Research Fdn
curearthritis New inflammatory #arthritis therapy in progress part two - Interview with Dr Nigrovic is now up on the #blog! CureArthritis.org/blog
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#CureArthritis #chronicillness #rheum #spoonie #spooniesunite #lupus #autoimmune #AnkylosingSpondylitis
3h

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ra_glitz Hallelujah it's finally here! Never thought I'd be so happy to receive medicine LOL!! My nurse training is this Friday... wish me luck. #thejourneybegins #ra #rheum #rheumatoid #arthritis #rheumatiodarthritis #rawarrior #chronicpain #chronicdisease #chronicillness #enbrel #amgen #hopethisworks #feelingpositive 4h

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theperksofbeingamixedgirl Thank you Children's hospital for coming through with the formula ️ When we came back to the Ronald McDonald House they gave us a bunch of goodies, just randomly! A 15$ iTunes gift card, name brand emi-jays, ear phones etc!!!! So blessed!!! In a few hours they will be doing the blanket making class! I'm going to make a blanket for Sonicá ️ Until then I'm going to rest up & take some medications because I feel so sick right now ️ Ask.fm •link in bio• 7h

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theperksofbeingamixedgirl Watching Criminal Minds & omg Matthew Gray Gubler is so hot He can get it I love this show so much it's ridiculous @hannah_kay_2014 got me hooked on it when we went to the beach after graduation You the real MVP Hannah
I've been flushing my tube like crazy because I do NOT want it clogged I wasn't able to take pain meds by mouth because I literally have ulcers coating my mouth and throat so I have to put it in my tube 😐 Hopefully my meds will kick in in a few minutes. They are so bad that whenever I spit it has blood ALL in it from them oozing blood. I haven't had such bad ulcers since before I got DX with Crohn's 5 years ago My Crohn's Disease is REALLY bad right now I'm bleeding after some of my bowel movements and my mouth is bleeding from the bad ulcers. Makes me ALMOST thankful I have a feeding tube & I can't eat because there is no way I could be able to eat with these horrific ulcers.
Also, is there ANY tubies in the Birmingham area?!?! I didn't bring enough formula because I didn't expect to be here this long after surgery recovering at the Ronald McDonald House. Or, do you know any GI offices that carry formula? I'll take any kind it won't kill me to take a formula I don't usually use. I'll send you some of my formula back when I get home. My GI office doesn't have extra formula on hand so we're scrambling to find some & obviously I can't go to the store & get it. The Ronald McDonald House is calling hospitals right now to see if they can "donate". I think they'll be able to find us some though but just in case please tell me other GI offices in the area. Dr. King is also searching his office for some. I'll be going home hopefully tomorrow night. I just hope they can find me some formula Ask.fm •link in bio•
Kik •curlycrohnie•
8h

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ambshuck Haven't done a @ToneItUp #TIUcheckin for a while so here goes. Got in a decent gym workout but really had to drag myself there. Luckily Shakeology & Jay-Z helped me through! #tiuteam @karenakatrina #beachbody #shakeology #toneitup #tiu #tiupittsburgh #fitness #ultimateyou #gymselfie 9h

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ambshuck Today's #arthritisashley #ultimateyou #rheuminder. Medical treatment is highly personal. Let us not place judgment on the personal choices of others. We are all in this together and need to applaud what works for each of us. We all have the same end goal: eventual remission and better health! We have all got to do what we can until there is a cure. #rheum #rheumatoidarthritis #lupus #spoonie #autoimmune #autoimmunelife #arthritis #SLE #mctd #sjogrens #chronicillness 13h
  •   caro_tiu So true the right combination is so individual 13h

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hellslilrebel Slipped on wet grassy down a hill earlier. Hurt my wrist and got covered in mud. I basically looked like this. Yup time for bed. #cat #selfie #howillook #flareup #rheum #rheumatoidarthritis #ra #kitty meow #scary #bathtime 1d

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hopecourageinspiration Don’t Get Burned Out
**
We weren’t created to do the same thing over and over again. Life’s zest dulls when we feel defeated by our own routine and circumstances.

We are meant to love variety. God created us to cherish new and different experiences. If we insist on doing the same thing repeatedly and systematically, we lose our joy. We get burned out.

Expect God to show something new and exciting to you this week - look for a fresh addition to your routine.

Keep your eyes up. Look for new ways of doing things. How can you rearrange your path to bring newness in?

With variety comes fresh eyes to your current situation. It’s a new way to uncover unexpected joy in routine circumstances. Embrace the positive change that variety brings.

And be constantly renewed in the spirit of your mind. -Ephesians 4:23 (AMP) **
Did you like this Every Day Hope Message? Get your daily dose of inspiration, delivered right to your inbox - sign up at: http://everydayhopemsgs.com/subscribe/ and receive a free download of my eBook, Days of Hope: 72 Inspirational Messages Designed to Start Your Day Right!
1d

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theperksofbeingamixedgirl Today I tried gingerale for the FIRST time ever. I think I had a swig before but can't remember but OMG why haven't tried this sooner?!?! It tastes SO GOOD! My stomach is still hurting bad & so is my throat so my mom bought me a gingerale to sip on because there was no sprite and it's SO GOOD! Literally better than sprite! I don't know why people think it tastes so gross I could drink this all day & I don't even like sugary drinks/sodas or basically anything that isn't coffee/water/juice but I loveee it Since my GJ tube is fixed I can finally put medications in through my tube! I try not to put medications in my tube if I think I can swallow it but since I had surgery today I had to. I just let water dissolve my pain & nausea meds with Benadryl. The best thing about having a GJ tube is the medicine goes straight to my intestine so it takes maybe 15 minutes MAX to kick in. Usually it only takes 5 minutes. I just use my tube for meds when I need instant relief FAST I'm still in a lot of pain & the nausea is SO bad but my medications are kicking in so I'm happy I'm just glad I can finally get the nutrition I need. With my paralyzed stomach I can't even digest my drinks sometimes. I have to just drain it out. I miss food so much I've had the Peptamin formula before back in the day when I did NG tube feedings and my stomach WASN'T paralyzed. I finally get to try Peptamin with my GJ tube now because when I switched formulas last week the morning after I started my tube flipped 😑 I'm happy though to get nutrition because nutrition=energy.

Thank you all for all your sweet comments. I'm going through them all right now. Y'all really are so sweet. Y'all are such a blessing. I'm glad I didn't delete my account last week when I got tons of haters. Not letting a few sour apples spoil the bunch Romans 12:19-20 Also, if you want to get in touch with me, please don't DM me. I never get notifications & it rarely goes through. Just text me/kik me/go on my ask.fm.

Ask.fm •link in bio•
Kik: curlycrohnie
1d
  •   bookluver226 Ginger ale is so good! I'm glad to hear that your surgery went well! 1d
  •   fashionlovebypam Ginger ale is really good! I drink it when I'm throwing up. It clears my mouth. we have been praying for you! & I'm so happy, you are feeling better! God is Good! 23h
  •   clarebear296 I love ginger ale! It comes round on the snack trolley in the hospital and it comes in a cute little can! 23h
  •   missluceyinthesky I love it too, so good when my CRPS or Mirgaines flare and I am nauseous. It has nothing on sprite! Good luck in hospital. #spooniehugs 23h
  •   slinkymcfearsin Glad yer feeling better 22h
  •   anirayne33 I love gingerale. There's also a ginger gum that's made for nausea. Some Rite Aid stores have it as regular stock, but the pharmacy can special order it. It's the best for mild nausea. 19h
  •   anirayne33 Just thought I'd share that. 19h
  •   gloriousfoodwithgloria Ahhh! 18h

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  •   journeyappstore3 Please check out our page and help us spread the word :) 18h

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theperksofbeingamixedgirl **Picture taken before surgery** Surgery went well & I got my tube fixed! They had to do it "differently " but I'll explain all that later. All that matters is my tubes fixed. Will update later about everything when nausea & pain subsides 1d
  •   sofia.lacayo YAY!!! So happy everything went well! Prayers coming your way for a speedy recovery. 1d
  •   anirayne33 Awesome to hear! 1d
  •   fiercestormxo Aw yay so glad your surgery went well and got your tube fixed! 1d
  •   young_pumba sending out love n prayers for u my fellow #crohnie 1d
  •   astoldbykali So glad it's fixed! 1d
  •   lovemuch73 So so happy to know all went well! Feel better sweetie sending prayers love blessings and lot's of hugs!! 1d
  •   kirstysrecovery Lovely! 24h
  •   tracy2884 Hope your feeling better x 8h

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ambshuck Just an #arthritisashley #ultimateyou #rheuminder for today. Do you when it comes to YOUR #life and YOUR #health! It is YOUR #journey, after all! #hatersgonnahate #differentisbeautiful #lupus #rheum 1d

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meeradollart #meds that keep me from being completely #crippled #deformed #hands #legs #feet #DISABLED #RHEUM #RHEUMATOIDARTHRITIS #rasucks has spread to my entire left #leg since friday (3 days) #pain #joint #indomethacin #prednisone #methotrexate #lifesaving 2d
  •   meeradollart #nojoke People get mad at me for being reclusive but I am just trying to stay out of a wheelchair, keep a job and not end up #homeless like the average disabled person in this fine cuntry of ours! #icantrelatetoyourpettyproblems #youdontknowme #compassion goes a long way 2d
  •   meeradollart It runs in my #family my #mom has rheum and did become homeless <\3 2d
  •   jenniek41908 This is my drug arsenal too. Plaquenil, prednisone, methotrexate 2d
  •   brooklynpapers Nice! 2d
  •   privy_to_paradise Some people who appear to be perfectly healthy are fighting horrifically painful, unseen battles. Like me. It hurts that people don't try to understand what they can't always see or feel themselves. So many friends of mine are struggling balancing work with their physical ailments. I'd just like to throw out there: #yoga and #exercise to help strengthen those weakened structures instead of stressing the joints supporting them. This will help to keep you flexible and strong. Sorry for your struggle, girl. 2d
  •   meeradollart @privy_to_paradise Thanks for sharing and when I heal I totally need to get back to yoga! 59min

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