678 Posts

meagkenzie Seems like I have been having more and more " bad days " and flares :( so over it ! But i promised myself and my love that I would keep calm and get through this all ! One day at a time! #psoriaticarthritis #rheumatoidarthritis #arthritis #fighter #methotrexate #enbrel #cimzia #humira #exhausted #spoonie #chronicillness #iamthefaceofarthritis 7h

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torijones84 Day 55-24.02.15- this bruise is from a blood test! Granted they tried more than once in that spot (and didn't just try in that spot, both of my wrists have marks on them too). Only took 4 people at 2 hospitals and most of the morning. Oh and it was a fasting one too! #neveragain 3d

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stephperryyy Seems like I have been having more and more " bad days " and flares :( so over it ! But i promised myself and my love that I would keep calm and get through this all ! One day at a time! #psoriaticarthritis #rheumatoidarthritis #arthritis #fighter #methotrexate #enbrel #cimzia #humira #exhausted #spoonie #chronicillness #iamthefaceofarthritis 3d

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courtneyromeo So excited to be a part of a genetic study on IBD - Crohn's and ulcerative Colitis!! I encourage anyone who struggles with this disease to go to 23andme.com to sign up!! Once I was qualified I received my kit within two weeks!! I've only been on my IBD journey since March 2014 (diagnosed with Crohn's August 2014) but it's been such a crazy journey this far and any way I can help with this terrible disease is a blessing!! I would love if my new IG Crohn's buddies would do this with me!!! 👭👬. Here is some info on the study..... "Today, there are very few medications for Inflammatory Bowel Disease (IBD), a chronic, inflammatory disease of the gastrointestinal tract (the two main diseases of IBD are Ulcerative colitis and Crohn's disease). Maintaining the quality of daily life can be a challenge. It is not known which medications will be effective on individuals and some IBD medications stop working over time. There is very little those diagnosed with IBD can do and often times, surgery becomes the only solution available.

We believe DNA may play a critical role in IBD treatment. Genetics has started playing a larger role in medicine over the past few years. And genetics could provide insight as to why some people are more likely to get IBD and why people respond differently to treatment options and drugs." #crohns #crohnies #crohnsdisease #23andme #ulcerativecolitis #ibd #invisibledisease #courtneyscrohns #humira #cimzia #prednisone #bentyl #brave #biologics
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  •   tabithasparkles I did mine about 6 months ago. I also found possible relatives through 23andme. :) 3d
  •   peterhannay @courtneyromeo you are so amazing to do this. Have checked and the study is not available in the UK yet..but guarantee that as soon as it's here.. I'm in !! We just have to do all we can to find a cure. It's 2am here now, just taken a second zopliclone to try and get my insomnia under control....strain starting to show 3d
  •   dstuart1012 I'm in, I'll sign up tomorrow! 3d

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theperksofbeingamixedgirl Relief from my knees, ankles & elbows. I used to think not was a myth that old people can feel weather changes in their joints but sadly I know now that I have Juvenile Rheumatoid Arthritis, it's true! I can be in tremendous pain and it will literally come out of nowhere and hours later it will rain or we'll get dramatic weather changes. I asked my Rheumatologist when I was 14 why I feel so much pain with weather changes and he said it's the change in barometric air pressure on the body. Kinda like the force of the surrounding atmosphere pressing hard on you. I'm so ready for this weather to stop going from hot to cold and dry to wet but I cringe knowing Spring is coming Hopefully these meds will help my joint pain, stomach spasms, nausea and SHINGLES! Counting down the days till I get my Cimzia shot on Friday. Calling in my B-12 tonight so I can have it tomorrow. Also need to call Home Health tomorrow morning so I can get supplies delivered the same day. Those who have a GJ tube or even a G tube, where do you drain your tube? I don't mind draining them in cups but when I'm very sick at night and fall asleep with my tube open and the cup in hand, it's a mess! I know someone said not to use a Farrell bag? What kind of bag do y'all use so I can ask HH for some? Like what should I ask for? Thank you in advance. My heating pad is doing a good job at easing cramps and gatorade is in my feed bag to hydrate. And I know someone holier than thou will ask: No, I hate pedialyte so much. I've had GI issues my whole life. I lived off Pedialyte. Even looking at it makes me want to vomit Hope everyone is hanging in there. Specifically praying tonight for everyone on my mind and saying a general prayer now for all spoonies struggling
Ask.fm•link in bio•
Tumblr•Zealizabeth• Private message me your IG username on Tumblr so I can follow you back ️ Trying to follow more "blogs" on there so if you think I'll like one, message me ️ & if you want me to follow you but don't want anyone to know your IG & #Tumblr are connected just say so
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  •   theperksofbeingamixedgirl Okay! Because ppl have mentioned catheter bags and I didn't know if I should just say "send catheter bags" or what Does it stay on? Will it fall off easily? @hockeyandhealing 3d
  •   hayley_burkhead Keep going!!! 3d
  •   hockeyandhealing no they'll stay on pretty tightly I use to have to pull pretty hard to get them off. I sleep with drain bags on almost nightly. 3d
  •   hisjoy4ever This is really good information to know guys! Because I just usually drain it every time I get up to "go" at night since I get up pretty regularly due to my gut. 3d
  •   millyjoy My dad rigs a bag for me. The thing is as you know you have to replace the lost fluids and elytes you have drained, so if you vent all day by using a bag its a lot more to replenish. I'll send you a photo of how we do it less really handy 3d
  •   theperksofbeingamixedgirl I'm not venting. Just draining my G part. NOT the J part where the actual nutrition goes @millyjoy 3d
  •   princessjordannnn When I drain my G, I put a grocery type bag and a rubber band. I usually use a dark colored bag so I don't have to look at it lol 3d
  •   millyjoy @theperksofbeingamixedgirl I'm sorry, that's what I meant, I call draining my G venting usually. 3d

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theperksofbeingamixedgirl Picture from yesterday ️ I'm so self confident about my tummy but sometimes I cringe about the tube. Not the tube its self just the part where it almost looks like my skin is sucking in, but just around the tube. Battle scars though, right? Last night I was so sick. I was throwing up & draining my tube simultaneously, I woke up in a puddle of vomit from my tube. I guess I was so restless I forgot to close it. I just washed off and threw my bedding in the washer machine. I used to get so upset about stuff like this happening but it's just apart of life. My stomach is still stirring. I think I have to pick up my brother from school today so hopefully my pain meds will help. Or at least constipated me so a 15-20 minute drive doesn't turn into a 45 minute one. Last night when I was sick I told myself in the morning I'd watch House all day. At 14 my parents bought me every season of House. House & Mystery Diagnosis are the only medical shows I love. The rest are unrealistic. So, today I've done just that. I aspire to be everything House is minus the Vicodin addiction. He's one of few fictional character I can relate to. Sarcastic, smart, & conqueror of dry humor. Oh, by the way. house is even funnier when you're on pain meds
My random Tumblr: Zealizabeth. Send me a message ON tumblr saying your IG username so I can follow you back
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  •   emilykatee196 @theperksofbeingamixedgirl have you tried watching greys anatomy? That's realistic :) it's a great show! That's my go to hahaha 1w
  •   theperksofbeingamixedgirl I hate it. Very unrealistic. I've watched three seasons and couldn't do it anymore. It's more focused on the doctors personal lives. @emilykatee196 1w
  •   emilykatee196 @theperksofbeingamixedgirl aw that's a shame! but you're right about the personal lives! 1w
  •   marieke75rn Agree with you on Grey's. Not realistic at all. House is borderline but I love it and miss it!! As a nurse I felt ER was the more realistic one as it focuses on both doctors and nurses and a crazy busy inner city hospital. Though they all have weird drama bits that are kind of far fetched but that's what makes them good tv! I like Mystery Diagnosis and Real Life in the ER too. 1w
  •   momotastic14 House is life. I finally finished it a few months ago and i loved it and i miss it 6d
  •   niecie234 U should watch greys anatomy @theperksofbeingamixedgirl 14h
  •   theperksofbeingamixedgirl I hate it. Very unrealistic and focus's very little on the actual medical world but thx @niecie234 14h
  •   niecie234 Oh lol you sound like my momma and sister btw your really pretty I love following u on Instagram stay strong and never give up on life god gives the toughest task to his strongest soldiers @theperksofbeingamixedgirl 14h

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courtneyromeo Cimzia Day One. Praying this brings me to remission!! #courtneyscrohns #crohns #crohnsdisease #cimzia #brave #ihateneedles They did say it could be months till it takes effect. 😕 If anyone reads this I'm curious about your experience with it!! 1w
  •   tandettc It took me over 3 months and lots of prednisone before it worked for me :( but I'm praying it is totally different for you. 1w
  •   courtneyromeo @tandettc oh wow. The humira worked immediately for me so I hope this may work sooner. So are you currently on this? How do you like it? I'm on 40mg of prednisone too but it doesn't seem to be doing anything for me. I just want to feel normal again! 1w
  •   tandettc Yes I'm currently on it and it does seem to be working now. Humira and remicade both worked immediately for me as well. This was the only injectable that didn't work right away. The good news is, I feel fine now :). I really really hope it works faster for you because I know how miserable it is to just want to feel like a normal person! 1w
  •   courtneyromeo Do you inject yourself? Any side effects you've noticed? @tandettc 1w
  •   tandettc Yup, I inject myself and no I haven't had any side effects. Which is a miracle because I always react badly to medicine. Really I like the medicine, I just wish it had worked much faster! 1w
  •   peterhannay Fingers crossed for you xx 1w
  •   courtneyromeo Thank you Peter! @peterhannay 1w

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chronically_gorgeous I just got my cimiza shot I have been on it for about two years... I have to get two of them every two weeks but I have found ways to make it a little easier... So if u have to give yourself painful injections Hear are some helpful tips....The first thing that I have used in the pasted was ice... Second I used lidocaine cream... Third I use what is called a buzzy and what it is, a vibrator that has an ice pack on it... This works the best because it Nelms the area where the shot goes and helps the medicine to spread out so it doesn't stay in one place... If anyone does anything different I would love to hear about it!! I'm always looking for something new!!! Hope everyone's day went great!!! #shot #cimzia #crohns #pain #tips #strong 1w

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srvivr2001 This is how I spent my night after work...planning new battle strategy since were almost to the end of our current plan. #FML #RAdiaries #autoimmune #methotrexate #leflunomide #mycophenolate #azathioprine #cyclosporine #rituxan #actemra #orencia #enbrel #humira #remicade #cimzia #simponi #xeljanz 2w

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  •   amiramushtaq I know exactly how that feels ️ hope u feel better soon 2w
  •   delaine54 Those suck! Mine are called snausages! When they swell that seems to be the only time I bang them on something. So painful. Hope they get better soon! 2w
  •   forms3simpler Nice one! 2w
  •   mrs_stephanie_f I know how you feel! Warm water helps... 2w

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Normal stephanie perry
stephperryyy Omg i could cry right now ! Haven't had any #arthritis meds in over 3 weeks.. so today I woke up to a major flare ! :( :( can i just catch a break already !! #rheumatoidarthritis #flare #somuchpain #psoriaticarthritis #spoonie #methotrexate #humira #enbrel #cimzia #thinkilllayinbedallday #mybodyhatesme #fighter 2w

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kosmokatze01 Ich war mal wieder in der Rheumaklinik. 10 Tage. Neue Medikamente. 16 Spritzen. #rheuma #rheumaklinik #rheumatoidarthritis #psoriasisartrithitis #cimzia 2w

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theperksofbeingamixedgirl All meds are in my tummy! Last night I went to sleep HARD and fast! When I woke up at 6:45 to give my mom my car key(because my car was blocking hers oops)I was like "Wait are you taking Blake to school?!?! It's already almost 7 AM?!?!" My Klonopin was not playing any games last night lol. Thanks for all the support and to everyone asking how I'm feeling: overall I feel good. I have two problems that are causing constant pain. One of them is the rectal inflammation. I'm going to call my GI and order more hydrocortisone suppositories. They help GREAT! I carry them in my purse everywhere I go. It helps the inflammation calm down 'cause let me tell you: Tenesmus is the MOST aggravating thing about Crohn's! The other issue I'm having trouble with is my FEEDING TUBE The stoma hurts so bad. I know I have granulation tissue and it needs to be burned but about two inches from my stoma I'm having pain. Does anyone with a GJ tube have pain about two inches out from the stoma hole its self? I think the balloon is just too tight. My tube is also leaking bile so I'm wearing a cushiony, spongey thin guaze because that bile will literally burn holes in your skin I just hope I feel good because tomorrow afternoon I plan on going to Mardi Gras. I'll try to take pictures and videos ️ If you see me at Mardi Gras(I know it's a low chance but I always run into people I know)tap me on the shoulders or scream my name depending where you are lol. If you're going to be in any parades let me know! Maybe my Cimzia shot will kick in & give me relief from Crohn's & JRA. Just asking for prayers because my #stoma is causing a lot of pain. Maybe my meds will help? I'll be up(unless my meds hit me like a train like last night ). Ask.fm •link in bio• 2w
  •   theperksofbeingamixedgirl I've heard that too and it doesn't work(for me). @jennylomsdal 2w
  •   jennylomsdal That sucks, well hope your tube issues decide to calm down you got enough on your plate right now. 2w
  •   hisjoy4ever @theperksofbeingamixedgirl Depending on how long you have had this particular tube in for, the pain "could" be an indication that the tube needs to be swapped out for a new one. I find that especially when the balloon behind is giving me issues, that it's many times because it's wearing out and needs to be changed...but that's just "my" experience with my tubes down through the years. My team recommends a tube swap out every 3-6 months in order to maximize my health and the tube function as well as to lessen tube related problems and pain. Anyway, I love you and hope you feel better soon! And have a blast at Mardi Gras!!! 2w
  •   theperksofbeingamixedgirl It has been almost 3 months. Still too early for a change. I had it checked nod too long ago and the balloon was perfect. @hisjoy4ever 2w
  •   anirayne33 Love you, bb! 2w
  •   prettylittlesickdancergirl Glad that you are starting to feel better and I hope that things will continue to get better for you!! I have a G-tube and I have a lot of pain a number of inches away from the actual hole in my stomach, and I have a lot of granulation tissue as well. My feeding tube usually gets like this when I have an infection, which I do now. I hope your symptoms get better soon, I know it's super painful. And I hope you're able to have a great time at Mardi Gras!! 2w
  •   vongraves Rectal inflammation feels like he'll probably feels. My rectum stays inflamed. It is so bad I can't sit sometimes. It sucks bc they were supposed to remove it in October with my colon, but I have a rectal-vaginal fistula. So now I have to have another surgery soon. 2w
  •   spoonselfie_crohnsandcolitis Crohns and colitis awareness!.. Take a selfie in a spoon and post it on Instagram and and tag me @spoonselfie_crohnsandcolitis and #spoonselfieforibd !.. Let's get as much awareness out there as possible more people need to know about IBD!.. Please nominate 5 of your friends!.. 2w

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rheumy_rheumy It's that time of week again .... Shots ! Shots ! Shots ! #methotrexate #cimzia #rheumatoidarthritis #ra 2w

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theperksofbeingamixedgirl Been on these shots since 2 weeks before my 16th birthday. I remember it well because I was begging my doctor to let me out of the hospital to go to Camp Oasis(for kids with #CrohnsDisease & #UlcerativeColitis). I got out 7 days before my birthday. The on call GI doctor said "I'll let you out if you can find another biologic in 2 weeks." & I did just that! My Rheumatologist called the GI and he said he has a new biologic that has been approved for Juvenile Rheumatoid Arthritis & Crohn's. So, they discharged me and we went straight to my Rheumatologist. He met me in the waiting room with two shots of Cimzia and he took me to a room and gave me two shots in my thighs 😎 #TakeThatOnCallDoctor 😈 #IBDSelfie Now, to rest. I did all of Sonicá's chores before I did my shot so I can be officially done for the day & not have to worry about other chores 2w
  •   theperksofbeingamixedgirl It's okay! I'm taking my brother out to eat tonight and I'm gonna grab his spoon @spoonselfie_crohnsandcolitis 2w
  •   cuckoo_for_crohnies @theperksofbeingamixedgirl I grew up going to a camp called Camp Roger since I was little all the way up to middle school. And I can honestly say that if I was diagnosed with Crohn's disease while I was going to that camp it would absolutely suck. The one thing that I loved about camp oasis was the fact that everyone was just like me and I didn't feel alone. I don't have anybody my age around me that has Crohn's. I totally get what you mean about it being cliquish. I was in a cabin with these four girls who had been going to camp oasis for many years. They didn't seem like they gave two craps about making new friends. By the end of it all I thought we had become friends and apparently I was wrong. I tried to Facebook friend them when I got back from camp and they all deleted my request. But you could also tell by looking at them that they were all so pretty and always looked all done up mean. I think it's sad that the kids who have been there the longest weren't open and welcoming enough to us new kids who went there. I ended up becoming really good friends with this other new girl and we still talk on Facebook all the time. I was only able to go once because by the time I was diagnosed with Crohn's and found out about the camp I was only able to go one time. But that one time I went my mom was talking to some people who worked there and they said they were talking about making it so people who have been there before can't go again. So they can get new people in. So the new people can experience what it's like. How many times did you go to camp oasis? 2w
  •   theperksofbeingamixedgirl Once was enough for me! Camp MASH is for kids with Juvenile Rheumatoid Arthritis and I know 4 people who also have Crohn's/UC and go to Camp MASH(make.arthritis.stop.hurting$ @cuckoo_for_crohnies 2w
  •   cuckoo_for_crohnies @theperksofbeingamixedgirl That's cool my Crohn's causes arthritic symptoms. It causes really bad pain in my feet to the point where I can't stand sit or walk. I've never heard of it before but it sounds really cool. But now I'm too old to go to any camps lol 2w
  •   theperksofbeingamixedgirl So am I. I'll be a camp counselor. It's by the arthritis foundation@. They accept kids with "arthritis like symptoms". Juvenile Rheumatoid arthritis is WAY MORE than just pain. These kids are only 8 and have already had joints replaced. @cuckoo_for_crohnies 2w
  •   vongraves I was on Cimzia for a while, but it caused my kidneys to start shutting down. My nephrologist was like, "Whoa turbo. No more Cimzia for you!" & I was sad bc it actually helped some. 2w
  •   theperksofbeingamixedgirl Yeah it's the last option as far as biologics that I have. Only one is Entyvio that I haven't been on & I haven't been on that because it's not approved for JRA @vongraves 2w
  •   vongraves Entyvio probably won't get approved for RA. It's a gut specific drug. It directly inhibits an alpha chain that is specifically in the intestines. The science behind Entyvio is AWESOME for Crohn's. It's really a "game changer" drug. It was only fda approved this past summer 2w

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jaciegarcia22 I don't think this is a good thing?! #cimzia #injectionsite #newmeds #effthisdisease #swelling #rash 2w

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paiviandersson I november var jag markant bättre än i juli men nu, nu jävlar snackar vi. Vilken effekt en medicin kan ha, bra att komma ihåg var man varit de dagar man är trött på ryggsmärtan. #cimzia 2w

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tonitonytone1 If I can do this - workout and eat clean at home with #pain #autoimmunedisease #lung disease #joint inflammation #nodules #lupus #RA #MS #thyroid disease #asthma #enbrel #humira #methotrexate #cimzia than so can many others! #joinme in eating clean and working out as much as you can! #feelgood #buildmuscle #fightdisease I will #help you! Your own #pace, but #fight ! 2w

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