List of the most popular hashtags for theme #JUVENILERHEUMATOIDARTHRITIS

Someone’s feeling better ...This was after some anxiety medicine prior to the procedure. Doctor just came in though and said they extracted A LOT of fluid from her left knee and she should be feeling much better!! #jra #juvenilerheumatoidarthritis

PREEEEEACCCCH @annieelainey

CLC MEMBER FEATURE: Hello! I’m Courtney, I’m 23 years old, and I’m founder of the I Had a Good Day Project. The project aims to help myself and others realize the good in every moment despite the challenges of it in the midst of disease and day to day life challenges. What may seem like a bad moment, like being stuck in the hospital on your birthday, really is full of blessings and all things good. • I’m blessed to have an amazing team of doctors. I’m blessed that this doesn’t affect my heart or brain. I’m blessed to have such a loving and supportive family. I’m blessed to have health insurance and the resources such as Johns Hopkins Hospital and all of my medical supplies. • I was born with Juvenile Rheumatoid Arthritis. Since then I have battled joint pain, fatigue, stiffness, damage, and have had countless surgeries, infusions, and injections. I also have an extremely rare disease causing paralysis and delays in my GI tract and bladder. I rely on TPN which is nutrition through a central vein for my calories and fluids. I have a feeding tube for medications and flushes. I also rely on a urinary catheter as I cannot void on my own. I live in hospitals and have maxed at 54 medications. Complications from this disease caused me to developer Superior Mesenteric Artery Syndrome and GERD as well as other comorbidities. • This is my reality but this is not who I am. I am a daughter. I am a sister. I am a cousin. I am an aspiring author. I am Courtney and today, I had a good day. You can follow my journey at Ihagd.com or on instagram at @I_Had_a_good_day_project #chronicloveclub

HOW DO YOU DESCRIBE EDS? It happens to all of us. Maybe someone saw your medical ID or noticed that you always have to sit out in PE. ••• “What do you have?” “What’s that one disease?” I certainly don’t mind people asking me, because it allows me a few seconds to teach someone about what I’m going through, but it can also be hard to know what to say to that question. EDS encompasses so much! ••• I have several different explanations I use. The one that I say most often, is “I have a connective tissue disease that affects my joints, heart, organs, and GI system.” When I’m talking to someone younger or who doesn’t have much medical knowledge, sometimes I’ll say something along the lines of “There are structures all over your body that hold everything in place. On a normal person, those structures are like rubber bands that can stretch but return to their proper form. In my body, they’re like chewed up bubblegum. It stretches and never returns to normal.” ••• What’s your two minute explanation of EDS? ••• photo via google

doctors appointments, doctors appointments, &doctors appointments. ••• i’m sure you all can relate. it’s easy to get caught it up in the doctor grind. it’s easy for your whole life to become looking for answers. ••• but what happens if there aren’t answers? what if there isn’t a why? ••• there’s not an exact reason why i had a TIA. yes, i have vEDS, but still, i should have had a TIA. ••• the hardest thing for me has been to let go of the “what” and the “why”. to embrace the here and the now!

After both my Paediatric Rheumy and Adult Rheumy telling me my Arthritis is “just nerve pain”, I had a bone scan ordered by my Immunologist. I lit up like a Christmas tree! It sounds strange that I might be excited about this, but that’s because they were palming me off to pain psychs when there is active Arthritis still. I have active Arthritis in my wrists, ankles, knees, elbows, and hips Such a relief to know that it’s something treatable and what I thought all along. This really does go to show, you know your own body so fight for it Now to wait for my immunologists confirmation and work towards an effective treatment plan! • • • #chronicillness #chronicallyill #jia #juvenilearthritis #juvenileidiopathicarthritis #juvenilerheumatoidarthritis #jra #ja #sick #sickkids #hospital #juvenilearthritisawareness #arthritis #arthritissucks #meds #medication #lifewithspoons #needmorespoons #spoonie #spoonies #pain #jointpain #illness #invisibleillness #disease #autoimmune #autoimmunedisease #kidsgetarthritistoo #gastroparesis

Today, something I never though could happen... happened! I was officially hired as a Physical Therapy Tech! The hurdles for my journey becoming a PT are big: making it through a doctorate program, being able to stand for extended periods of time, and lifting/transferring patients made me think about giving up. But, through my own physical therapy, I’ve regained some of my ability to write, I can stand for over thirty minutes, and have successfully transferred my first “practice patient!” (shout out to my brother for being our test dummy) I’m SO excited for the things that are coming! Don’t let anyone tell you that you can’t achieve your goals! #sickpeopledoingthings (image description in comments)

let’s talk about privilege in healthcare ••• the quality of care that rare disease patients receive varies immensely. a big factor in this problem are circumstances you can’t always control - insurance, location, ability to pay out of pocket, and family support. ••• you are privileged if -you live within driving distance of capable specialists -you have private healthcare -you can afford alternative medicines -you have access to trial and experimental medications -you are on your parents policy and so much more. ••• this post isn’t meant to shame people who do have the ability to receive top care. it’s meant to ask as a reminder to think and acknowledge that not everyone has the same hand dealt to them as you do.

repost from @julianakilmurray