Ali
USA

Hello! My name is Ali and I have Rheumatoid Arthritis. I was diagnosed with Juvenile Idiopathic Arthritis at the age of 15. I had been having some knee pain that day and when I got out of the pool after water polo practice I noticed my right knee was three times its size. Naturally we all thought it was an injury but after numerous amounts of testing, blood work, knee drainings and arthroscopic knee surgery it was determined I had Rheumatoid Arthritis. 

 

I’m now 27 so I have been living with RA for the past 12 years. In that time I’ve had 2 arthroscopic knee surgeries, an appendectomy due to chronic appendicitis, 13 knee drainings, 16 cortisone shots, 2 colonoscopies, 2 endoscopies, multiple CT scans, X-rays / MRI’s, ER visits and a ton of other tests done all due to my condition. 

 

I was actually in remission for about six years after my first surgery with no medication! Which is very rare. At this point I thought maybe I didn’t have arthritis and the diagnosis was incorrect. Unfortunately during Christmas time in 2015 all my symptoms came back and it ended up being the worst time in my life thus far. Within the span of 7 weeks I had my knee drained 7 times, saw 10 different doctors in four different states & had every test you could think of done. During this period in my life I relied on crutches, canes and wheelchairs to get around. I also had to take time off from my job since I couldn’t walk and needed to travel for testing. Luckily it was the holiday so we had a break anyway. After those seven weeks of hell, I ended up starting 25 mg of methotrexate since the doctors refused to drain my knee again. Even I was that person who tried the natural route first! I experienced very rough hangovers (not knowing what the hangover meant at that time) and I had to take even more time off from work. 

 

During this hellacious time of my life I didn’t have a community of spoonies to connect with. I didn’t know a single person with RA and I was the first in my family and friends to have an autoimmune disease this aggressive. I felt very alone and was starting to get depressed. Why was this happening to me? What are these meds they are giving me? Why do I feel like I’m hungover all the time. Why are my joints so messed up and lastly why am I the only young person with this disease? I even joined an online support group which ended up being a bunch of women in their 70’s & 80’s who were extremely negative and rude. One telling me I’ll die due to the meds my doctor put me on. I never felt so alone as I did during that time. 

 

I didn’t connect with others in the autoimmune disease community until I came out of remission the second time and was told I’d have to go back on the low dose of chemo (methotrexate). I was so overwhelmed and longing to connect with someone who really understood how I was feeling. I finally made a social media account geared solely to having an autoimmune disease @anotherdaywithra . Suddenly I was flooded with new spoonie friends who were going through the same thing I was and who were even on the same medications as me! I can’t express how good it felt to vent to someone who knew EXACTLY how I felt and knew the struggles of joint pain and fatigue. It’s been two years since I made that account and because of it my outlook on having this disease has completely changed. I am more positive and fit due to the spoonies I’ve connected with. 

 

My goal now is to prove to other spoonies that we can fight this disease and kick it’s ass! I’m constantly dancing my way through this painful life to prove to my disease that I won’t let it win. Yes we will have our bad days, but the more we stand up to it and prove that no matter how much pain it causes us, we will never stop fighting and let it win! I’m now a fitness junkie and I love to move daily. I’m very passionate about dancing, working out & making people laugh with my ridiculous videos online. Someday I hope to teach group dance classes that welcomes everyone including people with limitations due to their illness. I’ve connected with so many lovely people because of this disease and I hope to connect with many more! 

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