Aaron Blocker

Hi Everyone. I am going to be deactivating this account. I don’t use this platform much anymore and don’t plan on using it moving forward. You can find me on other platforms as Instagram & TikTok @AaronBlocker_ Bluesky @AaronBlocker It’s been real my friends!

Here in Washington DC attending the NORD Breakthrough Summit. Excited to hear from the FDA/NIH and other patients this week. #NORDSummit2024 #raredisease

@drclairetaylor I use one! For certain coffee I make like a pour over. I use it to make my sons hot chocolate since it’s easy to control the temp and then I don’t drink a lot of hot tea but when I do I also use my kettle. However in times past before a kettle I’d just heat the water on stove..

Yesterday I had my 27th surgery related to my rare genetic disease. Been through this many times but it’s never any easier. Surgery went well. My arm is very sore. #chronicillness #hypophosphatasia #raredisease

Last week the FDA approved Johnson & Johnson’s TREMFYA for Ulcerative Colitis! The first dual action IL 23 Inhibitor for UC! The data looks really good and this is exciting for UC patients to have another great treatment option. #IBD #UC #Tremfya jnj.com/media-center/p…

How’s everyone doing? Not on here much these days.

@DrunkAubie These refs are something else this game good lord

OH BUT THAT YOU CALL. BE SO FOR REAL

Dealing with a surgical site infection in the incision from my most recent surgery. This is the 3rd time I’ve had one of these. Hoping oral antibiotics clear it up so I don’t need anymore surgery or PICC line like the last two times.

Also, I hate the post-surgery stomach issues. All the meds, pain meds, stress from surgery really gets the Crohn’s pissed off. #IBD #Crohns #surgery

Day 5 post op. Pretty tough day. My leg looks brutal, and just a lot of pain. As to be expected at this point. Post-op appointment yesterday was good, had a skin hematoma that needed to be drained which sucked. I’ll be in an immobilizer brace another week, the 12-13 stitches on the back of my leg have to be in for 2 more weeks. #hypophosphatasia #raredisease #surgery

There’s a lot the chronic illness community can learn from @sunisalee_ and @Simone_Biles as deal with mental and physical health problems yet faced them head on to achieve some amazing things at this Olympics. It’s about getting back up and taking care of yourself first.

Maybe it’s because of my cardiac arrest, but I don’t understand why patients get upset when I say their symptoms are due to aging. 95% of what I diagnose is because we get old. I always bring it up as delicately as possible, but like do you know how lucky you are? I see patients in their 80s and think, “man I hope I get there one day.” So many things in this world can kill you. You’ve beaten the odds. Honestly, congratulations, you’re old.

@aboutIBD Here you go! I get my story is widely available but this was just… different. I wasn’t contacted by anyone and they made up some conversations.

@AaronBlocker_ You have to tell me who this is!

Always lovely when someone messages you asking if a podcast episode is about you and you have never heard of it and lo and behold the whole episode is about your medical story.. with some creative liberties taken and I’ve never been contacted by said podcast….

I was asking for a letter of medical necessity to get some reimbursement for stuff related to my disease and it needs to come from him but so far he’s refused to write the letter because he doesn’t think what I am going through is related to my disease..

Tough having a doctor treat symptoms of your rare disease but doesn’t know anything about the rare disease itself so doesn’t believe what he’s treating is related to the disease. So I sent him research papers about my disease and what is happening is related.

Watching the Olympic gymnastic trials and I’m always amazed at these athletes. What they do is genuinely insane. But also as someone with a bone disease it gives me anxiety seeing what they do and knowing I’d break every bone in my body if I even tried to do a front flip 😂

Someone recently asked me what diet I’m on because I’ve lost so much weight. I said it’s called “Crohn’s Disease” #IBD #CrohnsDisease

@casscondray Thank you. Was a tough day.

Today we say goodbye to my Meme, my adoptive mom/grandma.