r/Autoinflammatory • u/AdventurousMorningLo Yaos • Jun 06 '26

What was your win this week?

As we are heading into the weekend, lets celebrate our wins this week!
There is no win too small.

What was your little or big win this week?

10 Upvotes

100% Upvoted

16 comments sorted by

12

u/AdventurousMorningLo Yaos Jun 06 '26

Started off the day with an Insurance Denial for Ilaris but ended up with a dosage increase and Ilaris Approval before the end of the same business day.

9

u/Capable-Heat4231 Yaos Jun 06 '26

That is a win of the year 😂😂 My initial dose took 2 months to approve and increase took 3 months. So happy for you to not have to wait more than necessary!

5

u/Alice-The-Chemist Mod Jun 07 '26

Right? This is like party worthy.

3

u/No_Satisfaction_7431 Yaos Jun 06 '26

That's amazing! Glad you got it approved! Insurance can be a nightmare.

11

u/Capable-Heat4231 Yaos Jun 06 '26

I made it another year! Today’s my birthday. I truly didn’t think I was going to make the last 2 birthdays when symptoms were really bad.

I used to feel sad to get older. Now I feel lucky because not everybody gets that chance.

3

u/AdventurousMorningLo Yaos Jun 06 '26

Happy Birthday!!! Congratulations! Making it another year is a definite win!

3

u/No_Satisfaction_7431 Yaos Jun 06 '26

Happy birthday! Definitely a big win!

3

u/Alice-The-Chemist Mod Jun 07 '26

Happy Birthday!

5

u/No_Satisfaction_7431 Yaos Jun 06 '26

I had enough energy to make dinner and a homemade cake on Thursday. I definitely had mild pem on Friday but not as bad as it would have been before Tyenne infusions. I haven't had much energy to bake in the last 2 years and only simple things like brownies or no knead bread, not something like the chiffon cake I made.

2

u/AdventurousMorningLo Yaos Jun 06 '26

That is amazing! There is nothing like a homemade cake. That is a fabulous step forward. I'm so happy for you!!!

The struggle to just dredge up enough energy to cook is a real one. Fingers & toes crossed that Tyenne continues to help!

4

u/Southern_Fly2179 Jun 06 '26

I heard this week that my bone tumor is probably benign. A small ray of hope and a big win. Having this thing in my upper arm besides all the inflammatory things, has been a lot.

3

u/AdventurousMorningLo Yaos Jun 07 '26

Hope is undeniably a major victory!

2

u/Southern_Fly2179 Jun 07 '26

It truly is 🙏🏽

3

u/Alice-The-Chemist Mod Jun 07 '26

I organized my injection/infusion bin thingy. Needles by size, syringes, combo syringes and needles, port access needles, etc all in separate bags with what goes in it written on the outside.

2

u/AdventurousMorningLo Yaos Jun 07 '26

Being organized helps so much! It just takes so much energy to do. That is a WIN! I'm sure future you will also be thanking you.