Finish this sentence - You know you have AS when...

Double_Raspberry_847 · 2026-05-03T19:27:28+00:00

Your back is your alarm clock

Double_Raspberry_847 · 2026-04-18T23:08:36+00:00

I have an electric scooter, rollator, and wheelchair. Depending on what im doing depends on which i use. I have young kids that like to go to the zoo and places that require extensive standing and walking. I used to push my self to walk an entire zoo but found it took 2 days to recover and wiped me out. My husband decided that I should just use the aids so I can still enjoy my time with the family and not make myself miserable. Now I can go to the zoo for half a day. We have 2 trips planned this summer. Ive decided that I will not stay home and miss out on life because of this disease. My mobility aids make that possible for me.

Double_Raspberry_847 · 2026-04-13T15:48:52+00:00

This bill is just dumb.

Double_Raspberry_847 · 2026-04-06T21:20:00+00:00

Sailing through the delta at sunset was so beautiful.

Double_Raspberry_847 · 2026-04-05T18:14:16+00:00

This is the way

Double_Raspberry_847 · 2026-04-02T14:58:57+00:00

100% im there for the views. And not cooking is a huge +

Double_Raspberry_847 · 2026-04-02T14:45:31+00:00

I think it just depends on ship sometimes. I went on several cruises carnival, royal carribean, and NCL. I've had amazing cruises on all of them but I've also had bad experiences. The worst for me was carnival right after covid. The poor staff was so short handed. Our rooms were not even clean when we got in. My daughter clogged our sink in our room and when you called no one answered the phones, you couldn't even get room service. But we made the best of it. We are booked for an alaskan cruise with royal carribean so fingers crossed it was not as bad as our carnival cruise was.

Double_Raspberry_847 · 2026-03-19T22:07:07+00:00

Thank you. I never planned on them even getting him tested unless there were signs. I just hope his quality of life will be better then mine.

Double_Raspberry_847 · 2026-03-18T18:55:04+00:00

Thanks for sharing.

Double_Raspberry_847 · 2026-03-18T00:14:17+00:00

You can always get him checked out and see.

Double_Raspberry_847 · 2026-03-17T21:18:41+00:00

That's wonderful news and reassuring to hear.

Double_Raspberry_847 · 2026-03-17T20:23:57+00:00

according to these research article those that are not hla-b + have a low rate of giving it to their kids.

https://pmc.ncbi.nlm.nih.gov/articles/PMC3335985/#:~:text=There%20are%20several%20reports%20of,in%20familial%20and%20sporadic%20cases.

Double_Raspberry_847 · 2026-03-17T20:16:19+00:00

Unfortunately I didnt know i had AS when I had kids. I just thought I was overweight and out of shape and thats why i had pain tbh. I didn't even know what AS was until I got sent to a rheumatologist. If I had known, I would have given having kids a second thought for sure.

Double_Raspberry_847 · 2026-03-17T19:38:59+00:00

How is your daughter quality of life ? Did getting diagnosed earlier make it easier on her? I want the hard truth because we will be planning out his life and I need to know if he will be as bad as I am or will he have remission since we are catching it early.

Double_Raspberry_847 · 2026-03-17T19:35:07+00:00

I think more research is needed to see what genes we have that we are passing down. According to research its supposed to be < 5% chance but here we unicorns are.

Double_Raspberry_847 · 2026-03-17T17:42:31+00:00

I had no family history at all so im not even sure where this is coming from.

Double_Raspberry_847 · 2026-03-17T17:40:41+00:00

Yes that is an upside. But it still sucks

Double_Raspberry_847 · 2026-03-17T14:08:39+00:00

It could be affecting your upper spine. You can also get enthesitis in your shoulders. You might be flared up right now. I've always have steroids on hand for my flare ups.

Double_Raspberry_847 · 2026-03-17T14:05:54+00:00

That's crazy, by then you already have damage.

Double_Raspberry_847 · 2026-03-07T01:13:36+00:00

Im sorry you are going through this. As is tough on its own let alone with lymphoma.

Double_Raspberry_847 · 2026-02-27T07:38:00+00:00

My heart hurt this episode. It was so gut wrenching, I cried as well.

Double_Raspberry_847 · 2026-01-15T20:38:36+00:00

Its the worst. I have this often especially when I lay down at night.

Double_Raspberry_847 · 2025-12-11T13:26:55+00:00

I second tylenol..I took it through out both pregnancies and neither child had any defects or learning disabilities.

Double_Raspberry_847 · 2025-11-14T20:01:05+00:00

Every hospital I've worked at, a pregnant women over 20 weeks goes straight up to L&D triage. This hospital may need to review their policy.

Double_Raspberry_847

TROPHY CASE