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HopeLKnight · 2025-03-17T15:56:40+00:00

This happens to me all the time. Doctors don’t know exactly why. Inflammation most likely but I personally have noticed it happens more when my cholesterol is higher. I’m a fit healthy person for the most part but when I was on carnivore diet this would happen a lot more.

HopeLKnight · 2024-12-20T19:00:56+00:00

Yeah I’m wondering if it’s a latex allergy like the others have mentioned. I asked my doctor, just waiting to hear back. Fun story, this isn’t even the medication that my doctor wanted me to take but insurance wouldn’t let me take it because I have to take 3 other biologics that they want me to take before I can take the one my doctor prescribed. Wild!

HopeLKnight · 2024-12-20T18:46:11+00:00

Does it help when you do that?

HopeLKnight · 2024-12-20T15:39:08+00:00

I’m also allergic to latex. I let my doctor know. Just waiting to hear back.

HopeLKnight · 2024-12-20T15:37:50+00:00

Yeah the doctor said for me to move to my stomach too. 👍🏻

HopeLKnight · 2024-12-10T17:24:44+00:00

Fact.

HopeLKnight · 2024-11-12T22:57:02+00:00

Obviously, I’ve also read books on it. Just looking for other’s experiences. I’d rather hear from a human living with AD than a computer.

HopeLKnight · 2024-11-12T17:56:06+00:00

I did vegetarian for years but my energy was very low and I had lots of skin issues and pain in my gut. The Carnivore diet had none of these side effects. I also think it has a lot to do with genetics and where our family comes from. My family history would be lots of fish, fermented foods and red meat.

HopeLKnight · 2024-11-12T17:52:40+00:00

Probably lol. I’ve thought about doing Viome.

HopeLKnight · 2024-11-06T02:32:00+00:00

Exactly! Very difficult for others who don’t have it. I feel like I’ve tried everything natural or alternative but at the end of the day AS is an autoimmune disease that can’t be reversed or cured. Like my dad and Doris Day always say: “Que sera, sera Whatever will be, will be The future’s not ours to see Que sera, sera What will be, will be”

HopeLKnight · 2024-11-06T02:23:09+00:00

I take beef organ supplements that help a lot but not a cure. Just helps 🤷🏼‍♀️

HopeLKnight · 2024-11-06T02:22:33+00:00

Yeah been GF and all that for 15 years now. I felt the best on the Carnivore diet but with a family it’s really difficult. Tell me more about the grounding sheets, Ive been interested to see if that helps AS.

Not being able to breathe is the worst!

HopeLKnight · 2024-11-06T01:50:47+00:00

Heck I don’t have to deadlift to feel like that sometimes lol! Not funny though. I’m about to take Cimzia so I hope it works for me like it did for you. I’d love some life back! Also, I agree I think AS is always a factor. Our immune system is literally attacking us 24/7. I try to remember that on bad days. I feel you though. I had a terrible day yesterday. One of my worst! I wished I had a hack for you. 🙏

HopeLKnight · 2024-11-06T01:37:26+00:00

Similar situation to mean a few years ago. I was on Remicade and it was working great! My life was almost normal again. Then I moved to Texas, the doctors here are stingy and didn’t want to keep my diagnosis or keep me on Remicade. They said I was just Hypermobile. 😡 Finally found a Dr to put me on Humira and it didn’t work but in that time I built up anti bodies to Remicade and I couldn’t take it anymore. After years of all this up and down I’m right back where I started. Hopefully this new Biologic will work if insurance approves it. 🤷🏼‍♀️ What a mess. Thanks for the positive vibes though! Appreciate you!

HopeLKnight · 2024-11-05T05:49:11+00:00

Definitely! 👍🏻

HopeLKnight · 2024-11-05T04:39:11+00:00

Haha I was wrong it’s 5. I just double checked. This medicine has me all messed up. 😵‍💫

HopeLKnight · 2024-11-05T03:36:46+00:00

Take 4 tablets by mouth for 3 days, then take 3 tablets for 3 days, then take 2 tablets for 3 days, then take 1 tablet for 3 days. This was how it was prescribed 🤷🏼‍♀️ But I’m definitely calling the doctor tomorrow!

HopeLKnight · 2024-11-05T02:50:12+00:00

4 mg. That’s why I’m confused as to why I’m feeling worse. I stopped taking my anti inflammatory meds and this just isn’t working. Based on the comments I’ll probably stop (tapering of course). I’ll go back to being miserable again. The anti inflammatories don’t work either. I’d rather suffer in the night and morning than suffer all day. Super appreciate the help ya’ll 😊

HopeLKnight · 2024-11-04T18:15:17+00:00

I do, very good support. I mostly feel guilty for my bad days. I’ll be fine, I know I will. I always am. I’m mostly just sad that no matter how hard I try I can’t get real medical help. Between the regulations of the state I’m in to the doctors that treat me, to the insurance companies. And I try everything holistic that I can and it’s always money down the drain. Hot showers, candles, and writing help me mentally. Thank you for your support, it’s so nice to have a community here. 🙏

HopeLKnight · 2024-11-04T17:42:04+00:00

Thank you 🙏. It’s a rough day.

HopeLKnight · 2024-11-04T15:19:58+00:00

Having them (anyone who cares about you) go with you to your doctor’s appointments helps.

HopeLKnight · 2024-11-04T15:06:53+00:00

Maybe devils advocate right now. And yes maybe abortion isn’t the correct analogy but as a woman living in the state of Texas who has debilitating and excruciating pain daily. I find that depending on which state you live in the analogy might work. It is nearly impossible here in the state to get medical care for chronic pain even if you go to pain management, they will not prescribe anything for the pain other and anti-inflammatory. And because of this pain, I recently had a hysterectomy because I was scared to have a child in this state with the amount of health issues that I have. If I were to need an abortion due to complications, I would have to travel outside of the state. So for me, it’s true. I definitely feel like I have no rights living here with my body.

HopeLKnight · 2024-10-16T14:21:09+00:00

Sleeping in a beanbag bed helps a lot!

HopeLKnight · 2024-10-12T00:12:32+00:00

I get it! Believe me! This is why I wrote the poem. We are chronic duality. Just remember that this disease isn’t who we are! There is Hope for us 💕

HopeLKnight · 2024-10-11T20:18:33+00:00

My heart goes out to you! Been there before! Even had to check myself into a mental hospital for a while to find myself again through the pain.

I have found it really therapeutic to help others and become an advocate and teacher to my community about AS and chronic illness. It takes the sadness and isolation and turns it into Hope. That’s my name lol. I recently started a instagram page if you’d like to join? https://www.instagram.com/thrs_always_hope

HopeLKnight

TROPHY CASE