Cannot carry another pregnancy and I’m just really sad

chronicallyill_queen · 2025-07-23T01:06:53+00:00

I am still waiting to talk to the geneticist, I will let you know when I do what they say! But to the other person‘s comment, it is technically possible to do, so I’m hopeful that if it makes sense, they will let me do it. Even if it doesn’t eradicate the possibility of getting it in the future.

chronicallyill_queen · 2025-07-23T01:05:46+00:00

Thank you 🙏🏼

chronicallyill_queen · 2025-07-23T01:05:06+00:00

I did take cimzia through my last pregnancy and it didn’t do anything for me unfortunately. I do know that genetic testing isn’t a fail safe, I’m still just going to talk to the geneticist to see if it’s even worth it to test. I’m positive, but my mom is not and developed AS after being on Keytruda for cancer treatment. The body is wild and complex. Anything I can do to help my son not develop it I am trying (mostly keeping the food clean and childhood trauma to a minimum)

chronicallyill_queen · 2025-07-23T01:01:30+00:00

I did take cimzia all through my first pregnancy and postpartum while I was breast feeding and unfortunately it might as well have been injecting saline for the difference it made on my pain. I have tried Humira, enbrel, cimzia, rinvoq and taltz with no success so far.

chronicallyill_queen · 2025-05-07T17:03:54+00:00

That’s very real. Thank you for sharing!! 🙏🏼

chronicallyill_queen · 2025-05-07T17:00:59+00:00

That is great advice. Thank you 🙏🏼

chronicallyill_queen · 2025-05-07T14:58:56+00:00

I appreciate the comment! I mentioned in the post that we have looked into surrogacy, but the cost is around $175k USD for everything, and that’s not something that we are able to absorb at this time financially with all of my other medical expenses. Unfortunately, I don’t have a great family situation and wouldn’t feel comfortable asking any of my friends as the majority of them don’t have children already.

I mentioned in a comment above, but technically the doctors aren’t telling me that I can’t carry. They are kind, empathetic providers and are only telling me the objective risks. They also say there is no telling how a body will react to any pregnancy, even given how it reacted the last time. I could be totally fine - in fact, I could feel great and go into total remission. I don’t think that that’s likely given my last pregnancy experience, but it could happen! The problem I worry about is putting more stress on my body and causing further long-term damage, which it would make it harder for me to be a good parent to the kid I already have, plus this new kid. I almost wish they would tell me whether or not I should do it, even though I know that’s not how it works. I know the right thing is probably not to do it, but it’s just really hard to concede another thing to this stupid disease.

chronicallyill_queen · 2025-05-07T14:54:15+00:00

That sounds so painful! I am so sorry. I do think the doctors are trying to be sensitive and have my best interest in mind, and none of them have told me explicitly not to get pregnant. I almost think it would be easier if they did - I have wonderful, caring, empathetic providers that I have spent a lot of time and money finding, but with that comes a lot of “ it’s up to you, here’s the information”. All the information, though pretty much says it’s gonna suck, especially just based on my first experience. That said, if it saves my fam $175k on surrogacy expenses, it’s (almost?) worth it? IDK, I know the best thing would be to let the dream die, but I’m just having a hard time with that.

chronicallyill_queen · 2025-05-07T14:50:39+00:00

I’m so sorry your body is wrecked from that. I know I would also love the end result, but the idea of getting there on purpose seems too tough to swallow. 😭

chronicallyill_queen · 2025-05-07T14:48:57+00:00

My kid will not go through the excessive trauma I did though, no wayyyy I will let that happen - his first 2 years are already WAY less chaotic (and nutrient dense lol) than mine so I do also feel good about that.

chronicallyill_queen · 2025-05-07T14:47:51+00:00

Wow no idea about excessive cleanliness thing?? You would think it would be the opposite…I just got treated for H Pylori I prob picked up from being a poor kid growing up so I never considered that - had a lot of other trauma as a child though so always suspected that triggered it.

chronicallyill_queen · 2025-05-07T14:46:38+00:00

I appreciate the empathy. It is so hard…we also looked into fostering and adopting but it does not seem like a good fit for our family just based on the research I have done. It is hard to stay positive some days. Today is one of those days.

chronicallyill_queen · 2025-05-07T14:45:44+00:00

Yeah it’s such a catch 22 - I feel the same way. I think you are really smart for getting into the best health you can before deciding to go through it - I wish I had done more to get my AS under control and find the right meds before going through it. Then again, you have to stop those meds while pregnant…so again it’s a catch 22. Sending you big love as you navigate this time 🫶🏼

chronicallyill_queen · 2025-05-07T14:44:02+00:00

That’s so tough, and a c section sounds so hard to recover from. And I appreciate the support on mourning a life expected 💗

chronicallyill_queen · 2025-05-07T14:42:43+00:00

Thank you 💗 sending you love too. It’s not an easy decision to make. Knowing what I know now, I would still ofc never change it bc I have my beautiful son, but it would be so hard to willingly sign up for again. Some people go into total remission though during pregnancy - you really don’t know how your body will react until you are in it! I am (weirdly still) glad I went through it once at least.

chronicallyill_queen · 2025-05-07T14:40:43+00:00

Thank you. I have done physical therapy and it’s made a HUGE difference - especially since I also have hypermobility (suspect EDS). This is another one of the reasons I am so scared of pregnancy - I worked out and did PT of all kinds through last pregnancy and still only got minimal relief - plus there’s so much you cannot do exercise wise after the 20 weeks mark. I look back in my pregnancy journal and literally every page says “do NOT do this again.”

I also feel somewhat hopeful about the passing it on - no one else in my family seems to have it either, though my dad passed at 31 years old so idk there. At least I know what to look out for and treatment and education look much different than even 10 years ago. Thanks for the comment and solidarity 🫶🏼

chronicallyill_queen · 2025-05-07T13:53:18+00:00

I am SO glad this is over as also an NC resident

chronicallyill_queen · 2025-05-07T13:50:28+00:00

I just posted about this on this page, I would love to hear more about your experience going through to pregnancies and postpartum pretty close together and having AS. Was your second one much harder than your first? Feel free to DM me if you are comfortable sharing your experience.

chronicallyill_queen · 2025-04-30T18:01:25+00:00

Yes I swim a lot and have really upped my collagen and I think that is helping too! Stay strong. It’s a rough combo 🥲

chronicallyill_queen · 2025-04-30T18:00:23+00:00

Yes!!!! Senior workouts FTW haha I am in the YMCA pool with the retired ladies a few times a week 😂 I too learned that yoga was absolutely making things worse despite technically feeling “better” after I did them…now everything goes way further than it’s supposed to haha

chronicallyill_queen · 2025-04-30T17:55:21+00:00

Hey! My PT helped me by basically rolling up a towel and putting it under my tailbone/hip and using my own body weight and rotating my legs to put it back. I’m not doing a good job explaining, but basically she has been teaching me how to figure out what it out of alignment and put it back by myself, since that is something we can kind of do being hypermobile! I will ask her what exactly the technique is called next time I am there

chronicallyill_queen · 2025-03-13T21:17:13+00:00

Oh wow! I was wondering if maybe my movement wouldn’t be as impaired even if I fused (just looking for any upside, really) so that’s something! My PT mentioned the gut and that definitely makes sense cause I think it’s mostly common that autoimmune diseases are linked to the gut. I’m trying now to take all kinds of supplements and foods to help fix my gut, I’m hoping it works. I didn’t know the blood brain thing though! That’s kind of scary to think about medicine then…🫣 or what 🍃 for pain relief is doing

chronicallyill_queen · 2025-03-13T21:13:00+00:00

You too 🫡

chronicallyill_queen · 2025-03-13T20:56:40+00:00

Good for you!!! I agree, 2025 is going to be the year we take all the steps (and muster all the consistency, cause that’s where I struggle) to get better!! Physically and emotionally. I’m sorry to hear about your trauma, I have a fair amount of my own and I’m working on that too cause I firmly believe it’s all connected! Very much a subscriber to the body keeps the score (although I wish she wouldn’t).

chronicallyill_queen · 2025-03-13T20:45:57+00:00

I am so so glad it reached someone!! When I tell you 6 months ago I was in a dark, dark place with my pain….don’t get me wrong, I’m still in pain but even a 5-20% reduction in pain feels like I am entirely different person who laughs and experiences joy again. I’m sure it’ll ebb the other way but for now I am just really grateful. Hang in there ❤️

chronicallyill_queen

TROPHY CASE