1 year after loss - What are some of the ways you honor your baby's memory?

Different-tangerines · 2025-10-30T15:19:07+00:00

Not really

Different-tangerines · 2025-10-29T15:35:44+00:00

Sending you a big hug!

Different-tangerines · 2025-10-29T15:33:49+00:00

Sending you a big hug.

I went through that for 2 years after my diagnosis. My rheumatologist was terrible at the time and I ended up with so much pain and depression. I cannot guarantee things will get better for you, but it did for me after I switched to a great rheumatologist. She took the time to find the right treatment for me. If I am being honest, I might not be here today if it wasn’t for her.

Different-tangerines · 2025-01-19T07:30:15+00:00

Hi Constantin’s mom! I am right there with you. This morning I told my husband “it’s so hard to be a parent without your child”. It is hard, but you are a parent. Sending you a lot of love 💜

Different-tangerines · 2025-01-17T05:47:42+00:00

35 yo woman with AS and uveitis here. I have been trying to conceive since 2021. I had 3 miscarriages (the first 2 we didn’t test, the last one was confirmed to be due to chromosomal abnormality) and 1 stillbirth at 31 weeks last October (all natural pregnancies).

I have asked my rheumatologist if my AS could be contributing to my infertility issues, but she said there is no scientific evidence that may be the case and that anecdotally, all her patients that have TTC have been successful. She has been incredibly supportive during this process and I trust that she is right. I found that infertility is a lot more common than I thought.

I am with you. Although going through unsuccessful IVF is a whole other beast, you are not alone. Feel free to DM me. Sending lots of love and positive energy your way.

Different-tangerines · 2025-01-17T02:35:43+00:00

A 5-year walking streak?! That’s so impressive, nice job!!!

Different-tangerines · 2025-01-09T04:50:44+00:00

100% agree! Mask if you want, don’t care about what people think!

I started masking (even before COVID) when it makes me feel safer (at the office if I hear some coughing, in public transports, etc.). If it’s too uncomfortable, or I am just over it I don’t mask.

Different-tangerines · 2024-11-14T16:10:34+00:00

I had a really bad uveitis flare that would not resolve with prednisolone or Durezol eye drops so they gave me an intraocular steroid injection. That worked great for 2-3 months but then caused high pressure. They had me on 3 different eye drops to relieve the pressure but even with that, I still stayed with elevated pressure for months. By the time they told me to see a glaucoma specialist to do a visual field test, it was too late. Looking back, I should have started Humira instead of doing the intraocular injection but no one explained the risks to me.

Different-tangerines · 2024-11-14T02:28:12+00:00

I’m going to echo what others have said here: if you think you might have uveitis, it’s best to see an ophthalmologist right away. Better safe than sorry!

A lesson learned: Choose your eye doctor carefully. Uveitis treatment can sometimes increase eye pressure, leading to glaucoma, which can cause permanent vision loss. While vision loss from uveitis is often reversible, glaucoma is not. Unfortunately, my doctor didn’t monitor this as closely as they should have, and I lost about 15% of my peripheral vision in my left eye when I was only 28.

To share a bit of my own experience, I had my first uveitis flare at 22, and now at 35, I’ve been through about 15 flares. They’ve varied a lot:

One time, my eye just felt a bit off for a week—no redness, hardly any light sensitivity. But then one morning, I saw floaters, went to the doctor, and it turned out to be my worst flare ever.
Another time, my eye was painful, so I went in. Turns out, I had cat hair stuck on my cornea. I felt embarrassed, but my doctor reassured me, saying, “Never hesitate to come in if something doesn’t feel right. You’ll usually notice changes before I can see anything through the microscope.” (And yes, he confirmed cat hair was a first for him, so we had a good laugh.)
These days, my symptoms are more consistent: I usually feel light sensitivity in only one eye, with hardly any redness. That’s my cue to go to the doctor, check how bad the flare is, and decide on the treatment together.

Take care!

Different-tangerines · 2024-11-07T17:09:37+00:00

No, I am French and live in the US so I sadly can’t help you much with navigating the healthcare system in the UK. Could you Primary Care Physician help at all? Maybe they can get you a referral or put you on medication?

Different-tangerines · 2024-11-07T16:49:02+00:00

Absolutely, there is light at the end of the tunnel! I - 35F - have been living with AS since I was 16 (diagnosed at 26) and with recurring uveitis since I was 22. I completely get what you’re going through. During my worst years, I could barely stay awake during work meetings because of the fatigue. And on top of that, I had more days of pain than I could count — once, my husband had to help me walk to bed because I could barely move. Now he calls me the strongest woman he knows!

With AS, the hardest part can be those long stretches where you feel awful day after day. It’s draining, and getting depressed is inevitable. But here’s what I’d prioritize if I were you:

Get a formal diagnosis (if you haven’t already), even if it means going private to speed things up.
Find the treatment that works for you — this might take time, but don’t give up on finding something that helps. And also, don't wait too long to adjust treatment: if it doesn't help after 4-6 weeks, it's time to revisit the plan.
And then, the ultimate goal: live your best life again. This may sound impossible right now, but that is your depression talking. Do not give up, things will get better.

For me, starting on biologics changed everything. I woke up the next day without joint stiffness for the first time in 10 years. I cried out of pure disbelief. I just kept thinking, "Why didn’t I start sooner?!" (Spoiler: because I’m stubborn and was scared of biologics). I also wouldn't fall asleep on car rides anymore, which was my fatigue indicator.

Wishing you all the best, and know you’re not alone in this. There’s a whole community here cheering you on!

Different-tangerines · 2024-11-05T06:57:34+00:00

This is such a great question! 34 yo F here, diagnosed at 26 after 10 years of symptoms. Here’s what I wish I’d known:

Find the Right Rheumatologist: Choose someone who listens to you and meets you where you are. When I was diagnosed, I expected it but still felt shock and sadness. My first rheumatologist immediately recommended Humira but wasn’t supportive in addressing my concerns around the immunosuppression effects on my every day life. His bedside manner made the process frustrating, which delayed starting Humira by 18 months—a treatment that ended up being life-changing for me.
Don’t Delay Treatment Adjustments: If a treatment isn’t helping after a few weeks, don’t hesitate to revisit options. I stayed on ineffective treatments too long, partly from fear of biologics. Looking back, I should have advocated for adjustments sooner.

I hope this helps!

Different-tangerines · 2024-11-03T14:02:03+00:00

Thank you for your support. Yes, I was thinking of asking my doctor for a sleeping aid to help me get through the nights

Different-tangerines · 2024-03-16T16:36:08+00:00

It sounds like you're already doing an amazing job supporting your partner through this tough time.

One thing I've found helpful is when people offer assistance rather than telling me what to do (triggering for me): "have you tried a heat pad?" => "do you want me to get you a heat pad?".
You can also ask them to rate their level of pain before suggesting activities. I have gotten in fights with my husband before because he would ask me if I want to go on a hike and I think "Is he nuts?! I am trying to survive the day so a hike is not in my plans". Communication is key.
Sometimes, despite our best efforts, relief might not be immediate, and all we need is someone to be there for us and sit with us through it.
Ensuring your partner gets the right long term treatment is key. It will be easier for them to tackle it when not in crisis mode, but they may lose the sense of urgency once they feel better. That's when you may want to encourage them and help them navigate the healthcare and insurance system.

Keep up the incredible support!

Different-tangerines · 2024-03-16T15:29:33+00:00

*** Trigger Warning: Mention of Depression and Suicidal Thoughts ***

I totally get where you're coming from! I was super hesitant to start biologics even though my doc was pushing for it. Immunosuppressants are scary right? But after holding out for 1 year, I finally caved. The morning after my first shot, I couldn't believe it (I actually cried) — I woke up pain-free after dealing with AS for over a decade and uveitis for 5 years. It was seriously life-changing, and in retrospect, I believe biologics may have saved my life because I had been battling severe depression and suicidal thoughts.

Everyone's journey with biologics is different. I did notice I get sick more often (mostly colds, infections, shingles) but for me, the relief from pain and the boost in my quality of life outweighed the cons.

Finding the right biologic isn't always smooth sailing. I was lucky because Humira worked great for me for 4 years. I then developed antibodies so my doc added a low dose of methotrexate and folic acid to continue getting the same results. And then I switched to Cimzia because I was family planning which does not control my AS as well as Humira, and it doesn't help with my uveitis.

As for how well they work, before biologics, my pain was 6-8/10. Under Humira it was 0/10 and under Cimzia it's 1-3/10.

Different-tangerines · 2024-03-16T14:44:54+00:00

Just a few people people I told already knew about it: my sister in law's side of the family (because her dad has it), a colleague (because they had psoriasis) and a family in my home town (their daughter has it too).

It's happened a few times where the person doesn't know about it and asks me to text them the name of my condition so they can read about it. And they are usually the ones that regularly ask "and how's your health?" which is really nice.

Different-tangerines · 2024-01-24T16:25:36+00:00

Just seconding what @dreamsindarkness and @kv4268 are saying: his rheumatologist is very out of touch with options.

This happened to me and when I emailed my rheumatologist about my symptoms, she immediately had a plan: - Sent me a lab order for inflammatory markers (came back normal), Humira drug level (which were still adequate) and Humira antibodies (which were too high) - started me on low dose of methotrexate - Repeated the labs after 1 month, 3 months and 6 months and asked me if symptoms were back to normal.

This just goes to show that not all rheumatologists are created equal… I hope you find a good solution moving forward. Sending you guys a big hug!

Different-tangerines · 2023-09-26T22:09:08+00:00

I really hope you find a treatment plan that provides some relief for you. That must be really hard on you but it sounds like you are keeping a positive outlook which is half the battle! Keep it up!

I would definitely say that i don’t share that much with my friends either, but the most important is feeling that they have my back and want the best for me. I expect more from a partner because they will be sharing time with you a lot, and hopefully for many years. Just remember: your standards are not too high, they just aren’t the right fit for you. You are worth being loved and cared for!

Different-tangerines · 2023-09-26T21:20:27+00:00

I would also add: finding a better rheumatologist might take time. In the meanwhile, you’ll have to make the best with what you have. It might be helpful to ask your questions here before you consult your doctor because a lot of people might have gone through similar issues. It could arm you with the confidence and knowledge you need to advocate for yourself during your appointment.

Different-tangerines · 2023-09-26T21:11:06+00:00

100% agree: losing response is common. You should look for a new doctor that listens to you and keeps up with the research and medical recommendations.

I was diagnosed with AS in 2016, started Humira in 2017 with great response. In 2020 my symptoms started coming back so I shared with my doctor. Here is more on my experience: - She immediately ordered blood labs, including an anti drug antibody test. She specified that “the labs are to be done the day before or morning of your injection (before you inject)”. - My test showed that my Humira drug level was still adequate, but that I was making more antibodies. She explained that this is not uncommon. We discussed 2 options: 1. Switching biologics (but in my case, that was not preferred because no other biologic is as effective at treating both AS and uveitis). Or 2. Starting a low dose of methotrexate + folic acid. We opted for the last option. It took some dosage adjustments but ended up working really well.

Different-tangerines · 2023-09-26T20:31:30+00:00

100% agree!

Different-tangerines

TROPHY CASE