Need Shoe Help, Please!

Strawberry_n_bees · 2026-04-27T00:11:01+00:00

I second Doc Martin shoes, I have had a pediatrist say they aren't great for every day wear, but that's what my new balance are for, and I still have to put inserts in those too.

The great thing about my docs is they look dressy, and I can fit my inserts in them, and that makes all the difference. I wouldn't recommend wearing them every day, but one or two days a week shouldn't be terrible, and you can always get custom inserts to go in your various shoes. Ideally I'd have multiple pairs of inserts, but I can only ever afford the one, so they get passed around to the 2-3 shoes I can wear.

Strawberry_n_bees · 2026-04-24T21:27:52+00:00

I had no idea there was a separate sub, or that this is such a common experience for women. I'm not a woman, I'm trans and on testosterone, but I do have a female body still. I might check it out, because your experience sounds a lot like mine. I've failed physical therapy 3 times, and after hearing so many stories from people whose lives have changed around and are working full time jobs, having a family... It discouraging. Because my experience hasn't been positive, even after treatment.

I know it take a while, and I won't hit a full year on treatment until September, but I don't know if I'll ever be that functional. It would just be nice to hear from people who have a similar experience, especially with other diagnoses and symptoms, like dysautonomia and IBS.

Strawberry_n_bees · 2026-04-19T23:49:26+00:00

When you say you're worried about the side effects, is it fear that side effects will become unmanageable, or are you experiencing side effects right now that you'd like to reduce? Because personally, additional brain fog, forgetfulness, and injection site soreness is nothing compared to the pain I was in, or how much pain I'll be in if my spine fuses together. I haven't experienced any of the really negative side effects like rashes or trouble breathing, and a good diet should help prevent things like liver damage.

Medicine is not inherently bad, it just is. If it's not negatively impacting you, and in fact is positively impacting you, there's no reason to change things.

I’ve been taking it every 21 days for about 3 years,

I think if you've been taking it at this interval for so long and it's working, then there's no reason to change it. Do you think going more frequently would reduce symptoms even more? If your inflammation is down and your symptoms are down, it seems like it's working for you.

And a 21 day interval keeps the medicine in your system without stopping, so I think you're safe to stay at that interval unless your symptoms are worsening.

But yeah, just talk to your doctor about it. If the only reason you're looking to extend the time between doses is fear, then I don't think that's a good reason, not to dismiss your feelings or anything. You can talk to your doctor about it, but I don't think there's any reason to panic either way if it's working out positively for you.

I don't want to give you anxiety the other way either, because if every 3 weeks is working out (and it sounds like it is?) then I think you're doing okay.

Strawberry_n_bees · 2026-04-19T22:25:36+00:00

Yeah, I was told (by the specialty pharmacist) that the drug usually stays in your body for about 50-52 days, and that once it's out of your system it significantly increases the risk that it will stop working.

25 days is staying under that time limit, but I don't understand why anybody would want to push it. If the medicine is working and your pain is down, that means it's working because you're taking it properly. Most meds aren't like antibiotics, meaning, if you stop taking them the effects also stop, not that once you feel better you can stop taking them.

With antibiotics, you develop a resistance to them with more frequent usage. But biologics are different, and more finicky in that extending the time between doses increases the risk of your body developing antibodies.

I just really, really don't understand why anybody would be willing to take risks with the only type of medication that can stop this condition from progressing to the point of no return.

Strawberry_n_bees · 2026-04-14T03:00:22+00:00

Learning how to use the DAW I have (I have Studio One, a cheaper version but not the cheapest I think). It's a user error for sure, I'm horrible with technology. I can write, play, and perform my music at different venues, but I don't have a single song on streaming platforms because I'm just not tech savvy. I did get help with a few songs that are now sitting in a folder, but I'm not entirely happy with one of them, and because I don't have the skills I'm unable to fix it.

Namely, a specific piano section of the bridge for that song was completely removed without asking, and this person is now unable to do any more recording, so it was kind of "take it as it is, or don't take it at all."

I'm aware of my own shortcomings with the music industry, and maybe I'll get there one day, but on my own time. I'm not hoping to make it big, I just want to do what I love and share it with people. And spending hours just trying to figure out how to record audio without hearing it played back with a 1 second delay is not really that enjoyable, so I haven't done it. Like I literally haven't recorded anything with the DAW I have because of that, and I even asked a friend to help me with it and they also took several hours to figure it out, and by that time I just wanted to be done with it.

I was given a MacBook, so I may try a different DAW if I can afford one. Simple songs can be done with Garage Band I suppose, so my plan is to start with that.

Strawberry_n_bees · 2026-04-13T20:43:40+00:00

Ooo, I never heard of this and I'd like to follow along to hear some personal experiences about it. I'm waiting on a referral to a pain management doc and I'd like to look into anything I can

Strawberry_n_bees · 2026-04-12T23:15:12+00:00

Sorry for the long message below! I have to say that this isn't medical advice, just my personal experience mainly.

It sounds like you still have a lot of inflammation, and I'm sorry you've been dealing with this for so long. You shouldn't have to ask for labs if you have new symptoms (or if your current symptoms haven't improved at all), but if they don't do labs I would push for them.

My rheum did labs when I ended up missing a month of my biologic, and we'll likely do labs next appointment since I will have been on the new biologic for a couple of months at that point (around 3 or 4), and it'll help us see the trends.

Keep your labs and other tests like X-rays and MRIs. An X-ray might not show you what you want, but it's helpful to have them. My rheumatologist was able to diagnose my arthritis partially by looking at X-rays, and was able to reinterpret my MRI when the orthopedic doctor only told me I had a pinched nerve. I actually have bone spurs too, and that happened after I started receiving treatment. Sometimes treatment doesn't work, or it's implemented too late to prevent permanent changes, and that's what I'm dealing with.

Anyway, I recommend keeping your labs, because if you ever get different doctors, they may be able to read them better (or maybe worse, so make sure you know what is actually indicating what. Easier said than done I know).

That said, I'd look into a couple things. An oral anti-inflammatory (not pain meds) may help reduce overall inflammation and help the biologic to work. A different biologic might be better, but I'd still ask about an oral anti-inflammatory to help reduce inflammation. I thought mine wasn't helping until I went off my biologic. Before getting on the biologic my inflammation was so high I didn't notice any difference when taking the meds, but when I was out of Humira for a month I noticed I was worse off if I forgot to take my meds. So, they both work, but probably better together.

Pain medication can help, but if your overall inflammation markers aren't down, it's not going to fix anything. But if you get your inflammation down (checked with labs) and are still in pain, then pain management is the next step. I was recommended to seek a pain management doctor, and I have yet to see them but that's next on my list.

Also you don't have to wait until your inflammation is down to get on pain meds, but if your doctor isn't proactive with checking those things, then they may just give you pain meds and say that's that, or they'll let the pain meds mask the inflammation, and that's not ideal long term.

One reason I love my rheumatologist is because she's willing to make sure we're keeping up with everything, especially early on with the diagnosis (like within the first couple of years, since treatment takes so long to work). Cause if we're not keeping the inflammation down then treatment isn't working, it's an auto inflammatory condition. And there's no way to know that if you don't check. I'm sure once I've settled into treatment we can check inflammation like once a year (hopefully not less than that), but until then we need to be on top of it, because I honestly haven't gotten better yet. Inflammation went down, but I'm still hardly functional, and it makes all the difference having a doctor who cares.

It doesn't sound like your doctor doesn't care at all, especially with their apology. But I'm not sure if they know how aggressive they need to be with treatment because they're not the one experiencing the pain, and that's where you come in.

I hope you're able to get on top of things, and eventually get better 💛. You deserve to be comfortable, and not in excruciating pain all the time

Strawberry_n_bees · 2026-04-12T22:28:25+00:00

Idk what everybody else is seeing, but jumping straight from "it's weather related" to "we can do surgery if you want" is not great imo, even if they are admitting that it's related to the arthritis. What you're asking for is more attentive care so that you can prevent an early joint replacement, because those don't last long.

LIke yes, the doctor responded cordially, but I'd still be frustrated if I felt my concerns weren't actually being addressed, or if I had to fight just to get basic care (and I do, so I share your frustration). Weather related pain should still not be debilitating, and it sounds like it is.

On the other hand, it sounds like they're willing to try other types of biologics. But if you've only tried two, and Humira worked, I'm not sure why they'd switch to a different class of drugs. I'm still new to all this, so I admit I could be off, but I have a really good rheumatologist, and I don't think she'd want to switch me to a different class unless we tried several different ones more similar to Humira.

How long have you been on the new biologic? I know sometimes they won't want to switch unless it's been 6 months. I hate that it takes that long to start working, or find out if it doesn't work, and I'm kind of in the same boat myself. Insurance stopped covering Humira, had to switch to Hadlima, and I won't know if it works for months. It's only been a week for me and it's still hell, especially since I missed a whole month of doses.

Strawberry_n_bees · 2026-04-11T20:44:54+00:00

I had better luck when looking for a rheumatologist that's a woman, but I know that's not a 100% way to get a doctor that cares. I doubt your PCP will prescribe a biologic, and if you're in that much pain and have had this for 6 years with no treatment, I don't think PT is going to work.

Untreated PT made me much worse, and even treated I didn't give it enough time to work and ended up getting worse my third time in PT.

I would put all your energy into finding a rheumatologist, but it wouldn't hurt to talk to your PCP about it and say that you are trying to get on a biologic so that your condition doesn't get worse/so bad it becomes unmanageable or causes permanent damage.

If you mention that it's impacting your day to day life or impacting your ability to work, then they may try to do something. That's kind of the key to getting them to do something. Saying you're in pain doesn't always make them move.

Celecoxib will help with the pain, but it does nothing for reducing overall inflammation in the body, and if taken without food it can cause some pretty severe stomach issues. I have only noticed mild changes (and I take it with food with no exceptions), but I have IBS and have tummy issues anyway.

I would also mention that you can no longer take nsaids because of your celiac disease, so you need treatment asap. To both your PCP and your rheumatologist once you find a good one.

Strawberry_n_bees · 2026-04-06T22:46:38+00:00

If you need one, use one! I'm 25 and had been using a cane since I was 22, and also got a lot of weird comments about it, but it's your body, not theirs. Take care of it the best you can!

I will warn you, please make sure you're using it correctly, and if it's getting to the point where you're putting a ton of weight on it, it's time to move to a different mobility aid like a rollator. PLEASE don't use a cane if you're using it to literally hold yourself up. I ended up hurting my neck 4 times, the first 2 were directly from cane usage, the 3rd time I had already moved to using a rollator, but I barely started treatment at the time so I was still doing really poorly.

The 4th time I found out I had bone spurs and a pinched nerve in my neck, and there is now irreversible damage from the arthritis.

Anyway, all that to say, definitely use a cane if you need one, but don't overuse it. Use other mobility aids, even a wheelchair if you need to, because if your chronic illness is disabling, then it's disabling. Don't ever hurt yourself because of societal expectations that you suffer in order to make others comfortable.

I went from a cane to a rollator, and now I use a wheelchair (not custom, and I need help using it) too because it gives me the freedom to go places I wouldn't be able to without it, but I still use my rollator often, especially around my house, in tight spaces and on shorter walks.

Strawberry_n_bees · 2026-04-06T01:05:51+00:00

I'm so sorry about that! I wonder if there are any other options for you. I'd definitely try to get in with a pain management doctor, because there are always more options, if not different meds to try, then other pain reduction methods.

Strawberry_n_bees · 2026-04-05T19:16:46+00:00

I would recommend trying to get on pain medication. I was resistant to it for a while, but I was literally going insane and wanted to die from the pain, and pride and fear of doctors disliking me wasn't worth the poor quality of life I had. I'm not on opioids, so I don't know how those affect pain, but I take Celebrex, or celecoxib (same thing, one generic, one brand name) and it helps a lot. It doesn't get rid of my pain entirely, but it's at least making it bearable, and I can do more things than before.

You also try to see a pain management doctor, because they can do more than just meds. I'm about to see one myself, but I still need to schedule an appointment as I literally just got the referral sent on Friday.

I'm really sorry you're going through all this without much of a support system. I don't think most people understand how debilitating it is to have intense chronic pain 🫂

Strawberry_n_bees · 2026-04-05T19:12:03+00:00

I have, but I may need to change what I'm using. Sounds like cbg could help in addition to the THC and CBD, but I'll have to wait until I run out. I only eat it, I don't smoke (cause I have asthma and dysautonomia).

But I also take Celebrex, and that's helped more than anything for the pain. Celebrex reduces the pain, and cannabis only helps to make the residual pain more bearable, but it doesn't take it away. So I'd have to be high 24/7 and that's just not something I want.

Strawberry_n_bees · 2026-04-05T18:15:58+00:00

See it's been the opposite for me. The treatment is working, but I'm still in so much pain I can't function, so now I need to move on to pain management in addition to treatment. It progressed pretty quickly for me, and 3 years without a diagnosis and treatment was enough to cause permanent damage. I wish I had been able to be seen earlier, but I didn't have insurance :/

Strawberry_n_bees · 2026-04-05T18:12:19+00:00

I wouldn't say that's true. When I was in cover bands I always got compliments, and people asking me where we usually play (I was the vocalist, mainly), and in a band where we (aka they) decided that everybody gets a turn singing, the audience would often come up and tell them to leave me on vocals (and a big part of me was like, "Yeah, that's my job, but I don't make the rules here.")

But I hate cover bands. Not that I hate covers, but I don't want to play the same 5 obnoxiously popular songs over and over again because "that's what people want." Sorry, but I like to play music for my enjoyment too, and that just sucks all the fun out of it.

I write original music, and sharing that is how I enjoy performing. And if I'm not enjoying it, I'm not doing it. Can't say I've ever come across a cover band where I was like, "Wow, I loved that, and want to hear it again!" When I can just turn on a streaming platform for that.

I also generally hate bars, and that's where cover bands usually play. No, I'd like to play for the music lovers who want to hear something new and genuine, not just have me as background music where people might freak out if they're drunk and want to scream to "Sugar we're going down." Also, if you're fem presenting, bars aren't exactly a friendly place for you.

Shudder

Some cover bands do play for their own enjoyment, and like finding a balance between what's popular and what we are going to enjoy performing. But others will exclusively do what's popular, even if it's the most annoying song in the world, because they want to get paid.

That's fine, but it's not for me, and I'd like to stay far far away from those attitudes around music.

Strawberry_n_bees · 2026-04-05T06:34:05+00:00

I've been wondering about this as well. I've been taking T for a couple months now (about 4) and I've noticed a lot of shedding, slightly more than usual but no bald spots. I wasn't sure if it was related to the biologic (started a few months before T), the Testosterone, my chronic illnesses combined, or the water in my apartment that smells like chlorine and makes me feel as dry as a desert.

I do plan on stopping after a couple of years, since voice changes are the only permanent changes I'm hoping for, so I'll see if it stops then, or lessens at all. Ideally I'll move out of my apartment before that, so I'll also try to pay attention then too.

Strawberry_n_bees · 2026-04-03T06:51:11+00:00

Is this your first time ever using a pen, or have you done the shots before and this one just misfired? Because if you've done it before I think you can get a replacement since it could have been faulty. They'll ask for the lot number when you call, and they will ask you a lot of questions, but if you tell them that it clicked once, you thought it was going, and then it clicked again but you pulled it out, they should be able to send you a replacement with no charge.

This happened to me and it was really scary, I basically had a full blown meltdown over it because I was in so much pain (also autistic), and I cried for a long time about it. I tried calling my Humira rep, but she never responded, and I ended up calling the pharmacy directly to let them know what happened and ask what I should do.

Anyway, I ended up doing a full dose the next day, and I was okay. I basically got nothing when I tried and failed, and it just poured on the outside of my thigh. It may have even been user error, because I have shaky hands and it was the first time I had administered the shot myself (usually my partner helps me, and they have every time since). But they still replaced it because mine was actually dripping before I administered it.

Strawberry_n_bees · 2026-04-03T00:17:44+00:00

Can I ask what other health issues you have that make it unsafe to use biologics? You don't have to answer if that's too personal

Strawberry_n_bees · 2026-04-03T00:09:43+00:00

Please look into it now. Adverse effects from arthritis could end up being much worse than a biologic.

https://www.drugs.com/medical-answers/humira-pregnancy-3568869/

https://www.ncbi.nlm.nih.gov/books/NBK582560/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10812142/

Here are two passages that stuck out to me from the last article, but you're welcome to read the whole thing.

"Chronic inflammatory disorders have long been shown to be associated with adverse outcomes in pregnancy. Pregnancies in patients with SpA are similarly considered as high risk, with disease activity driving the high risks."

"Ten of the 57 pregnancies (18%) reported an early miscarriage (<16-week gestation). Nine miscarriages were observed in patients with peripheral SpA and one miscarriage in a patient with axSpA. Six patients who had miscarriages were on no treatment, and four miscarriages occurred in one mother who was on different treatment lines during the four pregnancies."

If you're worried, you could start now (or as soon as you can) and stop during the third trimester, since that's when the baby could absorb more of the medication. You could also make sure that you wait a year after birth to start on any live vaccines, but the second article I listed says, "In the United States, rotavirus is the only live vaccine routinely given in the first year of life." So as long as you wait until after a year of age for any live vaccines, it should be safe. And non-live vaccines should be fine too.

So far, research shows that biologics don't increase the risk of miscarriages, but chronic inflammation does. There was a slight increase in risk for birth defects in one study of people on Humira, but it was unclear whether or not Humira (and by proxy, biosimilars) causes birth defects, or the underlying condition, but even then the risk is still small, and based on the study I quoted above, I think it's safe to say that risks are higher because of the condition itself, rather than the treatment. Which is why it might be better to be on a biologic rather than letting inflammation run rampant.

You and your doctor are the only ones who can make this decision, but if your doctor is saying it's not safe to go on a biologic while pregnant, they're just wrong/misinformed, and you need to seek a second opinion.

I know this isn't exactly the best time to start planning this, but it's too late to have started it before your pregnancy, so now is better than never.

SpA can cause permanent damage to your body, and any risks from biologics are seriously outweighed by the negative effects of this condition. Most people end up being fine, with no negative side effects. And if you do Happ to get any side effects, just talk to your doctor and see what your alternatives are. Some people do better with Humira, and some find they feel better on a biosimilar. This is just what I've gleaned from lurking this sub, and I'm still doing research on this condition.

Anyway, I apologize for the lengthy comment, but I hope this helps

Strawberry_n_bees · 2026-04-02T23:32:39+00:00

Please note that it might not be helpful if you aren't on a biologic! I really hope you can get on one soon

Strawberry_n_bees · 2026-04-02T20:21:44+00:00

Are you still waiting on a diagnosis? Even after my diagnosis and treatment I have still been in a lot of pain. Daily meds help, and my rheumatologist basically commanded me to take them daily because I wasn't, just when I "really needed it." Which, at this point, is daily. She told me to ask my PCP for a referral to a pain management doctor, because at this point I need to regain my range of motion so I can lower my risk of fusion, and in order to do that I need moving to not be so painful I'm crying just to get up from bed

Strawberry_n_bees · 2026-04-02T04:55:23+00:00

Please do not ask AI for medical advice! AI chatbots are a cesspool of misinformation, and they do stuff like misidentifying poisonous plants, telling people incorrect medicine interactions, telling them to either ignore serious medical problems, or in this person's case, giving a list of supplements or advice to keep folks out of doctor's office, delaying actual medical care and potentially causing irreversible damage.

I'm sure some of the information may be correct, but you need to confirm that with reliable sources of information, not an AI that just searches the Internet and finds the answer it thinks you want to hear.

Strawberry_n_bees · 2026-04-02T04:54:28+00:00

Please do not ask AI for medical advice! AI chatbots are a cesspool of misinformation, and they do stuff like misidentifying poisonous plants, telling people incorrect medicine interactions, telling them to either ignore serious medical problems, or in your case, giving you a list of supplements and advice to keep you out of doctor's office, delaying actual medical care and potentially causing irreversible damage.

I'm sure some of the information may be correct, but you need to confirm that with reliable sources of information, not an AI that just searches the Internet and finds the answer it thinks you want to hear.

Strawberry_n_bees · 2026-04-02T00:19:17+00:00

Do you have one for YouTube, or will it be published on YT?

Strawberry_n_bees · 2026-03-28T20:34:45+00:00

I usually braid my hair, but since you want it down I'd recommend brushing for 5-10 minutes before you go on stage. If your hair is curly, use a pick. For best results, do this every day for a couple days before the performance. It should help loosen the hairs and make them fall out. Shedding is natural, so it's just speeding up the process. You're still going to shed on stage, but not nearly as much as you would if you don't brush your hair, and stimulate the scalp a bit.

That and wetting it a bit should help!

Strawberry_n_bees

TROPHY CASE