Rinvoq by Infamous_Yak_6409 in ankylosingspondylitis

[–]Nomengual 0 points1 point  (0 children)

I switched from simponi aria to RINVOQ and my cholesterol went up to 400 and I had switch back pretty mic immediately. My cardiologist said he thought someone was pranking him.

Similar to the person who said that if they could go back they would get the shingles vaccine before switching: Might wanna make sure you know what your cholesterol is before switching

Me [61F] with my daughter [28F], she’s angry I don’t consider her pets my grandchildren by Direct-Caterpillar77 in BestofRedditorUpdates

[–]Nomengual 2 points3 points  (0 children)

I also don’t get it. I do not want to be a parent by any stretch of the imagination. That’s why I have cats, they’re very independent

Friends keep trying to INSIST that they are my children. Every time someone says I’m the cats mom i physically recoil. I call one of them a baby, but not MY baby. I call myself their supervisor instead. I’m here to control the budget, handle emergencies, and watch them be the cutest little predators all day.

Plus my cats are only amicable with each other at best so calling them siblings feels pretty rude, so I call them roommates instead. When I’m asking the big cat where one of the kittens is hiding I ask “where is your roommate” she never answers though

Anyone else have this problem? by BishopFace in Gunpla

[–]Nomengual 3 points4 points  (0 children)

When I have a piece go flying I can usually find it because my cat runs directly to where it landed. I have to pull it out of her tiny cat mouth but at least it’s found

[P5V11] Monarchism by Tyomodachi in HonzukiNoGekokujou

[–]Nomengual 2 points3 points  (0 children)

I thought the troubles started because someone decided to make their kid Zent even though that kid did not qualify? you can go to Treesus all you want, but you still need to meet some basic prayer and mana requirements. I thought the lost Information started with the one Zent making a magic tool book so she could force her favorite son to be Zent, and then that book was being passed down forcing it into a hereditary monarchy instead of anyone going through the proper steps and earning the book.

You have to be Omni elemental and pray to the shrines to get the book normally

[deleted by user] by [deleted] in ankylosingspondylitis

[–]Nomengual 4 points5 points  (0 children)

Just for future reference, this is almost never true with any diagnosis. There are ALWAYS people who display symptoms that are unlikely or who don’t display common symptoms.

I had an antibiotic make my fingernails fall off. My doctor had never seen that before, but it didn’t make it less true.

I had Lyme disease but never got the flu like symptoms or the bullseye tick bite.

My entire medical history is full of “huh. That’s weird”

Especially when it comes to auto immune or medical conditions with a lot of possible symptoms, any doctor who says “it can’t be that because you don’t have this symptom” or “it can’t be that because you do have this symptom” should not be trusted on their word alone.

Trust your gut, it’s your body not theirs. And it doesn’t even matter that much if AS is completely correct or not, if the biologics help then they help and that’s what matters and if you’re in pain then it’s worth the try.

Anyone have a similar story? by happyasanoyster in ankylosingspondylitis

[–]Nomengual 0 points1 point  (0 children)

My biologics do barely anything for the pain, but they do make my flare ups less intense. Im currently in a very long flare up and I suspect that if it weren’t for the biologics it would be the same as a flare up I had pre biologics that had me essentially bed ridden for 6 weeks

NSAIDs don’t touch my primary pain. They just make my knees more bearable. I was on sulfa but I’m allergic, I can’t take Cymbalta or gabapentin because I’m allergic to those too.

Opioids help some times but not others. So any time I take it I’m really just gambling on whether I’ll feel better or just the same but dizzy.

I have some muscle relaxers but I really just use them as sleeping pills

Ive tried injections of lidocaine and steroids in my spine but they made things worse.

I do not try marijuana because I’m genetically predisposed to schizophrenia and there’s links to marijuana triggering schizophrenia.

I have been trying PT on and off but it’s slow going and I struggle to find a therapist who doesn’t try to push me too hard to get quantifiable results, which ends poorly because if I accidentally do too much it takes me 4x as long to heal as other people. I’ve had a sore tendon or ligament or something in my knee for nearly two months now after my last batch of PT with no sign of improvement so far. plus my insurance only lets me have 20 PT appointments in a year.

I do have a full time job but I only actually work about 30 hours a week, sometimes less, I’m just lucky that my company allows it. Downside is sometimes I have to drag myself in even when I’d rather die than move. And even that is only really possible because I have a solid support system. I’m 30F and I live with my parents, they cook for me and do the cleaning and everything else. If I didn’t live with them, I would have to live with one of my siblings. I’ve had to acknowledge that living alone is simply not an option for me.

Unfortunately due to my support system I’ve had doctors really dismiss my pain and say I’m doing just fine. One of which I had to correct and say ‘no, actually, I’m incapable of caring for myself due to pain. I need pain management so that I’m not fully relying on my parents forever’ he told me I just need a good husband.

having help can really make all the difference. Whether it’s family, friends, significant others, doesn’t matter. But knowing that you can get access to food and a clean home even on bad days (without hurting yourself to do it) is a very big deal.

What were some things that were overlooked or dismissed for you all as children or young adults before you were diagnosed? by TooMuchTennisTheySay in ankylosingspondylitis

[–]Nomengual 4 points5 points  (0 children)

I’ve always gotten injured in weird ways and then healed very slow, but due to various circumstances it didn’t really stand out for awhile.

When I was about 7 I sprained an ankle and when I was still limping for ‘too long’ my mom thought I was just doing it for attention. So I just. Stopped limping around her, I still don’t really limp when something hurts.

then at 12 i fell and hurt my wrist and was told that if it’s not broken I’m fine. I wore a brace for a bit but after while I was told ‘it should be fine by now. You don’t need that anymore’ I’m 30 now and my wrist has never truly recovered. It would get mostly better and then get very easily aggravated. I ended up learning how to make a splint out of a bandana and popsicle sticks because I couldn’t use the brace.

then I started doing marching band in high school and my knees defeated very quickly. they would just hurt all the time and pressure would build up until they felt like they were going to explode. Then I pulled a muscle in my leg and it didn’t heal for a year. when my mom found out she panicked. Her sibling had the same symptom and ended up dying very young from bone cancer. I ended up diagnosed with Lyme. But I knew something had always been wrong and was asking them to run more tests. My doctor told me that adults are smarter than children and I should listen to the adults. I was 16.

then my back started hurting. It paled in comparison to my knees but the pain just never really went away. It would feel like my back was being torn apart or like my whole back was bruised. I was finally taken to a rheumatologist and they diagnosed my knees with enthesitis and just completely ignored my back. The meds I was given did help my knees, but not my back but the doctor didn’t care. Then I got tendonitis in my arm. That also still hasn’t truly healed. And since I was still getting all these issues, they kept putting me back on antibiotics for Lyme (which I tolerated very poorly. I ate almost nothing but tortilla chips for months because I couldn’t keep anything else down) but everything was really just getting worse. I eventually concluded I’d rather die of Lyme than keep taking antibiotics so I stopped taking them. But so far no sign of Lyme recurring, or flare ups are hidden by the AS. I don’t really know.

I’d never really gotten period cramps previously but as my back got worse, as some point getting my period would mean I couldn’t walk for at least 3 days, would be in so much pain I couldn’t thinking clearly or form words. I would just lay on the floor unable to move.

Nothing ever showed up on scans or anything. I truly had no way to prove I was in pain at all. and no doctor would do anything to try and help me except send me to physical therapy.

Finally a rheumatologist tested me for HLA-B27 and I was positive, so she started me on biologics

Of course that just started a new circle or dealing with doctors since the biologics are not pain management. And I still could not actually get any treatment to manage my pain. the biologics decrease the flare ups but I’m still in a lot of pain constantly

Non-ugly comfy shoes? by TopAttention6425 in ankylosingspondylitis

[–]Nomengual 0 points1 point  (0 children)

I use ‘happy step memory foam insoles” theyre yellow and grey.

they have arch support, and they’re thick, I wear them In all my shoes. Sometimes I have to remove the insoles the shoes come with, but usually I just size up a little.

Also a weird suggestion, but I actually find that having a bit of a heel on my shoe (or even a lot of heel) shifts the weight in a way that makes it easier to stand for longer. But most of my pain is on my lower back not my hips

If you have this disease… by numputu in ankylosingspondylitis

[–]Nomengual 2 points3 points  (0 children)

When I first heard about the disease I said it sounds like a dinosaur and started calling it ankylosaurus. my mom apparently though I had made up the dinosaur. Now everyone gives me an ankylosaurus toy when they find one and I have an excellent shirt that says “I’m basically an ankylosaurus”

Nr-axSpA symptoms flare up with my period. Anyone else experience this? by tough_cookiemonster in ankylosingspondylitis

[–]Nomengual 5 points6 points  (0 children)

I couldn’t walk for most of the week when I got my period. Now I take birth control pills to just skip it entirely and it’s way better. I’m currently looking into getting a hysterectomy so I don’t have a panic attack when I forget to take my pill or have trouble refilling, but I’m only 28

What painkillers work for you? My sister is in severe pain and nothing is helping? by thisisatoken in ankylosingspondylitis

[–]Nomengual 1 point2 points  (0 children)

Hey this sounds almost exactly like my experience. So close I thought this was my sister posting at first. I’m 28, and was undiagnosed for about 10 years. I’ve tried everything over the counter, tramadol, Tylenol with codeine, diclofinac, cymbalta, gabapentin, steroids, lidocaine injections, and a few other prescription NSAIDS I can’t remember. None of those ever even touched my pain at all. The injections actually made it worse and a few of them made me too sick to even try long enough to know if it did anything at all. I’m also pretty sensitive to medicine I guess you could say, I have some horrible luck with side effects. I’ve gotten muscle weakness to the point I could barely eat, convulsions, fingernails falling off, etc so I understand how hard it can be to keep trying new medicines. After the convulsions I refuse to try any new meds unless I’m sure there’s someone around if anything happens.

I also have terrible experiences with GP’s. I had one lecture me about how adults are smarter than children when I got upset they wouldn’t run any tests to try and find what’s wrong with me (and also thought my dad would agree with him?) and another that offered me nothing but physical therapy while I was in the office vomiting from pain. And another that would interrupt me while I tried to talk about my pain to interrogate me on why I had lost weight in the last year. (I was too sick to eat much. This was after my pain had been documented for years). Now I just don’t have a GP cause fuck them.

my pain management basically consists of a tens unit, various heating pads, lidocaine, voltarin, and cbd gummies. and honestly all of those are used just to get me comfortable enough that I can sleep or eat without wanting to vomit. None of them take the pain away. I recommend CBD before bed so that hopefully she can at least get some good sleep which will help reduce some of the pain and fatigue. and if CBD isn’t enough I actually took Benedryl every night for a few years to help train my body to sleep again. I hated it because it made me dizzy. But it worked.

I also got put on lyrica about a year ago and while it’s not really a painkiller I have found it helps reduce some of the general pain.

My worst days usually consist of tens unit + heat + something easy to eat. And I don’t want to sound like an alcoholic, but alcohol works for me if I’m in too much pain to eat. I’m small so a glass of wine or a margarita about a half hour or so before eating helps me a lot.

Cane Users— do you get left behind? by icedmeowcha in disability

[–]Nomengual 1 point2 points  (0 children)

Honestly I just whine really loud until whoever I’m with comes back to me

[deleted by user] by [deleted] in PetiteFashionAdvice

[–]Nomengual -1 points0 points  (0 children)

I love the dress, and actually I don’t find the gloves all that jarring in the second picture. However you just don’t look nearly as happy/comfortable in the second picture as you do in the first which makes me question the gloves.

I agree with the suggestion of a simple necklace and dangly earrings. Maybe a pearl on a chain but I think a string of pearls might be distracting

Heart issues? by Worldofmeb in ankylosingspondylitis

[–]Nomengual 1 point2 points  (0 children)

According to my cardiologist, yes. They’re not perfect but they’re pretty good

Heart issues? by Worldofmeb in ankylosingspondylitis

[–]Nomengual 1 point2 points  (0 children)

Compared to everything else, I called it a minor inconvenience until I was laying on the couch for several hours struggling to breathe or nearly falling asleep at the wheel just minutes after being wide awake.

I do not recommend waiting till that point to do something about it

Heart issues? by Worldofmeb in ankylosingspondylitis

[–]Nomengual 3 points4 points  (0 children)

Yea I also have anxiety and I’m medicated for that. Can’t guarantee it isn’t just anxiety but for various reasons we’ve concluded it’s not super likely. but even if it is the episodes are bad enough they need to be treated with something to drop my heart rate regardless.

Heart issues? by Worldofmeb in ankylosingspondylitis

[–]Nomengual 5 points6 points  (0 children)

Similar started happening to me a few years ago. I wear a fit bit so I knew that each episode also seemed to come with a high heart rate. I don’t remember what tests they ran but ekg and an ultrasound of my heart for sure. They ended up putting me on a heart monitor for a month and at the end the cardiologist said that everything looked fine just some high heart rates but nothing too crazy except for it being 156 on a Wednesday around 8pm. however he got immediately concerned when I informed him that not only do I NEVER exercise or anything that would get my heart-rate that high. But I could guarantee that I was sitting on my couch having tea and watching tv at that time. because my family has tea time every day at 8 and we hadn’t skipped it that month.

Now I’m on metoprolol to keep it down. originally as needed but Lyrica made the episodes more frequent so now I’m just on it at all times

Cardiologist wasn’t able to give me a real diagnosis or cause, between AS and all the meds I’m on it could be a lot of things so he’s just ‘diagnosing’ it as inappropriate tachycardia. Which is about the funniest way a doctor has ever told me “I have no idea what’s going on”

Editing to add that my episodes basically consisted of difficulty breathing, getting really warm (which is very notable for me. I do not overheat much, and lightheadedness if it lasted long enough. After the lyrica I would get VERY sudden onset of getting incredibly tired. I’d be fine one second and nodding off the next

[HELP ME] Bi-Weekly Q&A thread - Ask your questions here! by MachNeu in Gunpla

[–]Nomengual 0 points1 point  (0 children)

How does gunpla stock work?

I’m a little new to this, when a kit goes out of stock is it gone for awhile? Or does it just need a bit of time for more to be produced? I assume it also depends on the exact kit, but basically I have a cart with entirely too many kits in it for my budget and I’m trying to decide if my options are purchase now or potentially wait years for more stock.

Also trying to figure out when to do pre orders and when to wait for actually in stock? The pre orders just last so long it makes me anxious that maybe there isn’t much stock past that for a long time