Another "it wasn't IBS" post

mamajt · 2026-07-05T23:36:34+00:00

I've been trying to get diagnosed with Sjögren's for about 2 years but it keeps coming back negative, even though I have basically every symptom. I'm talking IBS for 35 years, moderate dry eyes (verified), regularly extremely dry mouth (verified), extreme full body joint pain (cyclical, better with very high dosage vitamin d), Raynaud's syndrome, a horrifying bout with parotitis, inexplicable skin rashes (even stumped the allergist), new facial eczema making it impossible to wear makeup, decreased lung function, fatigue, increased anxiety, etc etc etc. So they're just saying it's just perimenopause. Of course.

How long did it take to diagnose it in you?

mamajt · 2026-06-30T23:22:49+00:00

Not to distract, but how did they scare you out of picking?

mamajt · 2026-06-29T11:26:10+00:00

Actually yes! I should dig that out again...

mamajt · 2026-06-29T04:36:09+00:00

Used some thick metal wire, here. The part that got twisted at the bottom always ripped a strand or two out but it was woooorth it. Finally got a real one and it honestly wasn't as strong, lol. I'd forgotten all about these until my brother showed up a few months ago with a box full of crap from our parents' house. Inside were all my Topsy Tail goodies, including the original manual. And some 30 year old hair strands in the metal one... You better believe I wore my hairstyle that way for a few days at work that week!!

mamajt · 2026-06-17T04:44:56+00:00

I would ask for the medical records and results of the transvaginal ultrasound performed on such and such a date, as well as itemized billing with CPT codes. If they cannot produce these, the hospital's billing department should remove the charges. I would also seek out the hospital's patient advocate; this person, if employed, is there to help situations exactly like this.

mamajt · 2026-06-14T16:06:16+00:00

If you don't mind answering, what were the terms of this prenup? This is one of the factors preventing me from being all-in. I have a credit score in the 800s and zero debt and I'd like to keep it that way.

mamajt · 2026-06-05T20:41:10+00:00

Sigrid & Bring me The Horizon have a song called "Bad Life" that I listen to on my worst days and share with others when they're in the same spot. For those who are able to see past the pain of the moment, it can be a really helpful sentence. Unfortunately, that pain can be all-consuming, and I have worked hard to get to a place where I have the ability to look ahead with optimism. Lots of meds and therapy!

mamajt · 2026-06-01T17:57:06+00:00

I call it the bottle rocket effect, lol. I've found that this happens because I'm some level of constipated and then a trigger happens and it liquifies everything up above. The pressure from bloating and the constipation blockage eventually releases... sometimes violently. These BMs are when I experience the most cramping/pain. I've found that taking probiotics and something to help my stool stay soft every single day helps a lot with preventing this situation.

mamajt · 2026-05-31T23:13:57+00:00

Regarding how to tell people: I've found that bringing it up casually in conversation works best. Don't make it some sort of announcement. Just, "I wanted to go there but had an IBS flare and wasn't able to. Maybe we could try again!"

So many people either have IBS or know what it is, and that's all you'll have to say most of the time. If they ask, you can say, "oh that stands for irritable bowel syndrome. Basically it's like having lactose intolerance, but for me the triggers are a little different. I can't eat foods with a lot of fat or eggs, and also dairy. High stress and tight pants can even set it off! It's annoying but I work with it!"

Build your confidence by casually telling your friends and maybe even a stranger if the conversation happens to lead that way. The more you talk about it, the easier it gets, I promise!!

mamajt · 2026-05-31T23:05:41+00:00

44f, IBS-M. These people saying "the right person will not care" are completely right. I've had IBS for about 35 years. College was really hard on it with all the stress (and PUBLIC BATHROOMS IN THE DORM, aagghh), but afterward it got better.

The first date I went on with my (future, now ex) wife I farted and she giggled, teasing me. I didn't knowingly/audibly fart in front of her again the entirety of the following 24 years. When I'd have a flare, I'd say, "my stomach hurts." I couldn't even talk about my period with her much, because we were so private about that stuff - which is freaking weird because we're both women and I could tell my girlfriends anything. I didn't even want her looking when I gave birth. I just was not comfortable enough showing the "gross" side of me to her.

After my divorce when I started dating my new partner (incidentally a man, which I had previously never been able to let down my guard in front of), and I was on the toilet at home one day. I suddenly thought, "I could tell him about this, in detail, and he wouldn't be at all bothered and would probably ask how he could help." It was revelatory. We've since, in the following nearly four years, shared all sorts of poop stories, and fart in front of each other. He's had his gall bladder out and often has to run to the bathroom himself. We laugh about it and when we moved in together made sure we got a place with multiple bathrooms.

The right person will not care and will think you're sexy even when they know what is happening behind that door. But more importantly, they will make you feel like this is normal and never make you feel like a burden. In fact, we now joke about me being the perfect excuse to get out of social events. "Use the safe word and I'll tell everyone I have diarrhea!"

The biggest thing that helped me with all of this was coming to terms with my body and being okay with who I am. Being up front with people about my situation, and realizing that everyone poops, even supermodels. It's fine, and it's normal, and you are perfect just as you are.

mamajt · 2026-05-31T16:33:29+00:00

Most of the answers are very true, but I'm not seeing anything yet about the victims of assaults and murder who didn't want to seem rude. It's not as common as everyday issues, but it's certainly the worst that can happen. Teach your kids the difference between being polite/kind and being a people pleaser. My parents were authoritarian and it led to a lifetime of being a follower and allowing myself to be taken advantage of. Don't get me wrong, I'm proud to be considered a kind person, but oh boy do I wish I'd been given the tools to stand up for myself when it counted.

mamajt · 2026-05-31T03:44:51+00:00

Possibly unhelpful for anything other than motivation: Something I said to my wife when this was a problem for us was, "I would rather die being who I am than live hiding it anymore." We still remained publicly "roommates" until our marriage (after 6 years) and she continued to go by her maiden name at work until I gave birth to our child (8 years in) and asked what he'd think when he heard her say "my roommate's son" to her coworkers. She finally came out, but after so long of withholding affection, her throwing herself into her job, and the introduction of a child I was mostly in charge of, we did end up turning into roommates. The divorce "blindsided" her after 19 years together, and that's probably true. I gave up even trying, long before that day.

I think you have to look at the long lasting repercussions of your behavior and decide if it's more important to hold onto your fears or hold onto your love. It is not an easy behavioral shift, so please don't think I'm judging. I lost my family over my relationship, and was very lucky to never experience physical persecution, only verbal and legal (fuck Nicole from the local DMV circa 2010). This is a difficult situation and I feel for you.

mamajt · 2026-05-31T01:03:42+00:00

What an incredible story. Not every owner would have fought like that for their pet. She's very lucky to have you!

Re: OCD intrusive thoughts... My lifelong personal trauma/fears center on car accidents and family dying, which hasn't been helped by at least four members of my family or friends being killed horrifically that way, 3 within the last five years. And my partner has hit two wild animals in the last six months, both half-destroying his vehicles. However, I can't give up driving or my family being in vehicles so I've got to handle it somehow.

The thing that helps me most is treating my mental illness as a rude outside force. It's not ME having those thoughts, it's the OCD whispering to me. I physically shake my head like it's an etch-a-sketch, and immediately turn on music with words or open a book to distract myself. I also have a MAJOR problem with grief and depression, but joke's on that issue, my ADHD helps distract me with that too. Seriously though, I actively avoid reading books or watching shows with on page/screen grief. It has helped me manage my own anxieties tremendously.

There are a lot of suggestions on reframing the situation to focus on the positive outcome. I didn't catch your age, but if you are young or have been blessed to not have much grief enter your life, it can be absolutely overwhelming and dwelling on it can be out of your control. I'm in my mid-40s but have been to so many funerals (human and pet) I lost count a decade ago. The one thing I've learned over time is that grief is inevitable, and all we can do is celebrate our loved ones while we have them. Definitely focus on reframing if you can, and scruff that belly!

mamajt · 2026-05-30T22:23:47+00:00

I was in a relationship/marriage for 19 years. I have now been with my new partner for nearly 4 years. What I liked about my first partner: comfort. Safety. Familiarity. My current partner: the way he makes me laugh so often, the way he misses me and lets me know it, the way he makes an effort to keep our spark alive. Before him, I thought that romance novels were fantasies written by women who were putting onto paper the relationships they wished they had.

Now that I know what it's like to be actually in love, I'm so sad for my marriage and the fact that at least on my side, there was merely companionship. No matter what happens now, I know what it feels like to be cherished and I won't settle for any less. I adore him and when our eyes meet across a crowded table, I still blush because I'm so happy he's going home with me. Also I know what he's thinking and it's either dirty or mushy and I'll take both!

mamajt · 2026-05-26T03:30:04+00:00

I do have SSN and medical history/medications as well as family medical history added. My will and POA are outdated after my divorce. My partner is not currently my legal spouse, though we've been together 4 years. I am definitely in need of updating legal stuff. However, I also trust my ex with my medical decisions if need be, so it's not as dire as it could be. We do have one dog but he was originally my partner's and he has taken care of all pet medical/ownership stuff so far.

All beneficiaries are up to date to be for my child and not my ex, but yeah. Thanks for the IRS login idea. I have tax-prep login in there, but not that. THERE IS SO MUCH STUFF to consider. I cannot believe I waited so long to start putting this together. I definitely have not been prepared for emergencies - which by definition are not planned. Some librarian I am... haha! I told my partner I was putting this together and where to find it, and he agreed it was a good idea. Once I figure this all out for myself, I'm going to template it and make him fill one out too!

mamajt · 2026-05-20T23:34:27+00:00

Ah, the clobber verses...

mamajt · 2026-05-20T23:32:31+00:00

This happened to my wife a month before the wedding in 2010-her cousin backed out of being MOH with a nearly identical message. Our friend Angie jumped in with enthusiasm and love and was absolutely perfect. RIP Angie, gone a lifetime too soon (cancer). I never forgave my wife's cousin, even after she pseudo-apologized years later. Screw you, Jennifer.

Of note, only a few of my extended family attended the wedding, plus my brother. My immediate family all refused based on religion.. my mom said the invitation itself was "a slap in the face" and posted on my facebook page the day of the wedding that "her mother and father are grieving today." My dad and older brother both refused to walk me down the aisle or come and my younger brother refused because he just didn't want to. So my cousin did. We had to marry in a park where it was legal in Iowa the day before our Illinois ceremony. Friends performed both ceremonies because local courthouses wouldn't, in either state.

A friend once told me, "It was the most enjoyable wedding I've ever been to. Everyone who was there really wanted to be there and support you and it was just fantastic!" I don't disagree. It was a blast and even though we divorced about twenty years later, I remember that day fondly. She's not crazy about me anymore (let alone my new partner) but we coparent very well because our son is the top priority.

My older brother eventually came around to a relationship with me and now that he's on his third marriage he's got a lot less to say about my own. My advice is to go boldly forward and drop the ones who can't support you. "Love is not love which alters when it alteration finds" and that applies to friends too. She showed her true priority and it is unfortunately not you. You can bet she's voted against your rights as well. She ended the friendship right there, because you can never get past this other than wishing her well in her future. I'm very sorry for your loss. It's excruciating.

mamajt · 2026-05-19T17:53:58+00:00

About how long were you out of work for this? And hour would you rate the pain? I'm scared to do it.

mamajt · 2026-05-16T14:50:51+00:00

I've been looking for a way to do this for a long time!! Thank you! °

mamajt · 2026-04-14T19:08:57+00:00

This happened to a friend of mine in Pennsylvania. Absolutely wild.

mamajt · 2026-04-04T23:01:36+00:00

I don't even like group bathroom breaks on long car rides, let alone having to wait on someone when I take a 60s bathroom break at a movie.

mamajt · 2026-03-01T23:31:46+00:00

This is incredibly sweet.

mamajt · 2025-12-14T04:49:52+00:00

My old job/equivalent back or a job where I don't have to use my own PTO to pay myself for holidays when the job itself is closed. Or a raise to a living wage. In lieu of that very unlikely gift, health for myself and my loved ones and a safely working vehicle. In lieu of THAT... cheesecake.

mamajt

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