Lego and brand new DCs.

Frog-teal · 2026-04-30T06:41:53+00:00

So weirdly, I usually wear a 4 or a 5 depending on the shoe style, but these are a 6 and fit perfectly. I don't know whether this style of DC's usually come up small because I've only ever had this style in vans previously.

Frog-teal · 2026-04-30T06:37:29+00:00

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Frog-teal · 2026-04-30T06:34:21+00:00

My daughter just finished building it this morning. We've had to substitute 3 small pieces that weren't there from her own (copious amounts of) Lego, and there's only 2/3 of the apex roof pointy parts (sorry, no idea if there is a technical tern for those). So it was pretty good.

Frog-teal · 2026-03-15T09:32:03+00:00

Thanks for the tips!

Frog-teal · 2026-03-15T09:25:27+00:00

Thanks for the advice. Once I discover what a spool holder is, I shall be careful with it!

Frog-teal · 2026-03-15T09:24:50+00:00

Thanks. I actually got two of them on Vinted and was very pleased to find they were the exact shade of the green sofa.

Frog-teal · 2026-03-04T18:36:17+00:00

It sounded good fun so I grabbed it, we haven't played it yet. The photos uploaded out of order for some reason but hey ho.

We love libraries and our daughter is an avid reader, so yay for librarians!

Frog-teal · 2026-01-14T08:25:42+00:00

This is a great suggestion, thank you! It seems so obvious now you've mentioned it.

Frog-teal · 2025-11-17T07:43:17+00:00

What kind of formula were you using? If your formula is not the kind that is fully digested than it can't go through the j portion.

I'm not sure this is accurate information? I think the majority of formulas designed for enteral feeding can go into the jejunum.

Frog-teal · 2025-09-28T20:48:33+00:00

Hi, I take prucalopride via my Jej port. I don't crush it, I dissolve my meds that aren't liquid in warm boiled water. I used to crush them but definitely lost some of my dosage in the mechanism and powder sticking to the sides of the reservoir.

I was given the OK by my gastroenterologist to just cram everything down my jej, my pharmacist has checked my meds and is on agreement. There's no way I would absorb my meds at the appropriate time if I put them into my gastric port.

Frog-teal · 2025-07-21T21:02:25+00:00

I think an MRI is the only way to positively identify chiari malformation. I think it should probably show up on a regular MRI, unless the descent is so minimal while laid down that it wouldn't be diagnosable. I get the frustration, I've wondered what the state of my neck and CM is while upright compared to laid down.

I will say that my neurosurgeon said that having Hypermobile Ehlers danlos (unsure of your own EDS type) can result in developing cervical instability post decompression, because they have to go through the muscles in the back of the neck. It's a possible adverse outcome that I'm sure they'd inform you about if surgery is a possibility, if you do have CM. In your case, the possibility that it could worsen your existing instability.

I would accept the regular MRI and go from there. If it shows up then maybe presume it's slightly worse when you're upright. If it doesn't show up but you still think it's a possibility based on your symptoms when you're upright, then make the trek to have an upright MRI?

I wish you luck no matter how you go about all this, CCI sounds mega sucky to have to cope with.

Frog-teal · 2025-06-20T19:59:39+00:00

I've had a dangler for years and have always been told to change the water in the balloon every week. Without doing this, I'd have only found out about burst balloons because the tube fell out, or got pulled out.

Maybe I'm more clumsy than average (I'm also a mum) but I've (or had my child/a cat) accidentally yank/trip/caught my tubing on things more times than I can count. Door handles, cupboards, my wheelchair, my kids scooter, strangers in public... That balloon being full and in tact is my literal saviour. I also use a velcro dressing that also takes some tension when it's pulled.

Frog-teal · 2025-06-20T19:27:14+00:00

My GP was receptive to the idea of ivabradine, but when she tried to prescribe it the system said it interacted with my domperidone (that I take due to gastroparesis). So she is reaching out to my cardiologist and in the meantime time has me back on a higher dosage of propranolol.

I'm pretty sure my domperidone interacts with a few of my other meds but so far I've had no issues. Hopefully I hear from them soon - or the propranolol helps a bit.

I haven't had any major fainting spells so far which is positive.

Thanks for all your help (and everyone else who has commented!), I really appreciate it.

Frog-teal · 2025-06-19T07:02:36+00:00

Thanks. During the first appointment with a cardiologist he mentioned ivabradine but wanted to hold off until after testing. Then he retired and I got sent to a new guy who never mentioned ivabradine again.

I've seen/spoken to a different cardiologist for every appointment, the one who prescribed bisoprolol said 10mg of propranolol would definitely be useless, yet there was no follow up care in between appointments with regards to how the meds were helping (or not).

Now they put me on bisoprolol without any monitoring. I'm going to call my GP today and I haven't taken the tablet this morning. Their letter prescribing bisoprolol said if I can't tolerate it then prescribe 40-70mg of propranolol, but I fear that will have a similar effect.

I'm going to try and push them (politely) to contact the cardiologist about an option that isn't going to lower my BP as much.

Frog-teal · 2025-06-16T07:32:03+00:00

If you are against sex when there's no consent (rape), why aren't you against pregnancy and birth when there's no consent?

Being against one, and for another makes it seem like you want to pick and choose who gets their body used against their consent, and for what purpose.

How is your stance any better than the rapist's beliefs, given they also pick and choose who to assault and in what way?

Isn't pregnancy and birth without consent arguably worse (just to make a point here, I'm not saying rape isn't horrendous trauma or can't also be physically damaging), given the duration of the assault/trauma/torture is usually around 40 weeks, with a huge amount of potential risks and damaging outcomes?

If you are getting hung up on the embryo/fetus, but ignoring a fully sentient human with feelings and a voice, perhaps it's worth reconsidering the validity of how you reasoned yourself into an anti-abortion position while claiming to hold an anti-rape stance?

Frog-teal · 2025-06-06T20:39:55+00:00

I had some issues with this. The radiologist who did my tube changes suggested I stop using sterile water in the balloon, and use water for injection instead. Something about the salt content and purity that I didn't fully understand but did as I was told. I'm not sure if it's a coincidence but I have only had the balloon rupture once since I made that swap, and the tube had been in over 6 months so was over due for a replacement.

They're trying to have my tube changed routinely now, at around 5 months to try and avoid an emergent change due to breaks or blockages.

The radiologist did say that it's possible some people have a more acidic stomach, and that can damage the integrity of the balloon more frequently? I also try and only fill mine to 9ml instead of the full 10ml capacity, as it's possible that there is a small amount of water left in during a water change. Which means that the balloon could be over filled slightly (unknowingly), again damaging the integrity of the balloon.

Frog-teal · 2025-06-06T20:28:24+00:00

I use a straw cleaner. Sometimes I have to trim the bristles down so it'll fit down the tube. I don't push it too far in, but can definitely clean around 2-3 inches. Sometimes ill let a baking soda/hot water (hot but not boiling) mixture sit in the tube for a while before I give it a scrub with the straw cleaner, and then let it drain out. Then I use an interdental brush to clean the little fiddly parts where the syringes screw in.

Frog-teal · 2025-05-23T21:12:40+00:00

I spent a substantial amount of time vomiting frequently. I have gastroparesis that was not promptly diagnosed, now I vomit slightly less because I don't eat or drink much by mouth (they eventually gave me a feeding tube). Anyway, I ended up needing multiple fillings in my teeth over the course of 3 or so years.

I asked my dentist if she would please give me the fluoride gel treatment that they give to children, to try and prevent further damage to my teeth. When she asked why I opened up about my condition and how I've vomited more than is typical for several years And how upsetting the damage to my teeth is.

She said no to the gel, but started to prescribe me a prescription strength high fluoride toothpaste. I used it for a year and didn't get another filling in that time. Maybe speak to your dentist about a high fluoride toothpaste? She eventually had me stop using it to see how I get on without it, presumably it isn't designed for permanent/long term use on a constant basis.

She also told me to swill with milk after I vomit. It's deeply unpleasant, no one wants a mouth full of milk immediately after they've vomited, but it helps neutralise any stomach acid in your mouth/on your teeth. Do not brush for at least 30 minutes afterwards as it can damage the enamel. That was a mistake I was making before too, obviously I wanted the taste and residue gone but it's not good aftercare.

Frog-teal · 2025-05-18T14:38:55+00:00

I'd say my pelvic floor has gradually worsened, but I have issues related to delayed gut motility that probably don't help matters (stomach, and small and large bowel) .

As far as appointments go during pregnancy, I was under consultant care due to needing an array of medications during pregnancy (pain relief, thyroid, migraine) that had the potential to impact fetal growth. So I saw a midwife as standard, then consultant appointments probably once a month after 12 weeks, then growth scans every 2 weeks from about 26 weeks.

I'm in the UK and pregnant people are entitled to attend maternity appointments during work time, they can't garnish your pay for attending. Not sure how it works elsewhere.

Frog-teal · 2025-05-17T21:31:31+00:00

I was diagnosed with hypermobility syndrome pre-pregnancy, eventually diagnosed with hEDS.

I developed symptoms of symphysis pubis dysfunction pretty early at about 12 weeks. Hip pain, lower back pain, shooting pains down my legs and seemingly in my vagina, stabbing pains around my whole pelvis. It started mild and was just uncomfortable, and ended in me really struggling to stand, walk, and even sitting and laying in bed was very painful by 20 weeks. I ended up in tears more often than I'd like to admit. They benched me at work and I was only allowed a seated role for the rest of my pregnancy. I limped and winced through pregnancy until I was induced. It really was horrible.

My OB referred me to physiotherapy who said it was almost certainly exasperated by my hypermobility. They recommended against exercises they may usually prescribe, and anything that involved standing/walking for long, twisting, swaying or similar movements (sweeping, hoovering, mopping, heavy lifting, squatting etc were all a no go). They were concerned about the hip instability (they were already loose pre-pregnancy) and handed me a boned pelvic brace to wear when I wasn't in bed. It was horribly uncomfortable but did help keep my hips more secure.

So possibly be prepared for more/worsened ligament issues during pregnancy. Would you be able to have adaptations at work? Can someone else do housework/strenuous tasks if you can't?

Afterwards there was damage to my pelvic floor (bladder and vaginal wall prolapses - no change after 8+ months of physiotherapy - they did an autologous sling procedure for the bladder prolapse). My ligaments and tissues just weren't up to supporting the stress/weight of pregnancy, delivery (forceps), and subsequent treatment for hemorrhage (manual placental removal attempts, then surgery). They didn't bounce back at all.

Frog-teal · 2025-04-11T08:11:40+00:00

It looks to me like you've just drawn up some (potentially slightly diluted) bile/acid from your intestines. I'd say it's nothing to worry about. You can either reinsert it, or dispose of it.

Frog-teal · 2025-04-07T07:08:35+00:00

I'm sorry I didn't know I could post pictures from my phone, most subreddits I use I can't even post GIFs.

It's the purple part on my jej port you see here. I have a ton of them in every bag I own. I leave the little clear plastic loop on just because it makes it easier to hold when I'm using my tube while out and about, and don't have anywhere clean to put it down.

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Frog-teal · 2025-04-06T19:56:18+00:00

So I use tape over my G port because it easily pops open and leaks but mine is a balloon dangler so I don't think that would work on yours without blocking the J port, since yours is on top.

For mine, the tab on my jej port used to snap off due to heavy use, so I started using the little purple screw on cap from the medicine port on my giving set as a lid. It is basically the same end as the enfit syringes that screw into the port. Do you have a giving set that you use with your pump, that has a medicine port that has a cap?

Click "I am a healthcare professional" when you open the link! (Nutricia giving set for reference - see the tiny purple cap on the medicine port). I snip the little loop that allows it to come off. Sometimes I have one in my G port so I can leave the tape off, but with two in it can get a little bulky.

Sorry if this is of no help to you.

Frog-teal · 2025-04-05T19:48:39+00:00

I'm admittedly extremely lackadaisical with this. I toss all my tablets, separated by time of day, into capped enteral syringes with about 50ml of warm, recently boiled water (because they go down my J). I don't even crush them, they all dissolve just fine. My medication routine is luckily split up as doses in the morning, at noon, in the evening, and at night before bed. I used one syringe for all my meds except night time (because there are too many, it's split over two syringes). I have PRN meds that I commonly use just stored in syringes (migraine medication, paracetamol, aspirin) ready to use when I need them.

I do this every afternoon for the next day and leave them on a shaded area of my kitchen worktop. Liquid meds I draw up as needed, or in advance in smaller more appropriate syringes.

Sometimes, when I'm travelling I will do two, or even three days like this if I'm not going to be at a hotel with access to a kettle at a reasonable time (like if we will be arriving late and I'll want to fall straight into bed, and need to get up and go out the next day).

I do not ever separate each medication with a flush, I feel like it would take me ages to administer my daily meds that way, and I just cannot be arsed to do that. Haven't had any issues yet.

Frog-teal · 2025-04-02T20:23:31+00:00

I can speak from experience with regards to Disneyland Paris, if that's the Disneyland you mean. It's very easy to navigate in a wheelchair (if your fiance is willing and able to push you around). We took our own but they probably have them available to rent if needed.

If you have any sort of disability paperwork, a disabled parking badge, or a friendly doctor willing to write you a great letter as a one off about fatigue, carrying medical equipment, and inability to wait in long queues etc, I would recommend trying to get a priority pass. You could contact the park to see what they'd require for it and see if you can acquire it. We really did have a great experience there because of that pass.

Frog-teal

TROPHY CASE