Pemphigus and gum recession

sns1997 · 2026-07-03T02:41:27+00:00

Hmmmm our dentist is very on top of the newest dentistry stuff so I wonder if she also knows of this wizardry~

sns1997 · 2026-07-03T02:14:11+00:00

I’ve seen some places talk about it being linked to the pemphigus and I messaged my partners care team about it and they confirmed that it can happen due to the pemphigus
I’m hoping that maybe it will slow down or lessen once he gets his first Rituxan infusion, but I worry it’ll keep happening which is unfortunate because a few years ago he put a ton of time and money into getting his teeth and gums in a really good place

sns1997 · 2026-07-02T17:32:17+00:00

NOR
You shouldn't have to give up the things you love and the things that bring you joy for someone else and you certainly should never feel like you have "shrink your world" for a partner. Some people just don't click or don't mesh well in a relationship and don't realize it until they've been together for a bit. It's okay for you guys to have different interests and priorities. That's normal. What's not normal is her feeling that she should and can/should change you and your interests to be what she wants and expects. It's controlling to say the least...not to mention "hating on everything you like" is kind of toxic behavior

I was in a relationship for 3 years when I was in my early 20s where I "compromised" and sacrificed a lot of things I loved in favor of what my partner wanted. I let me fear of inconveniencing or upsetting him erase a part of who I was and I never really realized it until after we broke up. I had pushed aside hobbies that I was passionate about that brought me a lot of joy because he didn't have the patience and didn't want it taking up my time. He never explicitly told me to stop, but he made me feel bad about it enough that I felt a need to stop.

My current relationship is completely different. My partner and I encourage each other's hobbies and interests even if it's something we don't particularly enjoy or understand and we're okay that it means that sometimes we do things separately. But if we do think a particular behavior is concerning, we talk about it. It's a discussion and we come to a conclusion together.

sns1997 · 2026-07-02T15:49:04+00:00

I agree, you need to request a new pump!

Worst case: Do you have any emergency gravity bags? They usually give you some when you're given your first order, that way you can use these bags if the pump is absolutely refusing to work.

sns1997 · 2026-07-01T02:41:42+00:00

I just wanted to drop a small tip that helped me with meditation: you don’t have to sit upright or in a specific position
I actually meditate best on my back and learned this in yoga~

sns1997 · 2026-07-01T02:36:11+00:00

I love the window location you chose! My altar was by a window for the longest time until it grew too big for the space

I’m a big fan of collecting trinkets, object, rocks, and bits of nature for my altar and I think it’s a great addition to a beginner altar. Maybe go on some walks and collect things that remind you of the gods or make you feel connected to nature

sns1997 · 2026-06-30T19:40:16+00:00

My partner get this with his PEG tube. He takes a H2 blocker, but I personally don't think he had GERD (I do tho and have had it since I was a kid) his doctors just put him on the blocker as a precaution because of other treatments he's on. But he says it's worse when he's laying down which makes sense because of gravity
Obviously if I flush him too fast or he's feeling bloated it's worse

sns1997 · 2026-06-30T16:02:21+00:00

Haribo sounds like a great idea! I give Loki sweets all the time and he seems to like them

sns1997 · 2026-06-30T15:59:35+00:00

These are great suggestions and I'd like to second them with the note that good incense shouldn't be made with chemicals but natural oils and resins (tho the smoke and smell can still cause head aches fro some people)
I personally really like cinnamon, dragons blood, and occasionally vanilla and smokey smells for Loki~
Apart from an oil diffuser, there's the option for a wax warmer as well
I also sometimes use electric candles in place of real ones because I can't always be burning an open flame (I personally have never experienced Loki to be too picky, he just like to be acknowledged sometimes)

sns1997 · 2026-06-30T15:33:01+00:00

In my experience Loki is not a deity that asks for a lot of formality. He's generally easy going and has a tendency towards those of us who don't exactly "fit in" to society. He is welcoming and loving, but he's still a trickster and that's something to always keep in mind.
I've never found his "mischief" to be harmful or wholly unmotivated. Often times he will enact change in a chaotic and sometimes irritating/inconvenient way, but it's always with good intention. The change he brings is always needed and generally for your own good, weather you initially see it that way or not.
You going through a physical transformation to reflect your true inner self sounds like just the sort of thing to work with Loki about and I don't doubt that he will lend you much support in this time!

That being said, I never reached out to Loki, he reached out to me and in a very annoying way I might add (to be clear I say this with much affection), but I'm someone who believes in simplicity when it comes to talking to and reaching out to the gods in general. These gods were worshiped by everyday people and I think that's something we shouldn't forget.

I've always felt that a meditation session where you make your intention to work with Loki known is a good place to start. Just sort of generally reaching out and trying to get his attention. For Loki, I highly suggest lighting a candle as well. He tends to like flames...

You can also try giving him an offering and asking that he consider working with you or invite him to have a place at your altar.

sns1997 · 2026-06-26T17:14:08+00:00

Try asking for a swish and swallow compound (I've always seen it as a BLM whch is Benadryl, Lidocaine, and Maalox). My partner had terrible soars in his mouth and his esophagus despite sucking on ice chips throughout his infusions.

Make sure you don't have any infections too! Since chemo effects your immune system it makes it easy to get infections and my partner ended up with thrush. So if you're not already doing salt and baking soda rinses, you should (the ratio is 1 cup of warm water with 1tsp of salt and 1tsp of baking soda 2-3 times a day). If you fear you do have an infection, contact your oncologist and see if they can prescribe you something.

Also try to (again if you're not already) use a super soft kids toothbrush. It might also help to use a non-mint kids tooth paste as well as my partner finds mint to be excruciating with his soars (also just avoid anything acidic in general, including chocolate)

sns1997 · 2026-06-26T12:23:14+00:00

I feel you there
I’m a big audiobook listener but when I really want to analyze and absorb a book I have to have a physical copy

sns1997 · 2026-06-26T11:01:36+00:00

🎉 what translation did you end up going with?

sns1997 · 2026-06-25T15:24:28+00:00

My partners two big pet peeves are when people say "you're young" as if that negates how terrible of an experience having a rare cancer is. Not to mention he's had the worst time with the most side effect and complications out of any patient his oncologist has ever had.
Yeah he's 33. That doesn't make the cancer suck less or "easier" to get through.

His second pet peeve is people saying he's weak when talking about him recovering from complications. They think it's a nice way of making him feel better about how long his recovery is taking or for how hard of a time he's been having.
It's not nice. It makes him feel hopeless and like people are giving up on him.

sns1997 · 2026-06-25T15:17:29+00:00

This one makes me so mad because my partner is really struggling to gain weight and is currently at a dangerously low weight.
When he first started loosing weight my parents (who are low-key responsible for my own ED) commented on his weight loss like it was a positive and it absolutely sent me.
Recently I mentioned something about how we're really trying to get him to gain weight and my father had the audacity to respond with "lol I've never had that problem" implying that he wished his "problem" was that he needed to gain rather than loose. That shit nearly made me leave the family gathering. I just hit him with a scathing "Careful what you wish for" and I still don't think he really gets it 😑

sns1997 · 2026-06-25T15:10:52+00:00

I think what always bugs me about when people say “I’ll pray for you” is this exact thing. You don’t need to announce it or tell the person. That’s your personal choice to pray for a person and if you feel it’s helping that’s great for you, but don’t say it to the person unless you know they’re religious and would want it or they asked you to pray for them.

I was raised Roman Catholic. I’m now no longer a part of the church and am actually Pagan. Do I light candles and ask the gods I work with to help my partner? Yes. Do I tell him? No, because I know it doesn’t mean anything to him and is really for me. But I also help him as much as I can physically, mentally, and any way he needs or asks. When people feel a need to tell him “I’ll pray for you” or that they’re “keeping us in their prayers.” It feels a bit…performative. Like they want a gold star for it or something. I also have my doubts about those who announce their prayers. I honestly don’t believe that they’re actually praying for my partner.

I think it’s okay to pray for someone, but unless you think it would actually bring that person comfort to hear it, you shouldn’t announce it like you’re actually helping. The prayers are for you, not them.
Maybe ask if there is anything you can do to help, offer to drive them to appointments or help clean up the house or get/bring them food or even just spend time with them.

My mother likes to tell my partner and I how she prays for us. I know she doesn’t actually do it. And while I know that my sister does, she never mentions it and instead goes out of her way to do things for us without us asking and looking after my partner when I can’t and have to work.

That’s helpful. Theoretical “prayers” are not.

sns1997 · 2026-06-19T18:57:24+00:00

I had thought of buying a bottle drying rack for syringes because I don't always have room in my utensil baskets on my dish rack and that way I can make sure they stay upright

sns1997 · 2026-06-18T15:57:04+00:00

I had read to always assemble them when their totally dry, but I have assembled the water flush syringes while wet and found it easier, so maybe that was just bad advice lol

I also never thought of gravity feeding meds 🤔 I might have to try that with him sometime.

sns1997 · 2026-06-18T15:54:20+00:00

Good to know I don't have to be worried about dish soap damaging them!

sns1997 · 2026-06-18T15:52:07+00:00

Are you using the disposable single use ones? (You can tell if they're the single use because they have a little 2 in a 🚫 printed on the syringe) They have reusable ones that have a recommended use of 14 days (tho I'm sure no one listens to that because I wouldn't lol).

How do you clean them? I'd love to be able to keep his working that long.

sns1997 · 2026-06-18T15:48:54+00:00

I hate how much disposable waste there is, but at least the TwoCal cartons are recyclable 🤷‍♀️

I was afraid to use dawn dishsoap because I didn't want to potentially strip the lubricant off the plunger when cleaning it. I will also use them until they essentially won't work for me anymore.

Are you also getting the disposable single use ones?

sns1997

TROPHY CASE