Who do you talk to?

[Insomniacette]

Hey All,

So my ranula turned into a plunging ranula (I think) but the GP has referred me for an expedited cancer check as the gland beneath is swollen too and he wants to make sure it's not cancer. I'm telling myself it's a plunging ranula for now as there is a tail and the gland hurts so all the symptoms match a plunging ranula and I've read lymphoma doesn't cause glandular pain usually. So I'm not feeling miserable or scared about the cancer check as I genuinely don't think I have it and it's just my GP being thorough. I'll know for sure in two weeks I guess - the GP said I should be seen in two weeks.

I am however feeling low that if it's a plunging ranula, which I think it is, I'm likely going to need surgery to remove the gland - it's an easy operation. Only one night in hospital and bed rest for a week. I'm not really upset or scared about that either although I've never gone under general and that is a little anxiety inducing.

Oddly what has mostly left me sad is that it's the first salivary gland I've lost. I know with sjogren's this happens increasingly so it's just a bit of a sad marker. I'd kind of hoped this stuff wouldn't happen until I hit my 50s, not in my mid to late 30s. It's a reminder that I'm sick when most days I try to forget I am. So I'm a bit melancholy.

Anyway the reason I'm writing is I'm wondering who you guys talk to. I find when I have bad news like this that I would just like to be hugged and tell someone. But the urge not to burden others or make them sad or worried is strong too. I'm mostly the comforter of my friends, so I know all their difficulties and I don't want to add to them. So I end up holding it all in and then posting on here instead. I literally spent all day today scrolling my friends on my phone but couldn't think who to tell who wouldn't worry or feel sad once I told them. So I didn't call any of them.

I just wondered what other people do. Do you tell your loved ones about this stuff? Your friends? Who do you grumble to when your body is letting you down and you're feeling a bit low?

xxx

[MrsMarigold]

Hi Insomniacette. Very profound post. A couple things strike me as I read your words. One, you are experiencing a loss. And it seems ridiculous to you that you are feeling this as a loss. A small body part. ButA part loss nonetheless. When I was 48 I

Made the decision to have a back molar pulled. At the time I didn’t have my diagnosis of lupus yet. I only knew that I became ill with dental work. The first crown had failed and now they wanted to try again? Nope. The day I had it pulled I unexpectedly felt just like you. I was too

Young to have a tooth removed?! As it healed I actually felt better so I knew I had made the right decision. But the weirdness

Stayed awhile. It’s kind of a reminder that we really are mortal. We age and lose parts😫🤣🤷‍♀️ And then who do you tell? Sometimes no one. My husband. My sister.

And like you are experiencing at the moment; no one in your circle of friends

Except forum friends💜 Afterwards, or before when you are accustomed to the gland being removed I know you will laugh.

Not sure how it will strike you to giggle

But you will. The dentist put my tooth in a glass corked container and presented it to me like it was sacred. I smirked I think. One day months later I found it in a kitchen

Drawer and 🤣🤣🤣. It will be fine🦷🦋

[Insomniacette in reply to MrsMarigold]

Thank you Titters - I know it's ridiculous - I should be grateful it's not cancer (or unlikely to be cancer). But you get me totally. It's a sign that this bloody illness is doing stuff to me. It's making itself felt and it has succeeded in destroying a part of me no matter how small or unneeded. And it makes me sad, angry, scared. Sigh.

Thank you so much - your post made me feel so much better. Sending you loads of love and gratitude.xx

[MrsMarigold in reply to Insomniacette]

💜♥️💜♥️😊🦋

[Tiggywoos]

Hi 😊 lovely I know exactly what you mean about scrolling through phone 🙈.. I did that last month when knee man said I didn’t have much cartilage in my knees .. he said it so calmly as if he’d asked me to go and make him a cuppa ! I howled like a baby in the carpark, scrolled through phone sorted snotty nose out and drove home .

Sounds crazy but I talk to tiggy cat 🐈.. he sort of guesses when something is up . I tell him not to panic , mummy may be ill but she has no plans on dying any time soon 😂 (so naughty he’s currently licking the cereal bowl 🥣)

I’m sending you a lovely big hug , and it is totally normal to mourn a body part . Defo get some good treats in for that week of bed rest . I hope today you feel a little bit better ❤️❤️xx

[MusicalFurbaby]

Hi Insomniacette, I totally relate to what you’re saying. It’s hard to talk about with others, as we often get the ‘Count your blessings’ or ‘Be grateful for what you have’ responses. All which are right and true, but unhelpful when we’re grieving the loss of a body part.

I found out a couple of years ago I’m gonna need total joint replacements soon, and I grieved the loss of those joints. No doubt I will grieve again when I actually lose the bone that’s been with me my whole life.

I definitely tell loved ones, but I’m extremely selective with *how much* I tell them. If they are not always supportive, I tell them far less. I am fortunate to have a few close friends who are also surviving their own chronic illnesses, and they get it. It’s a relief to talk to friends who understand the grief around ongoing illness.

I also take my husband to any medical appt that might be challenging. This means he helps me remember stuff that was discussed in the appt. It also means he can support me emotionally afterwards, once the news hits home. And it means I don’t have to tell him the whole story; he already knows what happened.

And, as my name suggests, I have a furbaby who gives me very comforting cuddles!

[Krazykat26]

Gentle 🤗🤗🤗to you Insomniacette 😔 I'm so sorry to hear of your troubles right now. It's a scary time for you n you really do need support..you've got us..were all your invisible cyber friends!! 😁And we understand!! I'm very lucky to have a bestie who I first met as a nearby neighbour about 25 years ago when our children were young. We don't live in each others pockets but she's the first one I go to when I need to get something off my chest..and she does the same. She has progressive MS and we share very similar symptoms..she and I moan about the weather for instance purely because it sets us off symptom wise!! 😹 I call her my soul sister n she's very dear to me.

I talk to hubby of course coz he knows when I'm not my usual self..he's my rock. And my daughter's..especially my youngest..we text every day..we are separated by distance but we always say good morning n chat periodically throughout the day. I showed them the spoon theory when I first discovered it..so they know about how lupus affects us..now rather than say I'm ill I just say I'm low on spoons n they understand. They're both in their thirties so all grown up now.

Another way I let off some steam is to talk to a tree!! I have a lovely old hawthorn tree in my garden n I get great comfort from just sitting under the shade of the tree n offloading my feelings. 🌳

You say that u don't want to make friends worried or sad but tbh you don't really know how they will feel emotionally. If you were to pick one close friend to confide in maybe that person will be relieved that you've told them? You're a support to all of your friends and maybe one of them might like the opportunity to support you in return? 🤔

It is important not to bottle things up though..keeping it all to yourself will probably make symptoms worse. You do need an outlet.

Luckily you're here with us and you know that we listen and understand how it is living with autoimmune diseases day in day out..with no days off!! It's frustrating, sad,painful etc in differing amounts each day..and it's healthy to let off steam!! 😤😡🤬

Be kind to yourself n definitely get some treats in when your having that week of bedrest 🌈😽😽xx

[Tiggywoos in reply to Krazykat26]

So true about not bottling things up KK 😘. Since I share more with hubby he’s defo upped his game on the support front ! Emptied dishwasher unprompted the other night 🤩🥳! Hugs to you ❤️❤️Xxx

[MEGS53]

Here are a few hugs from me

🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

[Hidden]

I’m sending this picture so you know others care and understand 🤗

Flowers in sun