liver disease

Join the Conversation on
liver disease
695 people
0 stories
105 posts
Explore Our Newsletters
What's New in liver disease

How do you say no to your little nieces, nephews and children?

I’m currently a first time aunt (although my sister is 21 weeks pregnant right now) to an absolutely gorgeous and clever little boy named Oskar. He’s 22months old, and I absolutely love playing with him. I chase him, I crawl towards him on my hands and knees. I play rough with him (he loves this), and I tickle him until he’s belly laughing.

He is truly the light of my life - since he was born I’ve refused to self harm and I’ve really started taking better care of myself. But sometimes when we’re playing, I start to get pain or get really exhausted and I have to tell him no and sit down for a bit. But then he comes over, grabs my hands and tries to pull me up and make me follow him.

It really breaks my heart because I know he doesn’t really understand and he thinks he’s done something wrong. How do YOU communicate that you need a break? Is there a way to do it so he understands? He can get quite upset. Aside from his dad, I’m the only person that really plays with him and makes him laugh.

Any and all advice would be greatly appreciated!

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Jointpain #Diabetes #InterstitialCystitis #Migraines #Depression #Fatigue #Children #Advice

32 reactions 9 comments
See full photo

What do you wish you had more of this week?

Take what you need, Mighty fam!

🔋 Energy

⏰ Time

💖 Support

💃 Fun

📱 Connection

😴 Rest

📣 Encouragement

☀️ Good weather

✌️ Peace

🧘 Pain-free moments

⚖️ Stability

🙌 Motivation

📚 Distraction

💪 Strength

🤞 Patience

🍀 Luck

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

9 reactions 4 comments
See full photo

What’s a question you’re sick of being asked about your A1AT symptoms?

“Why are you always so tired?”

“But you don’t look sick?”

“Have you tried yoga?”

“Did you pray about it?”

If you have a diagnosis like A1AT, there’s a pretty good possibility you’ve heard one of the above statements at least once in your life. While we’ve come a decent way as a society, we still have a long way to go in how we view and interact with chronic illness and rare disease patients.

Share those eye-rolling questions with us below. 👀

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction
See full photo

Are there any questions or topics you wish your doctor would discuss with you during your appointments?

Patient-provider relationships are a two-way street, and sometimes there can be a skewed imbalance of conversation or effort from either party.

If your appointment leaves you feeling a little empty or confused, we’re curious what topics or questions you wish your doctors actually broached.

Sometimes you just want a medical professional to ask how you’re really doing, follow up on something you mentioned to them during your previous appointment, or start the conversation about a scary symptom or outcome.

If you feel comfortable sharing, add your questions or topics in the comments section below.

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain


Joint Pain

Hey, everyone. I hope you’re all doing a lot better than I am.

For the last four days it’s been about 30°C and I’ve had enough.. Tomorrow it’s meant to hit 32°C.

I’m doing everything I can to stay cool and hydrated - I’m drinking between 2 to 3 litres of water/squash. I have a fan on me 24/7. Somehow, I’m managing alright overall - I haven’t fainted or blacked out. And at night time I’ve pretty much been falling asleep very very quickly when I get into bed.

HOWEVER… My joints are killing me. They’re a little swollen, very achy and sometimes even feel like they’re creaking, if that makes sense? It’s mainly my wrists, fingers, knuckles, elbows, knees and ankles. If I squeeze my fingers together or squeeze my wrists it makes the pain better. Which is weird but that’s what happens. But I can’t exactly sit here and squeeze every joint. I don’t have enough hands, haha!

Does anyone have any advice for it? It’s far too hot to wear my compression stockings - I’ve been keeping my feet elevated a little bit instead. Is there anything else I can do?

Thank you all in advance

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #Jointpain #SoreJoints #PainfulJoints #Heatwave #toohot

5 reactions 3 comments
See full photo

Let’s do an emoji check-in!

How’s it going today?

If you are feeling great, give us a 👍 in the comments. We love that for you!

If today is a rough one, reply below with a 👎. (We feel you!)

Not a fan of the thumbs? Comment below with any emoji that best reflects how you’re doing right now.

Ready, set, emoji!

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

See full photo

Since you all loved the photo of him the other day… I present - Loki being cute.

As I said, you all loved my beautiful Loki the other day. Today, he’s been curling up around my feet cus my blanket was too warm for him. I’m feeling much better today - the antibiotics have done their job, as have the heavy painkillers.

Thank you all for wishing me well. I hope you all have a fantastic and easy week ahead of you!

#chronicillnesswarrior #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #ic #bladderdisease #BladderPain #ChronicPain #Kidneyinfection

14 reactions 3 comments
See full photo

Animal Intuition - He Knows.

So, I’m in the middle of an Interstitial Cystitis flare and possible kidney infection and I’ve been in so much pain with it and I’ve been utterly miserable. Mostly just curled up on my bed with a heat pad on my bladder area.

Loki has been the sweetest kitten/cat. Whenever I’m unwell he does tend to stay close to me. But earlier while I was half laying down, he just shuffled up to me, and laid right across my lower belly, nuzzling me and every so gently padding at my belly. He has completely melted my heart. He’s been doing it all morning. If I get up to get a drink or use the bathroom, he sits and waits and then when I’m back, he comes back and lies across my belly. 🥹

I love him so much.

#chronicillnesswarrior #ChronicPain #InterstitialCystitis #BladderPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #BPD #Depression #Anxiety

69 reactions 15 comments
See full photo

True or False: I feel like my doctor listens to me and values my lived experience with A1AT.

Mighty fam, we’ve heard from so many of you about the relationship you have with your doctor and how important it is. For some of you, your doctor is the only one who “gets” it. For others, communicating with your doctor is a frustrating experience.

In your life with A1AT, share whether the above statement feels true or false to you in the comments below. (And if you feel up to it, tell us why!)

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction
See full photo

What’s the best change you’ve ever made for your A1AT?

Living with A1AT can require a person to make a lot of changes — big ones, small ones, temporary ones, forever ones.

Some of those changes can be hard to swallow because they are ones we never thought we’d have to make (like leaving a job).

But sometimes the changes can be for the better. Maybe your health made you slow down so you can spend more time with your family, focus more on your mental health, or explore a new, more flexible career path.

Share your positive changes with us in the comments below.

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction