liver disease

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

“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

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

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

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

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

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

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