Liver Disease

For years and years I’ve had problems with my joints, but the worst ones have always been my hips, knees, shoulders and fingers. Last year I was going to sit with my legs crossed, and as I did so I felt something hard in my right hip grind and I actually screamed. The pain literally blinded me for a good 10 seconds. After straightening my leg slowly, it eased up. But any time I turned my leg or lifted it, that same pain came back with a vengeance.

Naturally, I went to my GP and she and a colleague had me moving my leg in different ways and angles, which really really hurt, and said it was definitely an arthritic pain. They gave me some kick-ass anti inflammatory meds primarily used for arthritis (Meloxicam), and said they’d send me for an urgent x-ray of my pelvis.

A few days later I had the x-ray, even though the technician kept making me move my leg in different angles again.

And a week after that, my doctor called me with the results. Apparently I have something called a hip impingement? There’s a deformity in the ball of the joint that fits into the socket of my pelvis. Like an extra lip of bone. And over the years it’s been grinding in the socket so much it’s worn it down, and now I have arthritis. She said my left hip has a similar deformity but nowhere near as bad.

So, I’ve got to try and take it easy. I’m still going for very slow and short walks to get me out of the house. But it’s so damn frustrating that I have to slow down! And I know if I go against what she suggested, I’m going to seriously pay for it. Ugh.

So, I’ve done a lot of reading in the last few weeks. Yesterday I picked up A Court of Thorns And Roses (ACOTAR), and this morning I was sat in my mum’s room just quietly reading… Until Loki jumped up and stared at me. 😂 I don’t think he approves of me reading instead of giving him cuddles. He’s such a jelly-belly!

Anyway… I hope you’re all doing okay and having a good year so far. 🌺

#ChronicPain #chronicillnesswarrior #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #EDS #hipimpingement #Arthritis #ArthriticPain #InterstitialCystitis #LiverDisease #BPD #ComplexPTSD #Depression #Anxiety #resting #Reading

Whether you’re trying to explain A1AT’s impact on your quality of life or you’re sharing your experience with a particular symptom, finding the words to accurately capture A1AT can be hard — and there’s no shame in that.

What resources, questions, metaphors, or anecdotes have proven helpful to describe your condition?

Share your tips in the comments below.

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

From performance at work and school to spending quality time with family and friends, we know A1AT can affect life in many different ways (both good and bad).

What area of your life has been most negatively impacted by A1AT? What area has been most positively impacted? Share with us in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Treatment types, medications, and lifestyle changes can vary from person to person. Some patients with alpha-1 find success with COPD therapies, pulmonary rehab, oxygen therapy, or weekly infusions.

What treatment experiences did you have that did not meet your expectations? In what ways, if any, have you been pleasantly surprised? Share in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

If you are living with A1AT, what piece of advice do you wish you had received earlier? What is something you wish you had learned earlier about the condition?

Share in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Making the decision to change up your treatment plan should be a productive dialogue between a patient and their care team. But we know from experience that those conversations can be... tricky.

What are your biggest challenges when discussing your treatment plan with your doctor? Find it easy? Find it hard?

#MentalHealth #LiverDisease #Alpha1AntitrypsinDeficiency #RareDisease #Disability #CheckInWithMe #Spoonie #Caregiving

Each of our health journeys are multifaceted, complex, and unique — but that doesn’t mean we’re alone in what we go through. Those shared experiences are what make us Mighty! 💪

Today, share a part of your PH1 journey that has stuck with you and made a lasting impact — no matter if it’s a positive or negative mark.

#KidneyDisease #KidneyTransplant #PH1 #PrimaryHyperoxaluriaType1 #ChronicIllness #RareDisease #Caregiving #KidneyStones #LiverDisease

Your relationship with a doctor or therapist is an important one, but it can be really frustrating when you feel like you're not being listened to or your needs aren’t being met.

Is there anything your doctor or health care team could do to improve your experience or relationship?

Let us know in the comments below. ⬇️

#RareDisease #Alpha1AntitrypsinDeficiency #ChronicIllness #ChronicPain #Caregiving #LiverDisease #LungDisease