Ava Meena

Sharing my life and travels with #lupus.

[Ava Meena @MyMeenaLife]

"I asked the doctor, “How could I have such extreme dryness and not have Sjögren’s?” He said there are many people like me. People who have the symptoms but not the disease. I left his office that day unable to fully process my disappointment." #sjogrens

https://t.co/hbpYORfpca

[Ava Meena @MyMeenaLife]

@CuterCattz An old elementary school in Rock Hill is being rented out for shopping pop ups and police training.

[Charlotte Wade @cwadephotoart]

Today it #MindfulGiftsDay!!
For happy handmade #positivity filled gift ideas head over to https://t.co/knif1vRglk
Buy any 3 items and get a 25% discount on your whole order!!
All weekend orders will be hand packaged and posted Monday morning!

#ukgiftam #ukgifthour #shopsmall

[Ava Meena @MyMeenaLife]

@CuterCattz Awesome!

[Rhiann Johns @serenebutterfly]

"You might have a chronic illness if:
You have thought you were waiting out a flare and things will get better in a week or so, but eventually, you realise that this is your life now." 🔗https://t.co/BG2lIC5vTq via @MyMeenaLife

#ChronicIllness #ChronicPain #ChronicLife

[Ava Meena @MyMeenaLife]

@CharMeckSchools CMS bus drivers are doing such a great job! Bus 867 and 300 have even been running a few minutes early!

[Ava Meena @MyMeenaLife]

"I’ve found that I have 4 different kinds of #lupus flare-ups. However, it doesn't feel like I’m in charge. Sometimes one type of flare will morph into another kind, and who knows when my lupus might decide to add a new variation to the mix."

https://t.co/oIMRebfM9D

[Ava Meena @MyMeenaLife]

"Each week, I find myself getting irritated when it’s time for me to read... I know it’s going to be a miserable, dry, blinking, squinting, and sometimes guessing at words experience. I hate that I can't simply sit down to complete the task." #dryeye

https://t.co/6iBDL4si4j

[Ava Meena @MyMeenaLife]

@serenebutterfly @Lupus_HU thanks for sharing!

[Rhiann Johns @serenebutterfly]

"Knowing that you might have to live the rest of your life with chronic pain is scary. At times, the uncertainty is worse than the actual pain. How long will it last? How bad will it be?" 🔗https://t.co/rSmUX5I01d via @Lupus_HU & @MyMeenaLife

#ChronicIllness #ChronicPain

[Ava Meena @MyMeenaLife]

"I was blown away by the way his humility led to a wealth of other characteristics that helped me and made me feel respected as a person with chronic illnesses... I found that a humble doctor made me feel like a person instead of just a patient."

https://t.co/IKqZhcmFb1

[Ava Meena @MyMeenaLife]

"But you don’t need a fibromyalgia diagnosis to be blown off by medical professionals - it can happen for any reason at any time. If a doctor underestimates your symptoms it can lead to delays, complications in care, and possibly more pain." #ChronicPain

https://t.co/LxDTpVrZ8B

[Ava Meena @MyMeenaLife]

"I realized nothing can make you feel less in control than being buck-naked in a hospital gown."

[Ava Meena @MyMeenaLife]

"We are in the best club that we never wanted to be part of."

Off to a great start in this virtual #SjogrensSummit - enjoying the welcome session by @CrunchyAllergy

[Rhiann Johns @serenebutterfly]

"Living a life filled with pain is difficult and maddening at times. The added burden of #flare pain makes me feel a range of emotions, from bummed to hopeless." 🔗https://t.co/hADHto5VJS via @Lupus_HU & @MyMeenaLife

#ChronicIllnes #ChronicPain #ChronicLife

[Ava Meena @MyMeenaLife]

Just for clarity, I'm not disappointed that I tested negative for the disease - I'm disappointed that there's no explanation for my symptoms or treatment. It's all explained in the post.

[Ava Meena @MyMeenaLife]

"I asked the doctor, “How could I have such extreme dryness and not have Sjögren’s?” He said there are many people like me. People who have the symptoms but not the disease. I left his office that day unable to fully process my disappointment." #sjogrens

https://t.co/hbpYORfpca

[Ava Meena @MyMeenaLife]

"Know that you’re not alone if your flare-up has been a dark place. It might feel like you’re holding onto a telephone pole in hurricane winds, but just keep holding on. When you make it through to the other side, you can start picking up the pieces again.
https://t.co/OEqeN4v5vE

[Ava Meena @MyMeenaLife]

"I found myself unable to tolerate several anti-depressants because they worsened my already severe dryness from #lupus and Sjögren’s. I hit some scary lows with my depression and decided to try using low-dose ketamine." #depression

https://t.co/zwyxVIGuTr

[Ava Meena @MyMeenaLife]

@tspadventure @travel4thestars That is funny!

[Ava Meena @MyMeenaLife]

When a body part starts acting up but you already have a routine appointment with said body part doctor next week.