Living the lupy life

[Simplysusieb]

I’ve been living with Lupus for over 30 years 10 of those years before diagnosis. Been through many ups and downs and added medial conditions along the way. Graves,Fibromyalgia Atypical Trigeminal Neuralgia and most recently Pulmonary Embolism.

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Oh my goodness simplesusieb that’s a lot to deal with.

Panda

🐼🥰🤦‍♀️

[MrsMouseSJ]

I'm sorry to read this, Simplysusieb. There's so much going on for you and life must be very tough. What caused the P.E. and are you now on anticoagulants? I ask as I have Lupus, too, and also Antiphospholipid Syndrome, so I am wondering about the latter. All good wishes.

[Simplysusieb in reply to MrsMouseSJ]

Hi thanks for your wishes

They believe it was related to Antiphospholipid Syndrome. I am on Xeralto for life so treating my chronic body inflammation is difficult because I can’t take anti inflammatory drugs. Before the embolism I took ketoralac for inflammation twice a day and it helped so much with swelling and pain. To go cold turkey off of that has been very difficult.

[MrsMouseSJ in reply to Simplysusieb]

I'm really glad to hear that you are now anticoagulated. P.E.s are very frightening indeed - having had three episodes myself before I was finally diagnosed with APS and put on long-term Warfarin. I really hope you will do well on the Xeralto and that life will start to look up for you!

[Simplysusieb in reply to MrsMouseSJ]

Thank you I hope the same for you!

The shortness of breath never really goes away. I have shrinking lung syndrome due to the inflammation and PE. It’s funny how the lasting effects hit you at the weirdest times.

[MrsMouseSJ in reply to Simplysusieb]

I had never heard of Shrinking Lung Syndrome, but have just looked it up. I don't really know what to say; you have so much on your plate....