#chronicallyillgrrlgang

[howilearnedtocope]

The grief from chronic illness is real, and it can cut deep. It’s understandable if you’re sad, angry, or confused. If small things have big effects on you because they remind you of the future you lost. If it takes you a long time to come to terms with it all, or if it sneaks up on you long after you thought you’d accepted it.

You can have a good life with chronic illness, but that doesn’t mean that the loss you are feeling isn’t real. Give yourself permission to feel sad. Give yourself permission to heal 💜

[howilearnedtocope]

Look at any recent picture and I’m wearing knee braces & sneakers, a hidden posture shirt, and maybe other braces & compression.

It gives me all kinds of fashion trouble and can be quite frustrating when I can’t wear the clothes/shoes I want (basically no pants fit over my knee braces, neck lines tricky with posture brace). But twice in the last 10 days I’ve walked more than 17,500 steps (about 9 miles) without even realizing it until I looked at my fitbit at the end of the day.

That is *amazing* all things considered. Without my braces & orthotics I doubt I’d be able to walk very far at all, but because I am so diligent I have more freedom than I ever could otherwise. And because I can be up and moving around I’m not getting deconditioned which is so important for all my conditions. This is why it’s worth ignoring social and personal pressure to do what *you* need to do to stay healthy. Because it’s that I’m doing it this way that I can do it at all :)

[rain0fashes]

Chemo #1 day. Exhaustion abounds. #hospitalglam #chronicallyillgrrlgang #spoonie #spoonielife

[socialmasochist]

Many #smalladventures today. #gifts from a dear friend, #therapy, #bathroomselfie with great light, bank, pharmacy where the man next to me had a bad seizure and I tried to use my soothing voice on us both while waiting for the ambulance, @copperfieldssantarosa where I met a book soul mate, Cheetos & ice cream bars because I'm still in fight or flight mode and hate my stomach. #chronicallyill #chronicillness #dysautonomia #chronicallyfabulous #chronicallyillgrrlgang #agoraphobia #ocd #needanap

[rain0fashes]

Here for the night. Hoping to get nausea and pain meds soon. #PancreaticAntics #hospitalglam #chronicallyillgrrlgang #spoonie #autoimmunewarrior (at NEW YORK PRESBYTERIAN HOSPITAL)

[socialmasochist]

Evening appointment with my NP. Had a panic attack driving in a downpour at night. Rushed to address everything on my list. Bladder infection? Yes. Rheumatologist? Probably. IV fluids? Tricky, but we're working on it. #hospitalglam #chronicillness #chronicallyill #chronicallyfabulous #dysautonomia #POTS #agoraphobia #ocd #ibs #chronicallyillgrrlgang

[socialmasochist]

Hoping the red will hide how green I feel. #selfie #chronicillness #chronicallyfabulous #chronicallyillgrrlgang #dysautonomia #POTS #vertigo #nausea #spoonie #spooniefashion

[rain0fashes]

Back in the hospital. The pancreas is acting up again...yay. After a miserable night (except for my amazing nurse), I'm doing better this morning with a new doctor and another amazing nurse. #PancreaticAntics #chronicallyillgrrlgang #hospitalglam #lupus #SLE #RA #pancreatitis #chronicillness #chronicdisaster #autoimmunewarrior (at Holy Name Medical Center)