Nicole Marie Sullivan is from Rockland, MA. She has been an official Zebra since September, 2017. However- it took her about 5 years to get her official PI diagnosis. Nicole misses the ability to work 2 Jobs – one as a Medical Assistant, and one as a hairdresser. After being hospitalized about twice a month – she was feeling guilt over letting her co-workers down and leaving her clients in a bind. She had to quit working because her PIDD was not allowing her to stay healthy enough to work.

But that’s not all – it’s never that simple. Nicole also has an autoimmune blood disorder (APS) Antiphosphilipid Syndrome which causes blood clots in her arteries and veins. She’s been on Coumadin- a blood thinner- since 2007. She was diagnosed with this after forming 2 clots in her left lung during a bout of pneumonia. It was pretty serious as she almost didn’t make it through!

How about complications? Oh yeah – Nicole has had those too! She had to stop IVig infusions because she had no veins and she refused a port. She switched to Hyqvia- but got so swollen that when she bent over to tie her shoes she broke TWO RIBS! I guess it’s because she also has osteoporosis.

“THANK YOU to the Facebook ZEBRA friends” who are there to pull her through on the rough days. Because getting support from others is an issue for Nicole. ( where have we heard that one)? “It feels like someone has ripped one of her legs off”- the pain is there- they choose not to acknowledge it. She puts a fake smile on and tries to make it through.

Her Father and Bobby ( her boyfriend of 6 years) “are the only 2 who actually do understand this illness”. They support and help her when she needs it.

Nicole and Bobby

 

She has learned much about PIDD from her group – “not even one single person shares the same problems and symptoms as I do”.

After getting her treatment straightened out – Nicole would like to do things she enjoys- fun with friends, helping others and fighting for causes.

That’s Nicole’s story – so much is familiar to Zebras. And yet – each one is unique.

Thank you Nicole for sharing with us.

Later

C

 

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