/ heigh ho \

Five ✋🏻 Months

That’s how long it’s been since I worked my last shift. Until today! First day back at work since all this stuff went down. My colleagues and friends at work are so supportive and the transition back couldn’t have been smoother. It feels good to be the nurse again, not the patient. This season has taught me a lot about receiving help from others. However, I’m soaking up the opportunity to care for others again while I can 🤍…

#nurse #registerednurse #backtowork #FAI #hipimpingement #hipdysplasia #labraltear #arthritis #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge

/ 2 for 2 \

🙌🏻 More good news 🙌🏻

My gastroenterologist just wrote saying all the biopsies were benign. No signs of cancer! No Barretts Esophagus (phew!) just a ton of chronic inflammation. The polyps were benign hyperplastic polyps. All my blood work came back normal too. So he wants to go over all my medications, prescription and OTC to see if they could be contributing to some of this. But as it stands, all of these things can be addressed/potentially fixed!

Shouting good news from the rooftops if I get some. Thanks for all your prayers, good words, and support. Hoping you got some good news today too ✨
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#gastroenterology #ulcers #polyps #notcancer #barrettsesophogus #colonoscopy #endoscopy #abdominalpain #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #dysautonomia #hashimotos #chronicillness #spoonie #chronicillnesswarrior #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge

/ good news y’all \

YOU GUYS! It happened! My short term disability got approved!! So thankful for sone good news. Hope you got some good news today too ♥️
••••••••••••••••••••••••••••••••
It’s 👏🏻 About 👏🏻 Time 👏🏻
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disability #ShortTermDisability #disabilityapproval #DisabilityAwareness #FAI #FAO #hipimpingement #hipsurgery #hipdysplasia #labraltear #arthritis #EDS #POTS #MCAS #chronicillness #chronicillnesswarrior #butyoudontlooksick #invisibleillness #chronicpain #buildabridge

/ gut instincts \

::GI UPDATE::
•••
After many years of abdominal pain, cramping, and other GI issues, I finally got around to having an endoscopy/colonoscopy. The doctor found three ulcers, polyps, and signs suggestive of something called Barrett’s Esophagus. He biopsied all of these and I should have more information when those results come back.
•••
I don’t really know how I feel about any of this honestly. I’m so emotionally and physically drained. But I’m sure I’ll have some feelings about it in a few days.
•••
For now just grateful for validation and answers to explain my pain 💫
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gastroenterology #ulcers #polyps #barrettsesophogus #colonoscopy #endoscopy #abdominalpain #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability #dysautonomia #hashimotos #chiarimalformation #chronicpain #chronicillness #spoonies #alopecia #butyoudontlooksick #invisibleillness #buildabridge

/ endocrinologist \

New endocrinologist appointment today. Went pretty well. Lots of labs I’ll hopefully get done next week. Overall she was nice and thorough. She spent 1 1/2 hours with me. Following up with my Hashimotos disease- but she agrees my symptoms can’t all be explained by thyroid disease. Ruling out Hyperparathyroidism (based on previous abnormal labs), adrenal tumors/pheocromocytoma (based on symptoms), and getting clear catecholamine plasma levels which I’ve never had any doctor do before. Hurray 👏🏻for 👏🏻decent 👏🏻doctors 👏🏻…

#endocrinologist #hashimotos #hypothyroid  #hipimpingement #hipsurgery #hipdysplasia #labraltear #arthritis #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood   #chronicillnesswarrior #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge 

/ new year \

I survived. This year has held adventure as well as a lot of loss and hardships.

  • TONS of physical therapy.
  • I was diagnosed with EDS, MCAS, CCI, hyperPOTS, and a few other things.
  • I went to California to visit wonderful friends and see Paul McCartney (!), my musical idol for decades.
  • I discovered two cysts in my wrists that needed surgery.
  • I visited my brother and family in Florida to welcome them there and celebrate my sister n laws birthday.
  • I took many walks in the wissahickon with my dog and celebrated the beauty of nature, stillness, water, and trees.
  • We discovered we needed masons to complete a very expensive chimney rebuild.
  • We also discovered we needed an expensive gutter replacement.
  • We found a new church congregation with some amazing people.
  • My hip stopped working. I had a torn labrum with cysts, a partial dislocation, and free floating cartilage. I got my 2nd surgery of this year.
  • My 6 year old needed doctor appts for migraines, anxiety, ADHD, and sleep apnea.
  • I learned to ask for help.
  • I applied for disability.
  • I started online courses for my School Nurse Certification.
  • We visited my 92 year old grandma.
  • My parents drove me back to Philly on 12/16 after recovering from hip surgery. It would be the last time I would see my dad.
  • My dad died unexpectedly 4 days before Christmas 💔
  • My husband and I still made Christmas happen for my 3 and 6 year old while planning a trip for my dads funeral.
  • I spent hours on end on New Years Eve with my siblings going through paperwork and getting affairs in order. Everyone developed a fever between 101-104 which we found out today is the flu 🤘🏻

——————

This year may have been one of the most challenging of my life. I have hopes for 2020 easing up a bit. Enough for us all to come up for air. I’m sincerely so happy if this year was kind to you. But if it wasn’t, know you’re not alone. I see you. We’re there too. And we’re holding out a piece of hope for next year for all of us ♥️

/ progress \

Taking it real slow, but I’m crutch-free! Progress!

#FAI #FAO #hipimpingement #hipsurgery #hipdysplasia #labraltear #arthritis #EDS #recovery #healing #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #chiarimalformation #butyoudontlooksick #invisibleillness

/ every day you get our best \

I went out today for the first time since surgery! Just to Wegmans and back (because it’s the best place on earth). It was hard but it felt good! It was my first time using an electric wheelchair. (First pic is my mom’s attempt at getting both me and the Wegmans sign in the frame). I was less self conscious than I anticipated, though I was surprised at how many people actually stared. Even when they’re trying to be discrete. I see you eyeballin’ me 👀 Even in 2019, society can’t seem to be comfortable with the idea of a younger person in a wheelchair.

I’ve been at my parents house in upstate NY. They have been great. I’ve been navigating the world of disability and insurance and tuition reimbursement all from a bed in my brothers old room. I’ll likely be here until mid-December. Matt has been holding down the fort with the girls. Bless him 🙏🏻

Recovery has been going well. The first 24 hours the pain was pretty excruciating. But at this point, it’s handled well with rest, elevation, and Tylenol. I’ve been taking all my supplements, including Zinc, Vit C, Collagen, and Ligaplex. I’ve been drinking lots of organic bone broth. I’ve also been sleeping about 10-12 hours every night. I’m leaning fully in to this season of healing. I’m grateful for the space to do so ✨

#FAI #FAO #hipimpingement #hipsurgery #hipdysplasia #labraltear #arthritis #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #wegmans #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge

/ hello from the other side \

WE DID THE THING! Surgery went great- no complications. And I got discharged the same day! It seriously couldn’t have gone better.

Surgeon said I had really significant tears in my hip and free floating cartilage that was causing my painful “catches.” He also did an osteoplasty where he shaves down/smooths part of the femur to prevent it from damaging more cartilage in the future.

We had to be there at 5am and the kids woke us up several times last night so I’m beyond exhausted (as evidenced by this lovely picture). BUT I’m on the other side, finally. I’m in a great deal of pain, but it’s been a big day with little rest. I’m headed upstate to my parents house to recover for a few weeks in a peaceful environment with lots of support. Tired but happy 🖤

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#FAI #hipimpingement #hipdysplasia #labraltear #arthritis #EDS #ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge