Invisible

Hello all, welcome back. This particular post means a great deal to me. My Mommy, Paula, has decided it’s time to open up to the world about her daily health struggles. I am humbled that she trusts me to help her write her story, and grateful that she agreed to model for my website shop22designs.co. Mom has a joint and connective tissue disorder called Ehlers-Danlos syndrome, hyper mobile type. The month of May is the awareness month and the mascot is the zebra.

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“When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.”

“The signs and symptoms of hypermobile Ehlers-Danlos syndrome vary but may include:

  • Joint hypermobility affecting both large (elbows, knees) and small (fingers, toes) joints
  • Frequent joint dislocations and subluxations (partial dislocation), often affecting the shoulder, kneecap, and/or temporomandibular joint (joint that connects the lower jaw to the skull)
  • Soft, smooth skin that may be slightly elastic (stretchy) and bruises easily
  • Chronic musculoskeletal (muscle and bone) pain
  • Early-onset osteoarthritis
  • Osteoporosis
  • Gastrointestinal issues
  • Dysfunction of the autonomic nervous system
  • Cardiovascular abnormalities such as mitral valve prolapse or aortic root dilatation (enlargement of the blood vessel that distributes blood from the heart to the rest of the body)
  • Pregnancy may be complicated by premature rupture of membranes or rapid labor and delivery (less than 4 hours)

*Information credited to rarediseases.nih.gov

This collection consists of mostly black and white pieces and 25% of all proceeds will be donated to the EDS Society for research purposes. Invisible illnesses are not pretty. They leave a person devastated, feeling like their body has betrayed them and can leave their spirit dissipated. Let me be forthright in saying that this is not everyone’s experience with EDS. This is not a post for pity or sympathy. It is catharsis for both of us. It’s very easy to sugar coat and romanticize life for social media and likes but we both feel much more comfortable with being real, and bringing awareness to this disorder through creativity and this particular jewelry collection. I hope you walk away today having learned something new.


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Her superpower is her lack of fear to keep going. She fights every damn day.

Paula Jean Bridges Holleman  was once a very active human being. She was a self taught gymnast- who was very limber throughout her childhood which would go on to make a very good cheerleader in jr. high and high school. She loved to dance, cook multiple course meals, and bring people together through social gatherings. She went on to have myself and 12 years later…my little brother. We have grown up with 2 different mothers, if you will. My childhood with my mother consisted of daily walks, hikes, bird watching, trips around the country, learning gymnastics, and my favorite- late night dance parties jamming to Earth, Wind, and Fire. I remember growing up and Mommy having 2 benign brain tumors on either side of her brain stem. They caused issues with her vision and she would experience vertigo. She had a large stone removed from her right breast that thankfully was also benign. She always kept going though. Never faltered in fighting for answers for her health. When I was 16 her health really started to take a nose dive. She has IC (interstitial cystitis) which is a painful bladder disorder that causes extreme pain in her bladder and pelvic area, she was diagnosed with Guillan-Barre which is an auto immune disorder that results in rapid on-set muscle weakness. There were several months of her life where her feet, hands, and face would go numb and honestly it was scary to sit by and not be able to do anything. All of these disorders would lead to her being diagnosed with EDS in 2016.

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I made it through work today stack

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Sticks and stones do in fact hurt my bones stack

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Stretch break


Daily Routine

Ice packs, stretching, physical therapy. Can’t go to movies, can’t go out to eat, can’t sit in the same spot for a long period of time.  Can’t stand for too long. But does that keep her from trying? Hell no.

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Mom’s tools for pain.

When did you start having issues?

4 years ago, my bladder kept hurting and I asked to go to physical therapy.

When you asked to go to PT for your bladder, do you remember the doctor’s response?

They simply agreed to me going and I’m guessing never expected it to turn into the situation we’re in now.My hip began to hurt while doing PT for my bladder. It would hurt worse some days than others, but it would hurt nonetheless.


April 2015.

I received a call from Mom at the beginning of April 2015. She was crying, which she NEVER does. She let me know she needed to have surgery on her left hip. Her hip capsule was open and needed to be fixed. The tissue around her hip was so torn up, it reminded me of jellyfish tentacles. Well in simple terms, the surgery was costly and a complete cluster fuck. The doctor cut her open and didn’t really do much else. It left her in a brace for most of the summer, sleeping on the sofa per usual, but having to be assisted with baths, getting dressed, having meals made, grocery shopping, etc. She couldn’t move without my Aunt Diana and I slightly panicking. A year goes by and she’s in physical therapy every week but not feeling any relief.

April 2016.

A year has gone by and Mom walks with a walker or cane, wears a brace from time to time, and feels like shit 100% of the time. I receive a call and experience a little deja vu. She has been diagnosed with EDS and has to have another surgery. You’re kidding me right? A $15,000 surgery? Jesus. This time she was in the hands of 2 incredible ortho doctors that went in and cleaned her hip capsule up. They both said that they had never seen a hip capsule quite like hers. It was wide open and ready to be worked on when they cut her open. Same recovery process- brace, limited mobility, and a lot of being careful.

April 2017.

Doctors appointments every week, multiple times a week. Her freezer is filled with ice packs. She has a body pillow that is on top of her sofa. Epsom salt for soaking. She takes every supplement known to man. We’re doing injections for pain. She has a team of doctors that all are in communication with one another. We just want to find something that makes her feel comfortable.

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Physical therapy days are interesting. We learn. She works hard. Her PT specialist Leah is a God send.

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She’ll probably kill me for posting this pic, but I’ve been sneaking pics of her during stretches and pre-surgery for a while now. Sorry Ma!

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I need to Stretch stack

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SI Joint belt to the rescue, paired with the Katie where is my Belt stack

 

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The pain isn’t that Invisible necklace

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I need some Damn Sleep necklace

 

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Cinderella got a Glass Slipper, I want a new Hip necklace

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Could you repeat that? $15,000 surgery you say? K… earrings

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Let’s get Dinner to Go stack

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Stick and stones do in fact hurt my bones 

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Bone Spurs and Hip Capsules necklace

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I need to Stretch stack

As her daughter, it pains me to watch her struggle. I want to be able to take her to the beach, go on long walks like we use to, have dance parties…and we can’t. During the process of this shoot, I watched her closely. The lines on her face and the way she holds herself tell a beautiful story. One that I won’t ever be able to forget.There is no cure for EDS. Just coping and working through it and with it. We are pushing to get her to a place of somewhat comfort for now, and try to keep our heads up for the future.

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This photo took my breath away when I first saw it while editing.

Thank you again for stopping by. There was a lot of information to take in, and I hope you walk away having learned something new.

xoxo,

KW

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