A Little Summary of Jami's Health
When life throws people lemons, some people use the lemons to squirt sour fruit juice in everyone’s face. Other’s use those lemons to make sweet lemonade. Not Jami. She throws a freaking’ awesome lemon-themed gala, complete with glittery lemon centerpieces, decadent lemon desserts, and adorable lemon party favors - all while she’s rocking a fabulous lemon inspired outfit!
Behind her love of life, glitter, and all things joyful - Jami has been really quiet through her suffering. I think she doesn’t want to bother anyone with her chronic illnesses. Even though she has every right to complain, she doesn’t want to burden others. She is thoughtful, caring, kind, and strong (so strong). She is constantly thinking of others and making sure that her friends and family are supported in their trials. She is a wonderful light to those who get to spend any time with her and she’s one of my most favorite people of all time!
Because she doesn’t share her health journey online, most people don’t know all that she is dealing with on a daily basis. Since you all have been so supportive in her life and you are invested in her happiness, I thought I would share a very brief summary of what has been going on lately. I don’t want to share too many details, because this is her story to tell.
After her brain tumor was removed in 2013, Jami began a long recovery process from the pains of Cushing’s Disease. She worked with a team of specialists to rebuild her brain, nerves, glands, bones, and muscles. She had her teeth repaired from all the stomach acid damage from years of vomiting from the Cushing’s. She had back surgery to help with her SI joints that got damaged from the Osteoporosis (another gift from Cushing’s).
She developed a rare side effect from the surgery called “Diabetes Insipidus”. Her body has difficulty regulating its own fluids, which can get very dangerous, very fast. She also has Adrenal Insufficiency - this is where her body can’t make enough Cortisol at the right time. The combination of these means a simple infection can be life-threatening to Jami.
We thought that her endocrinologist was helping her work towards her long-term wellness goals, but about 2 years ago Jami started deteriorating again. We didn’t know what or why this was happening. Jami has Epilepsy and as her adrenal system started going crazy, so did her seizures. In the past six months or so Jami has had some really scary seizures. They’ve had to call 911 several times and she even got to ride with the lights and sirens on (though she wasn’t conscious enough to enjoy the adventure). These health issues have been too much for the doctors to handle. She’s been transferred to different hospitals during her stays this past year. The main hospital doctor told my parents that Jami is too sick for them to treat and that they need to find a specialist for her ASAP.
My family all realized that Jami needs a dramatic intervention in her medical team if she’s ever going to be well again. This realization has prompted my parents to make the permanent move to their farm in Indiana. They are currently packing things and making arrangements and hope to make the move sometime in the next few months. My mom has been working diligently with specialists in these fields to find the right fit for Jami (right now it looks like they might be working with her at the University of Michigan-Yay for me cause that’s right next to my house!). But a serious shout out to my mom - she’s been reading all these research publications and studies to try and figure out what is going on with Jami. She is so smart and can weed through all those technical terms. Her diligence and willingness to learn has literally saved Jami’s life!
These long-term chronic illness are not the only things that Jami has to suffer with on a daily basis. She also has Interstitial Cystitis which causes excruciating bladder pain and requires surgery almost every year. She has Endometriosis and PCOS that make her suffer from pain in her uterus and ovaries. She gets persistent kidney stones and kidney infections caused by the medication they use to control her seizures, but they can’t change the medicine right now without causing neurological harm to her. She has chronic pain from many of these things. She’s an Ultrarapid Metabolizer so pain medication doesn’t work on her as well as it’s supposed to (in fact, a paramedic who treated her recently said he has been telling the classes he teaches all about Jami and how much pain medicine she can handle - she doesn’t get knocked out even though a giant football player would be passed out from the medication). There are a few other things that my mom has researched and we are anxious for her to begin working with a new team of medical professionals to hopefully put these pieces together.
Another reason why people don’t realize how sick Jami is: most days Jami’s not even well enough to leave her bed. Not even well enough to look at her phone screen without triggering migraines or a seizure episode. She often just lays in the dark, trying to get what little sleep her body will allow.
Anytime you reach out to her, it is appreciated. She might not respond, but your love it noticed and means so much. Many of you have reached out to her in her darkest suffering and it has made such a difference. The most important thing I hope Jami gets from our #TeamJami is to know that she is not alone. She is surrounded by so many friends and family who love her and who are there for her.
We are so grateful for your love and support!
- Jenni