Welcome to Gaia! :: View User's Journal | Gaia Journals

i heard the news this morning, though it was two days old.
a girl i knew, a friend, my former youth group kid (i was a leader), passed away last friday.

i've been waiting for the last seven months. ever since her mom said they were putting her on hospice. no one thought she would last this long.

i've cried several times, for so many reasons. such a bright, beautiful, patient, talented, wise, funny, curious, lovely girl. she was only 26.

the last time i saw her in person was in 2020 when my dad had surgery in this big hospital, and she was an inpatient there. we were all so hopeful then. hopeful her surgeries would turn her health around.
and she was so quiet and mature about it all. maybe she simply had no energy left even then.

i remember about 8 years ago. not long after i came home from korea, and i was dealing with my digestive issues and trying to get answers -- she was looking for answers too.
about 2-3 years prior, she had had a huge change in her health. she couldn't eat anything without pain and hives and it was awful. she tried every elimination diet. no luck. eventually doctors were saying she was a hysterical teenager (i mean she was a junior or senior in highschool. and they were blaming stress for her problems)
it wasn't stress. and we all believed her.
it took 3 or 4 years for her to get a diagnosis. and it ended up being a long string of diagnoses. all not great news.

she had ehlers-danlos but she had the evil trifecta accompanying it. she had mast cell activation syndrome, postural orthostatic tachychardia syndrome, and MALS (median articulate ligament syndrome) along with other constrictions of blood vessels (like nutcracker syndrome). oh, i forgot - she had graves (hypothyroidism). these all are very common comorbidities of ehlers danlos. and unfortunately she had them all.
it was the MALS i think that really got her though.
sometime in her teenage years, maybe around age 17, her joints being lax, and ligaments lithe, her bowel or the blood vessels that supplied blood to her bowels - got pinched between some ligaments. so every time she breathed in, she was cutting off blood to her intestines.
her intestines were dying inside of her. and this was why it hurt to eat.
i think that diagnosis took 5 years.

she had surgery to fix it. and it went well. but she had stop eating food. she went on TPN - which is like nutrients in a special IV.
the hope was that in time, her bowels would heal and she would be able to eat again.

but it did not happen. and despite another surgery for another constriction. despite medicines, treatments... her body slowly rejected everything. including becoming allergic to all the TPN.
(it turns out most people can only be on tpn for a few years at best)

i can't imagine the pain. and the disappointment.

and i can only hope that in the life to come, she is one of the first to receive a new body. a whole body. one that won't crap out on her.

i feel so bad for her family.

i dunno what else to say. it's so upsetting, disappointing, unfair.
she endured it so well. maybe there are buffets in heaven?
i dunno. gonna be sad for a while.