pop, fizz, clink.
boy am i ready for a new year. a chance to get things right. a chance to do better.
as i look back on 2017, there are so many things that i must acknowledge that i lost – my health, my job, my savings and nearly my home. but what’s most important, is that even though i thought i lost myself, i didnt. i discovered many things in 2017 that have made me a better person, a more empathetic person and a better patient mentor. i also discovered that when you hit bottom, the only place to go is up.
still dealing with a new neurologic diagnosis and waiting for another unknown that has been looming over me like a dark cloud for the last several years has worn me down. it has broken me at moments and tested me during many others.
in january, i underwent a simple procedure to test for certain antibodies for several degenerative diseases, as well as to rule out any possible infection that was causing my symptoms. thankfully, i was infection free, but the spinal tap came at a cost and not just financially. about a day after my test, i developed a terrible mind-splitting headache, something that can be a result of what’s called a “spinal leak”. i had to go back to the ER to get not one, but two epidurals, which were both very bone chilling due to an error made by a medical provider. thankfully, the anesthesiologist that helped me, held my hand and let me lean on him while another doctor did what he needed to do. about a day or three later, and much laying on my back, things went back to normal.. until they didnt.
if my gut wasn’t triggered by my head, my head was triggered by my gut. and during the winter months, my arthritis wages a war on my body that eventually led me to where i am today.
i have to believe that things happen for the greater good. for me, losing my job to illness was punishment at first. it took me nearly 6 months after leaving to realize that my body is just not cut out for a salaried, full-time job. ive begun writing full-time, for a great company who supports me and never expects more than i should give. let me say that again. when negotiating, this company told me to “only do as much, when i could and wanted to”. working with health advocates writing about many different types of diseases, their clients, as well as content writers, obviously deal with illness first and life second. soon after, i realized this was what i was looking for, for so long.
it wasn’t long after that i secured a part-time job. and then a 3rd and a 4th. it seems i was busier working part-time than i ever was full-time, but it was a good kind of busy. my priorities finally began to fall in line, for what i needed to do for myself. i got in line with my doctors and made sure i had what i needed to be successful in the coming months.
and then i lost my insurance.
turns out, medicaid doesn’t like when you make $7 over the allotted amount for the month. and just like that, i was in limbo. i was a 29 year old woman with many pre-existing conditions, terrified of what lie ahead. i had already been waiting 3 months for a prior-authorization for my next biologic to go through… when i lost my insurance. the last day of october, i received a letter in the mail stating my coverage was ending november 1. what a kick in the ass. how many more times could i be kicked while i was down?
so i began to live in a state i never thought id live in: i was uninsured despite being ill.
so much that others take for granted that the ill can only see in dreams and in desperate moments of hope. when is health actually valued to someone who has theirs? ive spent the last few months getting by on what i could. at one point, i qualified for food stamps – something i never thought would reach. im so grateful for those 3 months of help, as my nutrition has already been at fault by flaring quite a bit since my last scope.
it wasnt until i started serving the homeless at a local shelter that i truly looked up from my knees in my weakest of moments and realized how ungrateful i had been for all that i do have. i may not have found Remission, i may not have found a drug that controls my neurologic deficits and i may not have been insured, but what i did find was far more significant than myself. i quickly realized during my interview how closely i had been from being homeless myself, that things can change – for anyone – at a moment’s notice. 6 months ago, i could have ended up at a homeless shelter, and now i find myself serving the guests there working what few hours my body can tolerate in addition to writing full-time, caregiving on the side as well as a pet-sitting business.
you win some, you lose some. by losing, i won so much more
i dont wish being uninsured (& uncared for) on anyone. but i learned a lot in the process. have you noticed how many “i” statements are in this blog? i have – pun intended. throughout the last few months, little by little ive started to regain a little bit of my self-love that i had lost for myself throughout the last few years. i began doing things for myself, in my best interest, even though someone else may have been impacted in a good or bad way. i had to back away from social media quite a bit (as well as my blog) in order to regain a sense of purpose, timing, and appreciation for living in the moment.
in my fight, i learned how much my doctor and care team had been fighting for me, despite how long we had to wait. i learned how much other doctors, some many miles away from me cared and made sure that patient voices like mine were heard. i learned how much i must truly depend on myself to advocate for myself, instead of others. and i learned that was a really difficult thing.
things happen for a reason and even with what little i have right now financially, the little in my heart & head means so much more. and in all of the jobs i do, i have found a way to serve others. maybe it’s selfish to find such happiness in serving others. it’s something i’ve thought so much about this year – my ability to care for others so deeply, yet lack self-care for myself. so that is what i continue to work on. not as a resolution, not as a “turning over a new leaf”, but as a deeper sense of who i can still yet be to others, and to myself.
i hope 2018 brings each and every one of you stabilized health, a solid, honest support system, enough food to eat, shelter to keep warm and self-love to continue fighting whatever it is that you may be fighting.
you matter. i hope part of your goal for next year includes self-love, self-care, and self-admiration…. for as we all know, you cannot pour from an empty cup.
all of my heart,