zward95

[zward95]

Withering

Medical Neglect, Insurance, SOS

I'm writing to share this story for a couple reasons I feel need to be addressed. While I do need help of many kinds, and do ask for it here: HELP, SOS, accepting any and all help. I believe I will need to seek a medical lawyer or something. BUT, I also know that I am very privileged to be in the position of being able to write, think, ask for help, have support, to make calls, have insurance, and advocate for myself. Privileged in being educated in these specific fields and how to better navigate them. Privileged in being youngish and healthy enough to heal, able to cut out other substances, being able to live with family and work out and have back-up medicine (prednisone) to stay alive when that once was the only option; which is more than many others in history and across the globe, on top of having ongoing family support. I'm lucky in ALL those parts, and yet …  

I am being arbitrarily denied a life saving medicine, Stelara, which I had before; and slowly being left to feel my health wither without the ability to control it, while nearing what I thought was the end of this two year long adventure of fighting Crohns, Covid, C.Diff, and my colon. For all the work and luck and support, the decisions for my health have been taken from me, taken from my doctors, taken from the pharmacy, and are being held up by an insurance company (Ambetter from MHS) refusing to take appropriate action, and lying to me and my care team about it. 

I know for 100% certainty that my story, while bad, is not stand-alone. Too often these situations end with sickness that slowly eats away at the person and the stories don't get told or get lost in the grief which that family eventually deals with; and those experiences don't often get spoken to the public, and are rarely considered when talking about the dangers of our medical system, and of medical neglect, mismanagement, and negligence. The final results lead to a slow withering quiet sick passing, with promises of support while waiting on-hold to explain your issue to the next representative. I share my story because I genuinely don't know what else to do, and because I know I'm not alone in this kind of tragedy, one which is felt by a vast swath of people, which is a tragedy in and of itself.  

While my experiences with the problems of insurance and medical accessibility go back over a decade now, my recent issues are related to nearly making it to the end of multiple surgeries finishing in a full colectomy. Since my follow-up surgery in December, I have been cleared by the surgeon, everything has gone well and healed effectively. I’ve put on more muscle and been in the gym more frequently, so it's clear that I have the potential to heal, and things should be trending up. However, I still have not received my primary medication to manage the Crohn’s disease at all throughout this time. This is a medication that is supposed to be given every 8 weeks to manage ongoing inflammatory response and Crohn’s symptoms; the disease which caused the need to have surgery… which has not been given since Nov 7, 2023.

I had to change insurance at the beginning of January, so it can be expected to be a challenge, but they ignored the requests from my doctors office and pharmacy, and we later learned there had been an issue with auto-filling my insurance info with a previous plan. Ridiculous but understandable. Throughout February there were multiple calls to try and address the issue, but it was rejected repeatedly, with neither notice being sent to the GI doctor or to me, nor an explanation as to why that’s the case. In the first week of March, I was hospitalized in the ER for a day with severe pain, swelling, inflammation, and Crohn’s related symptoms, which has ever since been treated with steroids, prednisone, which are not meant to be long term treatment. 

It was after this that my doctor and I began pursuing getting the medicine especially seriously, but with no luck. Even after covering the ER visit, the medication has been denied repeatedly. Appeals have been requested which were denied. Further urgent appeals for emergency requests were submitted, but rejected as being urgent. And most recently, I was told that none of those appeals were in their system, and would have to have my doctor contact them again to submit information; directly counter to the conversation I had with the GI nurse, blatantly lieing.  I have since gotten set up with the manufacturer of the medication for a copay assistance program, and next will be reaching out to try and get it directly; but it is clear that this is wrong. I am insured and have had coverage. I was previously on this medication and have a history of it escalating to this and responding effectively to it. Even financially, the cost of covering my hospitalization for THIS EXACT PROBLEM, ends up being greater than the cost of giving me the medication which would prevent it. This should not be the case, and it makes no sense to me.

 Part of me really just wants to get my medication and to find an escape from this trap of being given just enough medicine to stay alive, but not enough to reach true health and begin life anew and find stability; BUT another part is furious that it has now been over 3 months of medical neglect that has resulted in another hospitalization, and unknown damage due to inflammation and lack of treatment and that this is something that should be fought. Should be held up for examination and reflection of a broken system that is leaving people to slowly die. Somehow, Ambetter and all health insurance companies should be held accountable

[zward95]

While finishing my last piece, this one fell off my wall right in front of me, almost onto my easel and scaring the absolute shit out of me. It being one of my very first paintings, done while almost certainly procrastinating, and drinking wine in the basement on a boring undergrad Tuesday. I took it as a sign for me to do a little work, and I'm super happy with how it turned out. When I look at this piece I think about the influence of time, and our relationship to it as humans. As humans, our ability to recognize the passing of time and experience anxiety about how we spend our time, is a strange and unique thing compared to other animals. In the technological age, it often feels like time is speeding up, but being able to look into the face of time by watching the sand fall from an hourglass, has always brought a sense of peaceful excitement for me. https://www.instagram.com/p/CTqP5Vns7hhUQQY6xAvoS2avlQEWy5J70QLgI40/?utm_medium=tumblr

[zward95]

Getting sun ☀️ https://www.instagram.com/p/CQbPYkpnStWh5_Zbf0Icc3QvayKYAE2ZvqbHk80/?utm_medium=tumblr

[zward95]

New haircut, who diss? https://www.instagram.com/p/CPGjn1GHuM_WoddhrvThfxEVP9SQtCwyh6O-zE0/?utm_medium=tumblr

[zward95]

[zward95]

First of many wandering adventures here in Colorado. 🏔 https://www.instagram.com/p/CO4C-GeH9cGq_mOnKTQ9Jf1Q-RgE5Y2vuBY2Ps0/?igshid=155wu83lgk5qd

[zward95]

LIFE NEWS! I got a room and will be moving to Fort Collins, CO as of Tuesday! Shout out to the awesome server for the single scoop of ice cream and a while bottle of syrup. https://www.instagram.com/p/COluAignT-1zq4NmhFPIjqdtrgWcYP5erR5N2c0/?igshid=13qsr9mnz1nmp

[zward95]

Finding new artists is just an impeccable feeling. 🔥🙌 https://www.instagram.com/p/COiSFVQnqGwKdmrx5MCaJdefGvy5jKnawVsJuI0/?igshid=1wjhfrlrbsy35

[zward95]

Feeling wavy and 90’s #pourpaint https://www.instagram.com/p/COIoQOGnIsByLQH_SpJ5fRfVdPYDLNxatCfkWk0/?igshid=11zhidy8d7tdy

[zward95]

This piece has taken Multiple weeks to get the pattern to be thick enough to do pours in. Pretty happy with it. 🙌🙌 #painting #pourpaint #arttherapy https://www.instagram.com/p/COHVlEdnZjKLb-GJjwWbVvIYNF3C7J8vfvnQLc0/?igshid=jr6wyv3l22if

[zward95]

Gender is dumb. People are cool. #art #painting #glowpaint https://www.instagram.com/p/CNRXKS-nlk1Ekm0022u4GkgekvzVgc13U4W5m00/?igshid=1aptyq066tvsk

[zward95]

New haircut. https://www.instagram.com/p/CMyV3qAnQxvf093g7aUTGP5gegd9zuHsGjzMU40/?igshid=14q59i403cxjj

[zward95]

This one came out cool. Colors picked by @duck_lucero https://www.instagram.com/p/CL8gyALnM-zVe8LDObMUzysvuvx_Y4MvQtWHWE0/?igshid=19mtevm0t01ew

[zward95]

Messing around with single color pours. #pourpainting #art https://www.instagram.com/p/CL8grO7nz5dq2f16VF0-vXjRCac6ZF6qDbJ1gE0/?igshid=1d0gzd70wkjqo

[zward95]

PINK SPLAT #pourpainting #art #artistsoninstagram https://www.instagram.com/p/CL48_HNnAhf2c7roRJoVUibJ9WiyA88O4GLueA0/?igshid=o8wue07xum2u

[zward95]

Loving this one. 🙌 #pourpainting #art https://www.instagram.com/p/CLk7n-RHM3TkVE5UuHnOscQo5w4V-sDFPr5FL00/?igshid=dgz1htafg5fd

[zward95]

Swiiiirrrrllllllll. My new favorite. This is the biggest canvas I’ve done. 🔥 #pourpainting #art https://www.instagram.com/p/CLkRNIwHucOgaxq6084ARQvXY8xxq6lnfjFQFI0/?igshid=duw7pu2668a0