It has been a year since my upper teeth were ripped out. While some of the updates to my life are good, there are plenty more issues that rise up. Specifically in how much I feel I need to do before and while I continue to try and get my teeth removed. Though, at this point, it is bringing myself to actually make the appointment. The machismo from the adrenaline has worn off, and I find myself terrified of another go. While the pain was not spread over a weak like the torment I am used to, the agony of the removal of my teeth sticks with me. While I can take comfort in it as inspiration for horror plots and ponderings that hopefully will become the horror stories to define my legacy one day, but the terror of another go holds me back. Like it did in writing this.
I suppose, at this point, you could clearly call my focus on the health care system a bit of an obsession. Though, I personally do not know how I should otherwise approach a situation as I have experienced. The years go by, and still, I have more to write and ramble about. Still, I have more that makes my mind throb with conflicting emotions of manic outrage and debilitating depression. All the while the buzz of anxiety add to the haze, while the ADHD warps me completely. Fuels the fire of the rest by being the name for a peculiarity in my mind I had since I was born, I’d imagine, as I was diagnosed with it at the age of 5. However, I’ll get to the bumblefuck that was my ADHD treatment (or lack thereof for the past decade) in the next ramble. This one is to bridge the gap I mentioned in the last one.
As a brief recap, on March 23, 2018, I went in to have all of my teeth removed. This was required as a lifetime of one of my disease’s flare-ups mixed with a decade (around 16-20 to a week ago. More on that later.) of the issues of suddenly taken off medicine for your ADHD and forced to stay off it no matter how many damn doctors/shrinks/pill-shrinks you see explaining your symptoms causing the stress to increase and the flare-ups to become more frequent. The constant vomiting exacerbated an issue a sugary diet may have caused and utterly demolished my teeth little by little. However, thanks to complications from how infected these teeth had become (having been unable to do anything due to co-pay costs, then not having insurance, then Medicaid being a headache to find anyone to be able to get it fixed) which lead to a few hours of pulling, waiting, pulling, blah blah… I was referred to an oral surgeon.
Which is where the Health Insurance Shenanigans begins. I am quite familiar with these shenanigans, as they have been happening since I started. You see, the many different Nevada Medicaid healthcare providers who have insured me will have a list of the different doctors that will take your insurance. It sometimes might even claim to be able to tell you if they accept patients. This would be highly convenient if it did as it said. Instead, whenever I wanted to find a doctor, I would have to go down the list and call them one at a time. The moment Medicaid is mentioned, their tone sours ever so slightly. They tell you that, regardless of what the list on my provider’s own list says, they do not take Medicaid. The other constant was that if they DID, they were full on patients. If the did and they had openings, it is months down the line. When you need to find multiple specialists to deal with multiple issues caused by the same illness, this gets highly agitating. Frustrating as the ones I believed I could complain to like to assure me they understand it as. Why I do not believe them is they also seem surprised at how FUCKING PISSED OFF fucking up my health makes me.
Remember these shenanigans, I will be bringing them up often.
On March 6th, 2018 I received a letter from the allergist, who had been (poorly) helping me with my HAE care, that my care with them has suddenly been terminated. Now, I had only a few months prior FINALLY received from this doctor a pair of highly useful medications. In between the belittling, lecturing, and talking down to I got more than treatment, I finally was prescribed HAEGARDA and FIRAZYR. The first being a medication I WAS taking twice a week. It was rather painful for 15 minutes upon injection, but that cleared up quickly. The other was to be used in the event of swelling, injected like an Epipen (WHICH IT GOD DAMN ISN’T) might be at the moment of attack. With these two medicines, I had been comfortable enough to make my appointment with the dentist in the first place, which after a few appointments before I received the letter had been set for March 23rd.
Suddenly I received that letter, which was soon followed by the provider of the two medicines telling me my YEAR LONG PRESCRIPTIONS with them had suddenly been pulled. Something they were confused about, MUCH LIKE IS WAS. Upon calling my allergist’s office, I learned that the reason had been APPARENTLY I wasn’t taking it. Which is confusing, as I had been, and had only missed the one appointment before the letter thanks to the INFECTION IN MY GUMS I NEEDED REMOVED along with all the other damn issues I was having and trying to mix making me have troubles sleeping and making an early morning appointment. Something that I apparently need to suck up.
This reasoning SHOULD have been easily refuted by the constant deliveries of the medicine TO MY DOOR. The nurse that had come and taught me to use these medicines, THEIR APPROVAL THAT I KNEW WHAT I WAS DOING. As well me having sharps container with plenty of the injection needles I used. They did not wish for any of this, and after angry demands given I HAD A SURGERY APPOINTMENT for my teeth which has a DAMN HISTORY of causing swelling of the throat. So they extended it for 30 days, a bridge period, after constant calls that now just sit in my head like an angry flurry. Mixing them up, but the point is I had to FIGHT to make sure I had enough of the medicine for my blood disease so I could go through the dental procedure with the lost chance of a POSSIBLY FATAL flare-up. Fun.
So, once I was healed up after the dental appointment so I could start calling and get the bottoms removed… The Healthcare Shuffle appeared! This is when I tried to call the Oral Surgeon I was referred to, they said they never received it. I call the Dentist who sent it and they said they sent it to my insurance. I call my insurance and they first said they haven’t received it. Later say they do and sent it but the Oral Surgeon never got it. WHILE all this was happening, a far more problematic issue arose. Keep in mind, this is all happening as I am still getting over the fact I now have these annoying dentures that I am STILL angry over.
The medicine ran out. So, of course, I had to find someone new to prescribe me it. This had the issue of me needing to FIND someone who would do this. The Primary Care Physician that I had was uncertain himself and kept telling me he knew nothing about the disease. After explaining, he referred me to a Hematologist and Allergist… IN VEGAS. (This is 8 hours away from me on a good day or requires an hour and a half plane trip for something I likely need to do multiple times. I live in a city, not a small town. That has MANY ALLERGISTS AND HEMATOLOGISTS.)
Annoyed by this, and after Medicaid Shenanigans, I eventually got an Allergist and a Hematologist referral. Upon calling the Hematologist, they refused! I was highly confused, as they kept repeating that I should go to an allergist. They don’t treat allergies. Hereditary Angioedema is a blood disease. NOT an allergy. Apparently, nothing can be done and I have still yet to see a hematologist. Joy. The reason? Even though I explained extensively this was a genetic blood disease and the symptoms only could be COMPARED to an allergy to stress. IT DOES NOT REACT TO ALLERGY MEDS. An epipen makes the area I inject just swell up yet give me the energy for my skeleton to feel like it wants to run around the block without the rest of me.
So, not surprising, this caused a lot of issues with swelling. Inevitably, I had an episode involving my gastrointestinal system. This time, it was bad enough I couldn’t seem to use medical marijuana to cover the symptoms until I was well and had water in me. So one Ambulance ride later I am in a hospital bed… Oh, wait, no, I am at the front desk of the emergency room waiting for a bed for a bit. Until I puke enough to be a disturbance. However it still takes quite a while before I get the main thing I want and have been kept from thanks to my body violently puking it up. I wanted an IV with something to hydrate me. The drugs could wait untiul the doctor, but as time went by and it felt like an eternity, I kept being told by all the people checking on me that I had to wait for a doctor to get my damn liquid.
All the while my fiance and my father are both helping explain that this was, without any doubt, an attack from my blood disease. It was an hereditary angioedema attack, blah blah… My discharge papers (useful in tracking my disorder and proving problems.) instead say it is some ‘unspecified vomiting type’ instead of maybe ‘blood disease triggered vomiting’ or ‘HAE triggered vomiting’, ‘genetic disorder triggered vomiting’. Think you get the point, more something that proved the medical staff were actually listening to my concerns. Attempts to fix this so I had proof with disability was met with them saying once that is written down it is permanent.
Then, five months later, it happened again.
Luckily, the Allergist I eventually found turned out to actually have heard and seen a couple others who had this disorder. He knew of medicines and, instead of feeling like I needed to teach my doctors… I was given hope! I was given a vial of Firazyr. He said it was extending an olive branch, and I feel this will be what I remember when I try to think of the emotions needed to write a scene similar. I have never felt hope like I have then. Hope that likes to come and go, but at least I have one doctor at-bat for me.
Until a couple of months ago as of March 20th, 2019, I FINALLY was put on a new medication. Tahkzyro which I take twice a month. HOWEVER, I am still getting push back when it comes to getting the Firazyr, which would help me with my anxiety over the next surgery to remove my bottoms. Which, now that I have Tahkzyro, I once more have to take on HealthCare shenanigans to try and figure out who gets the god damned honor of removing my teeth. As the ones I was referred to HAVE the damn referral… But they don’t take Medicaid. SEEMS THE INFECTION IN MY BOTTOM TEETH GETS TO STAY! Just get to keep draining that thing myself. GUESS WE ARE FRIENDS FOREVER, ME AND THIS INFECTED TOOTH! Though it is crumbling away like the rest. It is down to the gums now. Though, I would like the Firazyr so I can inject myself IMMEDIATELY upon noticing my throat swelling. Never been asphyxiated but something tells me it ISN’T ALL THE FUN AN END! Especially at twenty fucking eight. So you can see my troubles. That doctor is still great, and makes a good point, I just think I need to make myself a bit clearer.
The years feel like they become less and less about me finding my place in this world, healing, and learning but instead more and more about me working as quality control for a broken system with no desire to fix itself. With every passing event involving them, I feel less like a patient and more like the data point I clearly am. With articles full of professionals professionally talking about diseases and medicines without much mention or care for the patients. The ones who that was made for.
For patients like me to heal. Not for people to make money. That is a side-effect of the job they signed up for. To fucking CARE for your goddamn patients. Not be coerced into giving meds left and right (or taking them away as a debate on whether or not ADHD FUCKING EXISTS goes on) or whether you believe the name given to the collection of symptoms I show. My disorders are not Cryptids. I have blood tests, medical papers, and diagnoses. Not blurry pictures of my blood viewed through a slide where fragments of the disease are seen peeking over their shoulder as they rush into a forest of red blood cells.
My particular disorders that I had since birth (ADHD and HAE) were caused by my body’s INABILITY to produce something. So if someone who CAN produce it takes it (least in the sense of ADHD as I doubt anyone else will benefit from a c1-inhibitor. No more than insulin if they aren’t in need of it like a diabetic) then of COURSE something different will happen. Of course, they might get high. That is not my fault as the patient it was made for.
As the point I am trying to make is that I do not feel I have been treated as a patient, I feel I am given more paperwork and calls than a cubicle worker. I feel I have to study more about the laws and practices to keep myself from being further burned. In between the Madness. The Pain. The Suffering that ALL OF THIS has inflicted on me. In between the new disorders this has caused me, particularly my obsession.
All I can think of is how to fix this. How I keep seeing articles, posts, and websites full of cries for help at a broken system. Of people fucked over, lacking their medicine, and the only ones getting the fucking attention are the dipshits who thought that taking someone else’s necessity would be a good way to get high. A good way to ‘focus’. To ‘relax’. While you use that as a fucking excuse to let people like me suffer, and further excuse it by brushing us into a group of people who just ‘slipped through the cracks’.
This obsession has grown now. Especially from the subject of the next article, ADHD meds from the perspective of someone who was one them from the age of 5, had them taken somewhere between the ages of 16 and 20 (my memory is incredibly hazy in this period thanks to the damn medicine being taken away) and getting only mild relief from marijuana replenishing my Dopamine… But that isn’t all Marijuana does nor all ADHD needs. I FINALLY am being treated, though it is just beginning. Still need to find MY medicine. It only took a decade for them to admit they were screwing with me. The lengths of my rage, again, is the subject of the next article.
This one was about how this madness turned me into someone who believes his job is to be a Professional Patient. Being talked into long commutes, long waits waiting for a doctor who will drop you for being late when they are constantly 45 to an hour late. Constantly filling out paperwork and debating about the fact my problems EXIST. Being treated as too young to be suffering. To the point, I don’t know what else to do. When you are too fucked up to work, explained in an earlier article, too fucked around for college, and the only thing you can apparently do is smash your rage against a keyboard and hope spreading your story around for no one to read will get something done.
If not? Then no matter what happens. If I die from malpractice or my disease, if I am killed, if I am silenced. My words on how this bullshit has made me feel will be, hopefully, somewhere.
The internet is notorious for being difficult to clean thoroughly, after all. If you do a little light digital legwork with the intention of being annoying as all hell. Especially since I got denied for disability again. Next time, I have to go to federal court apparently. JOLLY GEE GOODIE.