Are You Being Served?

in·ter·sec·tion·al·i·ty
ˌin(t)ərsekSHəˈnalədē/
noun
  1. the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.
    “through an awareness of intersectionality, we can better acknowledge and ground the differences among us”

    The state of Arizona doesn’t believe that I exist. I’m a woman with a bachelor’s degree, but I also have some rare diseases that have disabled me to the point that I am unable to work. I really had worked my ass off until I had my last shunt failure and surgery, when my neurosurgeon threw in the towel and gave up on me. The judge that I sat in front of for six minutes in March of this year noted in my paperwork that I had an exceptional work history. So my monthly pay is above the poverty level, because it’s based on the amount of take-home pay for the past 10-15 years (at the judge’s and state’s discrimination and calculation).

    Let me back up a little. I got my official judgement saying I’m disabled. Yay. Then my attorney told me that I might have to wait a number of months to see any money. But on May 24th, I got a call from the federal office saying that my money would be released on May 27th. I asked how it would be paid. They said it would be sent how I asked it to be sent. I asked how that was possible, since I hadn’t specified. They said, oh, it looks like we have info from Arizona. (Instant panic, since I haven’t lived there for 3 years.) I said no, absolutely not, I have all of my info updated for Minnesota, there’s no reason for it to be sent to Arizona. They said too bad, if you want it sent to Minnesota, you have to go to your local Minnesota office.

    So I did, on the morning of Friday, May 25th. I was a little worried because it was right before the holiday weekend. Luckily it wasn’t a long wait. But I found out that the money was already sent to Arizona – they didn’t wait until May 27th. It was sent on May 22nd. My former bank in Arizona reopened my account, accepted this rather large amount of money, and just sat on it. They didn’t tell me, and didn’t send the money back. For days. I was able to work it out so they could send the money to my current bank so it wasn’t lost. Anyway…

    So, while at the Social Security office making sure they didn’t send anything else to Arizona, I mentioned Medicare. The man helping me said, oh, didn’t you know, you’ve had it since January of this year? Another panic. I knew just from reading some info and talking to others that meant that I had a deadline coming up in just a few days. I had to sign up for a supplemental insurance policy and medication policy or I could lose out on tens of thousands of dollars. And Monday was a holiday. That meant that I had Tuesday, Wednesday and Thursday to make phone calls and sign up.

    This is no small task. I take 19 prescription medications, one of which is a weekly injection. The doctor that prescribes that had actually been working on getting an exception because my condition has been worsening. I reached out to the Minnesota SHIP office to talk about supplemental plans and medication plans. We found a supplemental plan that costs hundreds a month but could possibly transfer if I moved out of state. For the meds, I plugged in all of the names and we found out the injectable is not covered. It costs $37,000. Welcome to the world of rare diseases! So I had to call the manufacturer and talk to them about a patient assistance program, which might also allow me to get on a higher dose.

    So now back to Arizona. When I talked to their local office that helps seniors find supplemental plans for Medicare, they couldn’t believe that a disabled person under 65 had a disability check that was above poverty level. It isn’t a huge amount, mind you, but it doesn’t meet the standards for poverty. So I can’t qualify for medical assistance as my supplement, which is their only option in Arizona. I also can’t qualify for utilities assistance, transportation assistance or food assistance. The woman on the phone had very little experience but offered to find out more info and call me back. When she did, she told me to buy the policy in Minnesota and take it with me, as there was no hope for me in Arizona. 

    So Wednesday afternoon, I purchased the supplemental plan for Medicare and verified it could come with me (in writing) if I moved out of state. It’s possible it’s going to become much more expensive, but not nearly as expensive as having nothing.

    Thursday I finished sifting through all of the medication plans and tried to pick the best one. It was the least restrictive with the medications that I currently take (most of them wanted to restrict my Singulair, for some reason, of which I need double the normal dose). So I managed to get everything signed up before my June 1st deadline.

    However, while all of this is going on, there’s something else that’s been cooking in the month of May.

    Actually, this started in March. I had a crown fall off. A bunch of decay was discovered – first on that tooth with the crown, then the tooth next to it, then two teeth above it, then a bunch of cavities all over my mouth and it’s painful to eat or drink. I actually had to file a complaint against my dentist that I was seeing for about 2.5 years because he was physically abusive. When he was examining or treating me, he would pull my mouth roughly – so much so that the last time he left bloody fingerprints all over my exam napkin, and I had a swollen face for five days after. It was only after my massage therapist asked me who had been abusive with me that I filed the complaint.

    The complaint was supposed to have been anonymous, according to my insurance. However, they revealed all of my info, and the dentist counter-complained (like I was the asshole, because I was the one sitting in the chair with my mouth open). Then my insurance told me to go to two other dentists, which I did, and then they told me to go to my original dentist, and he refused (DUH), all to get this decay and a root canal taken care of. The two new dentists told me that they wanted me to go fully under and to be in an oral surgeon’s office or hospital because of my anaphylaxis history as well as my inability to numb with Novocaine. They referred me either to the U of MN or to Hennepin County Medical Center (HCMC).

    I called the U of MN for five days straight, and got different answers each day. They would say they didn’t do sedation, or didn’t take care of complicated patients like me, or were too booked. In the end, I got nowhere. So I turned my attention to HCMC, which happens to be a trauma 1 hospital. They told me they weren’t taking new patients (a huge lie). Then they told me to get a note from my doctor specifying which medications I’m taking – but that was only after they refused to answer my messages for 3 weeks. They wanted to see if my medical assistance would run out before they had to do anything.

    Well, ta da! First day of no medical assistance, June 1st! That means I get absolutely no dental coverage. So even though they have been aware of this issue for a few months and I’ve done everything they told me to do, I got zero help. By the way, it’s likely I’m having the trouble with the decay in my mouth because the abusive dentist put metal back in my mouth even though I told him in writing and verbally many times I’m allergic. I found out after the two other dentists examined me that he put metal-based crowns in my mouth after I paid thousands to remove all the metal in my mouth because of my allergies.

    I’ve already talked to my dental office that I used to go to in Chandler, Arizona for 11 years, and they have an in-house plan. For $100 a year I can have my cleanings, checkups and x-rays, and then 20% off of fillings and other stuff. So that’s the route I’m going to have to take. Plus I like them and I know they’re not going to rip me up and make me bleed on purpose.

    If there was ever a time that I have felt the impact of being poor and being female and being ignored completely, this is certainly one of those times. I’m sure I’ll have many more opportunities.

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Hit Me Baby One More Time

Today I had another dental appointment, my second for the week. I had thought this would be the “easy” appointment because we were just fixing a broken filling in the back right bottom tooth, part of the whole series of fixes that are a part of the issues that are being caused by me clamping my jaw in my sleep and cracking and breaking all of my teeth because I’m in so much pain.

I should have known that the first bad sign would be the pedestrian who walked out in the middle of the road without warning. My cab driver slammed on the breaks and left us both gasping, and then swearing at him; he just strolled slowly as if he didn’t care that he had just tried to compete with a couple of tons of metal and his human body sure would have lost if my driver would have been any closer whilst trying to slam on the brakes. Maybe he was tired of his life and thought today was a good day to die. Maybe he figured he was just a short ride from five different hospitals and it would be a couple of free nights of room and board with painkillers as the cherry on top. Whatever his reasoning for being a jackass, I was ready to open my door and beat him with my cane. Fortunately for him I was running on 80% blindness, a torn left shoulder cuff and an appointment to keep.
2016-08-26 11.17.14

I was called back for the appointment and the assistant introduced herself as Brittany. After she got me set up with the bib and the ugly-ass biker sunglasses (because that’s all the rage now, for dentists to put safety sunglasses on their patients while they drill and shine bright lights in our faces – but really I think it’s so they can’t see us crying), the assistant dentist came in to start me on the Novocaine shots. She informed me her name was Brittany too, so I was officially being worked on by two Brittanys. Yea for something easy to remember in case I had to yell!

The assistant dentist put the swab of numbing gel in my mouth and I thanked her, telling her that the main dentist didn’t do that at all on that side for me on Tuesday. I said I believed that he was trained in a war zone. Both of the Brittanys got really quiet and looked at each other over my biker glasses, and then the assistant dentist tried to make a weak joke, like “Oh, you know, going to dental school is kinda like training in a war zone, ha ha!” and I said, “But I’m right, aren’t I?” and they said, “Yes, you’re right.” Okay, score one for me and my ESP. Sometimes I don’t always like to know everything, but lately the universe has been finding ways to make sure I know. None of this blissfully unaware shit.

Assistant dentist Brittany started doing the shots. As usual, my heart rate started jumping up. I felt like there wasn’t a lot of numbing going on though. So she went for another round, this time going on the inside of my teeth along the gums. The Brittanys went away for a while so the numbing could kick in, and I did a few exercises with my mouth to encourage the Novocaine to spread, like silently mouthing “Unique New York.” I could feel my right jowl going numb, buy my tongue and inner gum line were still feeling normal.

When the Brittanys came back in, they decided to start drilling. I warned them that I still had feeling, but they guessed that I was just feeling pressure or temperature. Now, kids, I know the difference between pressure and nerve pain – I’ve been through 9 lumbar punctures and they’ve hit my nerve bundles with needles every time, it’s really freaking unpleasant, and it can’t be compared to feeling a little cold. So after the third time I said “Ow!” from them hitting a nerve, they finally relented and assistant dentist Brittany did a third round of Novocaine. She told me I should feel the difference immediately. I told her that I didn’t. She sighed, went in for round #4, all along my gums on the right side and hit the juncture between my upper and lower jaw, and gave it a few more minutes to kick in. Finally it wasn’t completely numb but it was just enough numb that we could drill for about four minutes and get the rest of it taken care of.

Generally speaking, most dentists and assistants can handle two instruments apiece. Assistant Brittany was struggling with two straws and a mirror and I was nearly drowning, so I offered to do what I did before – I held one of the straws and kept my hand out of their way while they did the rest. They thought it was great.

The most difficult part was the filling. They were trying to keep the very back tooth dry while they put in a white resin filling (because I’m allergic to mercury fillings so it had to be the resin), and they were doing all kinds of things like moving my tongue and putting cotton wads in my mouth and triggering my gag reflex. They actually got me so badly that I thought twice I was going to throw up all over myself, and at one point I had grabbed their hands because I was ready to move them out of the way in case that happened. I had tears streaming down my face again. My stomach heaved. The Brittanys cooed above me, “I know, I know, it’s terrible, we’re trying not to make you gag, but it’s in the toughest part of your mouth to get to, try to think happy thoughts, wiggle your toes, oh good, you already are, just about three more minutes now, try not to throw up, we’re nearly done, you’re doing great, you’re doing really great, it’s almost time, that cotton is awful, what do you have for plans this weekend?” It was absolutely ridiculous. I checked my makeup afterwards; I expected to have trails of black eyeliner down to my chin, but I had forgotten that I had sealed it this morning in anticipation of the shit show and it had survived quite nicely. (Side note: I strongly recommend eyeliner sealant available from Meow Cosmetics – it’s the consistency of water and you put it on sparingly and must let it dry, but man, it is GREAT for keeping your makeup on longer!)

This is how I think I can help, as a patient: Have me sit upright for the first part of it so I can help position everything like wads of cotton; if I know where it’s supposed to go in my mouth, I can probably make it happen without making myself vomit and without having to fight gravity so hard. I know that they were trying to get everything done as quickly as possible, but just like I helped with the straw, I can also help with stuffing cotton in my mouth and not barfing. If I can handle my Ren & Stimpy nubs for teeth to eat with for weeks, then surely I can handle that.

Just as the Brittanys predicted, as we’re rounding up to dinner time, I’m starting to get some feeling back in my mouth.

I’m Bad, Like Michael Jackson

This afternoon I went to a dentist appointment that I knew would be stressful, physically. The plan was that we would be “seating” my two crowns on the bottom left. Last week one of the temps fell off and I was told by the receptionist that even though I was in pain from the exposed bone/nerve that I had to wait until my appointment today because they had no time to see me. There was also a hole in the other temp that managed to stay on but obviously did not do a lick of good for the entire 26 days of its existence.

So when I sat down, the dentist and assistant said, “So how about we also get to the catastrophic crack on the right too?” That meant that my entire bottom jaw had to be numbed. The dentist started putting the numbing gel on the back left corner, but we both knew it was just for show. He was in a hurry and soon he was bracing his body to go for the stubborn juncture between my upper and lower jaw; I saw the trace of satisfaction on his face when I moaned, the tendon in my jaw yielded and the needle felt as if it went all the way through to my ear. After doing about a dozen injections along the inner and outer borders of my gum line on the left, he attacked the right, and decided he didn’t want to slow down to make me the least bit comfortable with numbing gel. This time I had tears running out of the corners of my eyes while the assistant shouted that I was doing great. Not a few times I thought to myself that this is either the office that they send patients who are super duper tough, or they send patients who they don’t give a damn about beating up.

Still, it’s important to keep your sense of humor as a patient, or so I think to myself. This is my reasoning every time when I am preparing to be pummeled by a member of the healthcare community. I always think that if I can somehow appeal to their humanity that they will see me not as a number or as cattle, but as a human with feelings and needs.

While we sat and waited for me to lose my ability to speak, some Michael Jackson came over the sound system. Just as the dentist came back in the room, we were practicing our “hee hee”‘s.

So that was our running joke until it was time to get serious about getting the temps off and the permanent crowns on. They didn’t numb me enough. I got a few more pokes. So he set off on the right side to take down the tooth with the catastrophic crack. I had warned him that I was not optimistic because I hadn’t been able to chew on that side of my face at all; the cracked portion would shift and cause me crazy pain. He was still hopeful.

While he was working on me, sometimes he would bark orders at me – “Left! Right!” More often than not, he would use the small mirror that he had hooked in the right side of my mouth to move my head around. I could feel my wig getting matted at the back of my head – not exactly ideal, since this piece costs $370, far from cheap, and once the fibers are ruined, there’s no going back. As the minutes dragged on and the dentist maneuvered my lips and tongue so that he could get at my tooth from all the best angles, even in my numbed state I could feel the corner of my mouth splitting. Out of impatience and frustration the dentist hooked two fingers under my top right lip and stretched it as far as it would go, and kept grinding my tooth down to a nub. Tears slipped out of the corner of my eye again. My fingers tensed; I focused on relaxing them, but after a few minutes, I would realize that they were back to being claws and my forearms were becoming sore.

Finally they were done with that tooth. I can’t remember how many songs passed, but we just happened to end at another Michael Jackson song. They took a mold of the right bite so I could get my temporary crown, and finished just in time for me to say with Michael, “You know I’m bad. Sha-mone.” That cracked them up again. They asked if that was really what he said, and I asked them if they had a better explanation.

By the time they were ready to put on the permanent crowns on the left, some of the Novocaine had worn off, so I had to get more shots. More cheerleading from the assistant. I swear that my nine lumbar punctures have been easier than this trip. More stretching of my mouth, pulling my face left and right as if I am a horse being led by a bridle and bit. Barking at me to open my mouth wider when all I want to do is close it to take away the deep ache.

Finally, finally, after 2.5 hours, I escaped the chair and we talked about the next appointment, which is on Friday. I’ll have to be numbed again but it shouldn’t be as traumatic or long.

WWMJD (What Would Michael Jackson Do)? Sadly, my plan to appear more than just a mouth full of broken teeth failed. I’m not giving up my sense of humor. It’s as much for me as it is for them.