Day 4: Thrift Shopping is an Emotional Roller Coaster

My goal with this was to document trials and feelings related to my arthritis, but some crazy got in the way, as crazy does. My guilty acknowledgment: I asked my family for financial support, which is like getting punched in the stomach, while having your head slammed in a car door. I received a Papyrus card in the mail with a check from my grandmother.

 

I have to offer you some backstory. My family is crazy. Not just, “oh haha, how eccentric, breastfeeding until three,” which my mom did, but crazy and negligent according to the state. I have some great stories because I wasn’t really monitored. I don’t doubt my parents love me, but doubt their capability. My dad thought my mom was poisoning him, and around the age of 5, I was elected royal taster. My father’s impulse being that if mom knew I would be eating the food, she would not poison it. Luckily, no one was ever poisoned. My father’s sickness and paranoia manifested in a number of ways, but always as crazy, not quite malignant.

 

Now, cut back to the pink Papyrus card. Inside was a line about speaking to my dad and how he believed I have been drinking, “which you know is NOT a good idea from your mother and sister.” I couldn’t believe a card that pretty could be so insulting, filled with such an egregious accusation, but also that my grandmother felt the need to address it, not defend my character. This is correct in that alcoholism runs in my family, but incorrect that I have picked up a drinking program. I dodged a genetic bullet. I realize this. I am nearing 30 and have never had a drinking problem, and being 400 miles away, I am uncertain as to how anyone came to this conclusion besides vicious intent.

 

I was so mad my face hurt.

 

I was at the thrift store later with friends. Thrift shopping holds a special place in my heart, and always has, even before Macklemore. I find the thrill of the hunt exhilarating and rewarding, to systematically go through racks of clothes to find a gem, that you immediately fall in love with, to only be let down by a disfiguring stain or untreatable tear.

 

I am not sure why, but these connect it my head. Initially, I believed it had something to do with the beauty of the card, alongside the insult, like a dress with a stain, but it’s different. The dress is a letdown, not a slap to the face, but then it occurred to me. My family is an unwanted thrift store item. There were the item I was given, which repeatedly lets me down, because underneath the anger, is pain from their judgment and exactly how wrong it is, how little they know me, and how I keep coming to the point where I don’t want to maintain a relationship with this battered item anymore.

Advertisements

Day 2 and 3: Stop Spending So Much Time on Bridges

The last couple of days have been a swirl of emotion and anxiety. Primarily, what should I do for money? I did not expect my arthritis to be what it is at this point. I expected my situation to be different.

 

My dad called six times between the hours of 6 and 7 in the morning. I ignored the calls because I know better. I had an interview that morning. I also struggle with how to gauge how an interview went. Anyway, I returned my dad’s call coming back. I didn’t have time to mention I was coming from an interview before he went on about how, “we are a family of deadbeats.”

 

I should not listen to his assessment, but the suffocating feeling of failure always lingers around me, like it is a thing, a thing that knows how right my dad is. And I start to review and analyze my choices and decisions, trying to pinpoint the moment where my downfall began. Was it at birth? Just a bad deck of cards? Was it the moment my white blood cells turned against the rest of my body? Or was it my choice that got me here? And I don’t see where I did anything truly awful. Where I was like, yeah, I think heroin is a good idea. That never happened. I did things, like take out student loans for grad school, and they’re shitty loans because I didn’t have a cosigner. I struggled with saving money because, unlike many of my peers, I have rather large medical costs each month. I worked part time jobs while in graduate school fulltime, until I couldn’t mentally handle it. It was the best decision for me and my mental health, but now I’m here, a dead beat.

 

But, that is what I need to work on. Being in the present moment. Not treading backwards, but existing, in the right here, right now. I frequently have to remind myself “Let’s cross that bridge when we get there.” I spend too much time on bridges from the past or bridges from the future. I admire people who have a balance. A balance where they are able to manage and predict future issues without living in fear of them, a balance where they enjoy the day. I am always planning, for the loss of my health insurance, looking at what feels like a huge looming disaster. I can never get out from under their shadow.

 

So, that is the goal for today. Be in the present moment.

 

I’ve been listening to this song a lot. Way Out by Forty Winks.

http://www.youtube.com/watch?v=KDCZWXHtwjc

28 Days of No Biologic: Adventures in Rheumatoid Arthritis

My rheumatoid arthritis is not good. It, apparently, has not been responding to the weekly injection I’ve been doing for the past ten years. X-rays suggest damage, damage that probably shouldn’t be there, suggesting my immune system has been a busy bee eating holes in major joints.

So, I have some options. One, being to go on another biologic, Humira, which does what Enbrel did, but it does it in a different way. There is a chance a new theory will work, but there is also a chance my arthritis is “particularly aggressive and does not respond to TNF blockers,” which is scary, because ten years ago, when I was diagnosed there wasn’t anything else. Pharmaceuticals have also been busy the last ten years and there is a new biologic blocking a new thing, IL6. They don’t really know why it works, but it does.

But, let’s make things a little more complicated, and add in the fact that my insurance is going to expire as of August 6, luckily I have one more option.

That option is a clinical trial for some up and coming IL6 blockers. There is no placebo, so I’ll get something. I am a great fit because I am a “TNF failure.”

Now, the reason I’m telling everyone all of this is because I need a project to get through this. I wanted my blog to be positive and funny. I want my posts to be humorous and clever. I want to be positive. However, in order to get into a clinical trial, I must go off the medication that has been failing, but keeping the wave that is a chronic illness at bay, for 28 days. I have taken this injection every week for the last ten years.

Prior to treatment, I was unable to put up my hair, fit my feet in shoes, or pull up jeans. I haven’t skipped more than one week of Enbrel in ten years. I show symptoms at a little over a week.

I get it. I understand the need for this, what the clinical people refer to as a “washout period.” The results can’t be influenced. They want to see what my arthritis looks like in all its aggressive glory so they can compare to my arthritis under the constraints of an IL6 blocker. It is actually a reasonable washout period apparently. Some studies request 3 months. Some studies won’t allow Tylenol while handling the washout period. The clinical people refer to this as “unpleasant and uncomfortable.”

Anyway, yesterday was my last Enbrel injection. Today is day one. Here we fucking go.Enbrel!

It is my goal to make everyone uncomfortable…

It is my goal to make everyone uncomfortable

I found this article on Jezebel.

http://jezebel.com/5992256/in-a-room-full-of-naked-koreans-margaret-chos-body-is-an-unwelcome-sight

Margaret Cho, a tattooed individual was asked to cover up in a Korean spa by the management. The management was awkward and upset, but explained Cho’s heavily tattooed body was offending other customers. Cho attempted to continue her experience in a robe, while getting severe judgmental looks from other women. Eventually, she decided she could not enjoy the experience, paid, overtipped and left.

Woah, woah, Margaret Cho, a stronger woman that I am. I would have tipped, but I don’t know if I would have paid. If I’m paying money, dollar bills, to enjoy a relaxing experience, and the management, per pressure of other consumers, explains to me I cannot participate the same way, well don’t expect the same payment. I’ll tip the staff, sure.

But, then I start thinking, is this why Margaret Cho is a successful adult and I am not?

It is partly anger, but when I see injustice, or experience it, I don’t think it’s my fucking job to keep it on the down low. Sorry, those ladies decided to complain and make this uncomfortable, but why should I continue to sacrifice? Why should I quietly leave? Nope. You opened this can of worms and now the discomfort is gonna roll, all the way from the front desk, to the back sauna in the sound of my voice.

It’s true I need to learn to control myself better, as they say pick my battles.

I’m not sure why people and management are always surprised when I ask for stuff or a lower cost. Honestly, the time I spend on the phone with customer service about my cell phone, I think I should get those 45 or 52 minutes comped back.

The Oatmeal sums it up pretty well: http://theoatmeal.com/comics/customer_service

Dealing with corporate nonsense fills me with a rage comparable to that of an evil villain, not where I want others to die, but where I want to block out the sun, wrench loved ones from their arms and lock them underground.

But, back to this idea of money and service, one time struggling with Verizon internet, a woman asked if I had a home phone to plug into the jack to confirm there was a dial tone. Nope. I don’t have one. She suggested I pick one up. I said I’d have to pay for it. (Let’s not even mention I’m suppose to get to a store using my time, gas, and money.) She said, well they’re cheap and you can always return it. No. I’m paying for internet, for Verizon to provide a service. It didn’t come with a stipulation that I would also have to go out and buy a home phone to confirm dial tones for them. I’m sorry, but that is a company issue. I also wasn’t mean about it, but I’m not doing it. I get the feeling I was perceived as unhelpful and unwilling, maybe unwilling to help myself. The thing is, my time and money are valuable and I’m not going to invest them in this when I have already paid for it. This incident was a little out of control. At one point, the serviceman came to my house and had his manager on speaker phone talking to a customer service rep on speaker phone on my phone. Pretty ridiculous. You bet I asked for free service. I handled this incident pretty well. I was courteous. I did inform people I was upset and this was pretty ridiculous, but in a reasonable manner.

But, I’m not always like that. Sometimes I’m not good a picking my battles. Like bringing my laptop into Best Buy for the second time in two weeks. For lots of people, their laptop and information is their life, as is the case with graduate students- more so a couple of weeks from the end of the semester. I had dropped my laptop off, it was sent out. I was already without it for a week and a half. Getting your laptop back is an amazing feeling. I went back to work and all was well until the same issue happened. I didn’t back up documents from the past two weeks, because as you’d expect, after being sent out and worked on, I thought my computer was fixed. I get it. I get, “Well ma’am you should always back up your files.” But it comes down to service. Is that what you’re selling? That my expectation should be my computer might break again, in the matter of a couple weeks? And I realize there are freak accidents, I should have my information backed up, but this wasn’t that. This was the same issue. I asked Best Buy to give me a flash drive to back up my documents. They were appalled and told me they weren’t in the business of giving away free things. I said it looked like they were in the business of not fixing items, which I paid for. That this was the service I should come to expect? I was an irate customer, causing a scene. It made everyone uncomfortable, employees, customers. I just waited, letting my anger and frustration take up the entire counter at the Geek Squad. Eventually, they said they could put my newest documents on a blank CD for me. Fine, that was all I wanted. Really, that was it. I just want it to be acknowledged that this probably should not have happened. That I probably shouldn’t be back here for the same reason right now.

So, I struggle with this. I get a lot of mixed feedback from friends and family. Sometimes, after the fact I’m kind of embarrassed. I try not to swear, but sometimes I’ll say something like “This is a truly a bureaucratic mind fuck.” And sometimes my voice gets a little loud or I obnoxiously tap my fingers on the desk.

And here is the problem that a friend raised for me “you’re talking to the wrong people.” I’m sorry to the employees that I put through this, because at the end of the day I know it isn’t your fault, but the system. I just don’t know how to stand up to the system, to voice my rage and indignation.

And maybe that is why Margaret Cho did such an awesome thing in how she responded, that frustration would have been at the wrong people, and that there really isn’t a right person to voice it to, because it wraps up all kinds of complicated issues of culture, body, and agency.

So, what are we left with? Who do you talk to? I feel like there must be a happy medium that I am attempting to reach between pushover and irate crazy. Sometimes, I hit it, but other times I don’t. How do other people manage?

Siblings- Can’t live with them, but CAN you live without them?

Siblings: Can’t live with them, but CAN you live without them?

 

My sister blew me off again. Her normal M.O.

 

When I was younger, I told her I was going to cut all of her hair while she slept. I didn’t really want to do it, but you can’t make a threat like that and not follow through. She was bigger than I was and YOUNGER. She had the baby card to play. I reached a compromise with myself. I decided putting blonde doll hair on her face for when she woke up would be acceptable. Like the mob. Just a finger in the mail, not the heart.

 

Not that she was guiltless. She wasn’t. I was about 12 or 13, making her 9 or 10. We were climbing around our friend’s garage, doing stuff we shouldn’t have been, as unsupervised children at those age will do. We scaled the walls, climbing hanging ladders, bookshelves nailed into the walls, a real man’s man garage. My sister, in an attempt to keep up with us, followed our every footstep. She didn’t process where we paused quite so carefully, which was definitely not on the glass top of an antique jukebox. My sister paused there, whining about something, placing all of her weight on the glass top, when it shattered. She fell straight through and immediately started wailing, screaming. She surprisingly skillfully excised herself from the now glass death machine and ran inside to where our parents were knocking back bud lights. The next thing I knew I heard my mom screaming my name into the back yard. I felt my stomach drop. She was pulling out the syllables. Never a good sign.

 

My sister told all of the adults I pushed her into the jukebox. She was there being comforted, while women applied bacitracin and Band-Aids to the cuts on her legs. She was surprisingly unscathed. Everyone glared at me when I walked in.

 

Thankfully, I had witnesses to corroborate my story. I had not pushed her. It was an accident. I had been on the other side of the garage, doing wrong, but not purposefully injuring my younger sister.

 

Now, this time I had witnesses, my other friends, but there were times I didn’t. Times when my sister tripped and got a bruise and told my parents, I did it and I was then sent to my room. So, I was meaner, but I also felt like I had to be to make up for all the unnecessary punishment.

 

For as much as we were enemies, we were also partners in crime, as I believe most siblings are. I remember one day while on the beach my mom fell asleep. My sister and I, with our packed lunch of sandwiches skillfully lead countless seagulls to my unsuspecting mother, where we decorated the blanket and sand around her with bread. My mom woke up surrounded by birds and being dive-bombed by them. She did yell at us, but only from her frozen position on the beach blanket, terrified to move. The two of us feigned remorse, but cackled on the inside in a telepathic way siblings share.

 

We were wild kids. We also had a phase where we kidnapped Barbies. We wrapped them in black electrical tape, used lipstick for blood, and hung them from the drop ceiling. We didn’t even have cable. We probably should not have been allowed to watch R rated movies.

 

In her late teens, my sister started drinking—she will never be a person who can have beer or wine with dinner. For this I am sorry for her. I can’t imagine how difficult it is to connect at that age without the lubricant and shared interest of alcohol. I got calls from my friends when they saw her out. I went to bars to pick her up. I found her on days when she was missing and hadn’t checked in with anyone. I went to her parent teacher meetings. I love my sister. I want to be her friend. I can’t help but wonder at what point I throw in the towel, because my sister does not see me as a friend.

 

A few years ago, I drove across the country with all of my belongings and a cat. I had been prepping her for weeks. I explained and confirmed my arrival date. I told her to ask her roommates. The day arrived and after driving for 5 days, and the last 10-hour leg I got to her apartment. I rang the bell. I rang every bell in the apartment. Eventually, a woman came and opened the door and I asked if she was my sister’s roommate. She was not. We walked about the stairs to the front door and knocked. No answer. The extremely generous couple that lived below her invited me and my poor traumatized cat in for water and simply to out of the car. I played the gracious generous guest while I seethed with anger. She eventually showed up from work. A shift I had begged her to switch. She was so surprised no one had let me in. Did I knock? Did I knock loud enough? My tired, weary, driven across the country self wanted to push her down the fucking stairs. My cat and I made our way into the third floor apartment with her roommates. Her roommates were nice people; however, my sister had neglected to tell them about the length or my stay, I assumed about a week or two. I needed to find my own apartment and then I would be out of everyone’s hair.

 

This was years ago, but it is still the same game. I come to visit. She isn’t home. The last time I got to her apartment after a two-hour drive. I texted her when I left, when I was on my way, spoke to her on the phone, agitated that she was at the store buying emergency cat food, for her cat. She assured me she would be there when I showed up. I got there. I called her. No answer. I really had to pee. My mom called to tell me she’d be there soon. I waited, one minute, two minutes, about seven. I know it doesn’t sound long, but it is when you have to pee and have driven two hours and made all these check-ins to assure someone would be there. I left. We eventually passed each other at an intersection. She waved in her clueless way. I flipped her off in my I will leave doll hair on your face for when you wake up way.

I called and the first thing she asked is “Gawwd, are you coming back now?”

I shrieked no, I was not coming back and she should suck a bag of dicks. You fucking bitch.

Maybe I over-reacted, but it has been a cumulative effect.

I should probably give up on her. Throw in the towel, but American culture and the family unit make cutting your family off really taboo and awkward, even if it is the most sensible choice.

 

So, siblings, can’t live with them, certainly, but can you live without them?

Judgment Lunch (Or How I Kept All My Teeth In the Front Of My Face)

Judgment Lunch

 

The tooth incident compromised my judgment. I panicked. I wanted guidance, or I wanted to win thousands of dollars on a scratch ticket. I’m not that lucky. I called my Irish Catholic grandmother, known as Nana. She is my dad’s mother. I called and explained the issue. She tsk’ed a lot. She said, “Well, this is why you need to work.” I had quit my retail job. My brain imploded. I explained that the job and the tooth were unrelated. The job wasn’t going to give me dental and I wasn’t going to make $2,600 there either. That is probably where I should have stopped, but she had hit a sore spot. A sore spot made up of me working since I was sixteen. A sore spot where deciding to quit my retail job and focus on graduate school was a constant struggle because I felt like everything was a lavish expense. I was living on loans. It is something people do. I still feel guilty about it. So, when Nana in her nana way brought up the idea that I was not working, it wasn’t what I was looking for. I was looking for some kind voice to say, “Dear, I’m sorry, let’s figure this out together.” She didn’t. She compared me to my parents. So, I explained to her if she wanted me to work at a job where I made $2,600 to account for this unforeseen dental issue I should start dealing drugs or go into prostitution.

Nana did not approve.

 

She told me to call back when I came to my senses. I was feeling impulsive and fantasized about how hard it would be for her to play “Who has the best grandchild?” with her friends if I had teeth missing in the front. I thought about getting it pulled simply out of spite. Can’t put my picture up now, can you?

 

I later got a call from another family member. “You need to call Nana and apologize because she is taking it out on everybody else. I know it’s hard. Just take the help.”

 

Help? I don’t know about you, but everything in my family comes with a price. Love, food, money. Supposedly, it doesn’t, but there is always an undercurrent I feel. A sensation that I must return on their investment. I should send them Power Points detailing my progress and accomplishments, itemized budgets and receipts of where there $100 went to. It isn’t that I’m ungrateful. I am lucky in a way. Members of my family helped pay for me to go to a much better school system. I received a much better education in an emotionally safe place when I was particularly vulnerable. I mean who isn’t in high school? But, there is a rule of reciprocation. They do these things out of the goodness of their hearts? Kind of. They paid for me to go to school, but no one every picked me up. I was the last kid in the parking lot, waiting. They paid for me to go to school, but I had to steal uniforms from the lost and found because my parents and I couldn’t afford them.

 

So, I guess that offers a little bit of background. I contacted a dentist a couple of hours away I had not seen since 2008. He, the dentist himself, called me back. I felt like it was my first bit of luck. I set up an appointment and discussed cost along with possible dental issues.

 

Now it was acceptable to call and make an apology, now that I had made progress. I apologized. “I’m sorry if what I said upset you.” Which is a backwards apology, but it was the best I could muster. We arranged lunch before my dentist appointment.

 

And here, good people, of the internet is JUDGMENT LUNCH

A no holds bar, UFC smack down, where and Irish Catholic grandmother is allotted a half-hour, while buying you a sandwich to rehash all of your shortcomings, disappointments, and failings spanning both physical and personal.

The one rule: You take it.

Mostly I imagine myself in the fetal position just letting the old woman kick me over and over again.

That is judgment lunch, and probably why I still have all the teeth in the front of my face.

Because after being reduced to a mental fetal position that will wreak havoc on your psyche for years to come, she paid for half of the procedures, drastically less than anticipated. We are at an estimated $525. I put the rest on my credit card.

 

At which point I spent 3 hours at the dentist office, getting x-rays, a cleaning, and a giant filling. Apparently, a filling never fell out! I had been wrong the whole time. It was actually a cavity that had gotten so bad, my tooth, the actual tooth chipped while I was at the retail job such a long time ago.

 

In closing, it was an adventure filled with some battles, but I suppose in the end I came out on top, at least with all my teeth, even if I can’t eat any solid food for a week.

Teeth are Important

Teeth are Important

I am master’s student, which means no funding, assistance, guidance, or love. I am older than undergrads, pay full tuition, but am offered the same insurance coverage. Undergraduates are ten years my junior, go home to do laundry at their parents’ house, and legally can be covered for many more years on their parents’ insurance. I no longer have this option. I elected the student health care, which did not include a dental option.

One day, at my awful retail job, while grinding my teeth to avoiding throwing up at the register because of what my life had come to, I heard a crack. I felt something crunchy, spit it into a Kleenex, and continued counting the hours until I could go home. I assumed a filling cracked and fell out.

Minus the trauma of the crack and crunch, I didn’t notice any pain for weeks. Then, while biting something, like bread, a sore ache adjusted to a shooting pain and became an unwelcome and permanent guest in my mouth

I researched low cost dentists. After the research, waiting on hold to for 10 minutes to be told they weren’t taking any new patients I decided to go to the mall. Obviously. According to my therapist, retail therapy is one of my coping skills and should be not be toyed with until I find another one to replace it. Few things replace the thrill of paying $6.97 for a pair of Gap pants.

However, I am not completely delusional. Good deals will not help my tooth. Also at the mall is a FREE dental consult office. When things say free, be suspicious.

I explain I broke a filling and have no insurance. I put my sad face on and wait with all of the other hopeless patients. Waiting rooms are sad and hopeless.

A young woman in a long yellow gown comes out and explains in limited English that I need to pay $40 for an x-ray of the tooth. OK.

At which point, the woman takes me to do the x-ray. Now there are two women speaking to one another. I believe it is Polish. I don’t understand Polish. I did understand it was the girl’s first day and they couldn’t decide is they got the right tooth in the x-ray. The right tooth, as the broken one. I don’t think I have more than one broken tooth on that side.

They confirm it is close enough.

The two women lead me to a sprawling backroom decorated with up to ten dental chairs separated by cubicle partitions. I can only assume it is the birthplace of many dental nightmares.

A dentist with a mask on pokes at my tooth and says, “We can pull or root canal.” He flips my chair up and hands me a card with the following on the back:

 

Pull $290

Root Canal $2600

 

I stare in horror at the card and ask if it is pulled, will it be noticeable? He says it depends. Depends, as in how aware the other person is. Depends on how serious they pay attention to teeth. You know? It depends. What the fuck?  He gets up to leave, and I ask about the rest of my teeth. I expect full service for this free consult and I am horrified about how many teeth I might lose and wonder at which point he would say yes, this is noticeable. He explains they need more x-rays to be certain, but with some coaxing, he agrees to look in my mouth again. Probably to stop my talking. He says to come back for either appointment. He never took his mask off.

I leave the office to sit on the mall bench outside the dental place. I am torn between crying/hyperventilating and simply going home to cut off all the legs of my jeans. To pull the tooth will be noticeable, not dependent on attention. My friend talks me off the dental ledge and convinces me a second opinion will be important.

Nonetheless, I start to plan my new toothless life. Well, luckily I just joined a gym. My body better be slammin’ to get passed a missing tooth. On that note, I walk to Victoria’s Secret. I find the brightest most padded push up bra there is. It is green, green, like red light, green light, green means go adorned with white delicate flowers.

I put this thing on and am met with the glory of my cleavage as it has never been.

I need to show someone this. I hit the light inside the dressing room for an associate. She knocks and I ask if it looks OK, or is it too tight? She smiles and says, “No, it looks really good on you!” I doubt it looks bad on anyone, but I’m sold.

Walking through the mall, I am caught by the gleam of a Sunglass Hut. Sunglasses? Well, yeah. I have high cheekbones and when I smile, I pick up the glasses, which looks funny. Then I remember I won’t be smiling anymore and I am re depressed. I hover around the sale glasses, but am then approached by the cutest, sweetest, saleswoman. She hands my pairs of Coach and Oakley. I enlist the tall, I assume wealthy European man for his opinion. He confirms the large Coach glasses, because they are more feminine. Great, feminine will hide missing teeth, if only for a short while.

I reach for another pair of Coach sunglasses that were designed for my face, but unfortunately not my life. They are polarized. I don’t quite understand what that means, but people always mention the water. They are $200, so by water I assume they mean yachts. I don’t spend a lot of time on yachts. Actually the time on spend on yachts is none, no time on yachts.

But, the day had already been such a letdown. I didn’t want to let the sales clerk down too. I was so desperate to replace my would be missing tooth, a symbolism of neglect and white trash with boobs and sunglasses, but really sex and wealth. Who needs braces and root canals when I have sex and consumerist vision to fill my smile in?

 

I bought the sunglasses like a dope.

 

I returned them a couple days later like a rational person.

 

Only after texting an upper body picture of myself wearing the bra and glasses to my friends titled, “Bitches be Crazy.”

bracut