Good Thing I Had Chocolate Handy

Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.

We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.

Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.

Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.

After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.

At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.

This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.

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How Now, Brown Cow?

I saw my 42nd doctor today. I always start my introduction off the same way for everyone: “So, are you up for a challenge?” I get the same reaction every time, like there is no way I have something they haven’t seen yet. I feel their need to pat me on the head and tell me I’m being cute, and they’re waiting to smirk and say, “Oh, it’s just a migraine, sweetie.” But then they start to sputter, or stutter, or ask me the same question six or seven times. Then they leave the room. Then they come back in (as if they haven’t just gone into their office and said “Fuck” a few times, noiselessly, before putting on their game face and walking purposefully back into the exam room). This doctor was no different.

He said, “I just don’t know what you have. I have never seen this before, but you know, I’m just a neurologist. I wouldn’t know what to do with you.” I said, “Study me.” He said, “I wouldn’t know what to study.” I said, “But these are neurological issues. Someone has to be willing to think outside of the box, like keeping me upright for scans instead of laying down.” He said, “But I don’t know how to help you. I think you should go back to the neurosurgeons.” I said, “Okay, can you talk the neurosurgeons at the U of M into taking my case?” (He is, after all, a University of Minnesota neurologist.)

He said, “I’ll just send them a referral like normal.” But this isn’t normal. None of this is normal. I wish that I could make my surprised face now (even if it’s an act), but, you know, my face is half paralyzed. I really had to fight the urge to have my medical transport person make a pit stop at a bakery so I can buy a chocolate cake to put my whole face into in the privacy of my apartment. I’m past crying about it. It’s just exhausting. How am I supposed to carry on without even a small glimmer of hope? The doctors tell me not to give up. That means “fight,” right? But they don’t want me to fight with them, just the ever-elusive “someone else.” I often wonder what they would do if they were me.

Today wasn’t a total loss, though. My sister and I went to see a dermatologist at the same time early in the morning and then made a pit stop at her place to pick up her two dogs before she went to work, and as usual, the smaller female managed to get loose and run free. She’s some sort of terrier mix with short, wiry hair and sweet brown eyes that my sister and her husband got the day I moved to Minnesota. The male is some crazy mix of beagle and who knows what else- maybe Saint Bernard? – he’s got kind of a big body but pretty short, stubby legs, and the saddest face ever. The male also does not move fast for anything. When he sees me, he knows I’m going to rub his belly, so he doesn’t even bother coming over to me first. He just throws himself on the floor and raises his front paws, like it would be way too much effort to walk a few steps, and I definitely should not miss out on scratching his armpits. So while my sister was trying to lure the female back with treats and we saw her bounding through some brush like a jackrabbit, the male saw me from about 50 feet away and launched himself towards me near the parking area. I swear to you I have never seen him move like that with his ears flapping in the wind before, and I probably never will again. The female heard me calling for her and she buzzed right past my sister and threw herself down for a belly rub too. I really wish I could have pets. I’m lucky my sister works across the street and I can go get some fur therapy when I have a crappy day. They were both rescue dogs, so it warms my heart that they love me enough to come to me too.

Today my sister drove my car so that I could clean it out a bit before listing it for sale. Let’s be clear, here: I don’t want to. I love my car. I did a lot of research before I bought it, and it has all of the features I wanted and nothing I didn’t. I had planned on keeping it for at least a dozen years and so made sure it had the best possible engine for its price point. I got a platinum extended warranty. It fits in every parking space. It’s a hatchback, so even though it’s in the car category, it sits up higher like a small pickup – that means it’s super easy to get in and out of. I could go on and on. Cross your fingers for me for a quick and successful sale, because girlfriend’s gotta live off that money for the next twelve months, know what I’m sayin’?.

Front

I Can’t Feel My Face!

I had two live-in boyfriends during my time in Cincinnati. The second one was Drummer #1, introduced by the guy who was in charge of our servers at the law firm. Apparently Drummer #1 had a weakness for women from Minnesota, with our light-colored hair and blue eyes (except mine are green). In theory he seemed like a good match for me too because of his musical leanings – besides drums he also played guitar – and he was a tech guy, which was my new field at that time.

I still remember our first date vividly. Drummer #1 was very tall (6’3″) with a big, toothy grin, deep-set blue eyes, short brown hair and a flannel shirt. He was very, very nervous about meeting me. We went on a double date with my friends, and we started off sitting across from each other at a crappy table with bad vinyl chairs while a band set up. An hour later the band was in full force and Drummer #1 managed to down four shots of Jaegermeister and two Jack & Cokes. He got up to go to the bathroom and when he returned, he sat down next to me instead of across from me, started rubbing my back and then poked his cheeks and said, “I can’t feel my face! I can’t feel my face!” Before the night was done he had four more Jack & Cokes.

I agreed to go out with him again, even though the drinking wasn’t ideal for a first date. I knew it was his nerves. Plus he kept telling me how cute I was.

It was another one of those things that turned into us spending loads of time together immediately. After the third date when he found out where I lived, he would throw pebbles and sometimes even dimes and pennies at my apartment window to surprise me and let him in. He was living with his parents at the time. After about eight months, Drummer #1 and I moved in together.

I didn’t have the easiest time with meeting his parents. I never went over to his house, he just met me out or came and picked me up. One time during the summer we were at a blues festival and Drummer #1 knew his parents were there as well, and they wanted to meet me, so we set off through the crowd looking for them. We walked back and forth and back and forth in mobs of people but weren’t able to find them, and I had no idea who to look for anyway. However, his parents saw us and didn’t call out to us every time we passed – because, as it turned out, his mother thought I was too fat and ugly for him. (Disclaimer: I was around size 8-10, pretty darned okay by today’s standards.) When they invited me to join them for Christmas that year, I absolutely did not want to go, but I did anyway. His parents ended up loving me.

Anyway, up to that point, Drummer #1 had been an irresponsible bill payer and so I had to have all of the utilities put into my name when we moved in together to avoid having to pay large deposits. For the first year that we were together he was one of the sole tech guys for a small manufacturing company. At this point my hair was falling out with a vengeance. He always wore a blue fleece pullover to work and every day he managed to pick up thousands of my blonde hairs on it like he was wearing velcro. At one point the guys he worked with asked if there was something wrong with me based solely on the volume of my hair that would show up on his clothes.

After the first year Drummer #1 switched to a job at the University of Cincinnati. For some of his time there he happened to work with a doctor who was researching cures for alopecia universalis. He would come home and tell me about seeing others like me who were examined under a magnifying glass so they could be determined to be the most extreme hairless cases for the studies. I still would never qualify because no matter what falls out I manage to retain a few sprouts of hair on my big toes. And for some of the time, Drummer #1 said that he was being sent down to the “hole” – some underground network where he would have to suit up in a big yellow suit for 2-3 days while he ran programs. He also claimed to work with some cops and even some FBI agents.

Drummer #1 made the mistake once of claiming that I was not doing enough to keep my hair. You know that old tired tune of “Why don’t you just _____?” like everyone else is the expert on your body? I made him go with me once for a session where the dermatologist injected each patch with a combination of Lidocaine to numb my head after the shots were done and prednisone to inhibit the white blood cells from taking over my hair follicles. Every session would be about 75 injections; that time, Drummer #1 said, with big eyes, that he could see the doctor flicking the needle up slightly after each injection so it looked as if he was tearing my skin a bit every time. After that, Drummer #1 never told me I wasn’t doing enough.

I finally started wearing wigs when I knew trying to keep my hair or grow new stuff was completely hopeless. At one point I purchased a styrofoam head with a super long neck so the longer wigs wouldn’t rest on the counter tops when I took them off. I would perch the head form and hair on the back of the toilet at night. Every morning for a week, Drummer #1 was so out of it that he would scream when he got out of the shower because he thought someone had sneaked into the bathroom while he was bathing. I would lay in bed nearly pissing myself laughing.

After a few months of living together, things started to slip with the bill paying for Drummer #1. We began receiving calls that our electricity and water were going to be shut off for non-payment and every time I’d have to hurry and pay them, with him promising to investigate why his payments hadn’t been processed. He claimed to be clueless as to why there always seemed to be lost payments.

Then one day in June we were supposed to be flying back to Minnesota for my 10th high school reunion. The flight was out of Columbus, a good hour and a half away, and at night, so I told Drummer #1 what time he had to be home from work in order for us to catch the plane on time. When the time rolled around, he was nowhere to be found. This was prior to the time of cell phones, so I had to call his office. When I got no answer, I called campus security and asked them to cruise around to see if his car was there. After striking out again, I opened up his top dresser drawer where I knew he put all of his receipts and mail. I was stunned to find six months worth of bills in there, all unopened, including all of the utility bills he had told me he had paid. I was incredibly angry and still panicked about not being able to make our flight in time.

The kicker, though, was when I went to get the mail before trying his work phone again, I received my credit card bill with another nasty surprise. When I had been sick the month before with strep throat and stuck in bed on my birthday, he had taken my credit card and charged up hundreds of dollars. I was LIVID.

Drummer #1 showed up an hour late at home and not ready for the trip at all. He hurriedly threw things into a bag. The entire drive up to Columbus I only had my demon voice to use on him. I told him that if he touched the mail in any way including just taking it out of the mailbox, I would get a post office box and he would have to wait for me to give him his mail. No more hiding and lying.  I hated him.

Five months later Drummer #1 made arrangements to buy a car through a program with the University; the payments would come out of his check directly so he wouldn’t have to worry about making timely payments. However, “something” happened where payments were still missed and his car ended up being impounded. Drummer #1 promised to pay me back but it required about $1200 to get his car back.

I had vowed to return to the southwestern U.S. about two years into our relationship. I didn’t feel any real connection with the city and the winters were depressing. I told Drummer #1 that I was moving with or without him. He seemed enthusiastic about a major change and we even took a trip out to Arizona to check it out. When we were driving back from the Grand Canyon towards Phoenix, we were stunned by a quadruple rainbow that glowed across the sky. I know now that it’s an extremely rare phenomenon, and believe me when I say that even truckers pulled over on the highway so they could snap pictures of these four perfect arcs filling the sky. I took it as a sign that I was making the right move.

When we returned from the trip, I went into working and saving mode. I put in about 70-80 hours between two workplaces to make sure I’d have money for the big move. Drummer #1, however, was still not being responsible for his bills and wasn’t making any effort to pay me back.

In January of 2003 I received a strange phone call from a girl who addressed me by name and informed me that she had been fucking Drummer #1 for at least a year. I kept calm and asked him about it when he returned from work. He said that the girl was calling all of his friends and trying to make their girlfriends freak out. I had no way to verify this because I didn’t know any of the girlfriends.

In July 2003, Drummer #1 missed more car payments. I was at the end of my rope. I told him he was on his own with figuring it out because I had to save money to move. Then in September, I received a call from the landlord who told me that he knew I was leaving, but Drummer #1 asked if he could stay on. Drummer #1 never had any intention of moving.

I bagged up all of his belongings in garbage bags and threw it all to the bottom entryway stairs. I went over to his parents’ house and told them he would need a new place to live. They revealed to me that he had borrowed $1600 from them, telling them it was to pay me back. None of the money made it to me, though. His parents told me that he had been a pathological liar his whole life and they hoped that living with me would have cured him of that. I wish that they would not have remained so loyal to their son and instead warned me.

My friend’s dad, an attorney, wrote a letter of intention to file suit if he didn’t pay me back all of the money by October 29th. On October 29th he appeared at my workplace with a cashier’s check for the entire amount he owed me, nearly $5,000.

I used that money to pay for the moving van and my new apartment in Phoenix.

The Broad Squad

CutBanana

The internet is a fantastic invention and I don’t know what I would do without it in my life at this point. I use it to search for rare health cases and symptoms like mine. I use it to communicate with my friends around the world. I watch movies and TV shows via four different streaming services while my laptop is propped over me at a tilt. I’m talking to you stranger dangers, for Pete’s sake.

One of the first ways the internet was initially used for “evil” was that producers and distributors suddenly realized how they could reach a much larger audience to pander their porn.

Another is that it is super, super easy to create a profile and an entire backstory for a person that is not at all based in truth.

Hulu has every episode for the show “Catfish: The TV Show,” produced and distributed by MTV. I was a fan of the movie, and now that I have loads of time on my hands, I am watching that show like I’m loading it up on an IV leading directly to my veins. The movie “Catfish” was made because a guy in his mid-20’s, Nev (pronounced “neev”) started an online romance with a woman long distance, and his brother and their friend taped the progress of his relationship. He is a good looking guy (dark hair and eyes, strong jaw, lovely constant 5 o’clock shadow), and the woman he thought he was talking to was gorgeous with caramel-colored hair and big turquoise eyes. Thought. Nev was crushed and confused when his journey that ended with him meeting this mystery person face-to-face. This is not how he imagined his fairy-tale story would end. Turns out the woman was a middle-aged housewife with special-needs kids who wanted to momentarily escape from her life.

Now Nev’s mission is to help others facing the same dilemma. People write to him because they have been carrying on long distance internet romances with someone who they aren’t sure is being truthful about their appearance, their job, their marital status, their gender, their location, their offspring, their names…you get the idea. “Catfish” is no longer a subject – it’s also a verb.

So, have you been catfished?

Internet dating sucks. I’ve said it many times and I’m sure I will again. At the very least, people don’t like to post their recent pictures, usually because their weight has changed from when they were 17. I get it – I would rather people see me at my best too. I actually haven’t taken any pictures of myself for the past few years because bed rest has not been kind. But I have never lied about my marital or relationship status, the city where I live, my age, my name, my gender, or any other item you can dream up. I don’t tell men up front that I’m bald, but those same men also don’t tell me if they have a 4″ dick that is bent at a right angle.

A good friend I’ll call Svetlana is still braving internet dating, and I am presenting you with just one of her stories with her permission. She had closed down a profile after feeling disgusted and defeated by the men who approached her, but she stayed in touch with a few, including one I’ll call Fernando. Up to this point she has not met him. Fernando had finally asked her out on a date, but Svetlana hadn’t had a chance to accept or decline; instead, she received this message:

Hello Svetlana, I am the girlfriend of Fernando and I don’t think you know anything about it. Since July I live in Germany. 10 days ago I came to his sister’s home in Skokie to visit him for a week, just yesterday I came home. I had seen in his phone and the text messages that he sent to you (unfortunately you are not the only one with who he communicate, at the same day another woman probably from Brasil because it was in Portugese language got from him a love message the same words that he said to me words that he said to me a lot of time, I know that because my friend translated it)…so sad because at that time I was with him, what he would do is ruthless,phony and disrespect. He used me just for his advantage and benefits, he needs european passport to stay legally in Europe and after that study in Amsterdam. He asked me to marry him, now I understand that he wanted just passport and then just cold bloody leave me for another woman. Now I know that he is just liar and cheater, he promised me never to hurt me because my ex boyfriend did it and he knew whats happened in the past to me. I am very angry, disappointed and upset what he did to me, everybody helped and like him cause he looks as innocent and lyal person but he is not like that…unfortunately not! I release my self from him. Why I send you this message? because I want to warn you, no woman deserves this pain. He promised me not to dating you when we stay together but I don’t want to share my life with somebody like him. So enjoy his company.”

First and foremost, Svetlana felt like this took a lot of courage for this woman to reach out to her and warn her. Svetlana has done the same thing when she has discovered men who have been lying and cheating, but sadly, she has had vitriol thrown back at her – other women calling her a slut, whore, desperate, and any other derogatory name you can think of. Second, she responded to the woman and thanked her for warning her, because she wanted nothing to do with men who conduct themselves in this manner. Third, she felt immense relief because this woman did not treat her badly, especially since she had not knowingly become one of many other women he was working on.

How would you react if someone contacted you to warn you that the person with whom you were conversing with or in a relationship with was being duplicitous or dishonest? Would you listen to them rationally, or would you call them names and try to shame them for telling the truth?

Svetlana suggested that she could send a message to Fernando saying, “You think you’re so clever, don’t you?” But really, I thought it would leave much less room for him to wiggle out of if she asked him when he’s planning on moving and who he is going to marry in order to get the proper passport. She did and then blocked him.

My wish is that women would stop buying into this theory and practice that we should compete against each other for the attention of men. Every woman Svetlana warned should have thanked her and cut off all ties to the liars rather than turn against her. I would love to start up a Broad Squad, where we take the time to research things like marital status, number of offspring, jobs, cities, etc., using our favorite tool, the internet (because I can’t very well drive around in disguise and take pictures). Then we warn each other. Then we believe what the other women are saying with proof to back it up. Look, I know we don’t want to think the man who is sticking his dick in us and saying very pretty words could possibly be saying the same to other women, but it’s time for the women to stop hating other women for the lying that men do. And it’s time for men to change their internal recordings from “that bitch messed up my plan, now I have to find new victims” to “I’m sorry, and I will never be a shit again.” Really, wouldn’t we all be happier if we were trying to be our best selves?

The Professor

Yesterday I received medical records from St. Joseph’s Hospital in Phoenix for all of the 10 surgeries I had there, plus numerous visits in between to the ER. The packet included one entire ream of paper with printed chart notes, EKG readings, surgical notes, allergies, and even my signature on some documents. What they didn’t print out on paper they included on a disc for me. Now that I have to set up a whole new team of doctors to help me through this Magical Medical Mystery Tour, I figured it was best to keep track of things and distribute them myself instead of relying on others to gather the info. It’s a plus that I have a laser copier/fax/scanner/printer here at home so I make sure everyone gets what they need.

Some things were a little tough to read. For instance, nearly every time I told the neurosurgeon or the ER staff that my shunt wasn’t working like it should have been, they would tell me that everything looked fine in my scans and that it must be “something else.” After I would beg and plead with the neurosurgeon to do another surgery so I could function again, he would again tell me that everything was fine and he couldn’t say exactly why I had symptoms, but he replaced everything. One of the times was in February of 2013; Dr. N. was out of the country teaching in Japan, and I went into full failure – face drooping, blurred vision, fatigue, vertigo, and I was walking funny, like a cat with anesthesia from a vet wearing off. One nurse told me to go to the hospital four miles away from my house to see if they could treat me for headache. That hospital ended up doing a nuclear shunt study, which they had NEVER done before – I had to tell the radiologist where to inject the nuclear material in my shunt under live x-ray – and they kept me for six days. At the end of the six days they told me the study was “fine” but opted to transport me to St. Joseph’s because Dr. N. was back in the country. I was at St. Joe’s for another six days, during which time Dr. N. did another surgery on me. Now that I’m seeing what was in the report, Dr. N. actually agreed that the shunt flow was sluggish. It wasn’t my imagination and everything was not “fine.” Suckage. I wish they would trust me more when it comes to knowing what’s going on with my body.

I remember vividly the first day I went to St. Joseph’s when I was still trying to get a diagnosis. At that point I had been to at least a dozen doctors over the course of 10 months. I waited to go to the ER until the day after my birthday – I wanted to have a really good dinner out with friends, because I knew I was probably going to have to go through a little hell. At the time, I was dating this guy I will refer to as The Professor, and he accompanied me to the hospital.

We met through OKCupid. It seemed like he and I had a lot in common. He was educated and was planning his first trip to Europe. His picture was just a face shot, and I could only make out that he was smiling and that he had dark hair. We met in January after exchanging some friendly notes; in person, I was a little startled because he had on blue jeans with a bright white belt and bright white shoes, and the pants were sitting high up on his very rotund belly. The Professor’s hair was also dyed dark brown, which was unfortunate – because the very large bald patch in the back shined through like a pink baboon’s ass. I still wanted to get to know him because I’m much more attracted to brains and a certain amount of worldly experience, and so we fell into dating exclusively.

The differences in our beliefs and backgrounds became apparent over time, as they usually do with anyone you date longer than one night. First, he grew up in the middle of small town Indiana – and was exactly like the people I so desperately wanted to get away from in the little town of 300 I lived in in Minnesota for five years. He was strictly a meat-and-potatoes, salt-and-pepper guy – he refused to eat any vegetables or try anything that had flavor. He hadn’t ever even seen a bagel until he was 24!!! To him, those were exotic. He worked at the law library on the main campus of Arizona State University (ASU) and held a bachelor’s degree, but was re-enrolled for his Master’s. However, ASU let him teach one class: Critical Thinking (hence the use of his nickname “The Professor”). We would laugh over some of the things his freshman and sophomore students would come up with in who exactly they hated in the world but couldn’t explain why. But what really bothered me is that he was in his mid-40’s and his mommy was giving him cash every time he got an “A” grade on a paper, and then he’d get a bigger amount if he got an “A” for an entire class. He bragged about how easy school was for him and how smart he was. I would ask him why his mom was paying him for good grades when he had just said how easy it was for him to get high grades. He did not like that question.

The Professor was also a big fan of comics. I helped him to make a transcript of some of his interviews as he was a contributor for an online publication for comics fans. The Professor would brag about how he was a much better interviewer than anyone else, but after putting together some transcripts for him, clearly he struggled with having an actual conversation and he was asking all of the artists the same exact questions. He was just talking to hear himself talk. I am not a fan of comics myself (despite many artists trying to get me hooked), so having to sit through that stuff was a little tedious.

When The Professor talked about his trip to Europe, I really had to bite my tongue. He was likely going to be scared by some of the cuisine (though in England he would fit right in because everything is boiled), but even more importantly, it was going to be a BICYCLE tour. I knew his weight was going to hold him back; when we were simply driving in the car or watching a movie, I could hear him constantly gasping for air and groaning with the effort. The Professor was a mouth breather and sounded like a monster from a horror film. He also had terrible allergies but refused to take allergy meds because he didn’t want to be a “pill pusher.” I found an OTC brand that dissolves in the mouth and he was in heaven. Even the brands that do not have dissolving tablets manufacture incredibly small tablets, so it’s nothing to swallow them. And since when is taking allergy medicine being a “pill pusher”?

Lastly, The Professor refused to wear antiperspirant or deodorant because he said he didn’t like how it felt. He was about 350 lbs. and like everyone else in a super hot city like Phoenix, he sweated profusely. One time when we sat outside of a restaurant after a meal and enjoyed the sunset, he put his arm around me, and his sweaty pit rubbed that sour smell all over all over my shoulders and wig. I hate having to wash my wig more often than is recommended because the fibers and cap wear out faster.

We had connected at a time when my symptoms were somewhat dormant; I could still see while sitting upright and still drive. However, when I became sicker and sicker and still had to deal with our differences, I debated sending him on his way. It was just exhausting. I am not good at projecting a poker face.

The Professor was with me after I spent a week in St. Joseph’s when the group of doctors filed into my room and told me they decided to operate on me. I cried like a baby after they left the room, and The Professor held my hand and tried to comfort me. But the next week when I was home again waiting to be cleared for surgery, I decided it was time. We sat down on my couch and I held his hand and told him that I didn’t think we were compatible. He told me he expected me to break things off because I would sometimes look at him like he was an idiot. I honestly can’t remember most of the exchange, but I do know that I ended it with telling him that I thought he ought to re-think his stance on deodorant. The Professor then said he didn’t use it because he was allergic to it, and I told him that just because he was allergic to one brand didn’t mean he would be to all brands – I broke out in hives from Secret products, so I went and found one that didn’t do that to me. I also called out the fact that he told me previously that he didn’t like it, not that he was allergic to it, and that’s a big difference.

Last year, when I was having a particularly rough night with pain and medication, I sent an email to The Professor saying that I was sorry about the way that I ended things with him and that I wished him happiness. I didn’t hear back from him, but after doing some searching on Facebook, I confirmed he’s up to about 400 lbs. and is engaged. Good for him.

Not Sick Enough?

September often signals everyone buckling down to business again in Minnesota because summer vacations have wrapped up and everyone is back to school. My mailbox has been stuffed every day with paperwork too – mostly having to do with filing for medical assistance and getting all of my records sent to me by various facilities. I’m not even trying to get housing or food assistance. I braced myself for a challenging week.

It started out nice enough. My uncle helped me to connect with a stylist who has a lot of experience cutting wigs (both synthetic and human hair), so I finally got some really pretty pieces to go incognito when I feel up to it. Monday night to Tuesday afternoon a friend visited from another state, so you know I had to scrub my toilet for that. Today I was supposed to be wheeled around the state fair, but that outing was canceled due to rain. It’s probably good that I stayed home anyway.

My first call of the morning was from the Maryland office for Social Security benefits, notifying me that my request for disability was rejected. I know, I know, 80% of cases are rejected the first time, and I’ve been telling friends the same thing when they have asked about filing. I still wasn’t prepared to hear it about my case. I used to never cry, but now that I get anxiety because my brain is being crushed, I cry over everything – the Sarah McLachlan ASPCA commercials, the dogs greeting their vets coming home from war, the fact that I have to get another new mattress after only 4 months because I’ve worn this one out already…well, you get the idea. The lady who called me was not unsympathetic and probably gets upset people on the phone all of the time, but I’m guessing it’s not how she wanted to start her day either. She told me to file the request for reconsideration within 60 days of the date of the letter being sent to me and that the next person might view my 300+ pages of documentation differently. I was so choked up that I could hardly speak. You know when you hang up and you think of all of the things you could have articulated or asked? Yeah, that.

After I pulled myself together again, I called legal aid for my county and the attorney I spoke to confirmed that I should file the request for reconsideration. After that if I had to request a hearing, I would have to secure my own attorney – and no one wants these cases because the attorney doesn’t get paid if I don’t win my case. It’s discouraging to hear things like this because I’m having a hard enough time trying to be my own advocate with the health care professionals who are supposed to be helping me to find out what it is that’s going on. I envy the people who live in countries that don’t demonize their citizens for becoming sick and needing assistance.

I’ll see my new neurosurgeon tomorrow to talk about the possibility of another surgery now that I have jumped through all of his hoops, and I’ll meet a new neurologist on the 15th of September. Who needs a job when you have to coordinate everything for your very own Carousel of Crap?