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.

Duck – Here Comes Another Turkey!

The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.

I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.

Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.

On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?

Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.

Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.

Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.

 

The Dog Days of Dating

I’ve got two accounts going, one on OKCupid and one on Match. After making one acquaintance and laughing about my crazy exchanges, it really drove home the fact that I am likely expecting too much from one and too little from the other (Match is supposedly where the more serious people go to look for love). So I changed the first line of my OKCupid profile to say, “I’m not looking for a hookup.” I also removed some items and added some more to dumb it down. For instance, my introductory paragraph has bullet points and includes, “I’m a feminist. This includes the concept that no means no” and “I don’t believe in organized religion.” Further down for the section that starts with, “I spend a lot of time thinking about” I finished it with “equality, healthcare, social justice, cats and dogs and why I can’t have them, and how much I want pizza.” Lastly, in the section that begins with, “You should message me if” I entered “- You are a non-smoker (of all things); – You really are single, not looking for a third in your threesome or looking for someone “discreet” so you can cheat on your wife. C’mon, it’s NOT complicated – you just wanna catch you some strange, let’s call it what it is; – We live in the same country. Please, no penis pictures. Seriously.”

So the first message I get after my revisions is from a guy with one photo where he looks like a total mouth breather, 34:
Him: How are you doing today? I would love to talk with you more. You are very beautiful by the way 🙂
Me: Hi, thanks. What would you like to chat about? What style of literature do you normally read?
Him: I read all sorts of books. What are you doing today?
Me: Today is laundry. If you are going to say “Let’s do something,” I have to warn you – I can only be upright for about 30 minutes, tops. We could probably do a high five on the sidewalk. 🙂
Him: Why only upright for 30 min?
Me: Super rare brain disease.
Him: Well we could have fun lying down? Lol
Me: Nope, not looking for a hookup. That was just a line about wanting to chat, huh?
Him: Why no sex
Me: Am I just here on this earth to fulfill every man’s fantasy and whim? No. You want to stick your dick in me without treating me like a fellow human being with value. I’m not interested. After that he blocked me. I am just going to assume it’s because he’s trying to stop himself from making the same stupid mistake again because he won’t remember soliciting me for exactly the same thing I specifically said I didn’t want.

Man, 50, lives 80 miles away:
Him: you want to take me out to lunch your treat
Me: Aerosmith, “Dream On.” It’s my song gift to you.
I blocked him. I didn’t have the energy to educate him on how to score.

Man, 39, local:
Him: Wow…..you are absolutely gorgeouz!! I wish I was your type.
Me: Thanks. So why aren’t you my type? Would you be mean to me, or try to send me inappropriate pictures? Or rub your cats in my face and send me into anaphylactic shock? (He has a couple.)
Him: None of the above…I’d actually treat u like a queen….but I’m sure my cats would cause an issue……hence..not ur type??
Me: Yeah – I looooove cats (and dogs), but have to take four meds and only hang out for two hours, tops. Maybe in my next life I can have pets. 😦 So best wishes to you in your search!
Him: Well….I could always,come over…undress and.hang out. No cat then. 🙂
Me: Would it surprise you to know that’s not the first time I’ve heard that offer?
Him: No….but I’m sure I’m not gonna be the first you say yes to though…
Me: Well, that got weird.
Him: Lol….how so?
Me: It’s never fun to be on the receiving end of implied sluttery.
Him: Oh…no…I was implying the opposite my dear. That you have yet to accept an offer…
Although I’d dig being the first….
After 8 hours:
Guess not
I didn’t bother responding. How would you respond if he acted the exact same way he claimed he wasn’t acting? It boggles the mind.

Kid, 26, 80 miles away:
Him: Hi you’re sexy
(I’m marginally impressed that he knows the proper usage of “you’re” but not enough to reply)

Man, 48, local:
Him (obvious copy and paste without reading anything about me): I am a single father, a bit shy at first. New to the dating scene. I actually look forward to just meeting and getting to know someone, I want that someone to enjoy my company as much as I enjoy theirs. I do not like to play games, I like honest and sincere people Have a blessed Day…
Me: Hi, honesty and sincerity are great. Is your work winding down for the winter, or do you stay busy with projects?
Him: am off work for Now … How Are you doing ? would you like to txt me .. i don’t get don’t the site that much ….. what’s your name Beautiful
Me (cringing at being called “Beautiful” – not at all sincere – and the “blessed day” already rubbed me wrong): I’ve had a few stalkers, not comfortable with immediately giving out my cell.
Him: I understand How you feel … i can see you real an honest and open minded woman … and that what i want in my woman … what do you like doing sweet woman
With only 45% of our answers being marginally close and 70% flat-out enemies, I am going to let him pass me by.

Then I got a message from a man, 30, and in the U.K., and I immediately went on high alert:
Him: hello how are you today?
Me: I’m okay, how are you?
Him: im doing well thank you
just back home from work
i ve had a long day
Me: Ah, you’re working late!
Him: a little bit but have u seen that im living in england and im just having a trip soon to MN and lookining for friends and maybe more….
Me (really, really frustrated at this point): Ah. I’m not open to a hookup or a long distance romance. I’ve got a lot going on with my health right now.
Him: what are u looking for in here ?
Me: I’m looking for a long term relationship. What about you?
Him: im same really just its not easy o meet the right one
After this, I decided to put away my baseball bat before I smashed my computer to bits and give him a chance. We actually had decent conversation and it seems like he is sincere, but obviously I don’t know him at all, so I’m still on guard.

Man, 38, Philadelphia:
Him: hi how r u
Me: I’m fine.
Him: Don’t let the distance fool u I get to fly for free
Me: So, whose photo are you using for this site?
Crickets. I did a reverse Google image search and found that he had downloaded some photos from a bodybuilder’s site who was in the UK competing at the same time we were chatting.

Lastly, I got a message from someone that I knew 24 years ago. My gut reaction was to say “CRAP!!!!” because I’ve never lived in a city long enough to have my past come back to me like that. Now that I’m back in my old stomping grounds, I have to reconcile concepts like my family being fully aware of my dating life, and for previously-known people to find me again. I asked this guy about what his experience has been on OKCupid, and he said he’s had bad luck. I commiserated with him and told him that a lot of guys were just approaching me for sex, and he said he was getting the same thing from the ladies. (Really???? Man, I have a hard time believing that. I mean there’s always going to be the ones who have been married for 20 years and want some action, but I don’t think that’s all of us. Maybe I’m naiive.) He told me that not all men were just looking for sex. I then reminded him that he messaged me out of the blue about 2 years ago on Facebook to tell me that he was horny after we hadn’t talked for 20 years. His reaction was, “Oh, sorry about that – I must have been a little drunk.”

The quest continues!

 

 

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.