#autoimmune

Youth is Wasted on the Young

Posted on by akiwifreund

The summer I was 19 was a magical time. I don’t mean that everything fell into place perfectly and I knew what I was going to be when I grew up, but rather that I had a lot of firsts and I wasn’t burdened by disease. I had all of my beautiful, fine, soft hair and had no inkling that in four years I would be sidelined by fibromyalgia or that a weird brain disorder was looming over me.

I had managed to make it through my first year at university with my virginity intact. A couple of guys had tried to talk me out of it but failed. I certainly wasn’t holding onto it for a special occasion – I did not have any grand illusions that I was saving it for marriage or anything misguided like that. But by the time I finished that first year of college, I decided to let go of a few things, including going back for a second year, as well as that nagging virginity. I moved back to Mackinac Island and lived above the busiest bar on the island – very much a departure from the “Virgin Vault” the previous summer – and there was a constant whirlwind of many, many people to meet, both workers on the island and visitors.

Within the first week I was introduced to a guy who managed to get my knickers off within the second hour of becoming acquainted. At this point I just wanted to get it out of the way because I had heard too many stories about how it was painful the first time. Well, I didn’t have the experience of a hymen being torn or dealing with blood. Unfortunately, the guy didn’t believe that it was my first time because of that, and he was pretty rough (and also a bit drunk). I ended up with a lot of bruises. We went through a lot of condoms. We finally fell asleep in my bed (the bottom bunk in a 4-bed room), and I woke up in the wee hours suddenly startled by the fact that I couldn’t remember his name. I knew it was four letters, that was all. In his drunken slumber he kept elbowing me in the face while he rubbed his mug vigorously, so that was a zero sleep night. Not the best first time, but at least I got it out of the way – and thanks to his choice in seduction music, I still can’t listen to “Ziggy Stardust” to this day, even though I adore David Bowie. A few weeks later he came back for a repeat performance but I turned him down.

This was the year that I became acquainted with a lot of foreign workers. Within the first three weeks on the island, I knew them all. They represented England, Germany, Austria, Spain and Portugal. I got to make out with one of the Austrians, my first foreigner. He was very relaxed with sleepy eyes and permanent pot high. I imagine he’s some sort of public official back home now, he just had to get some partying out of his system.

About two months into my time on the island I did what a lot of seasonal workers did and got a second job. I was hired to be a hostess for a restaurant (now closed) and managed to also be designated as the karaoke host. For any of you that have worked restaurant jobs, you know that a lot of bed hopping goes on. This was my first foray into this business so I didn’t go hog wild. However, I did manage to catch the eye of two men. The first was M. He was tall with long, dark curly hair. When I think of him, I think of the saxophone player with the oiled up muscles and long hair that appeared in “Lost Boys” (see the picture immediately below). M. bounced back and forth between Naples, FL and Mackinac Island to cash in on patrons parting with big tips while on vacation. Normally M. was very crabby; I chalk this up to him being in his mid-30’s and having to work with youngsters like me. But at some point he lightened up and started flirting with me, and eventually worked up to asking me back to his place. It was my first time with an older guy, especially baggage like his – he had an ex-wife from England and a baby, and he was deeply wounded from their divorce. M. was passionate and strong. He also wanted to jump into a relationship. I wasn’t so sure because he was older, he was still planning on leaving at the end of September, and I simply did not have a lot of dating experience. I still remember the walk of shame back to my apartment in the early morning. My hair was tangled, my mascara and eyeliner were everywhere but on my eyes, I was wearing the previous day’s clothes…and wouldn’t you know it, some customers I had helped the previous day were the first people to see (and recognize) me.

TimCapello

The next night he wasn’t working, and all of the sudden a British waiter, S., became very flirty with me. He talked me into going back to his place that night. I know, I know – two nights in a row, different guys – slow your roll down! But again, I was largely inexperienced with dating and flattered that another handsome man found me attractive. S. had blue eyes and dark wavy hair, and his features reminded me of a much cuter Flea from the Red Hot Chili Peppers. He gave me a massage with the best smelling body oil I still haven’t been able to find since and we put the Sade album “Love Deluxe” on repeat to sleep to the rest of the night. S. was brooding and dark, and confessed that he was still hurt by his recent breakup with his long-term girlfriend, Jackie, who was supposed to be traveling with him while they worked their way around the world to Australia. We talked about the possibility of me taking her place and the logistics of trying to earn cash without a work visa. The next morning when we woke and cuddled, I informed him that I had been intimate with our co-worker the night before our night together. S. explained to me that M. was outright rude to him simply because his accent reminded M. of his ex-wife, and that this would likely cause problems at work, but I would have to decide between the two of them.

S. was talking about a future with me; M. only wanted to forget his past. That night, all three of us happened to be working at the restaurant. M. was very excited to see me – he was dressed up and wearing cologne and a huge smile. M. and S. took turns hanging out at my hostess station and flirting but keeping away from each other. I was torn. I still cringe from this, but I finally made up my mind and told M. that I had decided to date S. M. was hurt and angry, and he had every right to be – there was no way he could have known what I was up to the night after we had been together. I am still not convinced that I made the right decision and I wonder how different things would be now if I had gone the other way.

S. and I had our share of fun. One of my best memories with S. is that a co-worker offered to let us use her car to take a trip to a city two hours away from the island. S. insisted on driving first because he had made it a point to get an international driver’s license, but after a few scary turns into oncoming traffic, he pulled over and begged me to drive. We spent the day shopping in Traverse City and then headed back. The co-worker failed to tell me that her car was leaking transmission fluid. When I got to Mackinac Bridge, the fifth longest suspension bridge in the world, the car suddenly began to decelerate, despite me having the gas pedal to the floor. S. woke up in the passenger seat when cars began honking at me. He was yelling at me to stop slowing down, and I was yelling that I wasn’t doing it on purpose, something was wrong with the car. We made it across the bridge going 10 mph and ended up coasting into the first parking lot off of the bridge, which happened to be a hotel. We had missed the last ferry and so had to stay there for the night. S. did the best thing a boyfriend has ever done, which was go out and buy tampons for me at a convenience store because I was not prepared for my period to start that night. He also scored a pizza for our dinner.

S. and I dated until the very end of the season before the first snowflake fell. Instead of taking me with him across the globe, though, he broke up with me. He was still hoping to reconcile with Jackie and was convinced he would see her in Australia. I still remember the day he left. The main street was very quiet and it was an overcast, windy day. I was watching out my window onto the street because I knew which ferry he would be taking, and there he was walking his slouched-over British walk with his big travel bag on his shoulder, not looking anywhere but straight ahead. I wanted to yell goodbye to him but instead watched him as long as I could before he disappeared into the ferry while I cried big, fat tears.

Now that I am older and bed-bound, I lament the fact that I will never have the opportunity to choose between S. and M. again.

(Thank you to George Bernard Shaw for the title quote.)

Would You Like Some Mayo With That?

Posted on by akiwifreund

Today I made a trip out to a new neurologist with my mom’s friend as the getaway driver. He was recommended to me by my sister’s employee because he was a great help to her family member, who was also suffering from some mysterious neurological issues (but after only 10 minutes he figured it all out). I went in with my usual folder of about 100 pages of documentation. After chatting with him for about 45 minutes and getting a brief neuro evaluation, he determined I should go to the Mayo to be seen by numerous doctors so they could try to get to the bottom of it. Those were the magic words I was waiting for. I already have my hotel picked out down there! I found out after I booked the appointment that this particular neurologist was trained at the Mayo and he still has an “in,” so they can’t turn down his referral. So I stumped another doctor but it was not a pointless visit – I am finally getting my foot in the door.

I am relieved that this particular fight to be seen by some of the world’s leading experts on issues with CSF is finally over, but I’m already looking ahead – and I know that this is the last stop for me. If they can’t figure it out, there’s no where else for me to go. Also, maybe this time someone will write me up in JAMA and put their name on this condition. I’m tired of having to explain why I have placeholders for the disease names.

Rubbernecking

Posted on by akiwifreund

Whenever I listen to the album “Happenstance” by Rachael Yamagata, I am reminded of a guy I dated who belonged to the big social group that I mentioned previously. We bonded over our love of all things music (with the exception of Christian, contemporary country and rap) and at the end of one date we sat in my car and listened to the album from front to back – he was impressed with the range of styles of songs included on that one disc. He was a recruiter for a small music and sound tech school. The only way I can describe his appearance is that he looked like the love child of Chris Farley and Guy Fieri; henceforth I will call him Chris Fieri. He was mostly bald and the remaining hair he had he dyed fluorescent blonde. He was outgoing and enthusiastic – sometimes without being aware of social cues. I thought it would be nice to date someone who was inherently social rather than introverted because I love to get together with various personalities and it would be great to not have to worry about him wandering off to a corner by himself.

Chris Fieri and I went on a series of dates over the course of a few months. I even made him a part of my birthday celebration, and the best gift he could have given me turned out to be absolutely fantastic camping chair that I have now used for years to go to outdoor concerts. We went to movies and dinner dates, and then joined back up with other people from the group for shows and bar outings.

One time he invited me to the Wrigley Mansion to watch his friend play a show. This friend was a guitarist and it was a great night for music; also included in the audience were a few others including the former drummer for the Gin Blossoms. At one point it was eight guys and myself in our little group. However, I could tell that this crowd ran at a different pace than I did – most of guys had well-groomed eyebrows and the same style of button-down shirts with embroidered designs over one shoulder as if they had an elaborate underlying tattoo that could not be contained by fabric alone. I am more the type that I am not constantly concerned with my appearance and can only truly relax if others around me are confident in themselves rather than overcompensating.

The Wrigley Mansion’s stage was tiny, only enough room for the guitarist and a percussionist. The Mansion’s version of packed is not your normal night club’s capacity; packed for them would be 75 bodies. As the set progressed, more of Chris Fieri’s friends showed up, including a shorter guy with a gorgeous girlfriend. The guy looked like he got into fistfights all of the time fending off his girlfriend’s admirers. The original eight guys of my group found excuses to be near her and compete to be the loudest/wittiest to get her attention. It was strange to watch because she did not give any one person attention, but instead found another guy in the bar and repeatedly turned and smiled at him while her boyfriend wasn’t looking. I kept thinking to myself, “How could Shorty be missing this??” Finally, more women made it into the bar area to check out the music. Well, Chris Fieri gave up on trying to get the one girl’s attention and went tripping after the other girls. And when I say “tripping,” I mean tripping. He launched himself at them without having a solid concept of inanimate objects like tables and bar stools that were nearby, and hooked his foot on the leg of a stool and almost did a full frontal body splat.

All of his buddies saw this too. A few of them turned to me, looking uncomfortable, and said, “I thought you two were together.” They could tell I wasn’t thrilled. After the end of the second set I was at the foot of the stairs leading up to the second floor of the bar area, and Chris Fieri came over to me and put his arms forcefully on my shoulders as if he was trying to drive my feet into the floor and sloppily kissed me. I couldn’t easily fend him off because he outweighed me by at least 150 lbs, but I did wipe my mouth with the back of my hand as soon as he was done and told him I was outta there. Immediately he went on the defensive and said, “Are you mad because I talked to other people??” I knew that trying to reason with a man who had had about five drinks too many would be a challenge, but I told him I wasn’t bothered by that, I was upset that he was trying to pick up other ladies right in front of me. Then his Chris Farley voice came out and he started bellering that everyone was talking to other girls and that he only did what everyone else was doing. So I said, “Fine, pretty sure you don’t need me here for that,” and I retrieved my car from the valet.

The next day he called me and told me the same thing – that everyone else was trying to pick up women, so he was just doing what they were doing. I told him even his friends were embarrassed by his behavior and it wasn’t my imagination. I didn’t go out with him again, even after being pushed by another group member who had taken pictures of us together and posted them on MySpace – and strangely enough, four years later again on Facebook – with the caption, “Where are these two?” I had to ask him numerous times to take down the pictures. It was obvious that Chris Fieri was trying to be “cool” like the rest of his buddies.

It’s human nature to notice attractive people around you. We are drawn to those who have perfectly symmetrical features, just as we subconsciously recognize symmetrical patterns in spider webs and leaves that grow on plants. However, the way that you handle that attraction is what sets you apart from the rest of the animals. Chris Fieri learned the hard way that it doesn’t matter if everyone else is rubbernecking; he’s not going to win points from me for tripping over furniture to chase down other women while I’m standing next to him. I can’t imagine the woman with the shorty boyfriend lasted long in their relationship either; she was obviously a trophy, and he was clearly someone to pass the time while she looked for a better option.

A fellow blogger posted thoughts this week on disconnecting from social media; she found that she was much more likely to multi-task or have online ADD, jumping from one project to another without completing one first. She also lamented the fact that she didn’t have the attention span required to read a whole book like she used to, but instead sought out short  and efficient text. How does this relate to dating rubbernecking? It’s everything. We like short paragraphs in personal ads, we cut off a date after 30 minutes if we feel zero attraction, we look at other people and mentally undress them while distractedly answering “Yes” or “No” to the dates sitting across from us.

It’s a lot harder now to not rubberneck. Our constant state of distraction is the bane of our love lives.

100 Dates

Posted on by akiwifreund

When I moved to Phoenix in 2003, I didn’t know anyone. Not a single person. I also didn’t have a place to live or a job, but thankfully I did have some money in savings, so those two things kinda took care of themselves. Creating a new circle of friends was a huge challenge, though. The first job I landed was as a traveling trainer; I flew to cities all over the U.S. to train loan officers and processors on the new software that was being implemented for a large mortgage company. This meant that sometimes I would only be in Phoenix for 20-48 hours total before I had to fly out again – long enough to do laundry and repack. I also didn’t know my way around Phoenix at all – this was long before cell phones were able to navigate and navigational systems were hugely expensive. I thought the perfect way to juggle all of this was to go on dates.

My reasoning was this: 1) I could meet a lot of people; 2) It would force me to learn the city; 3) I wouldn’t have to buy groceries that might spoil while I’m on the road. I used LavaLife to shop for men and make plans for when I’d be back in Phoenix. I booked breakfast, lunch and dinner dates. Occasionally – rarely – some of them got second dates.

One that did was Don Juan. He was a slick Mexican guy with a BMW, and turned out to be my introduction into the world of “Netflix and chill” before it was a thing. He was soft-spoken and had the appearance of a teddy bear. Make no mistake, though – he was dirty, dirty, dirty. But it got a little old being FWB, because I wanted to get out and actually do stuff in my new city. One of the few nights we were out I was driving and flashed my lights at a driver who forgot to turn his lights on, and Don Juan yelled at me, saying “Guera (pronounced “wetta”), don’t flash your lights! Are you trying to get us killed?? That’s a gang signal!” Most of the areas in Phoenix cleaned up a lot by the time I moved there, so I didn’t immediately see why he was so freaked out. However, from that point forward, I could always hear his voice in the back of my head when I reached for my lights to flash them at another unaware driver.

Another was Earl. I had a soft spot for Earl because he was a ginger, he had a deep voice and a sarcastic sense of humor. We only went out a few times because he was another one who told me I must be a big whore because I went on lots of dates. I get a little bucky when I am accused of something like that – what’s wrong with going on dates? I didn’t even hug most of them, much less share my bed. However, I did file away his occupation in my memory bank, because a year later I got him to make a job offer to a friend.

There was one week that I had three dates with three different guys from Minnesota. The first one was a hockey player from Minnesota. You’d think that we would have a lot to talk about because of some common interests…but NO. He was not a big talker. We found out on the date that we actually had a mutual acquaintance in Phoenix, but that conversation didn’t go far either. He asked how I knew her, I asked how he knew her, and that was that. He had pretty hair and pretty eyes, and I’m thinking he was used to skating by on his looks. Ha ha – SKATING! I didn’t even mean to make that funny.

The second guy from Minnesota invited me over to his place for dinner. However, dinner was really just “Netflix and chill” while his black lab threw himself enthusiastically into the pool in the back yard over and over. (His neighbor thought that HE was doing belly flops into the pool.) There was no dinner in the deal.

The third guy from Minnesota met up with me for a date that Saturday night. This one was a good one. We met in August of 2004. He was tall, handsome, had a deep voice and was very, very calm. We entered into an arrangement where we would meet up for a dinner on a Saturday night whenever we were both home (he traveled a lot for work too), so he became Mr. Saturday Night. Though it was not a traditional love match, we kept in touch for years and would meet up every once in a while because we were so comfortable with each other. Oh, and we dearly loved to laugh! We would laugh for hours. He told me that I would always have a special place in his heart, and I told him the same. I took him to an event without knowing it would be the last time I would see him, because if I had, I would have wished him well. Mr. Saturday Night decided to let go of his past relationship with an emotionally abusive alcoholic and open himself up again to finding love. There was no space for me because I was the transitional person. I will always be grateful to him for being accepting of me, twisted wigs and twisted humor and all, especially since I have encountered so many men who have not been able to live with what was hiding under the prosthetic. I know that he was successful in finding his match because he sent me a note on Facebook telling me he was taking her to Minnesota to meet his family; I took it to mean that he was closing the door forever.

I learned many things on these 100 dates:

  1. There are a lot of McRoads in Phoenix:  McKellips, McClintock, McDowell, etc. Makes it difficult to navigate with only a paper, accordioned map.
  2. Being nervous adds no value. After going through so many first dates, it’s really tough to make me get stage fright.
  3. People from California tend to not be reliable because they make plans and break them if something better comes along or they are very late. Be prepared to hear about how great California is repeatedly.
  4. Internet dating is still blind dating. No one has screened the other person for you, though – you are on your own in that department. I’m not even certain that all of them were unmarried at that time even if they claimed it to be true.
  5. Guys who say over and over again that they are nice guys and complain about not getting any dates is a red flag; usually the guys that claim this don’t actually like women, but rather just see us as these things that can service them.
  6. “Netflix and chill” is appropriate after, say, four months together, but not four minutes or four hours. I still wanna go on real dates.

Not Sick Enough?

Posted on by akiwifreund

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?

Yes, I Have a Type

Posted on by akiwifreund

I like men. Tall ones, short ones, fit ones, cute ones, nerd ones, “dad body” ones, I can find something to appreciate in many. However, there are certain things that make me stupid – panty-droppers, if you will. They are:

  1. Firemen. I mean, c’mon, this should be a no-brainer. Granted, some are cuter than others, but family and friends alike encourage this particular addiction by sending me photos and buying me calendars. Even my realtor sent me a picture from a property she was renting to five firemen in Tempe, AZ – one of the guys was posed naked on top of a bicycle out back at the pool, helmet on his head, cigarette in his mouth, and holding a rifle. He was quite fit. His leg very coyly covered up his frank and beans. It was my dream photo minus the rifle and the cigarette. He had it blown up to poster size, which made it easy for the realtor to capture and forward to me. Nearly every day someone posts a half-naked fireman (or if it’s my lucky day, fireMEN) on my Facebook wall. My best day was just a few days after I got Dumb and Angry to move out of the house, I had to call 911 to get help because I thought I had popped my shunt out of the little hole in my cranium, and I was in heaven because I had a house full of firemen. They were all running through my house telling me how much they loved it while a couple stayed with me to work me up, so as I was being wheeled out of the house, I told all of them that I was looking for a roommate. Pass that up? Not me! Of course, I was in crazy pain and had just taken a big dose of painkillers so I was high as a kite, so who knows what else I said to them. I’m pretty sure I didn’t try to stuff dollars down their pants.
  2. Tall men. My first two live-in boyfriends were 6’2″ and 6’3″, and a former boyfriend was 6’4″. I tried twice to make a date happen with a guy who was 6’6″ (he wussed out, had just gotten divorced and was too damaged to follow through), and I think the guy who told me I looked like his dead wife was at least 6’3″. What is it about the tall guys? I’m not sure. I mean, yeah, they can see the top of the fridge, but big deal. I think because I’ve never been considered small, I don’t feel like Godzilla around the tall guys, as in, “Me smash little puny men and snap their thighs like twigs!”
  3. Musicians. I’m talking real musicians, like the ones that can play seven instruments or don’t rely on electronic alterations like auto-tune. I’ve lived with two drummers who could also play other instruments. I think I would give my left pinkie finger to go out with Glen Hansard (at least until I figured out the hard way that he’s a nutter or something). I think this stems from playing a few instruments while in high school and teaching myself a little piano, because I understand what is needed in order to be really good. Kid Rock can kiss my fat ass, he’s as talent-less as they get.

What I miss the most is being able to flirt, especially when I encounter a guy who would normally be somewhere on this list. If I attempted to flirt, any reciprocation would be along the lines of, “Oh, look, the sick lady with the cane and the droopy face is trying to get some action!” I can’t walk down the street with confidence while simultaneously looking for strong biceps or shapely buns because I can’t see further than a few feet in front of myself. You could parade a tall, naked fireman playing a guitar in front of me and all I would be able to see are his toes. All of my good years are being wasted in this bed while a whole new dating pool churns in the world outside my door. It seems criminal.

Magical Medical Mystery Tour

Posted on by akiwifreund

Today was the beginning of a string of appointments to become established with a new team of doctors in the city where I have relocated. Immediately upon arriving via cab, I knew that I was wasting my time.

The building was old, maybe built in the ’60s or ’70’s, and did not have automatic doors (first clue). I took the elevator up to the third floor, and arrived in a dingy hallway with sad puke green carpet. A sign in the elevator banks told me that this floor included plastic surgery, physical therapy, neurology, gynecology, hand surgery, general surgery and pain management. Picture this: All of those specialties crammed behind two closed doors, with only two receptionists to check patients in (second clue). I’m used to going to offices where neurology takes up an entire floor and I’ve never seen a list of thirteen-plus specialties squeezed into one space. By contrast, all of the good doctors a) have cleaner floors, and b) charge more, and c) are more up-to-date on research.

I arrived with all of the copies from various doctors and notes from St. Joseph’s Hospital in Phoenix, because I (correctly) guessed that the huge stack of paperwork still hadn’t been scanned into the system so all of the other doctors can see it. I spent about ten minutes total with the doctor. Out of all of the information I provided to her, she asked me repeatedly why I had a shunt, since I didn’t have a diagnosis. I told her that it was obvious after the repeated lumbar punctures that I needed to have something continuously take the fluid off of my brain. I mean, at some point, you have to go with what you see, even if you can’t put a name to it. A name is just a name. A diagnosis is just a diagnosis. I’m a complete person, which also means that I am complex. It’s been five years, so I’m not surprised that a diagnosis is still evading all of the medical staff.

In the end, she threw up her hands and said she had absolutely no idea what was happening with me, but she would be happy to send a referral to any other physicians of my choice. To me, those were the magic words, because I had discussed one doctor in particular with one of my sister’s employees, and it turned out that he would only take patients on if other doctors made the referral (no matter which insurance company foots the bill).

As I suspected, it was not yet time to exit the Magical Medical Mystery Tour – certainly not under that roof, anyway.

Let me explain one more concept to you, and that is of the Carousel of Crap. We first started referring to the Carousel in my former work group as we faced some very specific challenges regarding office politics. The Carousel of Crap is the ride we can all relate to. You go around in circles, the music is a little too loud and whiny, you are nauseated because you ate a little too much cotton candy, you can’t get off because the ride is still moving, and there is shit flying everywhere.

I feel as if I have made a stop at the Carousel while on this tour. I can’t get off, I’m a little sick to my stomach and there is shit flying everywhere. I have to explain everything from scratch. I have to deal with doctors who aren’t interested in reading about my case. I must do my own research and try to find better specialists who are further away from my home base (read: more expensive cab fare). I’d like to tag out and have someone else be me for a while so they could find out what it’s like to be a rock star in the rare and difficult world.

There’s No One Waiting

Posted on by akiwifreund

I belong to an online support community where patients, family members and care providers can ask questions of each other or find others who are facing the same challenges. One man was trying to be proactive as the spouse of a woman newly diagnosed with a debilitating autoimmune condition, and asked basic questions, such as would it be worth it to see a specialist vs. a regular internist, and what should he expect from the insurance companies? Here is my reply:

I love hearing about supportive spouses! My mom has a very supportive husband, and my sisters do as well – we ladies have terrible genes, unfortunately.

Just keep in mind that “supportive” might mean different things at different times. Fatigue and pain are the most common symptoms of any autoimmune diseases, and what she may have been able to do one day might change the next day, and then change back that day after that. Confusing, right? It will be. In fact, there are going to be other odd things about her condition that will confound her, and you. One thing that I like to tell people in my circle is that they should not start any conversations with, “Why don’t you just _______?” If there was an easy answer, we’d have it already.

My personal experience has been that it is tougher to deal with the doctors and staff than it is my insurance company. Don’t be afraid to fire doctors and look for new ones if they refuse to treat your wife (and you) as people who are involved in your wife’s care. It doesn’t do anyone any good to just blindly follow without understanding or questioning why certain things are being ordered, like meds or tests. I don’t get along with doctors who don’t allow for an open dialogue. Sometimes I will even write down a list, and when the doc enters the room, I first ask, “How much time do we have?” and then I tell that person I have a list. The good ones appreciate efficiency. And boy, read as much as you can. Get info from reputable websites, but also look for posts on your wife’s condition from people like us. There may be times when she thinks she is completely alone – but someone inevitably will confirm that she’s not crazy, and whatever is happening is affecting someone else as well.

Just as a side note: I live in a very large city, but have a hard time finding a decent rheumatologist – no one wants to go into that field because there aren’t any cures and the patients all complain. Anyway, the last time I went to see the nurse practitioner, who I was handed off to unwillingly, he told me that if I would just lose weight, the lumps in the tendon sheaths in my hands would go away. I told him I didn’t walk on my hands, so I didn’t see how losing weight would affect the lumps. I fired him.

And my final piece of advice is that I beg you, both, to keep your sense of humor. Try to find something to laugh about every day, even if it’s at the absurdity of what is happening at that moment.

What I would like to add, though, is that I hope his spouse realizes how lucky she is. Dating at my age is no picnic, and heaping complex diseases on top of that guarantees singlehood. I’ve been left by men I have been seriously dating when they realized that the surgeries would be a constant in my life as surely as I have green eyes. That’s why it kills me that every time we get to question of who is in the waiting room for when I get out of surgery, the nurses ask me multiple times, “Don’t you have someone in the waiting room?” It’s always the women who are disbelieving – surely not all men are put off by my bald head and scars all over my head from surgeries? Believe it, sisters. There is no one waiting for me to come out the other side okay.

Do You Believe in Ghosts?

Posted on by akiwifreund

There didn’t used to be a catchy phrase assigned to it when I first entered the dating pool roughly 25 years ago. You think everything is going well and you’ve made a real connection with someone who seems just as enamored with you, and then suddenly they disappear. That’s all we could say – “disappeared” – and shrug our shoulders, and wonder what in the hell happened. Back when all we had were street addresses and land line phones to go off of with information, it was much easier to disappear, especially if the person disappearing didn’t travel in the same circles as you. There was no chance of someone coming back to you and saying, “Oh, I heard about Ben – turns out he ran off with a stripper, and I know where they’re living – wanna TP their single-wide trailer?”

Here is the Urban Dictionary definition of ghosting: “The act of suddenly ceasing all communication with someone the subject is dating, but no longer wishes to date. This is done in hopes that the ghostee will just “get the hint” and leave the subject alone, as opposed to the subject simply telling them he/she is no longer interested. Ghosting is not specific to a certain gender and is closely related to the subject’s maturity and communication skills. Many attempt to justify ghosting as a way to cease dating the ghostee without hurting their feelings, but it in fact proves the subject is thinking more of themselves, as ghosting often creates more confusion for the ghostee than if the subject kindly stated how he/she feels.”

Our current technology has made it nearly impossible to disappear like we used to. We can pay for electronic searches, we can search online public records, we can search for friends of friends on Facebook, we can…wait, I don’t want to give everything away. But it can be done. (Disclaimer: If I am looking for an ex, it is usually to find out if he is staying put while I move around so I feel a little more safe.)

I have become a lot more forward and plain-spoken than I was in my 20s, and so I’m much less likely to ghost someone. In other words, I’ve learned from being both the person on the receiving end of the ghosting as well as being the ghost, and I’ve evolved enough to know that it’s better to communicate than to leave the other person wondering what in the hell is going on. Do not mistake this for other situations where you have given the other person reasons ad nauseum as to why you’re not interested or you don’t want to be contacted again, because that is not the same as a ghosting.

The worst ghosting that was ever done to me was from a guy whom I dated for 6 months from 2004-2005. We met through an internet site – maybe Lavalife? – and bonded over our love of the arts and singing. He was going through his second divorce and at the time had a 3-year-old son. He worked for a credit union, but that only paid the bills; his real passion was doing voice-over work (he was hired for the animated show “The Critic” to perform 30+ voices shortly before it was cancelled), and he liked to write children’s sci-fi. He LOVED the movie “The Incredibles,” and in fact, one of the books he wrote (and copyrighted before the movie was created) was almost exactly like “The Incredibles,” so from this point forward I christen him Mr. Incredible.

Mr. Incredible and I talked on the phone every night – or rather, HE talked about himself for 2-4 hours every night. He moved out to Queen Creek because it was the only place in the Phoenix area where he could afford a house like many others being priced out of the market during the housing bubble, so that meant I had to drive an hour on back roads from my apartment in southeast Phoenix to get to his house even further southeast of town. It meant a lot of driving for me – and I can’t remember why I agreed to do most of the work on that. Also, shortly after we started dating, he acquired two cats for his son because he thought it was really important for him to have pets, never mind the fact that his son tried to kill a cat the year before by throwing it off of a second-floor balcony. (The kid was two. He didn’t know better and they didn’t bother teaching him.) I’m deathly allergic to all animals furred and feathered and it was hell to sleep over. I had also taken a huge pay cut when I relocated from Cincinnati to Phoenix so I didn’t always have cash to buy dinners or even groceries. More often than not, I found myself stopping at the grocery store buying food for Mr. Incredible that we would sometimes eat together, but sometimes it would just be for him and his son. Also, I let Mr. Incredible borrow furniture and blankets for his new house. I met his mom and brother, and he met my parents.

I remember that Mr. Incredible was sad the weekend he found out his divorce from his second marriage had been finalized. I understand that feeling even though I haven’t ever been married or divorced myself, because it makes the split so final. Or so I thought.

Some things changed our dynamic. One was that he accidentally saw me full-Mr. Clean in the bathroom because he walked in on me getting dressed after a shower. This was about four months into the relationship and I could tell it bothered him. Up to that point I had slept in full wigs to try to spare him – and got very little sleep because I would worry about moving around too much and ruining the hair fibers of the wigs, and these wigs in general are miserable to sleep in. The materials they are made of scratch up my tender skin and rub it raw. Around this same time, Mr. Incredible was letting his always-cheerful facade slip. I think he got it in his head that he was a dad and therefore had to be all little league instead of a little dirty, so every time he would suggest something slightly sexually deviant or tell me about his marathon coke-snorting sessions of the past, it was disturbing. That is not to say that I was demanding that he always be cheerful, but I felt as if he wasn’t being his true self.

Mr. Incredible lost his job at the credit union; he said it was a layoff and I have no idea if that was the truth. Our marathon phone sessions began to revolve around revamping his resume and searching for jobs. When we weren’t doing that, he pulled out his Incredibles-esque book for me to edit for both grammar and content. I remember we had another 2-hour phone session on a Saturday night and I knew he had his son that weekend, so I didn’t expect to talk to him until at least Monday. We also traded emails daily up to that point. I (thought I) knew what to anticipate.

I didn’t hear from Mr. Incredible Monday or Tuesday either by phone or email. I left him a message and also emailed him and got no reply. I tried the same again Thursday with the same results. For all of the time we were together, a single day didn’t pass without us communicating, so I knew something was happening. Email and phone weren’t getting the job done, so I decided to stop trying to ask what the fuck was going on.

I drove out to his place on a Saturday morning at around 7 am, when I knew he would still be in bed. I was sick to my stomach and shaking. I rang his doorbell, and I heard some rustling around, and Mr. Incredible came to the door, his hair sticking up all over as if he had just peeled himself off the wall like velcro. He had horrible circles around his eyes and what looked to be three cold sores around his mouth, and all I could think was, “Beetlejuice, Beetlejuice, Beetlejuice!”  I said, “I don’t care what is going on. I came to get my stuff.” (Mind you, a lot of my belongings were forever donated to him and the house, but I definitely wanted to get back a quilt my mom had made.)

I waited outside while he gathered what he could. After I slammed the trunk shut and got into the driver’s seat, he hung off of the half-open window and said, “I know you were concerned about me finding a job, so I just wanted to let you know that I have some interviews coming up.” Nothing at all about why he had gone radio silent. I told him I didn’t give a shit and I tore away from the curb. I blocked his email and de-programmed my phone so that his number was no longer in my speed dial.

I really didn’t have any idea what happened until I went searching on MySpace a year later and discovered that while we were together, he was also messing around with his most recent ex-wife and got her pregnant.

In 2009, while I was living with Drummer #2, I got an email through YouTube. I didn’t even know that YouTube had an email system! There was a letter from a screen name I didn’t recognize, which started with Mr. Incredible saying that he was using YouTube because I had blocked him everywhere else. At the time he was writing the email he was in the process of divorcing wife #2 a second time (divorce #3, for the record), but the best thing that came out of their second marriage was their second child. It wasn’t an apology. Rather, it was a way for Mr. Incredible to talk about himself yet again. Drummer #2 was actually in the room with me when I got the email and told me I looked as if I had seen a ghost. All of the old emotions came right back up again, dominated by hurt and anger. I wrote back a scathing note basically telling him he was a piece of shit to treat me so poorly after all that I had helped him with, and why did he think it would benefit me in any way for him to tell me that he didn’t regret anything and that he got a daughter out of the deal to boot? Drummer #2, dick that he was, told me that I shouldn’t be upset because at least the guy tried to find me again. The reply I got from Mr. Incredible said that I was right and he was sorry, and he wouldn’t try to contact me again.

And he hasn’t. But every once in a while, I check his Facebook page, and I confirm he still sucks at dating.

Side Eyes

Posted on by akiwifreund

Internet dating takes a lot of patience. It takes a lot of patience, a sense of humor, a filter, a hard candy coating, and a take no prisoners attitude.

I have had many forays into internet dating, though the concept is a lot more organized than when I first dipped my big toe into it. See, kids, first there was instant messaging on AOL. Then MSN messenger became popular. Then Yahoo messenger joined the fray. Any other programs after those big three were copycats and fleeting.

The internet used to be very difficult to navigate and very boring. I remember poking around on it circa 1991 and thinking it wasn’t at all interesting – it moved painfully slowly, and it was like reading a 102-page term paper. But only a few years later, when these messenger programs were becoming popular, pop-up ads and porn were running amok like children who only ate sugar for all of their meals. So it didn’t take long for sex and porn to work their way into conversations happening on messenger windows.

By 1996, the internet was evolving quickly. I remember how exciting it was to join chat rooms to talk about a topic and actually connect with other people in real time. From my profile, other users could tell that I was a single woman in my 20s, and within a few minutes, I would be trying to juggle upwards of 25 windows of private chats – specifically, men who were trying to hit on me. Sometimes there would be bots in the room who would automatically start a chat when someone new would join, and they would include a link for you to click; but being the savvy users that we were, the other members of the chat would send out a general warning to ignore “STACIA69” or some similar screen name because it was a bot that would send your machine a virus. Decades before textspeak, we all had to learn cute codes and acronyms. There was no DTF (down to fuck), but I’m pretty sure the original was BRB, which, depending on who you ask, either stands for “be right back” or “bathroom break.” The chat rooms I chose to enter would be based on my location; at that time, I lived in Albuquerque, so I would enter a chat for that city or state. I hadn’t dated much before moving to New Mexico, so I wasn’t exactly confident in my ability to catch anyone’s attention. Suddenly, hoards of men wanted me! They all thought I sounded cute – blonde hair, green eyes, not too tall or short. If I felt like we could have conversations lasting more than two minutes before a guy started talking about banging, I’d go out with him. BAM! Internet dating.

Fast forward to 2003, after two live-in boyfriends: I relocated to a city where I didn’t know one single person. By this time, there were a few very popular sites set up specifically for dating, including eHarmony (which was heavily running ads on TV) and LavaLife. I tried to take the free eHarmony quiz, and at the very end of it, I wasn’t completely turned down, but I did get a message saying “Only 3% of the male population would be interested in dating you. Bear with us, it may take a few weeks to find someone who would be a match.” I joined LavaLife instead. I think they had categories available for people to choose broken down into “Dating,” “Long-Term Relationship” and “Just Sex” or something like that. I quickly found out that it didn’t matter which category you designated – the men would hunt you down for just sex. I remember that I went on a few dates with a guy who was a chauffeur, and I wasn’t feeling especially connected or attracted to him, but we were having an okay time – or so I thought. At the end of our third date, he turned to me, exasperated, and said, “So are we going to fuck or what?” I chose the “or what” and that was the end of that. Another guy that I started talking to through the site was in Italy (Yay! Very exciting!), and we started talking on Yahoo messenger. I think it was only five minutes into the conversation when he started sending me buzzes to try to get my attention because I wasn’t answering fast enough, then he told me he didn’t want me talking to any other men. To clarify, I wasn’t allowed to smile at or even look at other men, even if it was a guy ringing up my groceries. BAM! Internet stalker.

Around 2005, Match.com and PlentyofFish.com entered the picture. At that time, both were very rudimentary; Match considered you a “match” if your height/weight/age/eye color fell within the other person’s parameters, and Plenty of Fish allowed users to send emails, but that was it. It was around this time that I started singing to myself, “Shopping for men! Shopping for men!” every time I’d log on. I had become a lot more specific about what I was looking for in men, starting with their grammar – if they couldn’t formulate a complete sentence, I’d write them off and move on. I also noticed that the messages from the men on Plenty of Fish were getting more and more outrageous, so I didn’t really take anything on that site seriously, because I think all of the guys were DTF and crazy to boot.

OKCupid entered the scene around 2008 or 2009. Their contribution to the now-crowded internet dating scene was the questions. The questions ranged from “Are you looking to settle down and have children?” to “If you caught your husband looking at animal porn, what would you do?” You could answer as few as five questions or as many as a thousand, but the more questions you answer, the better the picture prospective dates could compile from your answers. (Of course, everyone is expected to be on the honor system and answer truthfully. You should always answer “No” if you are asked if you would do something immoral and/or hurtful, even if your instincts say that you should answer “Yes” to screwing that turtle if no one would ever find out.)

In 2011, after many starts and stops with internet dating, I was giving it another go, but sticking to the free sites – OKCupid and PlentyofFish. Surprisingly, on PlentyofFish, I had a decent conversation with a guy. We were talking about traveling and road trips and seemed to like some of the same things, but had enough diverse interests from each other that I would be able to look forward to new adventures. We talked about where to meet up in the next week. So upon waking up the next morning, imagine my surprise when I opened a message from him that was sent at 3 a.m. and it was a folder of dick and cum pictures. I replied back asking what in the hell he was thinking, because we hadn’t been talking about sex at all. He gave some lame excuse about not meaning to send them to me. I told him that shit would not fly with me, and he apologized. The next morning I woke up, and there were more dick and cum pictures, sent around 2 a.m.! I replied and asked what the fuck was going on, and he said he was a recovering alcoholic and had impulse control problems. I didn’t feel the need to stay in touch with him. (Also, just as a side note, if your dick is smaller than a thumb when it’s hard, I don’t advise sending unsolicited pictures. Warn a girl first.)

A lot of the messages I was receiving on OKCupid weren’t going anywhere either. I think I went on a handful of random dates, but nothing made it past the initial meeting. The way that I was being approached was pretty trite – almost every guy said, “What’s up?” or the bad grammar version thereof. At least when I approached men, I would find something in their profiles to talk about. One guy immediately asked me out for dinner, so I looked at his profile, which didn’t contain any information, so I next looked at the questions he answered. One theme that kept coming up was his dabbling with hard drugs, including meth, coke and heroin. I replied that I wasn’t interested and I wouldn’t date a user. His reply was, “C’mon, it’s not like I’m going to do blow off your tits. Big deal if we go out to dinner.” Yeah, buddy, still not interested in wasting an evening with you.

I swore off internet dating forever after having some bad experiences. However, now that I have relocated and reconnected with my uncle, I discovered that HE is doing internet dating. (He is also texting on a regular basis, which I blame on him having a 16-year-old son.) He found an age-appropriate girlfriend for the first time in his life – he’s in his early 60s. So of course I irrationally think, “Well, if he can do it, maybe I can try again.” Never mind the fact that I walk with a cane and have a droopy face, and most days I can’t be bothered to wear my wigs because they’re uncomfortable to lay down in…someone has to be okay with dating Quasimodo, right???

On second thought, no. I don’t want to be someone else’s internet dating story.