spoonies

Pain in the Ask

Posted on by akiwifreund

Every time I watch this clip, I giggle. I hope you will too.

 

Today I had a little procedure in the surgical area of the University of Minnesota. Truly, it was little. But since 1/1/2016, I’ve been in a lot of pain because I developed a boil near my tailbone as a result of laying in bed for 8 months straight. Sure, I get up once in a while, but I’m in bed at least 22 hours of every 24 hours.

We thought it was the trucker’s cyst, but luckily it wasn’t – it would have taken a lot more cutting to pop that meatball out. First I met a PA who turned out to be very, very new (I’m thinking it was his first day or first week because he was asking where everything was for supplies). I didn’t joke with him because I realized how new he was and I didn’t want him to lose his place in asking me questions; a memorized script that one can skip around out of order comes with experience, and he obviously wasn’t at that point yet.

The general surgeon came in, and damn, he was cute. He took a look at my ass, and I made a joke about having to show my ass to everyone. Hey, I worked my way through St. Joseph’s Hospital in Phoenix – may as well start on Minneapolis now. He asked me how I felt about them cutting and draining the problem area. Of course I agreed – I told him to exorcise the demon. Everyone stepped out of the room to enter notes in my chart.

The nurse came in with the PA and she and I chatted while they got all of the supplies ready. Then the PA had the task of shooting me up with Lidocaine. His hands were shaking like the dickens. I honestly don’t know if it was because he was making an effort to spread the juice while the needle was inserted, or if he was just scared shitless of shooting up my left cheek. I want to give him the benefit of the doubt; besides, whenever I get Novocaine in my mouth when I’m getting worked on by a dentist, they do this crazy thing where they flap my mouth around while doing the injection – maybe to avoid getting a big old bubble of juice and instead encouraging it to go into the surrounding area? I got about 8 shots.

They left again, and in about 15 minutes they returned to do the cutting. The doctor talked the PA through doing the incisions. When he said, “You’re going to need to go deeper,” I was just at the point of yelling. They had warned me that the acidity of the bacteria that was pooling in this spot would make the Lidocaine less effective, and they were right. The nurse told me I could swear. I told her that my inner truck driver was coming out and I was getting ready to recite every nasty term I could think of.

They packed the area and then covered it with a large patch. The doctor asked me where I lived and then told me it would be a good idea to return to his office every day and his nurse could repack the wound, at least for the next week. At some point they may even try to get me to pack it myself, but it’s in a spot I can’t exactly see, so that will be a challenge.

In the end, they only got about 5 ccs of fluid out. What??? That tiny bit of junk made me feel as if an ostrich egg had been laid under my skin.

This is going to be a problem for date #3 with Nashville. We were supposed to get together Monday for a day date after he finished his overnight shift, but instead, I have to get my ass packed. By Monday it will have been three weeks since we last saw each other and I don’t want to delay another week, but I don’t think I have a choice. Plus there’s going to be no monkey business while I’m dealing with this wound. I can’t get laid and it makes me want to kick some ask.

Unintended Consequences

Posted on by akiwifreund

I keep a reference book from the days that I was studying to be an RN that has tons of diseases and explanations – kind of an encyclopedia of conditions. I realize that we have the internet at our fingertips, but sometimes I whip that book out and read it for fun.

However, this week I went directly to the internet. I started having sharp pain near my tailbone and discovered a cyst that had formed that’s just about the size of a ping pong ball. I’ve had this happen once before, about four years ago. The cyst went away on its own. However, I’m keeping an eye on this one, because I’VE SEEN THE PICTURES. DAMN THE INTERNET.

If what I’m seeing is correct, I’ve got a pilonidal cyst. Here’s the funny part: usually it happens on hairy truckers. No joke. They sit on their asses all the time, and the hair on their ass gets crushed into their skin. Sometimes the hair actually punctures the skin and is pushed down into it, and all that pressure and heat makes it a breeding ground for bacteria. And we all know those truckers can get sweaty from all that time on the road. That’s why truck stops have showers.

Number 1, I’m not a trucker. Number 2, I don’t have any hair anywhere (except my big toes, sometimes). However, because I’m on bed rest for about 22 hours of my day for the most part, it’s probably still a nice warm and moist place for bacteria to proliferate.

I’ll never know what actually prompted the start of the cyst. I can tell you that it’s as painful as it sounds – I’ve got a pain patch slapped over the top of it right now. I also know I have to be careful in watching it because if this sucker doesn’t go away on it’s own, I have to have it surgically excised.

I don’t have much of a choice regarding laying flat all day. It helps to take the pressure off of my brain. But just like astronauts being in space too long and having things like osteoporosis pop up, there’s stuff you don’t think about happening because of being bed bound until it actually happens. For instance, besides this cyst, I have braces that I have to wear for my legs when I am laying down. The tendons in my legs and feet are tightening and shortening from not being used. If I don’t wear the braces, walking becomes very painful.

So, to wrap this one up, I just wanted to let you know that I’ll be watching my ass for the next week.

Can You Hear Me Now?

Posted on by akiwifreund

I recorded a 20-minute interview with Daniel (“Danny”) Levine about this blog and this crazy life. I’ve only been here for six months and already the Minnesota accent is creeping back in. There were a couple of times where the sound dropped, but you get the general idea.

The Unbearable Lightness of Saying No

Posted on by akiwifreund

I wish that saying “no” to suitors was taken seriously.

I feel like I should rename the Quiz Master to Mr. Up Your Ass. (https://thesickandthedating.com/2015/10/29/whats-going-on-with-your-face/) Like clockwork, he has contacted me on all of the major holidays; I fully expect a message wishing me a happy new year even though I had to resort to telling him to knock it off when he persisted.

I don’t like resorting to being blunt or nasty, but even more than that, I hate being cornered, forced, coerced or manipulated into agreeing to something that I truly have no desire to take part in.

Many years ago, a co-worker and I were having a casual conversation about dating and attraction. He said that when it came to women, even if they were shaking their tail feathers at him, he really had to be hit over the head with a mallet for a woman to get the message through to him that she was interested in him. After being told in no uncertain terms that she desired him, it was his green light to go.

It is his voice that I hear when I say “no.” Because he said he had to be hit over the head to get the message, I no longer hesitate to pull that out of my stash of tools.

I signed up for the site datemyschool.com a year and a half ago in Phoenix while I was still getting surgeries and there was a better possibility that I could eventually resume normal activities. I had a conversation going with a guy down in Tuscon for about a month, but I got the overwhelming feeling that he would try to go back to his ex and reconcile. His profile disappeared and since it was abrupt, I’m pretty sure I called it right. I didn’t have any communications with anyone else.

A year ago I received this huge message that was obviously copied and pasted. It started with, “Hello Sweetie!!!!!….how are you today?….i just want you to know that I am soo intrest in you…” and so forth. After about the fourth sentence I stopped reading. He was going on and on and on and on about himself. There was nothing in there to indicate that he actually read about me and wanted to discuss whatever it was he thought would make us a good match.

Yesterday I received the EXACT SAME message from this guy. This is a clear red flag to me that he’s not going to be easy to communicate with because he is obsessed with telling women all about himself, and does not seem to care that he is copying and pasting and sending the message to the same people repeatedly. He also didn’t want an actual back-and-forth conversation.

Yesterday I was also interviewed for a rare disease podcast. My interviewer, Danny, asked me if I ever used my disease as an excuse not to date anyone. At the time, my answer was no. Today my answer is yes.

Here is our exchange. I was trying to be nice, to subtly send dude on his way.

Me:  Hi. I appreciate your enthusiasm, but I am currently going through a health crisis and so cannot travel. I wish you luck in your quest.

Him:  hello thanks for your msg .. hope you are doing good .. well i dont have any problem .. i can travel to meet you . but i 1st want to get to know you well .. so plz let me know how you feel ok ?

Okay, so he missed the message about the fact that I’m going through some major health issues. I decided to try another tactic.

Me: Thanks for your well wishes. I don’t feel well enough to carry on a long-distance relationship. Right now I have to concentrate on doctor appointments and rest.

Him: hello hope you are doing good there ?.. yes Oregon, Roseburg is where i live now… but i enjoy travel to anywhere, so I am willing to relocate so you don’t have to worry about the distance at all… but for now i just want to get to know you well i think that’s the best start…

Nope. Ignored my reply about not wanting to carry on a long-distance relationship. Well, that and he keeps asking me if I am doing good. Um, no, Bubba Gump, there is nothing in my replies that everything is just peachy. So….

Me: I’m telling you in the nicest way possible “no.” No means no. You are putting more stress on me by ignoring what I am saying, and when I get stressed, I feel even worse. Stop now. [My blood pressure is up at this point.]

Him: ok im sorry .. thanks

In his big, long monologue that he sent to me twice, he had some line in there saying, “I am not the jealous type but I do believe in being honest and you have to earn the trust of others. I have been burned in the past so my heart is fragile, so handle with care.”

I don’t see anything in his actions that indicate he is fragile. On the contrary, he completely bulldozes my replies and continues on his merry way. This DOES ring of the jealous type too – he feels entitled (to whatever is in his circle, be it a woman or whatever), and that immediately eliminates trust. He wants attention, he wants it now, he wants it on his terms.

What happens when men don’t accept “no” as an answer? Guys like this one thrive in our community, ordered by a court to keep a distance of 10 blocks away from his target at all times and pay her restitution of $9,000. He also got a restraining order placed on him for 5 years. Seriously, what does a restraining order and parole do? They certainly don’t stop him from killing her, if he decides that’s a solution for being spurned. I don’t see anything indicating he’s been ordered to take meds or go to counseling, but he’s obviously unstable. So basically he’s been told that this behavior is not very nice, and he’s been sent on his way with a pat on his head. Now he’s sitting at home and obsessing over how he’s going to try to get around the restraining order – I mean, if she receives a severed goat’s head with no return address, she won’t really know it’s from him, right?

http://www.startribune.com/the-stalker-of-the-current-s-mary-lucia-receives-probation-and-five-year-restraining-order/363852911/

Let’s change our dialogue. Let’s stop saying that women must have done something or worn something to invite violence against them. It is not criminal just to be a woman. It’s not criminal to turn down the advances of a man.

 

A Prayer Before Dating

Posted on by akiwifreund

Today, a good friend posted a surprising quote from her Christmas Eve church service: “Lord, touch us where we need to be touched.”

Amen to that!!! I mean, that’s almost exactly, word-for-word, the prayer I say before each date. Well, okay, mine is a little more elaborate: “Lord, please let him have clean teeth, pleasant breath, an unsloppy kiss, magic hands, a great personality and recently bathed bits.”

This holiday is a bit rough. First, I’m no longer in Arizona and gathering with friends to feed ourselves silly and play games like Cards Against Humanity. They are all my “other” family. I have hosted as few as one and as many as ten friends at my house, depending on if they had already been extended an invitation or they had family in the area. I have always made sure they had presents under the tree. I try not to think about this or any aspect of my former life, because it inevitably causes tears.

There is also a gap with our sister passing in July. Her absence also brings tears. This is the first time in about 23 years that I, my other sister and our half-brother are in the same city around Christmastime, and it would have been perfect to have our oldest sister here too. We are still scattering a bit – our brother is heading back to Wisconsin to be with his girlfriend and her family for the holiday. I wonder if we will all ever be in sync; none of us has experience in how to act like siblings as adults living in the same area, and I watch friends who have mastered this skill with envy.

And of course, there is no soul mate under the tree. Santa baby, what the hell???? It’s too soon for me to be able to tell if the person I recently met is a match; we have a few strikes, including my inability to drive, our distance (50 minutes on a good day) and his recent purchase of a puppy (since I’m deathly allergic). He has a good heart, though. Right now we are enjoying each others’ company.

This is a difficult holiday for a lot of my friends who are struggling with illness, loneliness, isolation or job loss. I don’t have any words of wisdom to pass along. All we can do is get through the next week. Maybe what we have wished for this Christmas – a job paying a living wage, gatherings with friends, a loving partner – will show up, but just a little late.

Below is a picture from my house in Phoenix when I had two living rooms and decorated two Christmas trees. Again, tears. God, I loved that house and the life I made in Phoenix. But happy holidays to you, wherever you may be.

2ChristmasTrees

Initiation to Rare Disease – Not My Own

Posted on by akiwifreund

Back in 2005, I worked in the tech department of a very large mortgage company whose CEO was the tannest, slimiest, shiftiest man I’ve ever seen. The tech department was overrun with men, so naturally, the few of us women tried to bond as best we could. One such woman, whom I will call Blondie, was a trip. She was born and raised in an Eastern bloc country and knew how to speak her native tongue and Russian first, so English was a third language.

In meetings, of course, we were outnumbered greatly by the guys. I remember our group being called in to discuss something. Blondie said, “Well, let me stick my chest out and say this.” Of course, she meant that tricky little saying, “Let me get this off my chest.” There were a few snickers around the room, so I leaned over to her and said, “Blondie, you mean, ‘Let me get this off my chest.” She nodded and practiced saying it a few times. When she spoke up again, she said, “Let me just take off my shirt and say this.” There was no hope of recovering after that one, the whole room lost it.

Blondie was a great person to socialize with. She was unafraid to talk to anyone, whereas despite my theater training, sometimes I hang back (but I think it’s mostly my desire not to be seen as a bore or a weirdo). It was because of her that I went to a swing dancing event and met a woman who introduced me to her good friend whom I dated for four months.

It was a big event with a 20-piece orchestra and every seat in the ballroom was filled. We were seated at a large round table with about twelve other guests, and it wasn’t long before we were all spinning around the dance floor. Blondie started talking to K. first when we were resting between songs, but then K. and I started talking. I revealed I was single and having a hard time with dating because I had to wear wigs to “pass” in public. K. excitedly told me that she had the perfect guy for me, someone who had been her good friend since childhood.

Never one to pass up an opportunity, I told her I was game. She warned me that her friend had a pronounced limp because he had a rare disease – neurofibromatosis, or NF – and he had many surgeries and successfully beat cancer. I didn’t mind at all. I was more worried about finding someone who was compatible emotionally than whether he could chase me across a field.

The Gambler and I started trading emails, and then chatted on the phone. He decided he didn’t want to waste any time meeting me, so he talked me into bringing my friends who were visiting from England up to the interactive zoo in the extreme northwest of Phoenix. This was also in July in the dead heat of summer. So picture this: my cold-weather friends are tagging along with me in 115 degree (F) heat to maybe pet a giraffe and meet this stranger.

The Gambler was very friendly and used to talking to people he didn’t know well. As it turns out, he was the NFF (Neurofibromatosis Foundation) ambassador for the region, and had traveled a few times over to Europe as well. So my friends thought he was friendly and seemed a decent sort.

The Gambler and I had our first relationship test very early, at about the two-week mark. Neurofibromatosis causes tumors to grow on the ends of nerves, so he had had many, many surgeries at that point to cut the tumors off of the nerves. The tumors can be benign or cancerous. This round of surgery, however, resulted in about 15 benign tumors being removed in both forearms.

I was in the waiting room during the surgery. I helped him get dressed and also with wrapping up his surgical sites so he could bathe. I scrubbed his back. We hadn’t even been intimate at that point, but as a nurse, you are not supposed to be checking out someone’s junk, so I did my best to avert my eyes.

Because I immediately started spending a lot of time with him, there were things I learned that may have not come up for a few months in a relationship that progresses a lot slower. The first is that he was hooked on gambling. This was back in the day when you could play online poker and bet real money. It was how he brought in extra income to supplement his disability pay. The second is that he was a sports whore. He actually rigged 4 TVs and 2 computers so he could simultaneously watch multiple games – basketball was his favorite. The third is that The Gambler’s family was very, very dysfunctional. His father was this giant of a man who drank all day and all night and beat his mother. They lived in a subdivision for retirees and owned a golf cart, and his dad would get fall-down drunk, take the family dog and go for a ride. He had already killed two family dogs on separate occasions from turning the cart over. His mother always tried to not make her husband mad. They kept getting more dogs.

Obviously this family dynamic greatly flavored how The Gambler interacted with me. He would fight to the death to get his way, whether it was where to eat or how to spend our free time. He would bully me first, then he would bargain. The Gambler would tell me that I had to do what he wanted to do because he had NF; if that didn’t work, he would tell me he would make it up to me later. All of our timelines revolved around sports schedules and online poker tournaments.

I learned a lot about the NFF and about rare disease in general. Networking with other people, grant writing and summer camps were all foreign concepts to me, but after driving him to a few locations, I started connecting with the value. The Gambler’s cause became my cause, at least in becoming more aware of the disease and the many manifestations. I know of two celebrities who (probably) have it and that’s the first thing that pops into mind when I see them – then I spend most of a movie looking for the signs, now that I know how to spot them.

The Gambler begged me to go shopping with him for clothes in anticipation for his next European trip for the NFF. He had been wearing size XXL, but really, his body was more like M. I talked him into a compromise so that his pants and jumpers weren’t dragging on the ground.

When he returned he told me that all of his friends made fun of him because his clothes fit, so what I made him buy was embarrassing and he was never going to take my advice again.

I didn’t feel like I was in a loving relationship at all. I called The Gambler to end it, and of course he tried to bully me into staying with him, then tried bargaining. He told me we could break up but that we should still go on our Las Vegas trip that we had planned. I kept telling him that I wasn’t interested in acting like a couple if we were no longer together. Finally I set a date and time for us to meet so I could get my belongings back (I had lent him an air mattress for a guest, plus various other items like sheets and towels). The Gambler rescheduled the meetup at the last minute a total of four times. Each time I had driven in rush hour traffic an hour each way. The fifth time he didn’t call and didn’t show, so I sent him an email saying he could keep everything because it wasn’t worth me chasing all over the city. Oh, but he tried to get me to come back to him, calling me constantly.

I kept the emails. I keep everything! This was our exchange:

ME: You and I are no longer dating.  This means that we won’t be going to Vegas together.  My decision to not be in a relationship with you is NOT your queue to follow in your parents’ footsteps and alternately bargain with and bully me into changing my mind.  The fact that you are not accepting of my reasons and choose to completely ignore them prompts me to follow my instincts and say that we should NOT meet up.

HIM:  you are sooooooooooooooo wrong about everything

what do my parents have to do with this anyway. you should not even mention them

bullying you into being with me  oh come on. you just missed out on the greatest guy in the world. you will regret this. i already regret opening up to you and sharing things about myself that only very few have ever known and will know for that matter. as from a famous movie wasting hugs and kisses on you too, when in the end it ment nothing to you. you have only just begun to see an ounce of me. as for your safety lol come on there is not a mean bone in my body. you hurt yourself more by not being with me. i am not like your other boy friends and i am a lot smarter and mean when it would come down to things like that. but truth of the matter is by doing something to you or your prized stuff would just bring me down to your level, and that surely is a place i don’t want to be. i rather have cancer again rather than be down there!
when i get home we should have dinner and at least be friends. we have tickets to use anyhow. i thought you should know to i have already taken 5 lessons in dancing to surprise you (even before marcos) k. just slipped up the surprise, and i like it so i am sure we are going to running into each other anyway at whatever dance events that i might like to go to.

i am not going to hurt you or your stuff. again like i said it would just bring me down to your level and that’s a place i don’t want to be because from all this and looking back on it i can tell already that’s a place i don’t want to be. but when we were together i would have gone there for you in heart beat. i am sure the person your with now would appreciate being told now if you are going to hurt them in the end. i also can assure they wont be half of what i am.

i hope in the future when,who,what (ever) you decide to be with, you don’t hurt them as much as me because it will come back to you i will assure  you. if i do see you with some one i will pray that you don’t hurt them. then again maybe it will be your turn whether or not they want to be with you.

hope ur new job is going well and hope all is well for you
hope your health is fine too

best wishes and will talk to you soon

ME: Read your words.  Maybe it will take a few years for what I am trying to explain to you to sink in, but I’m going to try one more time.

I mention your parents because your dad drinks, beats your mom, begs her to come back and says he will quit drinking/beating her, etc., and she takes him back.

If you go back and read your words to me, you tell me that you hope that I get hurt, that I’m the lowest of the low and you would rather have cancer again than to be on the same level as me.  THAT’S THE BULLYING PART.   Then immediately after that you say let’s be friends, and no one is going to treat me as well as you do, and you would have done anything for me.  THAT’S THE BARGAINING PART.  You’ve watched this cycle with your parents happen over and over and somehow you have come to the conclusion that this is acceptable behavior. I, on the other hand, do not allow my friends to say horrible things to me and then try to win me back.

And what have I done to be the scum of the earth? I’ve acknowledged that I honestly couldn’t live with our differences and decided to end the relationship. I didn’t stay to hope that things would change.  I didn’t stay to make your life and mine miserable by fighting with you or resenting you for things that I ultimately couldn’t tolerate.  Instead of sitting back and saying “I don’t understand, but I respect your feelings”, you have discounted everything I’ve tried to say and have said some very nasty things besides.

I’m tired of fighting to be heard, which I’ve had to do throughout our time together.  I still believe you have a bright future and I wish you a happy life, but I will not be a part of it.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Three years later, he sent me a friend request on Facebook (I declined).

I snooped around and discovered that he was engaged to a psychology student. I figured either she wanted a project or she was fucked up herself.

In 2012, The Gambler succumbed to cancer. I have no idea if he married that young woman.

The moral of the story? We are, after all, humans first, and NOT just our diseases. I don’t have to stay with someone who doesn’t treat me well, and neither do you. And just because a person has a disease does not mean that he or she cannot do the work to learn to be a better person and break some bad familial cycles.

 

 

 

Hope for the Hopeless

Posted on by akiwifreund

I had a date yesterday.

We met on OKCupid. He complained that women weren’t responding to his attempts to start conversations. I complained that men were opening with sexual demands. I’ll call him Nashville, since he is from Tennessee and still has quite a pronounced twang to his speech (which I think is adorable).

First we were chatting through messages on OKCupid. Then we graduated to texting on our phones. Though I haven’t asked him, he must have wondered if I was being flaky because I didn’t start texting right away, but I was worn out from a couple of doctor appointments. Then we graduated to actually talking on the phone; the first time we talked we were on for 3.5 hours, then we got on later in the evening and chatted for another 3.5 hours. Then we made a date.

It was just supposed to be a lunch date, and really just a coffee date, no food involved. I picked a spot two blocks from my apartment. We walked from my place, and luckily I didn’t end up getting the droopy face by the time we got back to my flat. Nashville asked if I had any plans for the remainder of the day, and if not, would I like to do dinner as well? I was totally game since we seemed to be getting on so well. We got comfortable in my little shoe box flat – he on the couch and I laying flat on my bed – and we spent the afternoon watching music videos from the ’80’s. Wham!, David Bowie, Scorpions, Psychedelic Furs and Def Leppard all got heavy play.

Nashville and I bundled back up and walked two blocks to a pizza place where we had the most flavorful pie we agreed we’ve had in a long time. Then we went back to my little flat and made out for about an hour. Nashville and I had a very frank conversation about how neither one of us wanted to immediately jump into having sex because we both had a history of picking partners who were a poor match for our values and lifestyles. He also asked if he could see me with my wig off, but immediately my sphincter tightened up and I asked if we could wait for a later date (it’s like being doused with cold water from what I understand, seeing me like that). I wanted to hang onto some of the attraction in case Nashville decided he couldn’t handle my baldness after all because I don’t want every dating experience to be colored by my need for wigs.

When it was time for him to leave, Nashville and I discussed his work schedule and agreed that we both wanted to see the other person again as soon as we could figure out a time, which will be next week.

I’m realistic about my challenges. He is getting a puppy on December 27th – something he already planned and paid for – but he knows I’m deathly allergic. Nashville also voiced concern about having to commute to my place and the fact that I’m not able to share in the burden of driving back and forth. He lives about 50 minutes north of me. Driving that in winter weather will probably stretch that to more like 90 minutes. But we also have some things going for us, including our age and desire to have a mutually respectful relationship, and neither of us has children. Nashville also doesn’t mind that I swear like a truck driver and it seems he has been raised right – he sees women as his equal, not princesses on pedestals and not second-class citizens either.

We traded texts this morning. Nashville said, “I really like you.” I wrote back, “I really like you too.” I meant it, too. I said it without hesitation and reservation.

To Date or Not To Date, That Is the Question

Posted on by akiwifreund

I hear this sentiment often from fellow “spoonies”: They have given up on dating. They enjoy my stories (thanks, I try!), but they are not putting themselves out there in the dating pool. And why should they? It’s tough. You’re naked and vulnerable and your waves of pain crash into your body so that you can barely stay afloat. You get tired sometimes – exhausted, really – of paddling just to keep your head above water.

But to borrow from Mindy Kaling’s new book Why Not Me?, all I can say is, why not me?

This song from Andrew McMahon reminds me of my teenage years. I didn’t actually go on my first date until a week before I graduated high school, when I was already 18. I was a late bloomer. But I felt free, and I couldn’t wait to live my life and choose my own adventure.

When I finally did get into dating, it was just how I imagined it would be. And by “it,” I really mean the men. The kissing, the making out, the talking about nothing and everything, felt just like I thought it would. I felt passion and I felt heartbreak. I felt excitement. Sometimes I felt like I was on fire.

It has been a very long time – possibly a decade, if I think about it – since I have had a love who freely returned love to me and wasn’t afraid to say it. Though this rare disease has eaten away all of my supposed “good years,” when I am finally relaxed and confident in my own body, I’m not ready to give up. I still think I can have the same feelings I did at 18, even if I can no longer stay out till the wee hours of the morning with groups of people I’ve just met, and then crash on a random couch or floor or bed and trade secrets with a man who is enchanted with my eyes and just wants to hold me and see a little of my soul.

So, man whom I don’t know yet, I’ll meet you at the high dive. Take the leap with me. I promise that I’m worth it.

 

Caught Between a Rock and a Short Bus

Posted on by akiwifreund

The problem with losing every hair on your body, or very nearly (because my big toes are always the last to shed), is that you have to find a way to define your facial features but still blend in with the rest of civilization. My eyebrow tattoos were last touched up almost two years ago and were fading and turning a pinkish hue of tan, prompting me to color over them with a combination of pencil and powder. This is not a durable solution, though. I still have really oily skin like a teenager and usually within an hour, if I go to push my wig bangs out of my eyes, I end up schmearing my eyebrows in the process, so I look like a crazed devil.

It took me a while to find a permanent makeup artist in the St. Paul/Minneapolis area – first because there don’t seem to be many at all, which I blame on everyone being a tree hugger and shouting from the rooftops how “natural” they are; second, because I don’t want to get just anyone to ink my face. I finally found someone who seemed to use the methods that I was familiar with to give me the most natural-looking brows possible, who also has a decade of experience under her belt.

The ride out there via Metro Mobility (http://www.metrotransit.org/metro-mobility if you’re curious) was pretty uneventful despite the dispatch center’s computers being down – everyone just made do. My driver was on time and there was only one other lady on the bus. The ride back, however, was a little more interesting.

The woman who was our driver for the trip back was very, very nice and good-natured. Unfortunately, I realized that she was used to a certain clientele because she was talking to me as if I was deaf instead of mostly blind. She was shouting, actually, and using small words. I was only the second rider on and she had to pick up four more people before she could start dropping us off. For most of the ride I was the only female on the bus. My trip lasted almost two hours.

By the time it was my turn to get dropped off, I was mostly blind. The last passenger we picked up was an elderly lady who seemed pleasant enough when she boarded, but when the driver went to escort her to her seat and strap her in, the woman refused to sit down. I could immediately feel the tension ripple through all of us. We had been on for quite a while, someone in the group wasn’t really big on bathing and we were in that odd space of being too hot or too cold on a winter day trapped in our layers of clothes and dependent upon the driver to run the bus’s heater. We were all individually and collectively ready to pounce on the woman if she didn’t cooperate. Luckily we didn’t have to, the driver distracted her by saying she was carrying a lovely bag; the woman was still confused by the seat belt the driver was hooking up for her (“What in the world are you doing??”). So when the driver was required to escort me to my front door, she just kinda did an “Okayareyougood?Ineedtogoincaseshedecidestoescape.”

I discovered that while I was out getting my eyebrows put back on my face that the financial coordinator from Johns Hopkins had called to tell me that medical assistance didn’t have any record of my request to be seen at JH. Since I had had four separate conversations with the company in charge of my Medicaid and they had actually called the PCP who was supposed to submit the request, I knew that was not correct. I spent another hour on the phone trying to find out who had ignored the notes and faxes on my file that I had sent in myself; I had to leave another message for the financial coordinator to ask her to try again. I really don’t want to piss her off because she is the first person I’ll deal with at Johns Hopkins, so what she does or doesn’t do is going to greatly influence my time there.

The eyebrows, the special request for medical assistance, the stuff that fills my days now instead of a job and trying to plan my next social event, is not anything that normal people can relate to. How can I explain it? I can’t even summarize it all in a sentence or two.

I also had messages waiting for me from two men – one from OKCupid, and one from Match. They are actually both ten years younger than me and seem to be very physically active. I’ve traded messages with them before so I have a somewhat superficial handle on their personalities. I instantly developed anxiety when I saw their messages. One made it very clear to me that he is a fair weather friend; I told him that I thought he would be a fun person to know, but he would become bored with me because I can’t go out and do things like he does. He responded by saying that I should contact him when I’m “better.” Well, there were only about two weeks between his last message and today’s, so this just proves to me that he thinks I’ve got the equivalent of a cold. The other one suggested meeting up in our last exchange. I told him that it had to be in my neighborhood and within walking distance for me, and then he didn’t respond for a little over a week. Today he indicated I should call/text so we can meet up. Does that mean he’s okay with my circumstances, or that he’s hoping that it’s not as bad as I am saying? I’m trying not to let my self-doubt rule, but now I’m fighting the urge to crawl under my blankets and overdose on emo music.

How do I explain having to use the short bus? And dammit, now I have to wait another week to even try to go on a fly-by date with the second guy because my tattoos need time to heal. Right now they look like two greasy, dark, flat caterpillars have been smashed on my forehead because I have to keep them moist with ointment. If I keep throwing these obstacles at him, am I driving away a good date?

Tonight’s music selection reminds me of Heath Ledger every time I hear it (a la 10 “Things I Hate About You”). It makes me sad because I remember thinking that when I saw him in it, I was convinced he was very quickly going to become a star and would be easily recognized – and he did.

 

It’s That Time Again

Posted on by akiwifreund

I’m not talking about Daylight Savings Time (I really think that should be done away with). I’m not talking about burning a yule log and sipping a hot toddy. I’m talking about putting on the most ridiculous paper “gown” and having my girl parts checked.

Five years ago this month I made the best decision I ever could have made and that was to push for a hysterectomy. I had had many, many problems since the age of 19, including some fast-growing fibroids that had taken over my uterus and prompted a quickie biopsy (without any anesthesia or numbing). I remember the doctor coaching me through the pain of that biopsy and at one point saying, “You’re doing good, we’re halfway done.” And like Satan’s wife, a deep, hideous voice came out of my mouth that said, “Only HALFWAY??” By the end of 2010, if I was lucky I had a whole week off every month from bleeding, rather than the reverse being true. So at age 36, I kissed my uterus goodbye – or rather, I gave it a good shove and told it to kiss my ass.

Thank goodness I don’t have to worry about birth control or how to control a flow. But I still worry about diseases, so I requested a full workup from my doctor – peeing in a cup, scraping the “pouch” that was left behind where the cervix used to be, and a couple of vials of blood took care of all of the testing. The person I saw today was new to me, so it was kind of odd that I had to convince her to check me for everything, as if she was thinking I was too old, too disabled or too nice to have had multiple partners – or all of the above. What I didn’t say was, “Yes, I’m still sexually active even though I look like Quasimodo right now. You’d be surprised what guys will overlook with the promise of getting a piece of ass.” A couple of times she paused as if she was waiting for a number. I finally said, “Look, I’ve never been married, and I’ve been single a lot, so yeah, test for everything.” I don’t like to leave anything to chance.

Then we had a conversation about the hair “down there.” She wants all ladies to go back to the ’80’s, when porn didn’t dictate the majority of women under a certain age shaving. She was singing the praises of how the hair kept pollutants out when women weren’t punishing themselves for being adults rather than little girls. I reminded her that I really didn’t grow hair ANYWHERE, and she said that she didn’t want me to get rid of anything – that I should try to keep whatever I could get. I snicker now because the next logical progression if I made that choice would be explaining crop circles in my kitty hair when I’m naked with my next partner. Alopecia makes hair fall out in perfectly round circles; when you have universalis, most or all of the circles have melded into one universal loss of hair everywhere, but I sometimes have some patches. If you have ever thought to yourself, “That dude should just give up trying to grow a beard because it ain’t happening,” that would apply to my situation too.

Today I remembered a doctor’s visit a few months ago when I was waiting in line to check out. There was a kid in his early 20’s who didn’t have much experience with going to the doctor or the intricacies of dealing with insurance. He was bounced back and forth between the front desk and the back one because he really just wanted an appointment for STD testing, but it wasn’t included in his “free” yearly exam as he had hoped; he finally left the office without getting anything done. I could tell he was worried about paying his co-pay and co-insurance. I wanted to step up and offer to pay for it, but I would have violated what little privacy he tried to keep – I didn’t want him to know I heard everything, but I also didn’t want him to walk away without getting tested. In the end I had to let him go. I sure hope he was able to take care of it sooner rather than later.

Today is World AIDS Day. The prognosis has changed greatly since the early ’80s thanks to advancements in medicine, but I’m more than happy to get tested regularly so I don’t end up being part of that demographic. I’ve got enough going on as is.