disability

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.

Good Thing I Had Chocolate Handy

Posted on by akiwifreund

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

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

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

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

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

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

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

Duck – Here Comes Another Turkey!

Posted on by akiwifreund

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

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

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

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

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

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

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

 

Showing Up is Half the Battle

Posted on by akiwifreund

Update: This morning, November 23rd, he sent me a text message saying that he was sorry because he fell asleep, and then he went to church and turned off his phone. He offered to show me the logs “where it proved he was in church.” I told him that all he had to do was text or call and tell me it wasn’t going to work out, not wait two days, and that it was time to live an authentic life and stop making excuses. Seriously, I am so done raising men.

_____________________________________________________

Yesterday was a good day for me, health-wise. I had vertigo and fatigue but not a facial droop. I thought I was undeniably lucky – because a friend from the past had offered to pick me up and take me out to karaoke, and rather than having my face paralyze by the time we arrived, there was a good chance that I would be able to be upright for a few hours.

He and I had talked about my limitations and what to expect to happen, which is to plan for the worst and hope for the best. All week he was telling me how excited he was to see me after all of this time. Then he started talking about how it has been a long time (in the neighborhood of 15 months) since he had dated, or been close to someone physically. Because we are so different on the religious front, I warned him that we wouldn’t be a good match because church is such a big portion of his life and I am 1,000% a non-believer.

I texted him Saturday afternoon to find out what time he was picking me up so I could plan accordingly. He told me that he would be by at 6 pm. Then he started texting that he was nervous about his teeth – he knows that I like it when men take care of their choppers. (I didn’t tell him that it’s because I had had boyfriends who had let their teeth rot and it was horrible kissing them.) I told him I knew it was expensive to get them fixed and that I was aware that he was making an effort, I just didn’t want him to have to get dentures in a few years at such a young age. I also told him that I had my own insecurities, but we should both try to work through them and enjoy our time out and catching up.

At 6 pm, he didn’t show – but he sent a text saying it had been a hell of a day and his roommates were fighting. At 7:30 he was still a no-show, so I texted him to ask if he was still on his way over or if we needed to figure out a different day.

Crickets. Nothing. Absolutely nothing, not even this morning.

There weren’t any stabbings or shootings in his area. I know this because I checked. With this in mind, there is no great mystery surrounding why he is still single. He has my cell phone number, my email and for Pete’s sake, my street address. I’m really struggling to find a place in my heart that will allow him the benefit of the doubt if he does come back to me, sniveling about something or other happening that prevented him from telling me what the deal was. It’s the kind of behavior that I would expect from a stranger but not at all what I want in a friend.

And if I sometimes sound bitter or disillusioned through the course of all of these blog posts, it’s because I am. Nearly every man in my life has let me down, with rare some exceptions. But rather than allowing this particular night of waiting needlessly to get my blood pressure up, I’m calm, as if he has never existed in the first place. As the daughter of an alcoholic, disassociation comes easily to me. But men should know that every time they do something like this, they break women’s hearts, even if it’s just a tiny bit; it all adds up.

While writing these few paragraphs, one of my favorite Anberlin songs came up on my streaming music. I’m sad they broke up in 2014 because I’ll never have the chance to see them live, but thank goodness for the permanency of YouTube.

The Dog Days of Dating

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

The quest continues!

 

 

You Get the Seal!

Posted on by akiwifreund

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.