disability

Look Me In The Eye

Posted on by akiwifreund

On Friday, I wrapped up (I hope) a series of daily appointments at the University of Minnesota with a visit to an ophthalmologist.

Something happened while I was waiting to be seen. Actually, something was brewing the week before, but I wanted to deny it was happening, or would get worse. I think it has reappeared after more than five years because this is the first time since July 2011 that I have not had any successful shunt surgeries for 8+ months, and my brain/brain stem are getting seriously stressed.

Normally my symptoms resolve and I can open my eyes all the way when I’m laying flat. That’s the result of cerebrospinal fluid moving away from wherever it’s pooling and pressing on the brain stem and the nerve roots leading to my face. However, the tremors do not resolve with laying down. I remember being in an MRI machine in August of 2010 and the techs yelling at me to hold still because they couldn’t get clear pictures of my neck. I had absolutely no control over the tremors. This time around, for about a week I could feel the tremors in my neck when I laid down to sleep at night. I hoped it was the worst they would get.

Unfortunately, I have not been spared. The tremors are exhausting. And it’s bad enough that the world is already swimming around me – but the tremors really scramble my brain. They make my head constantly nod “yes.” I asked the resident doctor examining me for the ophthalmology test to document the tremors, since they started when I was sitting in a waiting area close to the examining room where I would be seen.

The reason why I insisted on seeing the ophthalmologist is that I wanted to have my vision problems documented – and not how they wished I could see, but what I could actually see. It’s going to take 12-15 months for me to get a hearing with a judge for a disability determination; I want to load the judge up with proof.

A tech took me through a ptosis vision field test. In the great scheme of things, it was pretty benign; no one had to stab me with needles or get me to take my clothes off. First they do the test without altering the eye to “see” what I can see. Then after that eye is done, the tech has to tape the eyelid so that at least 20% more of the lid is lifted. Have you seen the “tape game” by Jimmy Fallon? This is what it felt like. For extra special fun, my head was nodding so much that the tech had to grab my head and hold it in place for the test.

 

Talk To Your Doctor About Your GD ED

Posted on by akiwifreund

A week or so ago, when I was being driven to my daily appointment to get the dressing on my wound changed, the cabbie asked me if I was single. He was Somalian and he told me how if I visited his village, I would have many offers of marriage within the first hour. In his culture, it’s important to visit your neighbors and check on them. They value personal bonds. They also obviously have a serious gossip network, which explains why everyone would know I’m single in a very short amount of time. I secretly wondered if I could demand goats as my bride price.

I didn’t ask, but I wondered if he was mistaking me to be about 10 years younger than I am – that happens often. I think that the paralysis of my face actually works like Botox gone bad. I also didn’t tell him that I am not able to have children (thanks to my hysterectomy 5 years ago – BEST DECISION EVER). That aside, I’m already at an age where bearing children would be very risky. I didn’t bring up the fact that I’m also completely bald, as I think that would be the last on a long list of deterrents.

I was hit up by a 24-year-old on OKCupid today asking if 24 was too young. I wrote back that it was. It’s another somewhat terrible reminder that I am middle-aged.

Another reminder that I am middle aged: I date middle-aged men. I seem to have hit the bubble where their penises don’t stay hard or even get hard. We get to the awkward point where they are trying to shake the shit out of their dicks to force the blood to go down there, or they are trying to stuff their very soft unit in me and get pissy if it just flops out.

Then they blame me. I’m “too excited.” I’m “in the wrong position.” My “legs aren’t the right length.”

Physiologically, I am not the problem. I’m 5’5″and not considered short. Even though I had a hysterectomy, I kept my ovaries, which means that my hormones are still coursing through my body – I haven’t gone through “the change” yet. Believe me when I say that I am more than sufficiently able to welcome a foreign object.

What’s the problem with these guys? Well, weight is an issue. I fully acknowledge that I am overweight, and I notice the difference in my ability to perform bedroom gymnastics according to how overweight I am (my weight fluctuates). These guys are sporting the full pregnant belly, though. I imagine a big elastic band resting at their hips, cutting off the blood supply.  They also huff and puff from the effort; I often have to ask if they are getting tired and if they would like to change things up.

One guy was overweight (6’1″ and over 300 lbs) and insulin-dependent. Diabetes affects blood flow greatly – that’s why doctors recommend that diabetics stay away from pedicures. Any tiny nick to the skin could cause a huge wound because a lack of blood flow stymies our body’s repair mechanisms. So, yeah, his penis was definitely having blood flow issues.

I hate the smell of cigarettes and I’m allergic to the smoke, but smoking also affects blood flow to the extremities.

Some men are very accustomed to jacking off to porn. It’s alarming how much they abuse their poor penises. It’s like angry jacking off, or jackrabbit fast. There’s no way my very human body is going to be able to replicate that. It gets to the point where the men only respond to this violent kind of touch. One of my exes was a smoker AND could only do the jackrabbit thing, so when he was ready, I just had to make sure my arms and legs didn’t touch him so he could pound away. You know in movies when EMTs or doctors are trying to use the paddles to revive a patient and they yell “Clear!” to make sure no one is touching the patient when the current goes out? That’s pretty much what I had to do for the jackrabbit guy. Clear!

So guys, talk to your doctor about your goddamn erectile dysfunction. You might hear something you don’t want to about lifestyle changes. But if you want to screw like that 24-year-old who wants to bang me, then you might have to make some changes. Hell, the rest of your body may feel better too.

If you’re not willing to put in the work, then learn how to do other things that don’t involve the penis.

Don’t ever, EVER, blame me for your ED.

Me and Alan

Posted on by akiwifreund

This is just a tough week. My health stuff has been forcing me to push everything else aside – because as some of you know, you only have enough energy for one thing each day, and that is if you are lucky.

I had to go into the surgeon’s office today like I have done every single day since last Tuesday to get my wound checked and repacked. I’m actually a “super healer” and for that reason also very rare. My body immediately goes to town on closing up wounds and building scar tissue – collagen – so it’s yelling last call and shutting the doors before all of the riff raff has exited. The downfall to that is that my body trapped bacteria in its rush to seal everything, which is why the doc had to make hamburger out of my ass. This is also the reason why, when my body figures out that it can’t physically break every shunt, it resorts to clogging and strangling the drainage catheter. I don’t make keloids. However, I have a huge wad of scar tissue on the right side of my brain left over from the cisternoperitoneal shunts I had implanted there. If I press on that side of the skull, I move the whole mass and it’s very uncomfortable, as if I am moving strings that are attached on the inside of my scalp that reach down into my brain.

While I was getting ready to go to show my ass yet again, I was catching up on the news, and so saw the announcement that Alan Rickman died from cancer at 69. Like Bowie, he was another Brit with loads of talent, adopted and adored by us fickle Americans across the pond. This seemed like another abrupt loss that we didn’t see coming – I mean, some people shouldn’t ever die, right?

Like a lot of people in the U.S., my big intro to this man was the role of Hans Gruber in “Die Hard.” He was such a good badass. I didn’t want him to be killed off. I wanted him to return for every installment of that franchise.

About seven years later while I was living in Albuquerque, my roommate introduced me to “Truly, Madly, Deeply” via a VHS tape she had in her vast movie collection. It was a role that allowed me to see past his villainous past and embrace his gentler side, and roll around in his deep voice like a dog rejoicing in sunshine and grass. If God actually existed and had pipes, I do believe that we would hear Alan Rickman speaking.

In 2003, I moved to Arizona without knowing a single person, without having a place to live and without having a job. (Things were really different back then, kids!) A few weeks after I landed, “Love Actually” was released to the theaters for the Christmas holiday. I didn’t have anyone to go with, so for the first time in my life I went to a movie by myself. I’m glad I did – I liked the movie enough to buy, which rarely happens. But Alan was part of the ensemble cast. He played well the role of a man who was befuddled by the temptation placed in front of him and who ultimately could not rise above.

I know this makes me an oddball (judging by just how popular the Harry Potter series has been), but I could never get into the Harry Potter movies. So many people are mourning the loss of Professor Snape; I will instead choose to remember Hans, Jamie and Harry.

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

That Girl Is Poison

Posted on by akiwifreund

Recognize this phrase? I have a station set up on my Pandora titled “New Edition,” and since some of the members of the singing group New Edition split off and formed Bel Biv Devoe, the song “Poison” comes up on my play list. Bel Biv Devoe sang about the dangers of getting tangled up with a woman who was bad news; however, it’s not just romantic relationships that suffer when someone is nasty or devious – friends can be poisonous too.

I am eternally grateful to the friends I have made over the years who tolerate my weirdness and bluntness. Without a doubt, I am humbled by the friends who have mopped and sanitized my house when I have returned from the hospital. I am indebted to the people who have shuttled me around to doctor appointments and grocery store runs, and who have replenished my stock of food and supplies. I have tried to be a good friend in return when I have been able to, which admittedly has been very infrequent for the past 5.5 years because I can’t seem to stay well enough to be out of bed for any length of time.

Unfortunately, because I have the reputation of being a good listener and the voice of reason, my bedridden status has trapped me into being something of a therapist for some. One friend helped me get to a doctor’s appointment about five years ago. This woman and I had become friends back in 2006 when I was working a couple of jobs to pay for my second trip to Europe. That one ride of eight miles nearly cost me my sanity.

Because she found out that I was stuck in bed when I called her to help me get to the appointment, I believe she saw it as an opportunity to unload all that was bothering her – after all, I didn’t have anything better to do, right? This friend was going through a nasty divorce. She would call me at all hours nearly every day, crying and asking me what she should do in certain situations. She would never actually take my advice.

Our interactions became more strained. I finally resorted to telling her, “I don’t know what you should do” every time she called with a new crisis. She switched to texting me instead of calling me. I’m not sure if she thought my answer would somehow be different. Just for the record, it wasn’t.

This woman had a good heart, and I did get a ride from her when I needed it most. I just did not think that I was forever obligated to take on the stress of her failing marriage. For that reason, I cut her off completely. Subtlety wasn’t working, and telling her I was exhausted and stressed from fighting to be heard in doctor visits had absolutely no effect. I feel a twinge of sadness when her birthday shows up on my calendar, but I know that if I pick up the phone and wish her a happy birthday, the cycle starts again.

Another woman I became friends with was introduced by a mutual friend. We became acquainted after we spent a holiday together; I brought a movie that she had watched many times in her native country as a young girl, and she translated the film for us as it did not have any subtitles. I’m going to christen her Ms. Lederhosen.

I met Ms. Lederhosen as she was going through a nasty divorce with her second husband. I had suggested we get together for movies or nights out because it seemed like she needed to do things that would distract her from all of the emotionally draining stuff she was going through. Unfortunately, it was all she would talk about. I’m not exaggerating when I say that. I could say something like, “This tomato soup is good.” Ms. Lederhosen would reply by saying, “Oh, R. (her ex) likes soup too. You know, when we were married, he used to make me take care of his daughters, but they were lazy and did not like me. I would tell them to do something and they would go to their dad and he would tell them they didn’t need to do it.” It’s how every conversation would go. Everything tied back to her ex, no matter what I said, no matter what I tried to talk about.

I remember one time we made plans to see a movie. When we picked our seats out and got settled with our beverages and snacks, she started talking about the ex. The lights dimmed and the movie started; Ms. Lederhosen was not letting that stop her. Other patrons in the theater started saying “Shhhh!” loudly, turning towards us. She wouldn’t shut her trap. I told her that we should wait to chat until the movie was done. She kept talking in a loud voice because she had to finish that story. Well, she finally did…and then throughout the movie, she ran a commentary on what was happening on the screen. At that point I made a mental note to never see another movie in the theater with Ms. Lederhosen.

The ex was dragging out the divorce, filing extensions and demanding spousal support. Ms. Lederhosen was constantly calling and texting to rehash what he had done. At one point she asked me to proofread letters and documents for her because they were going to be used in her case. I would always set aside what I was working on and comb through her submissions because I knew how picky judges could be.

Ms. Lederhosen finally decided to pursue her U.S. citizenship. She didn’t have many friends, so she asked me to prepare a letter of good character for her attorney. Again, I set everything aside and whipped together a professional piece to convince the Court that she was a productive member of society.

She didn’t care for her job or boss, so Ms. Lederhosen sent me her resume so I could send it out to my contacts and enter it in my employer’s database. She wanted to respond directly to her ex’s demands through family court but didn’t want to pay her attorney to do it, so I arranged for a friend who was a paralegal in family law to assist her.

Ms. Lederhosen met a man through a woman who facilitated a social group for foreign-language speakers. I had hoped that meeting someone new would calm her down regarding the ex and encourage her to discuss other items of interest, but no. She even told me that her new man was complaining that she was too focused on the ex.

I was able to meet the new boyfriend when Ms. Lederhosen brought him and her little sister over to my house to visit; it was her sister’s first time in the U.S., so I made an effort to speak slowly – her English was good, but there is always a huge adjustment period when anyone is suddenly immersed in a country where the language is not their native tongue. Often Ms. Lederhosen would interrupt to talk about her ex. At one point, her current boyfriend grabbed her face, squeezed her cheeks and said “Stop talking.” She didn’t, of course. Her sister got completely put off and eventually just fell asleep on my couch while the boor hijacked the conversation.

A few months later, I had reached the point of blinding pain with my shunt – I had developed an uncontrollable leak. Ms. Lederhosen had indicated that she was at her boyfriend’s house but that if I needed a ride to the ER, she was more than willing. I took her up on the offer. They didn’t end up keeping me to bring me into surgery as I had hoped, because at that point they wanted to figure out which parts of the shunt I was allergic to, which would take months. They sent me home with big bad painkillers instead.

Facebook can make or break friendships, and in our case, it broke ours. Actually, for me it was the last straw. I had posted a story about a product that was being given to girls in sub-Saharan Africa to allow them to continue safely attending school during the bleeding days of their menstrual cycles. This charity was distributing silicone cups that could be used to collect the fluid for up to 12 hours and then be emptied and washed in private. Well, Ms. Lederhosen did not like that at all.

She hijacked the post by first saying that she would never want to use a product like that and that she was perfectly happy with her birth control pills. I explained that birth control pills were not an option in this region, and that it was a much safer alternative for the girls instead of their normal methods, which included stuffing their bodies with dirty rags, newspapers or mud. Ms. Lederhosen said she asked her boyfriend’s mom, and she agreed that she wouldn’t use a product like that either, and they were stupid for not using birth control pills. I explained that in this region, pills were not readily available or transported easily, and not everyone could or should be on hormones, and that the girls just really wanted to attend school and the cups were a viable option. Then Ms. Lederhosen posted a huge paragraph about how American women are stupid, fat and lazy, and she was able to lose weight by eating organic foods and exercising (which had nothing to do with what was being discussed).

I blocked her on Facebook. It’s no wonder she has few friends! Unfortunately, my phone at the time was not able to block calls or texts, so for two days she sent me all kinds of nasty messages about how she was prettier, smarter, more successful and thinner than me. Ms. Lederhosen told me how I was jealous of her relationship with her boyfriend, and how my college degree was the equivalent of elementary school in her home country. I sent back one message saying I was not interested in competing with her, and her messages just got nastier. She told me how she was a much better friend than me because she drove me to the ER that one time; of course, she conveniently forgot about all of the ways that I tried to help her when she needed it. Finally she stopped and went radio silent.

Two months later I got a card without a return address. I opened it to discover it was a note from Ms. Lederhosen, telling me she missed me as a friend and that we should be friends again. I didn’t have a return address for her and so couldn’t send anything back, and her info had been deleted from my phone long before that. A week later I got a text message from her saying that she didn’t hate me anymore and that we should be friends. I again told her that I did not want to compete with her, and that she said horrible things that made it difficult for me to want to be friends with her. Well, that just set her off again – 16 messages of vile, nasty words.

Around Thanksgiving of 2015, I received another text from her. Ms. Lederhosen said that she missed me and that I probably still had some bad feelings, but she was there for me if I needed her. The response that I didn’t send but really wanted to? No fucking way.

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