unmarried

Careful, Your Old Is Showing

Posted on by akiwifreund

This afternoon I had the opportunity to spend time with my cousin’s daughter. We connected at my uncle’s funeral; the last time I saw her was when she was 3 or 4, and now she’s 24.

Over and over, this meme flashed in my head:
40Now

Here are some of the milestones I hit by the age of 24:
– Moved out at age 16
– Worked two jobs since age 18- Moved to Michigan, New Mexico, Kentucky and Ohio
– Road tripped around the U.S.
– Lived with my first boyfriend

I found myself saying those dreaded words, “When I was your age…” and I cringed every time.

In contrast, this young lady has been living with relatives and doesn’t work or currently attend school. We spoke about what she envisioned for her future, which included dreams of working at a bookstore or a movie theater. I prodded her into thinking bigger – after all, bookstores are becoming obsolete, and movie theater jobs are really more for high schoolers. She admitted that what she really wanted to do was travel the world and learn as much as she can. Thank goodness! That I can work with. I told her about how The Professor works at a law library on a college campus, and we agreed that a library would be a perfect environment for her. She would be surrounded by academics and wouldn’t be required to ask patrons if they would like to upsize their sippy cups for another $0.50.

Another area that I thought would be great for her (before she and I even had a chance to sit down and talk, but she brought up this afternoon) is the tech field. There is still a huge disparity of ratio of male vs. female tech employees and it’s a field that does not often require customer service interaction with the exception of level one support. There are so, so many degrees and specialties in the tech area that she could go into that really, she just needs to pick one and it should not be difficult to make a living.

So again, here is the whole closing a door/opening a window business being demonstrated in real life: I can’t work, but that doesn’t mean I have completely lost my value in this universe. I think I can successfully mentor this young woman and hopefully send her off into the world with some practical skills so she can do the things she thought were only a dream previously.

My Adolescent Heart Is Cured

Posted on by akiwifreund

Right at the cusp of my childhood and the beginning of the time when I became self-conscious and awkward, we moved from a large metropolitan area with a population of 1.5 million people to a town of 300. My bus ride to school was long and filled with strange faces; it took an hour to get to a town of 700, where people rarely moved to or away from and were all largely related. In fact, I had a couple of classmates who were the offspring of first cousins, sentenced to lifelong special ed classes thanks to genes that were far too similar to have been considered safe to pair up.

I was bullied terribly my first year at the farm town school. It really wasn’t until the next year, 6th grade for me, that I started making friends. I also became a little more comfortable expressing myself – including being vocal about crushes on boys. One boy in particular held my attention for ten whole years. I’ll nickname him C. C. Deville, because he played guitar and wanted to be a rock star just like the guys in Poison and Motley Crue.

I made Valentine’s Day cards for everyone in my class. However, for C. C.’s card, I did exactly what I read about in a book, which was write a little poem without signing it:
“You can’t be my Valentine, you look too much like Frankenstein!”
He was intrigued! It worked, just like in the book! Except when he thought another girl wrote it for him, and he started making eyes at her. That wasn’t supposed to happen.

Two years later a friend from Minneapolis stayed with me for a couple of days and came with me to school. C. C. Deville was doing everything he could to charm her, and she flirted right back, even though she knew I liked him. She liked him too and thought he was very cute. Later that year he got suspended for smoking pot under the bleachers in the gym, so obviously he was a little bit of a bad boy. No wonder all of the ladies were flocking to him like bees to honey.

When I was in 9th grade, I tried out for and made the cheerleading squad for boys’ JV basketball…which meant that I would be cheering for HIM. Oh, sure, there were a few other boys who were cute too. But there was one time on an away game that I was floating on cloud nine because we had to drive two hours through a snow storm on the bus and I was sitting in front of him, and he let me borrow his leather jacket to sleep on it. I could smell his cologne. I thought maybe he might eventually warm up to me since he lent me this article of clothing. Instead, he started talking to one of the other girls on my squad and eventually started dating her. I had confessed to her that I had had a long-term crush on him and I’m pretty sure she spilled the beans to him if he hadn’t already figured out that I had been throwing myself at him for years at that point.

(2 years break to attend arts high school.)
(2 years pass while I move back and forth between Michigan and Minnesota.)

When I was 20, I discovered that a former classmate was living in my apartment complex. She said, “Oh, did you know that C. C. Deville also lives here?” I just about shit my pants. It turned out that he lived above me. Shortly after that I ran into him, said hi, exchanged pleasantries, talked him into putting my new license plate on my car for me. (“Oh, C. C., you’re so manly, thank you!” Okay, no, I didn’t say that, not really.) Sadly, I didn’t see him after his dad and my aunt died and I left on my big trip around the U.S. to find a new place to live.

Facebook has directed us back into each others’ lives many years later. However, he posts maybe 6 times a year, and my average is maybe 6 times a day – mostly goofy stuff, sometimes political stuff, and occasionally medical updates. As far as I can tell he hasn’t moved much, he doesn’t have children, may or may not play in a cover band, may or may not have a girlfriend, and may or may not work in a bank. In other words, we are really only peripheral observers. All that we have in common is that we have been in the same place at the same time in the distant past.

Today, for instance, he posted something on Facebook that really weirded me out – mainly because it didn’t seem like he wrote it (though he was taking credit for it, but its rhythm and spelling and punctuation didn’t match the rest of his writing in other posts), and because it’s some sort of rambling message about “God.”

It starts out nice enough: “Most of the time, our biggest obstacle is us. Maybe we’ve stopped dreaming.” True enough. Then: “Or, maybe we’re refusing to share our dreams out loud because we fear that God’s reputation might be at stake. God’s reputation is fine. It’s our reputation as leaders that we fear taking a hit. The dreams in our hearts were planted by God who loves us!”

“God’s reputation”? That, my friends, is anthropomorphism – assigning human qualities to non-human entities.

He goes on: “The day we stop following the dreams God has put in us is the day we allow ourselves to go into cruise control. When our biggest desire starts to shift from seeing God do great things to making everyone as comfortable as possible, we know we’re losing sight of how big God is.

“Fight the urge to maintain the status quo. Instead, do everything possible to advance the cause God placed in your heart. Stay focused on what could be rather than what has been.”

This is what has cured my heart once and for all: I feel like C. C. Deville deliberately lived a small life, looking for hero worship in a small town, and is now turning to “God” to try to make his life feel expansive and limitless. A classmate said that she was surprised at his preacher-like post (hell, I was too), but he replied that he wasn’t trying to be a preacher, he was just coming to his senses. I think it’s more like he realized that he’s middle aged and he hasn’t done anything he said he said he was going to do when he first reached adulthood.

For the longest time I felt inadequate and undesirable while he chose girls around me. Now I feel as if I have run circles around him with my life experiences and we would have nothing to talk about.

 

Pat, I’d Like to Solve the Puzzle — Patient Worthy

Posted on by akiwifreund

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m not going to go into detail; I feel like it’s not my story to tell. I had as much pep as a wrung-out washcloth. I…

via Pat, I’d Like to Solve the Puzzle — Patient Worthy

Spare Some Change?

Posted on by akiwifreund

This morning started out with crazy pain. I’ve had 18 years of fibromyalgia pain, and I have to say, that’s child’s play compared to what I have going on in my abdomen. I had an appointment with a new pain management doctor this morning, so the crazy pain at least had good timing. I had to explain all over again why it’s happening (I’m allergic to the drainage catheter of my shunt, which goes down to and loops around in my abdomen), and endure the doctor poking and prodding my stomach and bending and lifting my legs. Big, fat tears were leaking out of my eyes. I begged for a change in meds.

What I have to do to transition from one medication to another is slowly decrease one med over the course of two weeks, and then begin a new medication and work up to the full dosage over four weeks’ time, so I have to commit six weeks to focusing on getting this right.

Really, it’s not different from anything that’s a change. I need to also change my food intake. No dairy, gluten, soy or sugar means some big adjustments in what I eat and when. I really have to plan and think out the simplest things, because I’m not going to be able to grab a hunk of cheese as a snack and instead I have to have something readily available that falls within the much smaller parameters that I’m stuck with.

Kira’s blog on change is so timely for me. She talks about the process we logically and methodically use to incorporate the change into our lives, and what makes change successful versus a total and utter flop.

I wish someone could diagram for me a plan to successfully avoid chocolate.

http://www.kiralynne.com/#!Change-is-Challenging/caj6/56dc66a90cf22ade6d35e40e

Now You See Me

Posted on by akiwifreund

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

When Life Hands You Lemons

Posted on by akiwifreund

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend

Speak Easy

Posted on by akiwifreund

Last week Friday, February 5th, Nikki (http://ilivebreathe.com/) and I had our first chat on Blab. The agenda was to talk about toxic people, the diverse challenges we face when interacting with them, and when to let them go. The recording went much longer than we planned at 1 hour 45 minutes, but if you are interested, here is a link to the show:

https://blab.im/82740adeac204a028576bc288ef25703

We decided to come back this week with another show, and this time the topic is self-care. What do you do to bring yourself back from the pit of despair? Do you allow yourself to laugh or cry? If you have seen the movie “Amelie” (French with subtitles), you know that each character is assigned a list of things that seems like a very simple pleasure. Amelie’s father likes to take all of his tools out of the toolbox, clean out the box, and very carefully put the tools back in. A patron at the eatery carries a mini tape recorder with him everywhere, and then records unusual laughs. Amelie likes to stick her hands into barrels of dried peas.

What do you do to make yourself feel better about your circumstances?

Join us on Blab for a discussion on self-care; we’ll start at 6 pm EST/3 pm PST Friday, February 12th.

https://blab.im/nikkiseefeldt-sickadilly-chat-2-self-care-strategies-rare-dis-disability-chronic-illness

Seek And Ye Shall Find

Posted on by akiwifreund

Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…

Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.

Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)

*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India

Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.

In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.

Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.

Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).

I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.

To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.

Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.

Movin’ On Up!

Posted on by akiwifreund

I’ve been added to this network for bloggers who are focused on chronic illness. I am hoping to continue entertaining everyone with my stories about doctors, dating and down time (because I’m in bed for at least 22 hours a day). Occasionally you may see product reviews or ads, but please know it’s still me and my voice and my forthrightness about what is happening in my world.

Many thanks to the creators and curators of Chronic Illness Bloggers for directing traffic and addressing specific needs, and allowing me to take part in it.

Here is the home page:  http://chronicillnessbloggers.com/

Where Have All The Good Men Gone?

Posted on by akiwifreund

Yesterday I posted an article on Twitter from The Good Men Project site.

http://goodmenproject.com/featured-content/bots-wedding-feminism-marriage-cost-jrmk/

With the post, I said, “If men are butt hurt by women having careers and their own income, they’re not worth marrying.” Then I included the hashtag #feminism.

I always, always hesitate to include this hashtag. It’s not because I don’t believe in equal rights – I do – but some days I’m just not up to being attacked. There are a multitude of men on Twitter who create mask accounts and watch hashtags like “feminism” because they immediately jump on that thread of conversation to argue with women and tell us we don’t know what we’re talking about, and that we’re stupid, and that we don’t know how to read, and that we are emotional, and that we are fat, and that we just need a good dick to stick it to us.

The first kid that jumped in wasn’t using very strong language. In fact, he was a lot less forceful than the others, but I am thinking this is because of his age; as he gets older and continues to buy into this thought process that men are the “victims” of feminism – rather than understanding that a more equalized and emotionally connected society brings happiness and contentment to most rather than just a select few – he will become more and more angry and disillusioned about his life. When I remarked upon the fact that the ex Dumb and Angry wanted to shoot me because he felt threatened by me earning my own income (that was behind the fight I had to call the cops on), at first the kid said he didn’t know if that was true, but if it was, he wouldn’t continue discussing this topic because I would only be able to see my own experience. I keep saying “kid” because I’m guessing this one can’t be a day over 19. His next argument was that his dad wanted to be the breadwinner and his mom wanted to stay at home, though she ended up having to work. Did I deny those people exist? On the contrary, I absolutely know they do, and told him he can still find them in the 1950’s household fetish group on FetLife. I’m not speaking for them. I’m speaking directly about the men who feel threatened about women earning their own wages.

Another guy jumped in. I’m not sure if his picture was actually of him, but I’m guessing him to be about 27. His first statement was something like, “What if men won’t marry because when they divorce, the ex gets custody?” My reply was, “What if you’re assuming the sole purpose everyone gets married is to procreate and overpopulate the earth?” Then he started MANSPLAINING. He was alternately condescending and insulting. I could tell that he’s been hating on women for a very long time and participating in these “manosphere” groups and picking up their vocabulary. At one point he told me I must be “thick” if I didn’t understand what he was saying. I had restated his argument as “Marriage = children = divorce = custody.” He also pulled up some statistics saying that men work harder and longer than women (not taking into account, of course, that the imaginary children he was so worried about would be taken care of first by his imaginary wife – meaning, if the imaginary children got sick at school, the imaginary wife is traditionally the first one called if she can be reached to pick them up from school, therefore she misses work. We were also missing a chart that allotted time for each spouse for household chores like laundry, cleaning and yard work. Guys, the work doesn’t end when you leave your job). Then he started using the ultimate phrase that is the favorite of all white men from ages 18-60, and that is “strawman.” It didn’t matter what I said, he made sure that became a regular part of the exchange. Then he started calling me pet names (adding to the condescension), so of course, I used them right back. At one point I said something like, “Oh, Bunny, it will be okay. I’m sure some women will worship you – or at least you will tell them they do.”

A third man jumped in. My guess is that he is, again, white and probably around age 47. He said he would never ask “her” because if they got divorced, she would get custody of the kids and he would be ruined financially. He did not use any punctuation. Basically, his argument was the same as the 27-year-old’s: Marriage = children = divorce = custody (with a little child support thrown in). My guess is that he has already procreated with a long-term girlfriend and works at a job that he greatly dislikes; he’s one step away from living in mama’s basement.

A fourth kid (again, maybe 19-22) jumped in and said to me, “You’re a fucking retard.”

A fifth guy cutely said I just needed to get shagged. The 27-year-old agreed, then crowed about how happy he was being a white guy living in Asia (thereby revealing his oh-so-common fetish for Asian women as complacent sexual servants).

So a couple of accounts were reported for being abusive. Keep in mind I didn’t know these guys before they jumped my shit for including the hashtag #feminism. I wasn’t hanging out on the hashtags they use to talk about how stupid women are. They came over to my side to call me an idiot and a retard.

Today a friend sent an article without knowing what had transpired on Twitter. It very well could have been written about these guys. Why it resonates so deeply with me is because it seems to be EVERY man I encounter on OKCupid: not a single one I have interacted with has been interested in a relationship and commitment; rather, they want to fuck as many women as they can, and they are constantly on the lookout for a better choice. It happened most recently with Nashville, and with the guy who is currently separated and probably going to go back to his wife, and with countless others before them. Motherfucking internet.

“The systematic, quantified pursuit of women tends to make men bitter and resentful.”

This statement was written by the author of “The Game” as well as the most recent book, “The Truth: An Uncomfortable Book About Relationships.” He’s a male who has fallen into the trap of fucking around and always looking for the next best thing, never placing any value on the person he is with, and he has fought his way out of that harmful thinking multiple times. There’s a whole subset of vocabulary used in the manosphere. I invite you to read the article below. It’s the most enlightening thing I’ve read in a very long time – mostly because I realize that it’s not my imagination, and that men are actually congregating and deciding to be heartless, nasty, promiscuous, belittling, dissatisfied, condescending, derogatory and abusive. As was pointed out in the article, all of them have missed the conclusion of each book where the writer talks about how all of that behavior is destructive to the man (and women).

As one of the guy’s grandmothers pointed out, “We’re women too.” Women are not anonymous islands; we are just as interconnected as men in our roles in this society. We are mothers, daughters, aunts, granddaughters, friends. Violence carried out on women affects ALL women. It’s not okay to punch your girlfriend and then turn around and kiss your mother.

It’s a long article, but I promise you, it’s absolutely worth the read from beginning to end:

http://nymag.com/thecut/2016/01/jared-rutledge-pickup-artist-c-v-r.html#

As a side note, no one – male or female – joined in this conversation to speak up and say, “Hey, it’s not okay to call her “thick” or a fucking retard or say she just needs some dick.”