anxiety

Life Lessons Learned From Being Homeless – by Kenny Murray

Posted on by akiwifreund

These are all wonderful points; some of them will save you from homelessness if you ever find yourself close to it. (The only one I don’t practice is believing that it can always be worse. As I like to say, it’s not a competition for the shit cookie.) Be well and be loved.

Kindness Blog's avatarKindness Blog

I’ve been homeless four times in my 25 years on this planet.

When I was 7 my father kicked my mother, me and my four siblings out of the house.

When I was 9 my father had found where we lived and my mum fled with us for our well-being.

When I was 11, he found us again. We ran.

The last time I was homeless was when I’d refused to get involved in my local gang in Easterhouse (one of Scotland’s poorest housing estates), so drew attention from one of the local hooligans. I was beaten up so badly that we left the area for our own safety.

I’m not writing this so people feel sorry for me, rather I’m writing it to illustrate that yes, whilst I was homeless four times I’ve not let it dictate my life in a negative manner — rather I use it as a means…

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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.

 

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.”

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.

 

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.

Dating Whitecoats

Posted on by akiwifreund

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.

100 Dates

Posted on by akiwifreund

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

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

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

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

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

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

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

I learned many things on these 100 dates:

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

Not Sick Enough?

Posted on by akiwifreund

September often signals everyone buckling down to business again in Minnesota because summer vacations have wrapped up and everyone is back to school. My mailbox has been stuffed every day with paperwork too – mostly having to do with filing for medical assistance and getting all of my records sent to me by various facilities. I’m not even trying to get housing or food assistance. I braced myself for a challenging week.

It started out nice enough. My uncle helped me to connect with a stylist who has a lot of experience cutting wigs (both synthetic and human hair), so I finally got some really pretty pieces to go incognito when I feel up to it. Monday night to Tuesday afternoon a friend visited from another state, so you know I had to scrub my toilet for that. Today I was supposed to be wheeled around the state fair, but that outing was canceled due to rain. It’s probably good that I stayed home anyway.

My first call of the morning was from the Maryland office for Social Security benefits, notifying me that my request for disability was rejected. I know, I know, 80% of cases are rejected the first time, and I’ve been telling friends the same thing when they have asked about filing. I still wasn’t prepared to hear it about my case. I used to never cry, but now that I get anxiety because my brain is being crushed, I cry over everything – the Sarah McLachlan ASPCA commercials, the dogs greeting their vets coming home from war, the fact that I have to get another new mattress after only 4 months because I’ve worn this one out already…well, you get the idea. The lady who called me was not unsympathetic and probably gets upset people on the phone all of the time, but I’m guessing it’s not how she wanted to start her day either. She told me to file the request for reconsideration within 60 days of the date of the letter being sent to me and that the next person might view my 300+ pages of documentation differently. I was so choked up that I could hardly speak. You know when you hang up and you think of all of the things you could have articulated or asked? Yeah, that.

After I pulled myself together again, I called legal aid for my county and the attorney I spoke to confirmed that I should file the request for reconsideration. After that if I had to request a hearing, I would have to secure my own attorney – and no one wants these cases because the attorney doesn’t get paid if I don’t win my case. It’s discouraging to hear things like this because I’m having a hard enough time trying to be my own advocate with the health care professionals who are supposed to be helping me to find out what it is that’s going on. I envy the people who live in countries that don’t demonize their citizens for becoming sick and needing assistance.

I’ll see my new neurosurgeon tomorrow to talk about the possibility of another surgery now that I have jumped through all of his hoops, and I’ll meet a new neurologist on the 15th of September. Who needs a job when you have to coordinate everything for your very own Carousel of Crap?