disability

Maybe I’ll Go To Stanford After All

Posted on by akiwifreund

Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health  and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.

This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.

I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)

I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.

I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.

I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.

Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.

At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.

So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.

Medical Sexism and Trump Grabbing My Girl Parts

Posted on by akiwifreund

I pride myself on being a college-educated woman. The education came at a steep price. The student loans will likely haunt me long past my death; I only finished two years ago, and I was even handing in projects while I was in the ICU recovering from my many surgeries.

My education is not strictly located in books, though. I have traveled through 36 states and 7 countries in 20 years, and moved across the U.S. 4 times. As my friend pointed out on Friday night, I seem to be able to talk to people wherever I go (I didn’t realize anyone noticed!). Sometimes I hang back and observe, and there is a lot to be learned by listening and watching body language.

I have never liked Donald Trump. I was never attracted to his slicked-back hair and definitely would not have recognized him if I stumbled across him in the 1980’s or ’90’s when his star was rising, and I couldn’t stomach his show for even one hour when “The Apprentice” started airing. I didn’t understand the appeal of him being put in front of a camera for being extra nasty. I never bought into the idea that it was being played up for entertainment; I actually thought that he was even worse than what we were seeing.

Now here we are and somehow he has slipped past all of the 14 other candidates for president and it’s the last few weeks before the big election. Here in Minnesota we’re allowed to vote early by absentee ballot, so rather than join the crush on voting day, I made arrangements to go to the county office at a time I knew it would be much quieter. It took me about a half hour to fill in all of the boxes manually for all of the different options. We had state representatives and judges that needed votes as well as the president and vice president. Luckily Minnesota is still using paper ballots – so many states tried to go electronic and the glitches resulted in votes disappearing forever, and Republicans winning votes where they might not have.

In case you haven’t guessed yet, I didn’t vote for Trump. I happen to be a few things he hates: a disabled, fat, bald woman who will never compete in beauty pageants or for his attention. But here’s a more comprehensive list of why having him as president would pretty much guarantee that 99% of us would be dead by February 2017 (or there would be a coup, but that would require people getting off of their asses and abandoning their cats).

I attended a school in a very rural area of Minnesota for five grade levels before I moved back to Minneapolis to finish school. Some of those classmates are now friends with me on Facebook – or at least “friends” as Facebook defines us. But we have led very different lives. As much as I have ventured out on my own since the age of 16, the majority of them have stayed very close to home, married very young (some even fellow classmates), had children, and some have already started working on grandchildren, even though our age range is only 41-43. Collectively and in general, they are afraid of anyone who isn’t white and Catholic; Lutheran is marginally okay, even though those fuckers don’t kneel. You’re fucked if you’re Jewish in that area. There’s been a mighty wave of Muslim Somalians of course, and the white folks are scared shitless. Trump seems like a white-orange god because he makes them feel secure – walls! Muslim registry! Deny entry to any more Muslims! All Mexicans are bad (except for tacos)! Um…money! (Shhhh, don’t say anything about the fucking bankruptcies. He was smart for dodging taxes, you’re just jealous because you’re not as smart as he is.) And the creme de la creme: GRAB WOMEN BY THE PUSSY! He sure tells it like it is!

Well, let me tell it like it is.

First, let me drop in a little truth bomb. I had my genes analyzed through 23 & Me just to get the raw data because of all of this rare disease business and to see if they could pick up anything identifiable, and something that came up on my mitochondrial DNA (mom’s DNA) is that I’m Yemeni Jewish. That’s right, fuckers, I’m Jewish. Yemeni Jews happen to be the oldest lineage of Jews, desert dwellers who often converted to Catholicism in order to avoid being put to death, which is likely what happened with our family somewhere along the line – we’ve got bishops and nuns. Jews who converted to Catholicism became self-haters publicly to save their lives. I’m a survivor.

Second, I feel like we are moving backwards in time. Trump is just a very obvious sign of it. Here we are in 2016 and a swimmer gets 3 months in jail for raping an unconscious woman in a back alley because a judge feels sorry for his potential swimming career; young men are deciding that as a reaction to women trying to get equal rights and pay to men, there needs to be a movement called “menenism” where their “grievances” need to be aired (and though it was started as satire, I’ve been personally targeted numerous times on Twitter by guys with the “menenist” agenda – mostly ending with “shut up bitch what have you done nothing,” so of course I’m mentally correcting the punctuation); and now females aren’t going into medicine in equal numbers to men.

When I was debating the Trump vs. Hillary vote with these former classmates and they were telling me why they thought Trump was still “better”, and here was the list that one of the debaters came up with:
Instead, I suggest folks vote based on simple, concrete (non-emotional) things like
1. Who will keep us safer?
2. Who will keep the government out of my health and education choices?
3. Who is LESS LIKELY to be swayed by bureaucracy?
3.5. Who is least likely to fu*k up our economy further?
4. Who hasn’t been linked to several national security leaks?
5. Who hasn’t been linked to voter fraud?
6. Who hasn’t been linked to multiple nefarious deaths to those opposed to or threatening to them?
7. Who HAS BEEN?

This was my response:
Okay, I’ve gotta jump in on this, because I’m a little worried about just where the “facts” are coming from. First of all, we have a pretty solid idea of how Trump is going to treat certain issues.
1. Trump is going to be just as challenged with geography and world events as Palin is.
2. Trump needs to stay away from my vagina and needs a thesaurus because he only knows the word “tremendous” – so do you really think he needs to be in charge of determining how education is either built up or broken down?
3. Trump is easily swayed by anatomy, money, perceived power, hair spray and dementia (his own). 3.5. Are you guys really okay with the number of times he has declared bankruptcy and denied payment to all of his contractors, big and small?
4. He leaks what’s going on through his brain (i.e.: “I don’t pay taxes because I’m ‘smart'”) – pretty sure he shouldn’t be trusted with nuclear bomb codes.
5. He doesn’t have a voter fraud record because he has never had an office that he has been voted into; he has bought all of his offices. And then filed bankruptcy. Multiple times.
6. Multiple nefarious deaths….well, that comes with the territory of being American, doesn’t it? We’re all bullies. We don’t take time to listen or understand or practice any diplomacy.
7. Silly question that is more like a bumper sticker and carries no meaning.

Then one person asked how I felt about “all” of our health care providers supporting Trump?

I’m going to let the “all” slide because I don’t think that’s the case, but I am personally struggling with getting adequate care, and I truly think it’s because we have a boys’ club that is going strong still. Right now the breakdown is about 70% male and 30% female doctors, and I really do feel like my female primary care doctor isn’t confident she can stand up to the male specialists who misdiagnose me. Because she can’t, it really, really fucks me over. It fucks over my case with the undiagnosed diseases with the NIH, and it fucks over my case with disability.

I’ve been struggling with the right way to put this into words, and it’s a little more complicated. I have a deep mistrust for doctors at this point in my life. I expect them to let me down. Last week when I had my appointment to follow up on the testing for the mast cell disease, I barely slept three hours the night before and fully expected to be sent away, just like hundreds of other times. So right now, if I even have the slightest hint that someone worships Trump and his hatred for women besides as sexual vessels, I instantly get anxiety. I can’t trust that doctor to write objective notes in my file and I can’t trust that doctor in my personal space. This is not unfounded.

But the truth is that most doctors won’t talk politics freely. I just have to trust my instincts and  read the doctor’s body language and figure out if he’s an asshole the old-fashioned way.

The One That Got Away & Other Lies

Posted on by akiwifreund

There is a guy on Twitter that I started following who is a life coach and motivational speaker, but is definitely not a Joel Osteen/Tony Robbins type, though closer to Tony than Joel – he reminds me of the fast-talking Italian types that I think all of us have seen a time or two whenever guys in suits are interviewed about whatever happens on Wall Street. And they’re Italian. And they’re loud. And they say “fuck” a lot. And they have a lot of big, white teeth and they talk fast and they say “fuck” again, just for emphasis.

What Brenden says in 140 characters on a regular basis at least once a day is what I have said at least once myself, or maybe have taken a few more words to have said it, but the sentiment was there. One downside to Brenden is that he is a staunch supporter of Trump, so I have to sometimes decide if I have to walk away from what he’s saying for an entire day because he’s humping Trump. I wish he would leave the elections out of his life coaching, but it’s his choice, so I have to deal with it.

To be clear, I’m not following Brenden because I feel I need life coaching. I think I have a pretty good handle on who I am, and I think Brenden has a pretty good handle on who he is. For a good portion of my life people have come to me for my help and advice. I feel like Brenden should be my backup bitch. I haven’t got the energy for it. Actually, I need to reword that: I don’t have the fucking energy for it. I’m at doctor appointments nearly every day and worrying about where I’m going to live when my money runs out.

Anyway, one of his posts today was this: “You can’t move forward in life until you’ve got a proper context for the past and are completely at peace with it.”

I think proper context is something that a lot of people miss out on, especially if they are finding themselves stuck in the same patterns.

Because I’ve been on OKCupid a few times in that past couple of weeks, I’ve seen old messages that were not previously deleted – even from a few years ago! Some exchanges cracked me up, some made me roll my eyes, some guys made me think of course you’re still on here, you’re just looking for someone to bang, not a relationship like you claim in your profile.

Of course, the messages between the most recent ex and I were in there too. He told me in the course of our exchange that he had taken expensive dance lessons to impress a woman who had no romantic interest in him and never would. I found out this happened sometime between age 38 and 44 for him, and he turned 45 when we dated. He was supposedly madly in love with this woman for five years while she said she only wanted friendship from him (and maybe once in a while emergency assistance like errands or bail-outs).

He told me, “She’s the closest thing to the one that got away, I guess.” This is not proper context. If one is going to use this Nicholas-Sparks-antiquated term, it refers to both parties loving each other and feeling as if they could, indeed, be in a long term or forever relationship, but distance or circumstances (like one of them is taking care of an ailing parent for 20 years and it’s the 1940’s and unmarried people don’t live under the same roof) keeps the couple from getting together. This woman could not imagine dating him. He was really, really trying hard to make her change her mind. For five years.

She does not owe the Ex-Saint because he really, really wanted her to change her mind. She is not, nor will she ever be, the one who got away.

Same goes for me. I am not one that “got away” – but I did call bullshit.

It’s weird and creepy how much of a departure from reality his imagination took him, but here’s a glimpse: He would tell everyone he managed a “call center.” Now, I’ve worked in call centers for 15 years. Hell, the campus I worked at in Arizona had 4500 people. His area has 3 people including him. He’s never worked in a call center in his life because this has been his only job in his entire adulthood besides the pizza place in college (which also wasn’t a call center, incidentally). My apartment has a cell phone and a VoIP phone. Do I live in a call center? No. But if he were describing it and it was his apartment, then yes, it would be a call center.

The Ex-Saint would get many calls that he wouldn’t answer while we were spending time together. I suspected that they were bill collectors, but he never admitted it.

The Ex-Saint had a gambling problem and would drop large bills on pull tabs. I only knew about it because the few times that we were at bars, he couldn’t pass by the pull tabs without spending a minimum of $50-100 in 5 minutes.

The Ex-Saint is a binge drinker. Every weekend, and even a few days a week, he gets stupid drunk. I estimate that he drinks somewhere around 50-70 12 oz. beers a month (but that might even be conservative). He’s also obsessed with putting jalapenos on all of his food, which has been identified as being an indicator that someone is an alcoholic – they seek out the spiciest food because they have fucked up their entire taste system.

The Ex-Saint is a binge eater. He slurps all of his food from his fork in a frenzied fashion as if it’s the first and last time he will ever eat, chews frantically with his mouth open and his eyes glaze over. He also eats 2-3 full plates at a time. This one is particularly hard for me because I have certain triggers myself, having struggled all my life with food addictions and seeking comfort emotionally through food. (Side thought: Where’s the damn gene that makes us addicted to vegetables??? WTF?)

The Ex-Saint is a hoarder. I was never allowed to see his apartment because apparently it was packed with junk and boxes.

The Ex-Saint is a compulsive liar. From the job description to the denial about drinking and gambling and just about anything else you can think of (too much to list here), lying is so much a part of his life because addiction is. I remember one time he tried to accuse me of lying about playing the violin, clarinet and piano; I told him that he had walked past my violin a few hundred times in my closet without realizing it, but it was there on the top shelf right in the open if he looked. No lie there. I’m musically inclined.

Proper context would happen if he actually got professional help to work through his issues. Unfortunately, he’s back on OKCupid (so now I can properly block him) – but that means he’s going to be telling his lies to a whole new audience. I’m sure his family feels sorry for him and has told him to get out there and try again. But if he’s lying to them, or worse, they are enabling him to continue to hoard and binge drink and gamble and wrack up debt, they’re not doing him a lick of good.

If he’s ready for some honesty, I’ve got Brenden’s info. Brenden will help him kick some fucking ass with truth and live an authentic life.

(Just don’t vote Trump or we will all die by February 2017.)

This Is Going To Sting A Little

Posted on by akiwifreund

My day started early – stupid early. I didn’t mean to, but I only got three hours of sleep because like with all other nights before big appointments, my anxiety skyrockets. My alarm was set to go off at 4:55 a.m. but I woke up at 2:35 a.m. I tossed and turned, and then out of habit my fingers found the spot on my left glute and pressed it and I wondered for the thousandth time if I should have it checked by the dermatologist because melanoma and squamous cell carcinoma run in my family and I never date anyone long enough to remember to ask that person to check the mystery spot on my ass that I can’t see myself. Then I checked Facebook and Twitter and Instagram and all of my email accounts. Then I put on a few terribly cheesy movies from Netflix but couldn’t make it past the first 10 minutes before giving up and searching for another one. Finally I turned off my alarm before it sounded and showered and readied myself for the day, and took my handful of morning medications.

The first appointment was at 7 a.m. with the nurse practitioner working with Dr. Afrin at the University of Minnesota; he is the granddaddy of mast cell activation disease and his patient log is backed up so much that he’s booked out one year in advance, so the NP is helping to do the follow-ups. It was our first meeting and it was after my initial follow-up had been postponed in favor of more testing, so I was already preparing myself for the absolute worst. After all, I have gotten the speech so many times: “I’m sorry, your tests are inconclusive, so I can’t continue seeing you.”

One of the first things the NP said to me was, “I have never seen a histamine level that high before.” We talked about a lot. She gave me about 15 pages from Dr. Afrin to read – and they are prose-heavy, so it’s going to take some time to go through everything. I’m going to have to do a lot of trial and titering up with the medications to see if I can figure out a dosage and frequency that works. He indicated that we are about a decade out from understanding more about the intricacies of MCAD. The bottom line is, I have it. He might be able to make my life more comfortable but there is no cure.

I talked to the NP about my feelings about sending part of my drainage catheter to the research scientist in MI (if she wants it) to see if mast cells are causing problems on the shunt – maybe that’s what’s causing problems for a lot of shunt patients? Also, the NP has no idea if resolving my histamine and inflammation issues with MCAD will actually make it easier for me to have a shunt inside of me. Also, she had no idea if that’s the reason I needed one in the first place. And because I’m still having a lot of issues brought on by the PTSD/anxiety/depression, I did cry in the appointment (like I do now in all appointments), but only once. All of the sudden towards the end of the appointment, the fluid moved down the shunt and both of my eyes spontaneously opened. She got up to get a light and checked my pupil reflexes, and remarked that she had never seen anything like it. I told her that I never had any warning but I knew that I was a magical number between air pressure, humidity and temp; after a few minutes, the shunt clogged and my eyelids drooped again and everything went back to being paralyzed.

After that appointment, I had to come home and meet with the supervisor from the organization that employed the woman who sent me the fire and brimstone craziness. We had to talk about a lot of different issues including trying to find housing for me (since I can’t live with anyone who has animals – my friends and relatives are all breathing big sighs of relief!) and the public housing list wait list is something like 1-3 years (I have no idea what I am going to do between now and then, though there is something I can apply for with the state of MN that is a status of disability that has nothing to do with money but does get me qualified for services and housing). We also talked about getting me help if and when I get shoulder surgery since I won’t be able to do things like haul around laundry.

This was the first time that I met with this person, and she was asking me to fill in some information about why I was having such a hard time with finding neurologists and neurosurgeons. Every time I have to talk about it, I immediately start crying – that’s what clued my therapist in to the fact that I’ve got PTSD – and it’s emotionally draining. I’ve stopped apologizing for getting upset. So I walked her through the Three Stooges at the U of M who completely sabotaged my case with the NIH Undiagnosed Diseases Network as well as Social Security Disability.

I was supposed to go to a social gathering tonight, but I called to cancel because I wouldn’t have gotten home before 10:30-11 p.m., and I have to get up stupid early tomorrow, around 4:45 a.m. again to see the orthopedic surgeon. I’m really fucking tired. I’m so tired that I’ve been sitting here in the same spot for about 4 or 5 hours and I just realized that I put my lounging dress on backwards (it’s got a scoop neck in the front and a deep “V” in the back) and I really can’t be bothered to fix it. Normally I would be a little mortified, but at this very moment, I do not care.

I think about how this is breast cancer awareness month. I think about how everyone understands the gravity of cancer. I think about how five days after one of my surgeries, someone told me I looked fine, and I probably didn’t need help.

I think about how I never knew it was possible to have a disease that couldn’t be diagnosed for this length of time, and that doctors could turn patients away.

I think about how it’s been 6 years and 3 months since I’ve gotten sick, and I may never know what the real culprit is – but it’s funny that my body kicked it into high gear just as MCAD was beginning to be identified. At least I have that label.

Oh, and the doctor put in my notes that I had a “stunningly good memory for the entirety of my history including specific dates for each event” but that my appearance is a “chronically ill-appearing woman who looks a bit older than her stated age….”

Ouch. I always am guessed to be 8-10 years younger, at least to my face.

Can’t Find What You’re Looking For? Try The Thesaurus!

Posted on by akiwifreund

This was cute. Normally I’m not a fan of the Copy-and-Paste-Monster, because clearly the man is sending out hundreds of messages and just waiting to see who responds, but this guy either didn’t ask a friend for a second opinion before he started sending his out en masse or he had great confidence in his writing skills. Whatever the reason, enjoy:

Hello hope this finds you well!
I wanted to take a moment of your time and introduce myself, my name is J++++++n.
I have read your profile and really liked what you said concise and interesting.
Anyways you seem like a very interesting person to me and I would enjoy getting to know you better. Check my profile and hopefully there’s something that will interest you and if so, and you are interestead feel free to write me back.
Have a great day.

(Just as a reminder, this is what my profile says:
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Lame excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap, hip hop
– Republicans
– Being called “cutie”
– Organized religion or prayer

What I’m doing with my life: Writing articles regarding rare and chronic diseases, trying to find the joy in life with new restrictions. Seriously – there is no way “arrow root pudding” is a real dessert!

I spend a lot of time thinking about: the fact that no one wanted to share a deep, dark secret, so OKC took that question away.

You should contact me if:
– You practice kindness and wit.
– You strive to live an authentic life.
– You are not addicted to beverages or chemicals.
– You are a non-smoker (of all things) and don’t use chew/snuff (ever).
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You understand that no means no.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.
_____________________________________________________________

You would think that with just the basics, there would be at least a few things to chat about, even if it’s “Why can’t I snort coke off your tits?” – if you remember, that’s a gem from a previous OKCupid guy. Anyway, I would be interested to know why the guy doesn’t know any other term to use besides interested because there’s a whole world of knowledge out there on Thesaurus.com.)

********Fun fact:  In the time it took to sign on and copy my profile to this post, 23 guys looked at my OKCupid profile! Dangit, there’s going to be more material soon, I can just feel it. Breaking hearts and taking screen names……

‘Scuse Me, Are You The Lady With Some Honesty?

Posted on by akiwifreund

A week ago I received a message from a guy on OKCupid who seemed pretty sane. What I mean by this is that he typed complete sentences that included all of the proper punctuation, he didn’t call me “sweetie,” “honey,” “dear,” or “beautiful,” and he didn’t simply say “Hi.” He did tell me right off the bat that I had a lot of negatives in my profile (as in, “Don’t send me dick pics”) so it was hard for him to get a true sense of my personality.

I wrote him back and thanked him for contacting me. I told him that I wrote my profile in that manner because in the past, it never mattered what I wrote – every guy who contacted me wanted to get right down to showing me his penis, so I had to immediately make my personal boundaries known.

I also told him that I wasn’t really in top form for dating for the time being; my time and attitude are both being consumed by medical stuff and I am not the best company right now. His response was, “Hey, I understand on both fronts – it’s gotta be pretty frustrating to be a woman on this site and fighting off all the trash, and if you have stuff going on that is too much to deal with, I won’t take it personally if I don’t hear from you again.”

I wrote back and said, “Hey, thanks for understanding! I don’t want to be one of your “stories” because of the stuff I have going on, so I think it’s best if I take a time out right now.” So…crickets. He’s being a gentleman and taking no to mean no at face value, which I appreciate to no end. It’s times like these when I really, really feel cheated about the body I currently dwell in.

From another guy an hour ago: “Hello! I love the profile. Very Intelligent way to let people know you are a no-nonsense, straight forward woman, who know what she wants. And I like that.” However, he’s a holy-rollin’ Christian and I’m not at all attracted to him physically, so I’m going to have to thank him and turn him down gently. I’m going to stay on hiatus for now.

And I just saw someone from the town where my mom’s business is located. There’s only 1,000 people in that town on a good day, about 80 miles from here, and I can’t figure out if I know him…I’m afraid to click on his profile. I guarantee you he’s a Trump humper and we’d have nothing in common anyway, but it creeps me out that I’m back to being in the same state as the place that I ran away from two decades ago and I’m going to keep running into people I know exactly in the same manner.

How Nice, She Included A Map

Posted on by akiwifreund

I’m officially clinically depressed.

I don’t know who was the first to diagnose me. It doesn’t really matter. You would be depressed too if you had worked your way through 54 doctors and none of them could tell you what was causing your severe physical issues, a good number of them misdiagnosed you, somewhere around 10 said it was psychosomatic, and around 49 of them told you to go away and don’t come back.

I’ve got anxiety too.

I can’t talk about a lot of the CSF stuff without becoming emotional. I also don’t sleep the night before appointments. Who wouldn’t react the same under these circumstances?

At some point, whether it was my counselor or one of my medical doctors or the actual medical insurance, someone determined that I should get help from a county organization that offers comprehensive help with mental health. Fine. I’m doing meditation, and I’m trying to be social while also trying not to wear my body out, and I’m trying to watch videos of babies and cats and dogs to keep my spirits up, but fine, if this is a resource that I can benefit from, then sign me up. But I told them that I still need a hospital bed so I can try to avoid bedsores, and I still need a neurologist and a neurosurgeon that won’t turn me away and who will listen to me.

So this past Monday the 19th I had my initial intake appointment, and two women from this organization come to my apartment to discuss the program and sign forms with me. I signed a release form for them to talk to my counselor, with whom they are very familiar, and they also went through various questions, one of which was, “Do you have a religious preference or religious beliefs?” I emphatically said, “No, thank you!” They smiled and nodded, and we didn’t go into more detail, but it was clear that I have zero interest in religion.

So imagine my surprise when I pull this anonymous letter out of my mailbox this afternoon:
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At first, I thought one of my friends (or even a frienemy) was having a laugh at me, especially since religion has been a hot topic in light of the stabbings and shooting this last Saturday. I wracked my brain; I thought there was a possibility it was the crazy German woman who was always telling me she was better than me and in addition, she was a good Christian; I fleetingly wondered if it was a relative of the ex or maybe a recent new acquaintance who contacted a friend for my address to send me this information about this can’t-miss fire and brimstone. The envelope wasn’t much help because it didn’t have a name on the return address, but I looked up the numerical portion anyway…

Bingo.

It’s from one of the two people who sat on my couch on Monday morning. They both heard me firmly say “No, thank you,” and both smiled and nodded. When I talked to them about my medical history and both were absolutely dismayed at the number of surgeries I had, my inability to still get a diagnosis, the swiftness with which I am sent away, the sheer number of doctors I have seen, my accuracy in my communication to my doctors and their refusal to “hear” me…let me say that last part again: THEIR REFUSAL TO HEAR ME. They said that they would collaborate with my counselor and also have an RN visit my apartment so that my physical and emotional needs could be addressed, and they would also review my medical records so that they would be worded more accurately for my disability case.

They saw me become emotional when I said that doctors were ignoring me when I told them exactly what was wrong with me and it would prolong my agony and pain, sometimes for years, when they ignored me; I was never wrong. They said again, “Your biggest challenge is that doctors don’t hear you.” Yes!

So why didn’t they HEAR me when I said “No, thank you” to religion?

There is a certain arrogance that comes with religion; if you practice religion, why is it assumed you are better or your life is better than if you don’t? If one person is religious and the other person isn’t and there is some debate about whether or not a ritual like going to church is practiced, why is the assumption that the ritual is the obvious choice and that the religious person should be made happy? Why can’t it be the other way around? Pray on your own time. God is everywhere, right? Why do you have to go to church to put money in the pastor’s wallet?

I got this letter after business hours so I have been left to my own imagination to compose letters, and most of them ended with an emphatic “Fuck you.” Most importantly, this organization is a county organization, and no where does it state that I must follow a certain religion in order to receive services. That was one of the first things I looked for, because if I would have known that that was a requirement to be in the program, I would have told them not to bother before making the appointment.

So now, just three days into the program, I have to file a complaint with the Clinical Director.

If I do compose a letter, it’s going to include the fact that I have traveled around the U.S. and have moved across the U.S. four times, and have used up two passports, and since I’m a 42-year-old woman who has lived a fairly adventurous life, I know what options are available to me as far as belief systems go. “Have you considered science?” I think I’ll end my letter with that.

Here’s Some Words And Some More Words

Posted on by akiwifreund

Well, even though I have tried to stay off of OKCupid, the fresh meat flag is still flying and the messages keep rolling in.

There are a few issues that I see repeating. One is that if I don’t reply within a few hours, the guys will block me. It’s either because they think I’m a robot (which always makes me laugh because robots always post pics that look like porn stars, not me) or that they want an answer NOW and if I don’t answer NOW then they aren’t going to WASTE THEIR TIME ON A BITCH LIKE ME. Another problem is that there’s always the guys who go into copy and paste mode and send the same message to everyone. I honestly don’t know if women respond; I mean, they must at some point, because men keep doing it, but I got this gem today that really didn’t make a whole lot of sense.

First, some background: This guy is a 72% match to me and 31% enemy, and at the end he said under the phrase on his profile “You should message me if”: “You are open minded and want to have fun.. You should also be 100% Active.. Keep it Spontaneous..”

So before I give you his correspondence, just know that the line “you want to have fun” rubs me the wrong way. Duh, dude – we all like to have fun. But that’s incredibly subjective. I happen to think going to an animal shelter and petting all of the cats and dogs that I’m allergic to is fun because it could kill me but I miss being around them, but that might not be everyone’s cup of tea. And the random capitalization of words and incorrect usage of ellipses is making my eyes burn. Now, on with the show.

“The truth will set us free so here goes.. Many people are uptight about race and gender the truth of the matter is they wouldn’t know a real man if he were standing right in front of them, many people are just foolish especially about something they have no knowledge about so before you jump to conclusions I want you to meet a man who has experience and knowledge➡Many relationships fall apart not only because of lack of communication but lack of understanding what true love really is.➡Love is feeling truly happy with another person, blissfully happy, as if time has stopped and you two are the only ones still moving, when you feel truly comfortable with them, when you know that you can spend the rest of your life with that one person, because there is no one you would rather be with… You cannot necessarily define love, but you will know it when you feel it because it will feel so amazing😉 that’s love.. ”

Let’s break this down.
1) Why is he talking about race and gender in relation to what a “real man” is?
2) What is this so-called elusive “experience and knowledge”?
3) If this guy is so certain he has experienced the holy grail of love and knows what it feels like, why is he on a dating website still looking for it?
4) He said there was no way to define love, but that was after he defined love.
5) He’s just talking at me (or anyone he sends this to). Since he’s not actually asking anything and there’s no indication that he’s read my profile, I’m pretty sure that lets me off the hook for replying to him.
6) What’s his fucking point?

Dancing With The Stars 1980

Posted on by akiwifreund

On OKCupid, I got a guy with a screen name similar to the title of this blog hitting me up, talking at me with his job resume, telling me he makes “pretty good money.” That’s his icebreaker. He waited about 8 hours to tell me that we needed to meet up. That’s after I didn’t respond to his initial messages, and I haven’t been on the site at all.

Out of curiosity, I logged on to see what in the world made him so sure he should make this demand of me without even talking to me first. His profile says we’re a 43% match and he’s really good at “giving messages.” Besides that, it’s the usual “ask me and I’ll tell you” laziness in the rest of the profile.

I think I’m going to let this guy keep cha-cha-cha-ing on into the sunset by himself.