wigs

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.

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……

Please, Sir, May I Have Some More?

Posted on by akiwifreund

My parents’ generation were the product of parents who lived through the Great Depression. My grandparents had to be creative with their resources; the flour companies started making pretty prints on their flour sacks once they figured out that mothers across America were using the sacks to make dresses. Re-purposing so that nothing went to waste, our grandparents were also guilty of turning their yards and barns into trash heaps. They were fearful of throwing anything away in case it would be needed in the future.

My parents’ generation, the baby boomer generation, turned around and said to their kids, “I’m going to give you everything I didn’t have,” which really meant that they wanted their kids to have new stuff. This started a trend of some of my classmates actually having cars being purchased for them, or having college tuition being paid for them, and by middle class – not wealthy – parents. Credit cards also started circulating heavily and regulations became non-existent, making it incredibly easy to rack up debt.

Now my peers are struggling to make ends meet and are in debt up to their ears while still providing cars and tuition and pocket-sized computers to their children as if they are staples, not privileges.

There’s a lot of talk about going back to basics and scaling back, while also teaching our children about how to manage money and understanding the consequences of debt.

I’m in a different kind of quandary, however. I need to figure out how to be poor. I mean really, really poor, in the current system – not what it was, and not what we wish it would be.

Back in 1995 when I took the road trip around the U.S. to pick a new place to live and ran out of money and said, “Okay, Albuquerque!”, I was poor. I landed with $100 and slept on someone’s futon for a month. But I was also able-bodied and picked up two jobs and moved into an apartment within a few weeks. I still had times where I lived off of $10 a week for groceries, but this is a little different. This is finite.

I sat down with the financial planner at my bank and figured out the rest of my bills for this year. However, I’m really stressing about my bed. It’s sagging and I can feel the springs poking through even with a thick foam topper – really bad for my fibromyalgia – and it’s only a year and a half old, and I’ve worn through it because I’m in bed for about 20-22 hours every day. Sleep Number is running a sale right now through September 11th and I could replace this bed for about $1100 including their least expensive base, and that would take care of the springs issue and would probably last 6-10 years. Do I buy it? Or does buying it now put me that much closer to eviction next year? If I’m evicted, what am I going to do with the bed? If I get housing at some point down the line, I’m going to need it again, uncontaminated by mold/dust/dander because of my mast cell disease.

I’ve had alopecia since the age of 3, and I lost my hair completely 14 years ago. There is a 30% off sale going on right now, which would give me a considerable discount on the wig I usually wear. Should I get that instead of a bed (it’s much less expensive)? Should I just give up on wigs now anyway because if I’m evicted next year for non-payment I won’t be able to afford them anyway and I don’t deserve to be so vain?

I have enough in my account to get me through to November of 2017. I’m a worrier by nature. All I can think about is, what am I going to do if I get turned down for disability? I mean, I hope the disability hearing happens by November 2017, because I filed for it in February 2016, and they are running 18-22 months behind (but just in case I have my senator flagging this case as “congressional interest”). Priority housing is given to people who are verified as disabled or who have children; if I am not verified as disabled (because I don’t have a diagnosis) and I don’t have children, I won’t have enough “points” to qualify for housing. All of my friends and family have pets and I’m deathly allergic, so moving in with them is not an option.

I’m concerned about both my mom’s health and my mom and step-dad’s financial stability, and my step-mom’s husband’s health and their financial stability. I’m concerned about my sister’s health and her family’s financial well-being. I’m concerned about my brother’s brand new baby who is due in the next few weeks and his little family’s financial stability. I recognize that they all have grave concerns of their own while they try to shield me from them and simultaneously try to take care of me. Certainly none of them can afford to pay for another adult’s living expenses.

I receive notices from friends telling me that I should support certain causes. I’ve said repeatedly that I don’t have any income and I won’t for at least another year, if at all, but they take “income” to mean working income. They just assume that I receive disability, even though I’ve said repeatedly and clearly that I’ve been turned down for disability numerous times. It wears me out to worry about being homeless, and I’m pretty overwhelmed by all the stuff I have to do to further my own cause since all of the offers of help were not really followed up on except by a select few, and it’s humiliating that I have to repeat myself to be heard.

This weekend I had a former fuck buddy hit me up out of the blue after years of silence to try to give me shit about moving back to my home state, mocking me about my claim that I was done with snow and cold when I moved to Arizona in 2003. I told him that I was pretty fucking sick and had stumped 54 doctors so far and could no longer live without assistance; he said he was working on three hangovers and he was sorry I was sick. He loves to talk about how he’s tired of welfare assholes, and I’m sure he thinks I’m one now too. We can’t even really have a conversation with each other anymore because in his eyes as well as in the view of the government, I have no value.

So where is the class that teaches me to navigate being homeless on the streets in a snow state? Do I get a free map to all of the soup kitchens? Where’s the best place to stash my cart outside while I warm up and surf the net in the library? How do I make a shank?

I’m Bad, Like Michael Jackson

Posted on by akiwifreund

This afternoon I went to a dentist appointment that I knew would be stressful, physically. The plan was that we would be “seating” my two crowns on the bottom left. Last week one of the temps fell off and I was told by the receptionist that even though I was in pain from the exposed bone/nerve that I had to wait until my appointment today because they had no time to see me. There was also a hole in the other temp that managed to stay on but obviously did not do a lick of good for the entire 26 days of its existence.

So when I sat down, the dentist and assistant said, “So how about we also get to the catastrophic crack on the right too?” That meant that my entire bottom jaw had to be numbed. The dentist started putting the numbing gel on the back left corner, but we both knew it was just for show. He was in a hurry and soon he was bracing his body to go for the stubborn juncture between my upper and lower jaw; I saw the trace of satisfaction on his face when I moaned, the tendon in my jaw yielded and the needle felt as if it went all the way through to my ear. After doing about a dozen injections along the inner and outer borders of my gum line on the left, he attacked the right, and decided he didn’t want to slow down to make me the least bit comfortable with numbing gel. This time I had tears running out of the corners of my eyes while the assistant shouted that I was doing great. Not a few times I thought to myself that this is either the office that they send patients who are super duper tough, or they send patients who they don’t give a damn about beating up.

Still, it’s important to keep your sense of humor as a patient, or so I think to myself. This is my reasoning every time when I am preparing to be pummeled by a member of the healthcare community. I always think that if I can somehow appeal to their humanity that they will see me not as a number or as cattle, but as a human with feelings and needs.

While we sat and waited for me to lose my ability to speak, some Michael Jackson came over the sound system. Just as the dentist came back in the room, we were practicing our “hee hee”‘s.

So that was our running joke until it was time to get serious about getting the temps off and the permanent crowns on. They didn’t numb me enough. I got a few more pokes. So he set off on the right side to take down the tooth with the catastrophic crack. I had warned him that I was not optimistic because I hadn’t been able to chew on that side of my face at all; the cracked portion would shift and cause me crazy pain. He was still hopeful.

While he was working on me, sometimes he would bark orders at me – “Left! Right!” More often than not, he would use the small mirror that he had hooked in the right side of my mouth to move my head around. I could feel my wig getting matted at the back of my head – not exactly ideal, since this piece costs $370, far from cheap, and once the fibers are ruined, there’s no going back. As the minutes dragged on and the dentist maneuvered my lips and tongue so that he could get at my tooth from all the best angles, even in my numbed state I could feel the corner of my mouth splitting. Out of impatience and frustration the dentist hooked two fingers under my top right lip and stretched it as far as it would go, and kept grinding my tooth down to a nub. Tears slipped out of the corner of my eye again. My fingers tensed; I focused on relaxing them, but after a few minutes, I would realize that they were back to being claws and my forearms were becoming sore.

Finally they were done with that tooth. I can’t remember how many songs passed, but we just happened to end at another Michael Jackson song. They took a mold of the right bite so I could get my temporary crown, and finished just in time for me to say with Michael, “You know I’m bad. Sha-mone.” That cracked them up again. They asked if that was really what he said, and I asked them if they had a better explanation.

By the time they were ready to put on the permanent crowns on the left, some of the Novocaine had worn off, so I had to get more shots. More cheerleading from the assistant. I swear that my nine lumbar punctures have been easier than this trip. More stretching of my mouth, pulling my face left and right as if I am a horse being led by a bridle and bit. Barking at me to open my mouth wider when all I want to do is close it to take away the deep ache.

Finally, finally, after 2.5 hours, I escaped the chair and we talked about the next appointment, which is on Friday. I’ll have to be numbed again but it shouldn’t be as traumatic or long.

WWMJD (What Would Michael Jackson Do)? Sadly, my plan to appear more than just a mouth full of broken teeth failed. I’m not giving up my sense of humor. It’s as much for me as it is for them.

The Boyfriend Invasion

Posted on by akiwifreund

The Saint Paul and I have been dating for two and a half months now. Our first date was many hours long, so many that we approximated it to be the equivalent of four dates. We’ve had many dates since then where we’ve had up to fourteen hours together until I’m physically holding my eyelids up with my fingers and he’s stumbling into his shoes to go home. We’ve also fallen into the habit of not going more than three days without seeing each other. But we’ve never had a full-on sleep-over; he’s always gone home.

I live in a historic area of St. Paul, Minnesota, and every year on the first Sunday of June there is a celebration called Grand Old Days that includes music, food vendors, a parade, artists and sports/health vendors. Attendance has been anywhere between 170,000 and 270,000, and attendees can even print a bus pass for certain routes to park and ride to this area for free. It has gotten so large that this year they have expanded the festival to the whole weekend instead of just Sunday. My flat just happens to be right next to one of the sound stages – and I’ve checked the lineup, doesn’t look promising.

Healthy me would have been absolutely thrilled. This is the stuff I used to live for, and it’s right at my front door. But the new me has to come to terms with the fact that I can’t walk a couple of miles or stand for hours to listen to live music or spend money on food and pottery. The thought of trying to navigate throngs of people while my brain is being squeezed and my eyes are drooping gives me extra anxiety. If I’m being completely honest I can whine and say that it’s not fair, but then who in the world can I blame that on?

The Saint Paul has opted to come over Friday night so he can score a parking spot and not have to stress about it after that. We might run out to get a few groceries, which will require us planning out meals for two whole days together, and then he’ll head home Sunday night. He’s going to try to borrow a camp chair for the parade, since I have my own already – we have to stake out a place on the sidewalk along the parade route pretty early in the morning Sunday, because it’s going to get gnarly. We’re fully expecting drunks to be trying to get into my building or to be peeing in our planters or every barfing in every doorway. I’ve heard stories. Non-food businesses are now in the habit of shutting down completely for this festival.

Other things take planning too. I’ve suggested that he bring over his favorite pillow to help him sleep better (because we all know that makes a huge difference when sleeping in unfamiliar territory). Sometimes I wake up coughing because of acid reflux, so I kind of have to be ready to move to my couch (five steps from my bed) if I think I can’t get back to sleep right away. And to hear The Saint Paul tell it, he flops around like a fish when he sleeps, which does not bode well for me, the ultimate light sleeper.

Most importantly, 48 hours together guarantees that there is going to be poo involved. Knowing my GI tract means there’s going to be multiple incidents each day. I have a brand new bottle coming that should be arriving just in time for Friday that is ruby red grapefruit-scented that may prolong my relationship with The Saint Paul. I am telling you, every house should have PooPourri because everyone poops, and no one wants to die by Lysol or any other chemical stuff that you spray in the air that makes it smell like you shit out a pine tree. I cannot say enough good things about this product. Buy it. You spritz it in the toilet bowl before you unload your load, and all is right in the world.

Lastly, most of my lounging and sleeping when I am solo in my flat is done sans hair. My wigs are just not at all comfortable, and wearing them in bed actually wrecks the fibers. So The Saint Paul is going to get a full dose of me au natural, and I have warned him that once I have taken them off in his presence, I will probably lose all motivation to wear them all of the time. I like how I look in them, but they are so damned scratchy and uncomfortable, plus wearing them less will also help me to be able to keep them longer since I have no money coming in. So for your viewing pleasure, here is (a very dirty) Mr. Clean taking your day to a whole different level:

Sharing Is Caring

Posted on by akiwifreund

I got accustomed to living in my house in Phoenix; I had a large lot, the walls were brick, and not many sounds penetrated from the outside with the exception of the neighborhood roaming illegal roosters crowing day and night. Conversely, I could make as much noise as I wanted to like singing loudly, and I didn’t really have to worry about disturbing my neighbors. In true Phoenix fashion the curtains were always drawn to keep the sun from heating the house up too much.

Now I’m in an apartment in an old building in Minnesota that is less than 1/6 the size of my house, and besides being aware of the size, I’m aware of touching space. Specifically I know what my neighbor upstairs has for breakfast on weekends, or when her kitten is playing with a toy. I also always wince whenever I drop something on the floor in case there happens to be an apartment below me in the basement (which I still can’t figure out but have heard noises come from that area from time to time like someone is doing prep work in a kitchen).

All winter long I have had a fan going because even though this is an ancient building, the radiators work like ancient screaming, steaming beasts, and I sweat like crazy. I don’t even get under the covers. I also wear my summer pajamas, which are usually big t-shirts or chemises.

Today, however, the radiators are not on, so neither is my fan. It’s just chilly enough for me to be under my covers and for my electric bed pad to be on. I decided to dissemble my fan and wash all the parts because they have been caked with dust like fans are wont to do. In the quiet, I have become aware of certain things.

First, just because my fan has drowned out outside noises to me, doesn’t mean my fan has drowned out my noises to other people. I mean sure – I’m a decent singer. You’re welcome, neighbors. Second, I could hear my upstairs neighbor and a few of her friends giggling. This was not loud giggling. If this was not loud giggling, then what could she hear from ME? I really, really need to work on my whisper-scream, if you know what I mean. Pretty sure I need to stuff the space around my door with towels too. What the other tenants must hear when they pass by my door…! I can see it now: “Hang on, honey, I need to do some soundproofing. Hold that thought.” I just saw the movie “Room.” I wonder if I could soundproof my little sweat box just like the psycho did the shed where he kept the girl imprisoned? I would only use my powers for good and never for evil. I sure would love the luxury of screaming loudly without summoning the cops. Of course, that would work against me too. I have wiped out a few times in the tub and it would be just my luck that I will have to holler for help at some point and not a soul will hear me just because I want to set up my apartment to have noisy sex.

Speaking of sweat box, I tend to dress down when I’m in my apartment and it’s about 80-85 degrees F when the radiators are blasting away. My windows face a business that doesn’t have any windows facing mine and the alley doesn’t get any foot traffic because it’s fenced off on both ends…except for today. When I got up this morning I raised my blinds about a foot so I could see some sunshine. However, at around 9 am, two heads came floating by my windows about 7 feet from where I lay in bed next to the windows – I’m on the first floor, but I’m up a half flight of stairs, so my floor is not exactly flush with the ground floor. Apparently the business was experiencing problems with its ventilation system and a bunch of guys had scaled the fence to work on the wires.

I didn’t make any sudden movements, just laid in bed in my not-safe-for-public-consumption t-shirt and undies, no makeup and no wig. I slowly raised my body pillow so that it blocked me from their sight and when they left the alley temporarily, I jumped out of bed to put my shades back down. I honestly don’t know if they were being polite or unaware by not looking in my windows. Really, I was doing them a favor by sparing them of the full effect of me in all of my glory because it can be quite startling if one isn’t at all prepared.
This is the ultimate dilemma. If spotted, do I flash them my saggy 40+-year-old boobs so they know I’m really a woman and not a dude with a bald head? I mean, if I were transsexual, there is no way I would pay money to have this body. <sigh> I guess this was a good reminder that I shouldn’t run around in my skivvies with the blinds up even a little bit.

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

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.

Chelsea Handler Is My Soul Mate

Posted on by akiwifreund

I just finished watching season 1, episode 1 of the series “Chelsea Does” titled “Chelsea Does Marriage.”

Okay, there are a few ways in which we are not so similar. First, she’s a well-known star. Me, I’m lucky if my sister’s dogs remember me. Second, she can drink like a fish. I can’t because I have all of these crazy diseases (but just for the record, Chelsea, in my 20s and early 30s, I could have kept up swimmingly). Third, she’s not a fan of “fatties.” Since I’m stuck in bed, I’m the opposite of skinny, and I am severely limited on physical activity.

But here is how we are so similar: First, we share the same first name (and it’s spelled correctly). Second, we are very close in age; I’m actually 9 months older than her. Third, we both are very outspoken. Fourth, our father figures have told us and the men we have dated – if we like the men enough to bring them around, which rarely happens – that we are very strong women, and require a strong man.

Getting into the particulars, Chelsea and I feel the same way about the wedding dress, the wedding ceremony, and what comes before and after the big day – we just don’t get it. I never imagined a wedding day or what I would wear as a dress or even what it would be like to want to be hitched to someone for the rest of my life. I was lucky enough to be asked to be a part of the wedding party when two good friends got married, but it was very non-traditional. She wore a black dress, we went shopping for her black knee-high boots, and her wedding march music included “Flash’s Theme” by Queen. He wore a nice button-down shirt and even got a haircut for the big day. I think how my friends treated their special day was about the same level as I would want mine.

Chelsea and I have done a lot of dating and have had a lot of sex. In fact, I felt a little sorry for her because by my calculations of when the show was being taped, I was actually getting more ass than she was. That just goes to show that men have no standards – I mean, c’mon, I’m a bald woman who is confined to bed for about 22 of every 24 hours, and guys still wanna slip me the mickey.

But we’re kind of getting to the point in our lives (and Jesus H., don’t say it’s because we’ve hit 40) that we want to see how different our lives would be if we actually had someone in our corner. And we also want to be the type of people to say, “Yes, I love ______ deeply and he is my best friend.” We need strong men who aren’t going to act all butt hurt about everything that makes us us. We don’t want to be life coaches. We want men to be comfortable in their own skin and to look around and say, “Oh, I’m going to take care of this” instead of us having to beg, plead and bully someone to put on his big boy pants and do it, and do it right the first time.

Chelsea, I totally get it on Eric Bana. He is very masculine and he loves his wife deeply, and he doesn’t let anyone cross the line or share that space he saves for his wife. I think that when spouses are that loving, we see a certain relaxation in their faces. I’m not saying that I imagine their lives are perfect or they have no struggles. I’m saying that they know that if shit goes down, they have this life partner who is going to go through the shit with them instead of making a run for the life boats. Ultimately, we want someone to have that same look with us, and we want to see it on our own faces for a change.

By contrast, we are turned off by men who are overeager. We smell insincerity as if it’s a noxious blend of Avon perfume and cigarettes. We know when men are rubbernecking to make sure there isn’t somebody better than us lurking around that they might rather hook up with, and we simply don’t have time for that. We also don’t deserve to be abandoned.

The love we give to the men who truly deserve it is hard-earned. Chelsea and I have sharp tongues and a very thin filter. Fellow humans give us our best material, so men, if you fail us, your fall will be very painful. If you live up to the task, it will be like seeing the sun for the first time.

I don’t know about Chelsea, but I’m still taking applications.

Lastly, <sigh>, here is an article where the reporter tried to put Chelsea in a box. “Is this reality television or a documentary?” I would choose neither. Just let it be.

http://www.theatlantic.com/entertainment/archive/2016/01/chelsea-does-netflix-review/426951/

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.