Author: akiwifreund

Yes, All Women

Posted on by akiwifreund

The thing that gets me is that we women tend to carry these emotional burdens as our own secret parcels until someone else recognizes them. This young woman experiences the rarer form of bodily violation: the stranger rape. Through her letter to her attacker and thanks to the outrage that most of us feel over the stupidly light sentence he received, we have all been made aware of what happened to her that night and at the trial. It was especially difficult for me to read that one of the Swedish men who came upon the attack was so upset that he broke down in tears while giving his statement to the police. It gives me hope that not every man is being raised to be an asshole like the rapist obviously is.

In the bigger picture, nearly every single woman I know has experienced sexual violence. In my late teens, one young woman was raped by my friend; I cut off all communication with him despite his pleas. She chose not to press charges (because who would believe her?). My own first sexual encounter was violent – the guy didn’t believe that I was a virgin because “virgins don’t move like that” and he left me cut and bruised everywhere including my mouth. Over the years, various men have told me what I liked rather than listened to me if I told them they were being too rough or actually scraping or cutting my lady bits, and they would actually press or bite harder. I found out an ex-friend tried to force himself on one of my best friends within the last year and was outright pissed because she threw him out of her house. After all, he has a penis and therefore a right to her body is his line of thinking. How dare she tell him no?

That’s the stuff that’s even more difficult to prove. If that young woman can’t even make a convincing case for why it’s not okay for this asshole to drag her behind a dumpster and violate and mutilate her while she’s unconscious, what can the rest of us do with the men that are in our social circles who violate us?

https://www.buzzfeed.com/katiejmbaker/heres-the-powerful-letter-the-stanford-victim-read-to-her-ra?utm_term=.eaY45kj6yz#.qrwMXWGNbn

FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

Posted on by akiwifreund

FROM: AS I LIVE & BREATHE – Nikki Seefeldt, co-host of Sickadilly Chat

I’ve shared some of Megan Devine’s work before here in my blog in the past & I absolutely love her approach to dealing with pain & grief in life. I follow her on Twitter & w…

Source: FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

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:

Geneology and Truth

Posted on by akiwifreund

American history isn’t just something we learn about in school—it’s also something we carry in our genes. That’s one insight offered by a new study in PLOS Genetics on how slavery and African-American immigration patterns have shaped the contemporary demographics of the US. The study, which examined the genomes of 3,726 African-Americans, found differences in…

via African-American genes show how slavery and the Great Migration shaped the US — Quartz

Just The Tip

Posted on by akiwifreund

For the life of me, I cannot remember who worked this joke into their standup (though I could have sworn it was Eddie Murphy or someone else who was quite popular in the mid-80’s). The premise is something along the lines about said comic complaining about how when it came time for him to get a blow job, his dates were less than enthusiastic. They grabbed his penis like a microphone, gave the tip a lick or two like a lollipop, and then looked at him with expectation and asked, “You good now? That okay?” That counted as oral sex in their minds. Their mouths came in close contact with the comic’s junk, so good enough. I mean, there’s nothing more intimate than having your face in someone else’s parts and getting a close-up inspection, is there? He should have just been thankful that he got a couple of licks because that’s all he was gonna get.

I bring this up because this routine is always what goes through my mind whenever I interact with a friend or family member who checks on my status:

Friend: How are you?
Me: I’m still having health problems.
Friend: So you’re better now?
Me: No, I’m actually worse now.
Friend: Oh, but you’re better now, right?
Me: Not at all.
Friend: Okay, we good now? Stay positive!

So, are we good? Well, no, actually. Especially since I have this conversation multiple times a day with people who don’t have any connection to each other, and I am at a loss as to why this keeps repeating. When I try to get to the bottom of how they could have possibly come to that conclusion that I’m okay, I realize that it has to do with lip service every time. They want to brag that they went down on me without actually having done it.

Since I’ve vowed to live an authentic life and not fake my orgasms, I am being truthful when people are asking me about my current status. It’s making them uncomfortable but I’ve decided not to apologize for it. As we enter the summer months and the air pressure, humidity and temperature jump around hourly and the pressure in my head goes haywire, I will struggle more. No amount of wishing for rainbows and puppy dogs will change it.

Rare + Rare = Still Rare

Posted on by akiwifreund

Yesterday was generally a non-productive doctoring day for me. I went to see a neurologist in a different medical system outside of the ones that I have tried just to see if I could at least get an acknowledgment that what I’m dealing with is not that idiotic label “facial weakness” that the U of MN doctor put in my file. Besides trying to work towards a diagnosis, I’m also trying to build my case for disability, and I keep hearing my attorney’s voice in the back of my head saying, “If you don’t get a diagnosis by the time you are sitting in front of the judge, you’re screwed.”

The neurologist was very friendly and open, and definitely had the approach of working with me as part of a collaboration rather than dictating to me. However, we still had a breakdown in communication. She could not wrap her brain around the concept about why I have a shunt in the first place (and indeed is the same barrier for 99% of the doctors I talk to even though I explain to them that the shunts were placed because my symptoms improved temporarily after receiving lumbar punctures 12 hours apart). Almost all doctors incorrectly jump to the conclusion that my face is drooping because I’m overdraining – as if the fluid is pulling my face down with it, like I am living out a Salvador Dali painting. It’s easier for me to explain the shunts and the failures and the symptoms to people who have absolutely no experience with this world because they have no expectations and no preconceived notions (except for the asshole armchair “experts” who don’t know shit but think that watching a few episodes of “House” have made them suddenly intellectually superior).

Because this doctor had wonderful bedside manner, I made sure I took the time to assure her that her inability to give me a diagnosis or a direction was not her fault or a failure on her part as a physician. As a matter of fact, she was doctor #50 in six years, and I told her that too. The combined look of horror and chagrin was a bit comical. I gladly accepted her recommendations for a pediatric neurosurgeon (because sometimes they take the most complicated adults) as well as a rheumatologist she thought would have the best bedside manner, so all was not wasted on that visit. I also explained to her that I would be attending the national hydrocephalus conference June 16-19 being held here in Minneapolis and that I had t-shirts printed:

This week another one of our relatives passed away. His niece happened to contact me through 23 & Me, where I have an account set up after getting my genes tested last July; I wanted the cheapest way possible to get them set up in a database while I tried to figure out what is going on with my body and just how rare it really is. It turns out that this relative of mine has a daughter who is also super rare, truly one in seven billion! It’s so rare that they actually had to formally name it: Hemolytic Anemia Medicine Lake. The “Medicine Lake” portion of the name refers to the area that I and a large portion of my extended family grew up and lived in in the western Minneapolis area. Unfortunately it’s not in any way similar to what my problem is so I can’t go to the NIH and tell them to link our cases, but we definitely hit the rare disease lottery in this family.

By the way, universe, I’d like to win the LOTTERY lottery.

And I won’t be going back to this neurologist, as nice as she was, because she described herself as a “neighborhood neurologist.” She said that she was a step or two down from the facilities where I had been trying my luck, and this was way over her head.

What Does Love Feel Like?

Posted on by akiwifreund

Yesterday was my birthday. It was no big milestone – 42 – but it was a beautiful day, the sun was shining, I spent the day exactly as I wanted to, and my boyfriend gave me the best gift and in no uncertain terms let me know that he loved me completely. My fellow blogger’s use of the word “safe” is absolutely essential. I don’t have to worry about this boyfriend making my world unsafe physically, emotionally or financially. It’s such a damn relief. I love you, Saint Paul.

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + ++ +

“What does LOVE feel like Mommy?” Three days ago my daughter who just recently turned four asked me one of the most difficult questions anyone has ever asked me: “Mommy, what does…

Source: What Does Love Feel Like?

Would You Like Some Abject Poverty With That?

Posted on by akiwifreund

I left a message yesterday with my apartment manager regarding my lease, which is ending on May 31st. I had signed a notice and turned it in on March 17th indicating that I wished to stay another year when my lease expired, but I haven’t heard anything since then, and we don’t have many days left until the end of this month. I have a certain amount of money in my bank account from the sale of my car that I have been using for living expenses but I figured that if I was going to sign another lease, the apartment manager wanted to see proof of income or a certain amount of reserves in the bank, so I decided to call the administrators of my 401k to pull all of the funds and close it out.

The simple act of getting on the phone causes me anxiety. In all of the jobs I’ve held over the years, I used to field anywhere between 50-100 calls a day, so just know that that’s highly unusual for me to dread picking up the phone and try to figure out what to say without fumbling.

It’s also unusual for me to not have one or two or three jobs simultaneously. The 401k is my last lifeline and the only thing standing between me and homelessness. Right now I have to operate under the assumption that I will never have any money coming in ever again because I have no idea what the outcome of my disability hearing will be in 2017.

The call to the 401k plan administrators only took a few minutes. The first representative couldn’t confirm or deny which penalties I would be subject to, even though my CPA said that I could probably avoid a 25% and 10% early withdrawal penalties because of my indefinite disability status. A second rep – presumably the guy who did the calculations and released the funds – advised me that he had to take out a minimum of 20% for taxes and that I should set aside an additional 10% for penalties, all in a blaring and bored voice, as if he heard this stuff all the time, as if it wasn’t a big deal for me to have no other choice.
I have a few big purchases coming up. First, I have to take care of a crown and root canal completely out of pocket because medical assistance won’t pay for any of it. Second, I need a new bed; this one started to sag about five months after I purchased it last year because I spent so much time in it, but the store wouldn’t cover it under warranty because I moved out of state and the manufacturer would only cover a small percentage (this time around I’m going for the bargain Sleep Number C2 – no inner springs and it costs the same as a traditional inner spring bed). Third, I want to buy a different a/c window unit because the one that was provided with the apartment is gross and inefficient.

After those purchases, I will have to live off of the same amount of money slightly more than what workers make at minimum wage in the U.S. I don’t know how people do it. I don’t know how I’m going to do it. It’s not like I can go out and get more jobs, or a better job.

This is the song of our people. Poverty. Desperation as our bodies shut down, especially in my case (and others out there) when I don’t have a name to attach to it or a prognosis to go by. My counselor has told me not to think a year ahead and allow myself to be swallowed up by the fear of what comes after the money runs out, but how can I not think about that? My life is already so different than it was even just a year ago; I can’t even whisper the words, “How much more can I lose?” That’s like setting up a new dare to the universe.

Hanging up with the Merrill Lynch rep, he wrapped up the call with the requisite, “Is there anything else I can help you with?” The old, working me would have awarded him 10 points for asking the question. The new, disabled me wanted to tell him to suck my ass.

Stick It Where The Sun Don’t Shine

Posted on by akiwifreund

I rarely count myself lucky to have an alphabet of ailments, but this is one of those times – namely because I was offered the opportunity to try the Luxe Bidet Neo 185 in exchange for a fair and objective review for you, dear readers, through the Chronic Illness Bloggers network. As per the usual, please know that even though the product was a gift, all the opinions in this review are my own and I was in no way influenced by the company. I’m going to tell you that you can look away if you don’t poop, but since you and I both know you do, you might as well keep reading.

I B.S. you not, I suffer from some crazy IBS – irritable bowel syndrome. Sometimes I’m on a dead run from my bed to my toilet, which is a whole ten steps, because my bowels have decided they want to release the Kraken…again…for the fourth time in five hours. There are times when I have wished I could hose myself down after every episode. There are times toilet paper has felt like rows of shark teeth because I’m wiping my poor abused bottom for the umpteenth time. I think I responded within 30 seconds of this being offered to our group because I was wishing for it and it suddenly appeared.
2016-05-17 17.32.39

I am confident with putting mechanical stuff together, but not so much plumbing (though I did once take apart my kitchen sink in Phoenix). I talked my step-dad into installing this gadget when he was in town on babysitting duty with my mom for my nephews one weekend. We put a bucket under the water line after we turned off the water during the transition, which I strongly recommend you do as well. He asked me to note in the review that he wished that the part connecting the water lines was metal rather than plastic. In fact, this entire unit is plastic with the exception of the water line, probably to keep costs contained. It took him about 5-10 minutes to get everything set up correctly.
2016-05-17 14.16.06

Now for the good stuff! Wait, wait – I live in a really old building dating from approximately 1910, and who knows how old the toilet is (I didn’t look at the lid for a date), so just know that I thoroughly cleaned the toilet before photos. I take no responsibility for decades of filth and disrepair from previous tenants. It even looks like some half-wit tried to flush grout at some point, but there’s not much I can do about that. Onward ho.

When I told my step-dad that I would be including pictures with this review, he squealed with laughter. I think he was disappointed when I sternly said I wouldn’t be posting those pictures. But then he squealed again when we discussed the fact that the water was coming directly from the pipes without being heated first.

So here’s the logistics: I’ve included a copy of the card with the instructions because I had to read them a few times myself first before using the Luxe Bidet Neo 185. It can be a little intimidating to have something pressure washing an area that only a few boyfriends and GI doctors have had intimate knowledge of. After the first few tries, you shouldn’t need a queue card.
2016-05-17 17.33.19

Basically, the “second nozzle” in this scenario refers to whether or not you are a girl person and your parts are located in an area that would benefit from a nozzle that reaches forward further than the other one taking care of the brick layer.

For my first sit-down, I was a little scared. I knew that water would be chilly. There was a good chance my apartment neighbors would hear me whooping and hollering from the startling freeze-out of my back door. I’ve been trying to think of the best way of describing it, and all I can come up with is that it feels like someone is trying to suddenly and quickly stuff freezing cold cotton balls up my keister – maybe Lucille Ball or Carol Burnett were somehow acting out a skit with my hiney as the punchline?? All I can say is that you just need to rip the band-aid off and get through the initial try, because you’ll get used to it.

As far as the “second nozzle” and girlhood goes, I found that if I sit upright, it doesn’t do me much good. However, if I lean forward, then more of my bits get cleaned – but again, with the shockingly cold water.

Look, this does the job. I really have gotten away from using those demon “flushable” wipes. They have been deceptive with their marketing. Entire communities are becoming backed up because Charmin and Cottonelle and their knockoff competitors have created these heavily perfumed wipes that don’t actually disintegrate when they’re flushed; besides that, your parts don’t fare well with all of that perfume hanging out on your bits. I am trying not to be that person in my very old building who clogs up the pipes (though I have managed to collect everyone else’s hairballs in my sinks and tubs and plumbers have made numerous visits here). I have sent these wipes packing like ex-boyfriends that I have also grossly misjudged.

Back to the bidet. Here is what it looks like with the lid closed:
2016-05-17 14.15.54
The device is actually installed so it is attached between the bowl and the seat so it stays secured:
2016-05-17 14.16.38

As promised, I did not take pics of the bidet in action on my tushie, but I did take pics of the “nozzle cleaning” mode:
2016-05-17 14.18.09
(Where the bubbles appear in the bowl is where the water is shooting out of the water feed, presumably so the nozzles can have “debris” power washed out.)

If you are interested in purchasing this product, it is offered where anything in the universe is offered, on Amazon (and don’t forget to select your favorite charity through smile.amazon.com so that a certain percentage of your purchase is donated by the company every time): http://www.amazon.com/dp/B00P2XZDGG

You can also go directly to their website for any product information: http://luxebidet.com/

I have to say that I will be trying to hang onto this product for as long as I can.

Waiting For The Mother Ship

Posted on by akiwifreund

Last Wednesday I went in for a procedure that was new to me, and quite frankly, I didn’t hold out much hope for as far as its success rate went. It was a transabdominal plane (TAP) block. My pain doc, who is fairly close to me in age, very serious, sober, and I suspect severely depressed, hoped this TAP would stop the nerve pain that I get as a result from the allergic reaction to the drainage catheter that winds around my abdominal area. He thought my pain was from my abdomen being cut so many times from all of my surgeries. I indulged him because quite frankly, I’ve got nothing better to do.

When I arrived at the outpatient surgical area, I changed into the ugliest shit brown gym shorts ever, and got a matching pair of shit brown hospital socks with rubber grips for fall prevention. No way would anyone willingly steal these digs (with the exception of one lovely elderly lady who declared them exceedingly comfortable, I was told). I had three nurses ranging in age between 50 and 68 (I’m guessing), all slightly fussy and calling me honey, and addressing me in a loud volume with small words as all surgical nurses are accustomed to doing when coaxing patients out of anesthesia. I was awake and responsive the whole time, but it’s hard to break a habit that takes decades to build.

We discussed all of the yellow on my chart – meaning all of my allergies. We settled on a chlorhexadine scrub rather than a betadine solution to prep my abdomen because of my allergy to shellfish. I watched as my doctor put a long sleeve on the ultrasound paddle that would help guide the needle that would deliver the meds, as he rolled it down and secured it with a rubber band, and I asked, “Oh, is that an elephant condom?” The nurses twittered and the doctor chuckled. Then the nurses got in on the game and tried naming a few other animals with especially big penises. Then we got serious again because it was time to stab me.

The doctor applied some ultrasound gel and pressed the paddle to my abdomen. The nurse at my head put her hand on my shoulder and I closed my eyes. My doc warned me that I would feel the poke and burn. I focused on my heartbeat and forcing it to beat slower, and as if from far away, I heard the nurse say close to my ear that I could squeeze her hand if I needed to. I whispered “No” and refocused again on my breathing. I could hear my heart on the monitor slow down. The doctor said something about enlarging the picture, then needing more “puffs,” and then he finally said he was done and he was going to withdraw the needle. I opened my eyes and my heartbeat increased again, and I saw him pull out a needle that was about four inches long that was attached to a wire.

We did it all over again on the other side: gel, paddle, breathe, focus, heart rate down, needle, pain, puffs, out. I had to have paper tape with gauze over the insertion points because I would have been allergic to what they usually use for gauze pads. The doctor told me afterwards that he had never seen anyone’s heart rate go down as he was inserting the needle and the meds – usually the opposite happened. I told him that I learned a few things from meditation.

I didn’t pay it much mind, but almost immediately, I had developed hives at my insertion sites. I was supposed to keep the gauze on for 24 hours so I didn’t see the hives until the next day. As far as pain relief goes, I didn’t feel any by the time I received a call at noon, but I noticed I had some at about 5:30 that night. However, by Saturday I was laid low by pain again. I emailed my doctor and his nurse to let him know about the hives as well as the ineffectiveness of the block. The hives did not appear across the entire area that they prepped so I know it’s not a reaction to the chlorhexidine – at least I still have that as an option.

If my doctor is depressed, I can understand why. I would feel the same way if I had patients like me.

And whatever this new allergy is, it’s really just another sign that I’m not a native to Earth and that I need to send a signal flare up to the mother ship to scoop me up.