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.
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.
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…
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.
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.
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.
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.
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:
The device is actually installed so it is attached between the bowl and the seat so it stays secured:
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:
(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.
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 downas 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.
Twitter’s 140-character limit forces people to spend a little more time thinking about and crafting their tweets. The task is made all the more challenging when including a photo or link, which, respectively, counts as 24 and 23 characters. Bloomberg reports today (May 16) that the social network plans to stop counting photos and links…
I woke up this morning to a message that was sent to me around midnight telling me, “I know you were friends with Bart [not his real name]; just wanted to let you know that he died after a confrontation with the police Wednesday morning.”
I wasn’t awake to chat back and forth, so I had to do some searching of news articles when I saw the message. There was actually quite an extensive write-up as well as video clips so I was able to get a complete picture from the law enforcement’s viewpoint of what happened.
The hard part was seeing pictures of his dwelling and recognizing the side of his building. Bart was so proud of everything that he did to fix his place up. I still remember walking through his door and smelling his split pea soup.
Bart and I weren’t close friends; in fact, the person that notified me of his death had known him decades longer than I had and was the reason we had become acquainted. But we had gone to the Renaissance festival as part of a big group, and we always ended up attending the same get-togethers. Bart was friendly and jovial, though he definitely had issues with drinking too much. He also could not control his impulses or anger; this certainly fed into a never-ending cycle of joblessness and financial uncertainty.
From what has been published in the stories online, he got a DUI on Friday night and was sent home in a cab rather than sent to jail. On Saturday night he drove by a deputy and shot him and prompted a manhunt/search. On Wednesday morning the sheriff’s department knocked on his front door and he shot himself.
The county sheriff is proclaiming this man to be an obvious participant in the bigger war on cops. I’m calling bullshit on this. Bart was in an all-out war on his own life.
Did he drink to get drunk? Always. He couldn’t get together with a group without drinking. When you’re middle-aged and you’re drinking every weekend (and I am guessing for him, every day), it’s obviously a problem. He tried his luck with dating, but he was always stuck in his 20’s there too, referring to women as girls and only taking pictures with the pretty random strangers with their boobs propped up, never really being less than insulting. Bart was a smart guy and had loads of certifications and degrees in the tech field, so he should have had no problem with landing well-paying jobs. In fact, when I was laid off, I visited his place and we chatted about our resumes and wages, and I was quite impressed with his in both areas – he could have afforded to buy my house two or three times over with his salary. But Bart had done and said so many crappy things in his workplaces that he had been blackballed in his current state, and finding work out of state was proving to be just as difficult.
The friends who were much closer to him had relayed stories about how in recent years and months, he would suddenly become angry and take off, or disappear for hours. If they were all out of town for a trip and following each other in their cars, Bart would somehow manage to leave the caravan and insist on his own route and get completely lost. He would become belligerent if anyone tried to reason with him.
Not that this means a whole lot, but he and I used to debate his support of Trump as a presidential nominee. Bart definitely had prejudices against people who were anything except white middle-aged American men.
So here is this guy who is doing everything he can to make his own life as terrible as it possibly could be – ruled by alcohol, void of love and understanding, built on a foundation of fear and ignorance. He shot another human being because he wanted to blame someone for something. He shot himself because he saw no other way out of the pit he dug.
I have a hard time thinking about him no longer being on this earth. I saw the destructive behaviors in him, but Bart was mostly friendly towards me – maybe because I didn’t have a long or involved history with him, or because I knew exactly what to expect. I hope that now his soul is finally at peace. I think about this often, especially since death seems to be around me a lot more this year, and I wonder if souls review their lives and their lessons like I think they must. (I hope that Bart can see the humor in me saying that my wish for him is to finally understand why Trump would make a terrible president.)
In fact, I wish I could interview all of the people I knew who crossed over in the past ten months and ask them what they have learned. What were they surprised by? What was the biggest reveal? Was it all worth it, taking on this human body and signing this contract?
Sometimes nostalgia makes us remember things incorrectly, or forgive those who did us wrong. Sometimes when we re-watch movies we thought were once great, they fall flat and we figure out we should have just remembered them fondly instead of watching them one last time. I’m talking about “Bed of Roses,” people. Christian Slater was trying to soften up his image a bit after going through a darker phase (“Heathers” and “Pump Up the Volume,” anyone?), and Mary Stuart Masterson was trying to transition into more grown-up roles. Hell, I was trying to transition into more grown-up roles myself when this movie came out.
“Bed of Roses” was released just as I got my first job under the general umbrella of real estate, specifically for me in title work, throwing me into a 20-year career path. It was also the birth of my dating life as I never experienced it before. Men were actually pursuing me. One of them was an assistant to a very successful real estate agent who used my team for closings. I will call said young man Mr. Sweater (to be explained later). Mr. Sweater was a fast talker, demanding but charming, drove a BMW, tall, and good looking in an Izod-Polo-Gap kind of way. He asked me out, and I accepted. We went to see “Bed of Roses” and then went to eat at Albuquerque’s infamous Rainbow Cafe.
At the cafe, Mr. Sweater ordered me a fruit torte just to “watch my mouth” as I ate it. He talked about how he wanted to fall in love with a woman and send her thousands of roses and buy out a city. I talked about Jann Arden’s song “Insensitive” and that I recognized the song in the movie because I already owned the CD, and Mr. Sweater nearly danced on the table, asking if he could borrow it so he could memorize all of the songs like I had.
Apparently it didn’t take much to get in my pants, because we had sex to close out that first date. I don’t remember much about it, that’s how unremarkable it was. No fireworks. No heady thoughts that I had found my soul mate or that he suddenly cared about me. I certainly didn’t expect to have thousands of sterling roses show up on my doorstep. I did leave some CDs with him, though. My music has always been precious, and for any of you who grew up pre-MP3s, you know how difficult it sometimes was to replace stuff once it was gone (for instance, it took YEARS and YEARS to replace an imported EP of Nine Inch Nails “Get Down Make Love” that a friend gave me from England after it disappeared with an asshole ex who felt entitled to it). I expected to get the CDs back because we talked about future dates – they were definitely on loan, not a gift. The CDs included Jann Arden’s.
This is how different we were in our approaches: Mr. Sweater had a very idealized way of thinking about love and how it should look like a Hallmark commercial; I thought he should treat me like I am a living, breathing human being. Whenever I didn’t act in a way that he wanted me to, he would immediately get pissed and chastise me. Mr. Sweater was all about status and money. It was exhausting for me, because I’m the opposite. I mean, sheesh, yes, I LIKE money, but we seem to not be able to spend much time together – it’s more like a distant and divorced relative. Mr. Sweater would always talk about how much one article of clothing would cost, and I would say, “Gosh, that’s an entire month of rent for me.”
We were doomed. We barely had much in common bringing us together in the first place – in fact, that first date was our last, even though we talked on the phone many times after that. But the final straw was him talking about spending $350 on a sweater and then buying a very high-strung cocker spaniel for $800 (both in 1996 dollars, not adjusted to 2016 dollars). Said dog chewed the hell out of said sweater when Mr. Sweater imprisoned the dog in his apartment and barely took him out for a few minutes at a time – the dog was going fucking crazy. I finally laid it out for him and said, “Hey, how about if you stop talking about how fucking expensive everything is? That’s all you ever talk about, and it’s boring. By the way, take care of your dog or he’s going to keep acting out.”
That didn’t go over so well. Mr. Sweater kept talking about how important the price of the sweater was, and that I just didn’t understand because I didn’t own anything that expensive. From there we quickly progressed to “Fuck you” from both sides.
The problem was that he still had some of my music. That included my precious Jann Arden CD. Why didn’t I just go out and get another one? Well, besides music not always being easy to find (especially a Canadian artist in Albuquerque), I was also on a very tight budget – sometimes I only had $10 a week for groceries. (As a side note, my menu for weeks was 1 bag frozen veggies, 1 can cream of whatever soup, 1 bag cooked white rice, 1 can tuna, and I mixed that up for an entire week and a bowl was either my lunch or dinner – nothing else). For a week and a half, I asked him to bring my music back. Finally one night to shut me up he threw everything in a box and put it at my door located at the back, knocked and then ran. My roommate opened the door while I opened my window and yelled out the front, “YOU AND YOUR SWEATER CAN GO FUCK YOURSELVES!”
Yeah, not my best moment. My roommate had no idea the drama that was unfolding under our roof, and she certainly didn’t expect me to yell expletives out the window like we were living in Hell’s Kitchen on a 5th floor walk-up. One date. One lousy lay. Days and days angst over a guy who didn’t have a clue about how to truly invest himself into a loving relationship. I mean, how could he be so…insensitive?
“Bed of Roses” is available now so you can watch it on Netflix like I did this morning. It feels kind of lackluster, and I’m not really sure if it’s because we’ve seen better scripts come out since then, or if it’s because I know what it’s like to be in love and it’s not just about reciting a bunch of lines and hitting your marks and buying out an entire city’s supply of purple sterling roses. In fact, I’m pretty sure it’s not about the grand gestures. It’s about my boyfriend seeing my face and knowing that I either need to sit down, lay down, or be done for the rest of the day – even if it’s 2 pm. It’s about being able to let down your guard and have your inside jokes and sacred space, and celebrate laugh lines and hold each other through vulnerabilities.
The Jann Arden song that was in “Bed of Roses” was actually quite fitting for Mr. Sweater – Jann, seriously, did you know that guy?? I wonder if he ever figured it out or if he is like countless other men who are still stuck on empty.
The Sick and the Dating 