datingwhilesick

Happy Anniversary

Posted on by akiwifreund

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
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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:

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.

Grief and Acceptance

Posted on by akiwifreund

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

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Wendy's avatarPicnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The The British Journal of Psychiatry Nov 2008, published a study on grief and acceptance.  The authors note that “disbelief, yearning, anger and sadness may represent aspects of a single underlying psychological construct – grief.”…

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Careful, Your Old Is Showing

Posted on by akiwifreund

This afternoon I had the opportunity to spend time with my cousin’s daughter. We connected at my uncle’s funeral; the last time I saw her was when she was 3 or 4, and now she’s 24.

Over and over, this meme flashed in my head:
40Now

Here are some of the milestones I hit by the age of 24:
– Moved out at age 16
– Worked two jobs since age 18- Moved to Michigan, New Mexico, Kentucky and Ohio
– Road tripped around the U.S.
– Lived with my first boyfriend

I found myself saying those dreaded words, “When I was your age…” and I cringed every time.

In contrast, this young lady has been living with relatives and doesn’t work or currently attend school. We spoke about what she envisioned for her future, which included dreams of working at a bookstore or a movie theater. I prodded her into thinking bigger – after all, bookstores are becoming obsolete, and movie theater jobs are really more for high schoolers. She admitted that what she really wanted to do was travel the world and learn as much as she can. Thank goodness! That I can work with. I told her about how The Professor works at a law library on a college campus, and we agreed that a library would be a perfect environment for her. She would be surrounded by academics and wouldn’t be required to ask patrons if they would like to upsize their sippy cups for another $0.50.

Another area that I thought would be great for her (before she and I even had a chance to sit down and talk, but she brought up this afternoon) is the tech field. There is still a huge disparity of ratio of male vs. female tech employees and it’s a field that does not often require customer service interaction with the exception of level one support. There are so, so many degrees and specialties in the tech area that she could go into that really, she just needs to pick one and it should not be difficult to make a living.

So again, here is the whole closing a door/opening a window business being demonstrated in real life: I can’t work, but that doesn’t mean I have completely lost my value in this universe. I think I can successfully mentor this young woman and hopefully send her off into the world with some practical skills so she can do the things she thought were only a dream previously.

Did I Or Didn’t I?

Posted on by akiwifreund

Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Saint Paul remarked upon the sheer volume of medicine that he could see displayed in my bedside drawers, something that started with “Wow.” I told him that the one drawer that was open as well as the bottles on the surface were only the half of it and that the other two drawers were filled as well. Of course, I don’t take them all every day; some I keep because I know they might come in handy later. Truly, though, I go through about 45 pills per day thanks to my prescriptions and supplements.

The makers of PillSuite (http://pillsuite.com) were kind enough to send me their product to give it a whirl. I received a sorter, two rolls of sealable baggies and a sealer. 2016-03-27 11.40.02I chose to load up my midday pills, which are only about seven in number but are the largest in volume. When I looked at the sorter, it seemed like the compartments could only handle these seven, and I was right.

The baggies are biodegradable and can be written on with any sort of note you choose to write; I recommend a fine-tip permanent marker.
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After you snap the lid onto the sorter, you flip it over so the funnel lines up into the open end of the next plastic baggie to load up the dosage.
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There was just enough room to get these horse pills into this baggie, just like there was just enough room in the compartment.

Next, the open edge of the baggie is pushed to the back of the sealer and the big button is depressed for 3-5 seconds, which seals the baggie shut with a fine line. The red indicator light shows that the sealer is working its magic and closing off the baggie.
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After that is done, both ends are completely sealed, and your meds and supplements are ready for transportation.

When you are ready to consume them, there is a perforated end that can be easily torn open.
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Here are some advantages to using this product:
1. You bet I like the fact that the baggies are biodegradable! I’m always worried about how much I consume and add to the demise of our resources because it’s not easy for me to do things that able-bodied people take for granted. Check out this episode of In Sickness + In Health podcast (http://www.insicknesspod.com/blog/2016/3/8/23-when-sus).
2. I can write anything I want to on the baggies. I can indicate the medication names and dosages, or I can indicate the time of day the pills should be taken, or I can remind myself to take the contents on an empty stomach an hour before eating, etc.
3. This is a great product for traveling. Sometimes I have appointments that require a lot of time for me to be away from home, and it would be a lot easier to slip one of these baggies in my purse than it would be to take a pill sorter or an actual bottle (or seven) with me. This would be pretty handy for a short trip as well. The only time it wouldn’t work is traveling outside the country; TSA requires medications to be in their original prescription bottles when traveling outside the U.S.
4. This takes the mystery out of whether you have missed dosages or not, especially if you have scripts or supplements that are taken 3-4 times a day or you have to stagger everything according to a full versus an empty stomach. I have yet to see a pill sorter that has enough compartments for all of my dosages.

One disadvantage for me? My evening dose of meds and supplements actually adds up to about 25-30 pills and capsules – the seven that you see here, plus a bunch more, depending on how I am feeling. I would actually have to fill two compartments in the sorter and therefore two baggies for the nighttime dosages.

Ordering additional “suites” as the baggies are called is impressively inexpensive from http://store.pillsuite.com/.

Lemme Tell You a Wake-Up Story

Posted on by akiwifreund

Warning: Adult Language

The Shit Theory

Nashville (https://thesickandthedating.com/2016/01/18/i-saw-another-ghost/) sent me messages saying, “I’m sorry, please don’t be mad at me.” When I asked him why he ghosted me, he just said, “Don’t be mad” again. He “hates to fight.” Then he said he didn’t call me back for a few weeks because he “had his dog.” Zero explanation, unless that dog dials his phone for him. No response at all to my repeated asking of why he disappeared. I even resorted to saying, “Did my infection make you uncomfortable?” I mean, seriously, I would say the words for him if he couldn’t. But he couldn’t even respond to that. So I told him that if he can’t communicate with me, then there’s no point in seeing each other anymore.

I know he’s sleeping right now because he wakes up right before he has to go in for his third shift hours. When he wakes up, if he gets all whiny again, I’ve decided I’ll have to lay the shit theory on him. It’s something I’ve thought up just this afternoon that I think will explain what I see happening and what I think he needs to do.

Most of us who have had chronic illnesses for years (or even decades) are familiar with the “spoon theory” that a very clever woman came up with on the fly to teach her good friend about what it’s like to have a chronic condition that greatly affects the quality of life. Sufferers have even self-identified as “spoonies,” which makes it hella easy to find each other online.

I don’t expect this theory to find the same fame, but it would be funny if it did.

Okay, let’s say Nashville got up from a full 7 hours of sleep and did his business in the toilet, including a #2. (I know dudes are super regular like that, all of them that I’ve lived with are like clockwork.) But instead of flushing his shit down the toilet, he reaches down into the bowl and picks up the shit. He looks around the bathroom, and then he starts smearing. He gets a good amount on the floor and the shit cakes up a bit in the grout between the tiles. He also goes for the walls – big smears, maybe some letters. He even saves some shit for the sink and the dookie gets into the joints of the faucet handle. Nashville stands there for a minute, looks at the shit on his hands and fingers, and then yells for me. I come to the door, take one look and I say, “What the fuck, Nashville? Why did you smear shit all over the bathroom?” He says, “Don’t be mad at me. I have to go watch my dog wag her tail.” I say again, “Why the fuck did you smear shit all over every single part of the bathroom instead of just flushing it down the toilet like a healthy person?” Nashville says, “I don’t want you to be mad at me. Can you stop being mad at me? I love my dog.”

Nashville (as well as many people in general) claims he hates chaos. Chaos = shit, in this story. He could have just flushed the shit down the pipes. In other words, if you don’t want chaos, then don’t bring it into your world. You have a choice. If you choose to reach down into the bowl, cradle it in your hands and start smearing it around, it’s not okay to 1. Keep doing it until it’s in every nook and cranny of your life (no matter how much you B.S. yourself that you’re keeping it separate), and 2. Ask for someone to clean up the shit that you chose to spread. Certainly don’t ignore it (as Nashville did when he ignored my questions). All it’s gonna do is dry where it sits and be even harder to clean (aka all I’m going to do is get pissed, and he’s STILL going to have to deal with it). Sometimes a person has to hire a plumber (psychiatrist, psychologist or counselor) to help figure out clogs in the pipes (brain), but it’s better to take care of that sort of thing before the problem becomes completely out of control.

So, Nashville, the moral of the story is: Clean up your own shit.

The End

 

 

Are You There, God? It’s Me, Chelsea

Posted on by akiwifreund

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.

http://www.huffingtonpost.com/the-establishment/nobody-catcalls-the-woman-in-the-wheelchair_b_9130226.html

 

Crouching Tiger, Hidden Creeper

Posted on by akiwifreund

I’ve been on an opera kick this week. Puccini is my absolute favorite composer, so I’ve had that station going all week while I have read articles, organized my taxes, and for the first time have colored in my “adult coloring book.” I’m a little slow on trends sometimes.

I often don’t understand the meaning of the songs because who here speaks fluent Italian? Not I. But it certainly adds a little flavor to my tasks. Also, it’s the funniest thing to run across some slow-motion films of dogs wiping out in the sand or attempting and failing to catch treats or toys in their mouths – so dramatic when Maria Callas is wailing!

I was feeling very passionately that my OKCupid profile needed another revamp. Guys don’t care what I’m doing with my life or which books I’ve read or if I know all of the cool places to eat. They just want to know if I will go hunting and fishing with them (welcome to Minnesota) and if I can hook my ankles behind my ears. So I took all that crap out. This is what my profile says now:

MY SELF-SUMMARY
*******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
– Bad behavior and excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap
– Republicans
– Being called “cutie”
– Organized religion or prayer

The most private thing I’m willing to admit

I don’t get out as much as I would like to because of some major health issues.

You should message me if

– 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 know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.

Almost immediately after posting these bullet points, a guy hit me up and said I was hilarious, and unfortunately, he was a hardcore Catholic and a Republican – but he really appreciated my sense of humor. We ended up having a really good chat through the site. He talked about his daughters, and how one of them was living with him as well as a nearly 2-year-old grandson. We chatted about the intricacies of finding and keeping a job that could pay the bills without the need to add another job. We talked a little bit about my disease and how it affected my ability to be social.

In all, a respectful, flowing conversation happened. Then I got an unexpected but very welcome call from my close friend in Arizona, and told the guy that I couldn’t chat because of the phone call. He said that was fine and posted his number, and I replied back with mine. He asked if I would be interested in a date. I thought what the hell, if we get along, we both could include each other in our circle of friends.

My call with my friend was pretty lively. She told me about the difficulties she had with men she had dated (or really, had minimal contact with) who kept calling and texting, even though she wasn’t interested and told them so. She told me how one had briefly been a professional MMA fighter, and took it upon himself to put her in a choke hold and then forced her to the floor. Another was a guy who couldn’t seem to accept the fact that she had gotten into a relationship with someone else instead of him, and even agreed to a double date so my friend could introduce him to our other friend – until he realized that my friend was also bringing her boyfriend.

My advice was that she must use small words and tell them why she is cutting them off, and then cut them off. First, they are not respecting her boundaries, and she does not owe them anything. Second, she needs to get her mind out of the space where women are required to be people pleasers and make sure they don’t anger men. That anger rears its ugly head when men think they are simply entitled to women’s bodies. How dare we reject them?

After we ended our call, I texted the dude and apologized for taking longer than I had planned. He called me “cutie” with a smiley face, just to piss me off. The next thing he did was tell me how beautiful my eyes are. I thanked him and told him I appreciated his complement, but I put more value in values than I do appearance. We discussed options for activities where I wouldn’t be up and out for too long (hopefully longer than a high five).

And then Hidden Creeper came out.

I was trying to discuss meeting places with him, and he kept talking about my appearance and how “cute” I am and that he just couldn’t help it. Then he asked me if he could kiss me.

In my head I was saying, “Hold on there, buddy – where in the hell did this come from, Mr. I’m-a-Hardcore-Catholic?” It doesn’t take a rocket scientist to figure out that him talking about kissing me is his code for testing me to see if he can go balls deep. It happens all of the time.

I told him that if we both felt attracted to the other person, then sure, we can have a smooch. But I also told him that I didn’t want to discuss it further, because it has been my experience that if all you do is talk about what you want to do with the other person once you have entered their personal space, and then you actually meet, it doesn’t end well. Sometimes there’s no attraction from one or both parties. but then they feel obligated to ______ because it was talked about. I told him that I wanted to make sure we’re not getting ahead of ourselves.

He replied with, “Ok sounds good” and then stopped texting me. So I still have no idea if this date is going to happen, but my guess is that it won’t.

I feel the change in personality happened as soon as we started communicating off of OKCupid and that is because he knows I could easily block him there and he would have no idea how find me. Luckily I can push his calls and texts to spam if I get some on my cell, but he doesn’t know that. I just feel sorry for his daughters. He revealed to me that his oldest daughter moved back in with him because she’s 24, has a 2-year-old, is kind of lost, and the baby’s daddy is an asshole who took off. I want to shake him and say, “He took off because you didn’t teach your daughter how to value herself, or she may never have let him in in the first place.”

Being able to look at everything and process it in a much healthier way than I have in the past is my present to myself. I’m not perfect, but I’m getting better. I wish everyone else luck, would like to remind you that it sometimes takes effort to get on the right track, and keep holding yourself and other people accountable.

Talk To Your Doctor About Your GD ED

Posted on by akiwifreund

A week or so ago, when I was being driven to my daily appointment to get the dressing on my wound changed, the cabbie asked me if I was single. He was Somalian and he told me how if I visited his village, I would have many offers of marriage within the first hour. In his culture, it’s important to visit your neighbors and check on them. They value personal bonds. They also obviously have a serious gossip network, which explains why everyone would know I’m single in a very short amount of time. I secretly wondered if I could demand goats as my bride price.

I didn’t ask, but I wondered if he was mistaking me to be about 10 years younger than I am – that happens often. I think that the paralysis of my face actually works like Botox gone bad. I also didn’t tell him that I am not able to have children (thanks to my hysterectomy 5 years ago – BEST DECISION EVER). That aside, I’m already at an age where bearing children would be very risky. I didn’t bring up the fact that I’m also completely bald, as I think that would be the last on a long list of deterrents.

I was hit up by a 24-year-old on OKCupid today asking if 24 was too young. I wrote back that it was. It’s another somewhat terrible reminder that I am middle-aged.

Another reminder that I am middle aged: I date middle-aged men. I seem to have hit the bubble where their penises don’t stay hard or even get hard. We get to the awkward point where they are trying to shake the shit out of their dicks to force the blood to go down there, or they are trying to stuff their very soft unit in me and get pissy if it just flops out.

Then they blame me. I’m “too excited.” I’m “in the wrong position.” My “legs aren’t the right length.”

Physiologically, I am not the problem. I’m 5’5″and not considered short. Even though I had a hysterectomy, I kept my ovaries, which means that my hormones are still coursing through my body – I haven’t gone through “the change” yet. Believe me when I say that I am more than sufficiently able to welcome a foreign object.

What’s the problem with these guys? Well, weight is an issue. I fully acknowledge that I am overweight, and I notice the difference in my ability to perform bedroom gymnastics according to how overweight I am (my weight fluctuates). These guys are sporting the full pregnant belly, though. I imagine a big elastic band resting at their hips, cutting off the blood supply.  They also huff and puff from the effort; I often have to ask if they are getting tired and if they would like to change things up.

One guy was overweight (6’1″ and over 300 lbs) and insulin-dependent. Diabetes affects blood flow greatly – that’s why doctors recommend that diabetics stay away from pedicures. Any tiny nick to the skin could cause a huge wound because a lack of blood flow stymies our body’s repair mechanisms. So, yeah, his penis was definitely having blood flow issues.

I hate the smell of cigarettes and I’m allergic to the smoke, but smoking also affects blood flow to the extremities.

Some men are very accustomed to jacking off to porn. It’s alarming how much they abuse their poor penises. It’s like angry jacking off, or jackrabbit fast. There’s no way my very human body is going to be able to replicate that. It gets to the point where the men only respond to this violent kind of touch. One of my exes was a smoker AND could only do the jackrabbit thing, so when he was ready, I just had to make sure my arms and legs didn’t touch him so he could pound away. You know in movies when EMTs or doctors are trying to use the paddles to revive a patient and they yell “Clear!” to make sure no one is touching the patient when the current goes out? That’s pretty much what I had to do for the jackrabbit guy. Clear!

So guys, talk to your doctor about your goddamn erectile dysfunction. You might hear something you don’t want to about lifestyle changes. But if you want to screw like that 24-year-old who wants to bang me, then you might have to make some changes. Hell, the rest of your body may feel better too.

If you’re not willing to put in the work, then learn how to do other things that don’t involve the penis.

Don’t ever, EVER, blame me for your ED.