Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Dude, You’re Stepping On My Personal Space

I wrote this article for Patient Worthy on February 14th; since that day I got daily (sometimes twice daily) texts from this guy saying, “Good morning cutie” or “sweet dreams cutie.” The most recent ones – because he still won’t stop – say “Just got to my hotel” and “How are you?” For the life of me, I can’t figure out why he would bait me with the hotel remark because that one really came out of the blue. I haven’t traded texts with him since February 10th. Was the hotel text his clumsy attempt at a booty call? Or was it not intended for me, and instead should have gone to whomever was playing the part of his dirty little secret?

Dude, just…stop.

Boundary Waters and Dating Boundaries

Change Your Password, Change Your Life

For about 20 years, I have not used easy-to-guess passwords, and I think it’s probably because I lived with a nerdy guy who introduced me to the world of computers and the world of corruption. I can still hear his voice in my head telling me to make sure my password isn’t easily guessed, and how he demonstrated the swiftness with which passwords were cracked.

I did the same thing as this guy in the article: I saved money for my European trip when I changed my password to one that reminded me to save money for my trip. I bought new shoes. I got rid of a bad friend. I got brain surgery – 10, in fact. I remembered my first loves and continue to date, because if I found love before, I can find it again.
So decide what you want, and then make a password to match it. My guess is that you will have to use it at least one to two times a day, and what better way to remind yourself of what you should put energy into than to punch in a password?

http://www.today.com/health/how-password-changed-one-mans-life-better-1D79878606

When Life Hands You Lemons

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend

Valentine’s Day is 80% Off

10363795_461119117413686_8488688079924407159_n

I’m going to do a little update on Walks with Wood (https://thesickandthedating.com/2015/06/10/hello-world/) because as I stated before, I snoop to keep track of exes. Though he and I no longer live in the same state, he did try to contact me out of the blue at the end of March of 2015 because he wanted sympathy for driving drunk without his seat belt and crashing his car (and his head in the process).

OLYMPUS DIGITAL CAMERA
Diamond Dust Necklace (I’m assuming. He claimed he spent “a lot” on it.) WwW gave it to me on Feb. 11, 2015.

So this is their post confirming one year:

WWWandOphelia

The last time we saw each other was February 28th when he showed up late and drunk. Either Ophelia has no idea there was an overlap, or she has forgiven him because he is a project to fix. Either way she has not had it easy; he told me his friends assumed that I was ugly without even meeting me. That didn’t exactly endear them (or him) to me. Maybe they are kinder to her because she was already part of the circle.

In other news, Walgreen’s has all of their candy on deep discount. Unfortunately, just like my love life, I am being forced to clean up my diet before it maims or kills me, so no sugar, soy, gluten or dairy. Welcome to February 15th, where the chocolate is 80% off, and so are the relationships.

‘Scuse Me, My Kitty Would Like to Get Stoned

My ears perked up when I heard that this was a real product being marketed. They calmed down again when I realized that since Minnesota has the strictest laws in the country regarding medical marijuana that it’s likely I won’t get my hands on any until maybe a decade from now.

The problem: I have horrific abdominal pains because I’m having an allergic and autoimmune reaction to the drainage catheter of my shunt. I’ve had this pain since July 11, 2011, the day my very first shunt was implanted. The neurosurgeon saw the inflammation with his own eyes during one of my subsequent surgeries.

If it’s a good day, I can’t bear to have my abdomen pressed on. The last time my PCP prodded my abdomen, I had tears leaking out of my eyes – and not because I am conjuring the pain up. I also have issues with using the bathroom no matter what is coming out of me. I can only tell you that it feels as if someone has inserted a knife into any and all of my openings and is waving it around like it’s a #1 fan hand at a football game. If it’s a really bad day I also have waves of pain rolling over me. One time I was crossing the street to go back to my apartment and my sister was helping me carry a few items, and she heard me gasp as if I witnessed a really bad accident. Nope. I just was suddenly overtaken by the stabbing pains. And there’s just no way for me to predict when I’m going to get hit by an 11 pain (because according to Spinal Tap, that’s the loudest). Could be because I’m breathing.

The solution? I’ve been told I will not be given opioids because they would just mask the pain. (My answer is always yes, please, I would like to not have the pain.) Tylenol, Advil and naproxen sodium are child’s play. I’ve also been put on various anti-depressants and gabapentin. I’ve tried ice or heat. I’ve tried stretching out my hips. Meditation is probably good for something, but so far has not made me feel better about having the stabbing pains.

This product is being marketed for women with pelvic pain that is the result of endometriosis and/or menstrual cramps. I wouldn’t even have to consume something, just insert that capsule like a suppository for the kitty and then lie back and let it do its thing. If it can work for those issues, why can’t it work for my stabby-stabby pains? Maybe I wouldn’t dread going to the bathroom too. Sexual relations? I would say hell yes, it probably will give new meanings to “420-friendly” and “Netflix ‘n chill.” I can just see the Craigslist ad now: “Fun lady with a great sense of humor looking for my partner in crime to experiment with my totally legal 420 vaginal inserts. Bring some Funyuns, just in case.”
http://www.kevinmd.com/blog/2016/02/vaginal-marijuana-menstrual-cramps-really-work.html

 

Hannibal

This fear of cannibalism could explain why some dates have cancelled on me in the past few months. Seriously, just because I believe in feminist values doesn’t mean that I wish anyone ill will. On the other hand, fava beans and a nice chianti…

http://www.cnn.com/2016/02/15/us/seattle-aquarium-octopus-mating-canceled/index.html?sr=fbCNN021516seattle-aquarium-octopus-mating-canceled1054AMStoryLink&linkId=21272696

You Spin Me Right ‘Round, Baby, Right ‘Round

Okay, I admit it: These words together make absolutely no sense to me. However, they keep popping up as a successful search phrase that someone is using to plug into a search engine and then be directed to my site:

“fragile handle with care name that porn”

No, it’s not two phrases – “fragile: handle with care” or “name that porn.” It’s all of those words mashed together. I suppose the fact that I am posting the phrase to call attention to it is also going to lead that party back here a third time, but seriously, weirdo, that’s messed up. A phrase that is normally used to ship expensive art work doesn’t normally immediately precede a phrase about porn. Porn isn’t fragile. I actually dislike a lot of porn that’s floating around because it always looks like the women are in pain. They do their best to hide their discomfort and disgust because they’re trying to make the big bucks, but at the first sign of acting, I lose my lady boner. Maybe it’s not the naming part you need to worry about, Anonymous.

I got another voice mail from Nashville. His voice sounded all hang dog, like “Gosh, I’m real sorry.” (Make sure you say that sentence in your mind with a twang, so all of the words are at least two syllables – “ree-yawl”). Oh, wait, that’s what he actually said. Then he followed that up with, “I know I didn’t call you (“yee-ooo”), I just got real busy with work and all (“aw-wall”).” Nashville ended the message saying he wanted to talk to me. Now I’m just flat out irritated that he is going back to his original lame excuse. Did he think I wouldn’t recognize it? Did he think I’d forget that I know he has a minimum of 3 days off each week, and which days those are? Now I know I can’t call him back, because I’m going to talk to him like he’s a flat out idiot, and he’s not going to like it. Oh yes, I’ve made grown men cry, usually because I don’t take their shit.
Lastly, I got a text on Tuesday night/Wednesday morning at about 12:30 a.m. from Hidden Creeper (https://thesickandthedating.com/2016/02/04/crouching-tiger-hidden-creeper/) saying, “Sweet dreams.” Wednesday night at about 9:30 pm I wrote back, “Thanks, you too.” He must have been waiting for my reply, because it took him two seconds to respond with, “Good night babe I want to see you :|”

Here’s the problem with technology: it’s a lot easier to analyze the shit out of everything that appears in front of your face in writing instead of having to improvise with someone in person. I had already established that he does not respect women’s boundaries since he couldn’t honor my repeated requests to not be addressed as “cutie.” Now he’s calling me “babe” as if we have actually exchanged bodily fluids, when in reality, I’ve never met him. Also, he’s making it sound like we had a couple of dates and he is now pining for me. Sorry, Hidden Creeper, your texts and phone calls are now going to be hidden from me permanently (unless I’m looking for entertainment, then I’ll peruse my spam files).

Lemme Tell You a Wake-Up Story

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

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