dating

It’s Not Easy Being Green

Posted on by akiwifreund

I thought I had a diagnosis. In fact, I thought I had THE diagnosis: Lyme, picked up seven years ago on a hike down into the Grand Canyon, yadda, yadda, yadda. Don’t get me wrong, I still have it.

However, after seeing a physical therapist, a pain management specialist and the neurologist who specializes in movement disorders at the U of MN, they are throwing me back in the rare pool. They have never seen anything like my symptoms even with the confirmation of the antibodies particular to the Lyme bacteria. The PT and the pain management doc both marveled at my party trick, which is to lay flat or tilt my head so it’s perpendicular to the floor, which moves the fluid off of the area where it’s pooling when I’m upright and I can move my face again. The neurologist refused to evaluate me and instead scheduled me for an EMG of my face and head. Good thing I am a baldie, because it will be easier for the doctor who performs the EMG to easily find landmarks and previous poke marks. They want to rule out myasthenia gravis (again).
I’m now getting a little overzealous on recording my symptoms again. I know of a couple of people who developed POTS at the same time as their Lyme infections, and so now that’s on my radar too. But the issue with the CSF is really puzzling.

I signed up for a “scholarship” through the Hydrocephalus Association so that I can attend the hydrocephalus conference at little or no cost, which just happens to be going on about 10 miles from me (as opposed to another city/state) in June. I had to provide information as to why I was asking for the scholarship. I refrained from saying “Because I’m a freak of nature” but I did indicate that I would like to know if there are any new shunts out there that I wouldn’t be allergic to, or discuss possible advances in surgery and technology that would allow me to get an operation to fix the issue instead of having to implant a shunt at all. I’m hoping that some of the doctors attending will be interested in my demonstration about shifting the CSF away from where it’s pressing.

Oh, and I deactivated my OKCupid profile. I’m getting to know the man who considers himself a feminist – you know, right up my alley. So far no red flags, and he actually follows through on being a decent human being. Small children like him. He volunteers at an animal shelter. First and foremost, he’s nice to me.

But I’m A Nice Guy

Posted on by akiwifreund

I have grown to dread this self-proclamation: “But I’m a nice guy.” In fact, I have grown to develop a specific distaste for OKCupid profiles that are like “Niceguy4U” and “niceguy69” and “goodguy98787.”

Why? Well, if someone has to keep telling others that he is “nice” or “good,” it’s likely he’s not. The key is to get past the words and watch the actions. 

For about a week I was chatting back and forth with a guy who claimed he wanted a real relationship. His screen name was something like “Love4You” – red flag right there. We messaged for a few days and then he asked if we could text, so I agreed and gave him my phone number. Then he asked if we could get on the phone, so we chatted that way. He told me it was really great to talk to me, and that he felt at ease with me, and that thinking about me and our conversation made him smile. I thought he was really friendly and enjoyed our conversation too.

We made a date for last Saturday, but it fell through because he had to have work done on his truck. He suggested we make a date for the next Saturday. Between that afternoon and this evening, we spoke on the phone a few times, and we texted multiple times each day. Mr. Nice Guy said that he wasn’t interested in sexting at all. I told him that I thought that was refreshing. I also told him – multiple times – that I don’t want to talk about anything like that until after we met, because it puts unrealistic expectations on us when we do meet for the first time. He agreed and told me he was much more interested in sharing his life with someone – specifically, me – and he was already talking future plans, like what he was going to cook for me and where we could go, even with my physical challenges.

Again, through all of this, Mr. Nice Guy repeatedly told me that he liked my sense of humor and that he smiled when he thought of me. He told me that I had a very positive attitude. I told him that I was looking forward to our date on Saturday. He said he was too, that he thought we’d have a great time.

Another red flag: On Tuesday (Super Tuesday for voting!), I got a message from Mr. Nice Guy saying, “Can we meet Sunday instead of Saturday? Busy day.” I told him that would work for me, and he thanked me. This was the second time in less than a week that he changed the date.

We had gotten into the habit of saying good night every night. On this particular night, I told him sweet dreams, and asked him what he would like to dream about that night. Mr. Nice Guy answered, “You.” I said, “Thank you. Where would you like to go in your dream?” He said, “In my dream with you?” I said, “Yes. Pick a place and we’ll go there. I’ll see you in your dreams.” He said, “In bed.”

I didn’t see this right away because I was still trying to change for bed as well as wash my face and brush and floss, so he noticed the big pause and said, “Too direct?” When I saw his messages, I said, “Didn’t we say we weren’t going to go there at this point?” He said, “Yes very sorry.” I said, “I just don’t want to jump the gun.” Mr. Nice Guy said, “That sounds good to me. Falling asleep” and he ended his text with a very enthusiastic smiley face. The trouble is, he didn’t go to bed. OKCupid showed him logged into the system until 9:40 pm, later than our interaction. That reeks of looking for a piece of ass, in my book.

The next evening I sent Mr. Nice Guy a text greeting him by name and asked him how his day was. He answered, “Very busy. Had a 5 minute lunch. Stayed 45 minutes on overtime. Gonna get much more busy.” And then he said, “Good night” – at 7:45 pm. You bet your sweet ass he was logged on for a few more hours on OKCupid.

Then at 6:05 pm tonight, I got a message that said, “I met someone. Good luck in your seach” (bad spelling included).  How did I respond? “Nice.” How did I want to respond? “You’re a dick” would have been appropo; so would have “You’re a fraud.” I mean, for someone turning 50 in a month, you would think he would have the manners and integrity to be truthful with me and call me instead of texting this ridiculous made-up story. I am pretty sure that’s why he’s still single.

I have his number and messages blocked on my phone and I blocked him from seeing my profile or messaging me on OKC. However, I can still see his, and he was logged on for three and a half hours this evening. With as quickly as he wanted to move to chatting on the phone, Mr. Nice Guy’s claim that he met someone is obviously false because he’s still trying to hook up with someone.

A couple things could be happening here:

1) Mr. Nice Guy really does just want sex and is not interested in a relationship;
2) Mr. Nice Guy is still married;
3) Mr. Nice Guy is embarrassed that I turned him down;
4) Mr. Nice Guy is pissed that I turned him down.

Whatever the reason, that’s one less man-child for me to raise. Mr. Nice Guy isn’t so nice after all.

 

Now You See Me

Posted on by akiwifreund

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

Posted on by akiwifreund

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

The Bee’s Knees

Posted on by akiwifreund

I’m watching “Morgan Spurlock: Inside Man” on Netflix, and as always, he puts together thoughtful pieces about the things we should be concerned about as humans and consumers. I mean, I really enjoyed the episode from Season 3, “Morgan the Matchmaker” because, duh, dating; but there are others that really speak to my sense of responsibility to the earth and to other humans.

For instance, also from Season 3, Morgan explores trash in Episode 6, “United States of Trash.” I try not to create loads of trash. I recycle tons of stuff. But as careful as I try to be, I still generate the equivalent of a Walgreen’s plastic shopping bag of trash every week. I learned something new. Specifically, you can take those glass jars with the metal closures and rubber ring around the lid for a tighter seal to the grocery store with you and have the meat department deposit the meat IN THERE instead of packaging it, even if it’s “just” the paper. Guess what? There’s also less of a chance of cross contamination if it’s in the sealed glass jar rather than in the paper (which you might insist on wrapping in another plastic bag). Also, if you wash your glass jars in food safe dish soap, you aren’t going to pick up chemicals (like you do in containers that are half or all plastic). What amazed me the most was that the family of 4 saved 40% off of their monthly grocery bill by bringing their own containers.
I can no longer drive and stash my reusable bags in my car, but I still make it a point to bring them with me when I do my own shopping. Any time we can leave a little less plastic in the world is best, but even I know I must get better about my own consumption.

Season 3, Episode 7 is “Honey Bee-Ware.” I remember when the big study was put out about how scientists were really excited about figuring out why hives were dying out in great numbers, and they firmly believed it was the result of these little mites that were invading the bodies of the bees and then effectively decapitating them. Something about zombie bees, blah blah blah.

Really, the concern should have been focused on pesticides and herbicides. Morgan interviewed a Harvard researcher who had indisputable proof that the deaths were related to the use of (trace) amounts of neonicotinoids. The popular product “Roundup” has glyphosate, also known to cause just as many problems after being researched. When the European Union found out about the results, they immediately banned those chemicals.

The problem with the U.S. is that we allow ourselves to be guinea pigs for everything – food, cosmetics, cleaning products. We assume that our responsibility and our concern falls only within the U.S. borders, and we’ll take care of “it” later after a number of decades have passed and we suddenly have a large percentage of the population sporting eyeballs from their ears or some weirdness like that. But our trash is in the world’s oceans. We eat poisoned food, use 110 chemicals a day in cosmetics ranging from toothpaste to eyeliner to soap, and we leave smears of chemicals around our kitchens and bathrooms that we would never dream of putting in our mouths, but that’s where they end up anyway.

I mean, think about it: Would you put that Chlorox wet wipe in your mouth and suck on it like a pacifier? I’m guessing not, but somehow you have convinced yourself that it’s safe putting it on every surface you can find. Nothing is really clean unless it’s been passed over by harsh chemicals, right?

<sigh> This brings up the whole discussion about superbugs, but I’m going to think about that one a little longer before I cover it.

My new diet to combat my Lyme bacterial infestation has to be all organic (no chemicals, hormones, artificial anything), and I can’t have any dairy, gluten, soy or sugar. The “Honey, Bee-Ware” episode reminded me that there is a non-profit group in the U.S. that is trying to counteract the stupidity of the FDA and EPA and make us smarter consumers. Now that I think of it, I like the idea of not dipping my apples in a bowl of Roundup before chowing down on them. I try to buy organic when I can. I have already changed all of my cleaning products to be environmentally-friendly, and 90% of my cosmetics have been changed as well (I just have one eyeliner that I have a hard time giving up just because it’s the only one for me that doesn’t smudge, which is important to me because it makes up for the eyelashes I’m missing).

I made these changes about eight years ago after I wrote a paper and gave a presentation on the Environmental Working Group‘s database “Skin Deep” (http://www.ewg.org/skindeep/). I still have a hard time convincing people that they can find great stuff for their teeth and skin and hair that isn’t going to give them cancer or screw up their hormones, but I keep trying.

I was thrilled to see EWG add a cleaning database about four years ago: http://www.ewg.org/guides/cleaners

Lastly, EWG has a handful of databases dealing with food issues. Think of it as an adventure to be the best you can be, like you’re in the food army or something. http://www.ewg.org/foodscores
http://www.ewg.org/foodnews/
http://www.ewg.org/research/ewg-s-dirty-dozen-guide-food-additives

Change Your Password, Change Your Life

Posted on by akiwifreund

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

Posted on by akiwifreund

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

Hello Tremors, My Old Friend

Valentine’s Day is 80% Off

Posted on by akiwifreund

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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

Posted on by akiwifreund

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