Okay, OKAY, Cupid – Sheesh.

I received a message from one of my stalkers whose messages go directly to my spam folder on my phone. I somehow managed to open it in my sleep and it startled me wide awake when I saw it: “I left Minnesota.” Did I believe it? No. Because when I scrolled back further in the spam folder, I saw various messages from him desperately trying numerous tactics to get my attention. “Oh, hey, the sky is blue, so I thought of you.” Yeah, buddy, nice try.

I haven’t logged onto OKCupid since March, so it took me a few tries to get the right username/password combo. I finally got in and found this jackass’s profile, made sure he was still blocked, then tried to figure out if he truly left the state, but everything looked the same. So I really can’t tell. That means I’m going to be looking over my shoulder for a while still. His “I won’t take no for an answer” attitude has gone on for almost a full year now.

While I was on, I decided to block the profile of the most recent ex, since he also has stalking tendencies – he admitted that he was still trying to “get” a friend to love him after five years of friendship and one failed date and that she was “the woman of his dreams.” The birthday gift to me was what he had told me he was going to give to her, which was a box he had picked out from a thrift store and write out qualities he liked about her on index cards he placed inside the box like a treasure chest. On one hand it was touching, but on the other hand it hurt – it made me realize there wasn’t anything special about me as far as he was concerned, but rather I was just fulfilling some romanticized role he had created in a fantasy. It also explained why he referred to me in the third person when we talked to each other. I was an object. I could barely get him to stop using a fake accent he had concocted when we were being intimate and not silly. I can only imagine the lies he is telling everyone about why I chose to end the relationship, but now I have to worry about him showing up at my sister’s workplace across the street, or hovering around my apartment’s entrance door and slipping in and then trying to SHOW ME how even though he tried to conceal a big part of his life from me and lie about the rest of it, he was going to swoop in on his white horse and save me.

I was logged on for all of seven minutes at about 3:32 a.m., and I guess that was enough to ring the fresh meat dinner bell. Immediately I got a few messages, including the usual with no punctuation: “Hi”, “Hi how are you” “Hi” “hi” “hi how you” and then one saying, “Wow! You are gorgeous! Do you want my phone number?”

I can’t handle the bullshit yet. The littlest nope:
LittlestNope

Of Saints and Sinners

I don’t drink, I don’t smoke, I don’t use drugs (not even the widely accepted green stuff); however, if I could snort chocolate, I probably would. In fact, I’ve heard that the latest craze is snorting unsweetened cocoa. Yes, it’s a thing. But what I’m referring to is more like my love of M&M’s – relatively harmless in the grand scheme of things.

Last year when 23 & Me was still mired in legalities regarding providing medical results in their gene testing, I had my genes tested because I knew eventually they would either 1) be able to find a way to package the results about the health stuff in a way where it would be understood that it was not actual advice, or 2) we would have raw data forever but it would be a starting point for me to take back to my doctors. So I got in on the action while the price was reduced. Just two months after that, they were able to legally follow the fore-mentioned #1 and also increase their price, but my info was grandfathered in, so it was a great situation for me personally.

This testing confirmed I had the addiction gene. Specifically, the results indicated that I would gain no benefit from developing a drinking habit. (Really, who does?) But certain people are definitely more vulnerable to addiction than others. I know I have that bug. Every once in a while I feel it tugging at my corners; in my 20s I had built up a tolerance to alcohol and it would take a dozen hard liquor drinks for me to perceive a feeling a drunkenness. What else could I become addicted to? Being pursued by men. Lipstick. Perfumes from Black Phoenix Alchemy Lab. I’ve managed to curb all of these, either cutting them out completely or limiting them severely. I know their price, either in dollars or with the price of my soul.

I’m bringing up addiction because it has claimed my relationship with The Saint Paul. Addiction brings with it deception, half-truths and deliberate omissions. I’m not inclined to list what his addictions are, but I discovered one of the five on our first date. I warned him early on that if I felt it interfere with our relationship in any way, it would not matter if we were 10 weeks or 10 years in, I would not hesitate to say goodbye.

As our relationship progressed, he tried to push the boundaries of my limits with what I would accept. One weekend I chose to ignore it because I was struggling so much with pain and unhelpful doctors that I needed comfort more than I needed to enforce respect. Later, other addictions became apparent. I started actively watching for evasiveness, because I realized that this was his go-to tactic when he felt cornered. I also completely lost trust in his ability to be my partner; his actions did not match his proclamations to support me, because in reality he always waited for me to take the lead and take care of everything.

This past week we did not spend time together. I rested a lot because the week before we were together every day because of non-stop activities, and then I wrapped up the week by spending time with some long-term friends. I had traded texts with him and asked him what he had done with his time and received no answer. I took this to be a deliberate, cowardly omission, a way to avoid telling me what he had been up to because he knew I wouldn’t like it.

I did not pry or send repeated messages. Instead, I went to the stash of brown bags with handles under my sink and began assembling his belongings from my apartment.

Tonight he confirmed my suspicions – he didn’t answer my question because he was doing something this weekend that he knew I wouldn’t like and broke his vow to me. It was just a formality that I asked him if that was the case. I had already mourned the loss of our relationship Saturday when I was met with radio silence. It was actually the sound of the other shoe dropping.

I encouraged him to seek counseling. I told him that I did not want to be “friends.” It would be far too painful for me to be the asshole handing out the advice that won’t be listened to, even if my advice is sought out and makes sense. I can only hope that his fear doesn’t paralyze him and that he pursues a better life by letting go of his demons.

I’m Just The Patient

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

Pat, I’d Like to Solve the Puzzle — Patient Worthy

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m not going to go into detail; I feel like it’s not my story to tell. I had as much pep as a wrung-out washcloth. I…

via Pat, I’d Like to Solve the Puzzle — Patient Worthy

Ch-Ch-Ch-Changes

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.

It’s Not Easy Being Green

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

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.

 

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