You Get the Seal!

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.

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What’s Going On With Your Face?

This morning I woke up and said to myself, “I’m going to urgent care.” Not for fun, mind you – I have been having horrendous heel pain in my right foot and haven’t been able to bear weight on it; I couldn’t even stand to rest it on top of my covers to sleep at night. Nothing has helped either, including ice and ibuprofin. Getting my shoes on took seven tries and a few tears.

I also had conversations I’ve had many, many times. The first was with the nurse. As we were talking about my meds and allergies, she said I was lucky to have a cane handy to help me with walking through this problem, and I told her I use one anyway because of vertigo, and warned her that I could feel the CSF pooling and starting to press on my nerves. I had been laying down until right before the cab picked me up, so I looked normal when I first hobbled through the door. She was watching my face as it became paralyzed and asked, “So you have Bell’s palsy, right?” I answered, “No, it’s not that, and it’s not Myasthenia Gravis or anything else you’ve heard of. It’s a rare condition without a name and I can’t get a diagnosis. But that’s okay, I really want to find out what’s happening with my foot right now, I don’t want to unload all of the stuff about my CSF issues on you.” We finished up with the vitals and she left to get the doctor.

He came in, introduced himself, and said, “I understand you’re here for foot pain. My nurse filled me in with that and gave me background on your really big issue. What’s going on with your face?” I explained briefly that it is yet undiagnosed, and that the latest of a series of rejections from the Mayo Clinic to see me came from a neurologist and a neurosurgeon stating that what I had is so rare that they wouldn’t be able to diagnose me or treat me. But then I said again, “It’s okay, I don’t expect you to do anything about that. I would really like to try to figure out what is wrong with my foot.”

I went through a couple of cab rides for nothing, it turns out. The x-ray didn’t show anything wrong with the bones and that’s as far as they could go with imaging. The doctor offered me a walking boot, but I declined – I don’t want to set my foot down at all because of the pain, it’s not a stability issue. Well, okay, that’s a problem too because of my vertigo and penchant for leaning to the right because of my imbalance, but we’re not trying to stabilize the bones. He also offered me some opioid painkillers but I declined those as well. His conclusion: it’s a nerve problem. Unless there’s something wrong with the soft tissue, which can only be checked by MRI. Either way, I have to wait until Monday to see what the next neurologist says.

For the entire time that I was dealing with that, I was getting bombarded by texts from a guy I met on OKCupid. He is an H1B transplant from India whom I will call Quiz Master. Quiz Master is quite a bit younger than me – 28 years old. At first when he approached me online, I was extremely cautious because I am not attracted to younger men at all. He seemed okay, though, because he was actually asking thoughtful and non-standard questions, and he wasn’t trying to get in my pants or show me his penis. Still, though, I knew that culturally we would be very different.

Quiz Master would ask me questions, sometimes four or five in a row, and I would try to answer as quickly as I could, but I’d only be able to type up one answer and he would throw another five at me. He would then say, “But what was the answer to the question I asked you before?” I’d have to scroll through a bunch of stuff to figure out what he was talking about. It was very tedious. And then he’d say, “Now you have to ask me something,” while I was still trying to answer his questions that he insisted that I answer. Sometimes he would message me days later and say something like, “I’m still waiting for your answer.” A couple of times I had to tell him I had no idea at that point what he had asked because we had moved forward with the conversation.

Against my better judgment, I agreed to give him my cell number, because, again, he wasn’t trying to get in my pants. Quiz Master asked if we could meet, so I told him why I wouldn’t be able to go out on a traditional date, though that would be my preference (as opposed to having a parade of stranger dangers through my apartment). Quiz Master first told me that if I went to bed that night, every day that I got up I would feel better and better until I’m cured. I told him that applies to things like having a cold, but has absolutely nothing to do with what I have going on. Then he told me that I had to be positive and that if I keep up my hope, I would be fine. Rather than telling him to screw himself, I told him that he should try that experiment, but that his mission was to make his eyes turn from brown to blue. If he didn’t succeed, then it would be his fault for not hoping hard enough.

So Quiz Master said fine, let’s not talk about that anymore, and then he proceeded to bombard me with questions again. I think he was really embracing his role as an enthusiastic questioner way too much, because he would ask things like, “Are you different from when you were little? Why and in what way? Do you think growing up made you think of things different? How do you think you think different?” (I’m slightly improving the grammar he used – you get the picture.) I finally asked for a break because I really don’t like to text. Quiz Master said, “Oh, but we’re getting to know each other. You are doing fine.” That really grated on my nerves because I wasn’t asking for his approval on my texting skills, I just wanted to take a break from the hundreds of questions he was insisting I answer.

Since Quiz Master also found out that I don’t work, he started texting me all day, every day, for about five days. If I didn’t respond right away, he would send me repeated messages saying, “What are you doing right now?” I started avoiding reading his messages for a few hours so he couldn’t see the “read” stamp. It was taking just way too much effort – he would hound me if I answered, and he would hound me if I didn’t. Then Quiz Master started asking if he could come over. Actually, he was asking if I could ask my parents if he could come over. I was starting to lose my cool. I said, “I don’t live with my parents and I never said that I live with my parents. Why do I have to ask my parents if it’s okay for you to visit?” Quiz Master said that he just assumed that I did because I’m single. <insert eye roll> Huge cultural gap right there.

Then he switched up his questions, saying that he wanted to play a “game” with me: we could say an actor’s name, and see if the other person is familiar with the actor and if they like them or not. I only tolerated about three actors from Quiz Master and then said I don’t like texting all day, every day, and that I wanted to take a break. Again, he told me I was doing “fine.” Finally, I told him that I don’t like to constantly text anyone for hours, and that I wanted to not text with him for a few days. Quiz Master said he wanted to call me then. I told him no, that I didn’t want to talk at that point either, and that I really wanted to get some stuff done.

Quiz Master waited all of twelve hours to start hounding me again. Did I get done what I wanted to do? What was I doing right then? How about a few minutes later? Why wasn’t I answering him???? He’s JUST TRYING TO GET TO KNOW ME. I’M DOING FINE. DID I FEEL BETTER? I MUST BE FEELING BETTER BECAUSE I WENT TO SLEEP. I HAVE TO TALK TO HIM. He was getting really, really demanding.

I started getting a feeling like I couldn’t shrug his arm off from around my shoulders, weighing me down like a yoke. I couldn’t breathe. In fact, I was suspicious that he somehow got lodged UP. MY. ASS. And I just do not enjoy that at all.

Quiz Master bombarded me with texts the next morning again, asking me exactly where I was and what I was doing. I told him that I was at a doctor’s appointment. He offered to pick me up so we could meet and visit. I told him no, I was exhausted and uncomfortable, and did not feel that it was the best time to meet. He told me that it would be a good time to meet. I told him no, I didn’t want to. Then he started asking me the stupid actors’ questions again and insisting that I ask him more questions. I told him that I needed to rest and I didn’t want to text anymore. Quiz Master gave me six hours, then started in again. I seriously wanted to kick him across a field like a football.

This morning, when I got the now-familiar text telling me to tell him exactly what I was doing, I responded by telling him that I no longer wished to pursue any relationship with him, and that I wished him well. Quiz Master then sent me 16 texts about how he was respecting my space but I had to answer him, and we were just getting to know each other, and he still wanted to come over – oh, and, did I think he was trying to have sex with me? I simply wrote back, “Knock it off.” His last two messages to me were that he was assured that he didn’t do anything wrong, and that he wished me a good day.

Obsessed much, Quiz Master? I suppose I’ll have to be looking over my shoulder for a while. Good thing I don’t have a pet rabbit for him to surprise cook for me.

Dating Whitecoats

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.

Put Some Warrior In You

Whenever you are feeling a little down, do a little haka in your living room. Guaranteed to make you feel invincible.

(Bring your neighbors cookies afterwards to apologize.)

Cupcake or Cesspool?

I reactivated my profile on OKCupid in a fit of…well, frustration, loneliness and boredom, I suppose. I hate being stuck in my apartment. I used to travel extensively, host happy hours, go to art and music festivals, take swing dancing lessons and volunteer. I know it’s possible to find someone who has the same interests, especially since it’s so easy to connect with shop for people over the internet. I’m not looking for someone to be my sole source of entertainment and am trying to keep an open mind because of my unique situation. But I’m also reminded of why a lot of these guys have been on the site for over a year, or two, or four – because they can’t act like normal human beings.

Following are some of the exchanges I’ve had, word-for-word, in the last 24 hours.

First there’s the one who was born the year I graduated high school:

23-Year-Old Guy: Your really cute! 🙂 How are you?
Me: Thank you, you’re really cute too – but I’m much older than you!
Him: That’s fine with me! Are you okay with it?
Me: Well, I am kind of laughing – when I was 22 I was dating a 48-year-old. Now that the roles are reversed, I’m not so sure about it.
Him: So where do you work?
Me: I don’t work because I’m dealing with some major health issues.
Him: So you dated an old man when you were young? LOL
Me: I did! He was pretty wealthy so I joked that he was my sugar daddy, but I only let him buy me dinners.
Him: Haha your kinky! So how was the sex?
Me: What??? Why would you say I’m kinky?
Him: Did you guys have sex?

At this point I let this conversation drop. I’m still not sure how letting someone buy me dinner translates to kinkiness, but I didn’t feel like I had the patience to find out.

So here’s one from someone who is clearly going to try to scam me out of my life savings:

45-year-old Man from Louisiana (supposedly):
Him: Hello, how are doing today
I am Kelly William from United State and you
like to get acquaintance with you

Blocked. It’s obvious there’s some Google Translate going on there.

Here’s a quick one from California:

25-Year-Old Guy: Your a sexy gorgeous mama! 😉 U got kik?

<sigh> No, little boy, I don’t. I’ve got OKCupid and I don’t want to see your penis.

This one claims to be currently in the U.K., working on a film project, but due back in two weeks:

43-Year-Old Man: What are you looking for on this site? As for me I’m looking for a relationship that will lead to marriage.
Me: I would like a serious relationship too, but only with someone who is truly a match.
Him: Yeah you are right we can get to meet soon, what are you looking for in a woman? As for me am looking for honesty and a GOD fearing woman, a woman that is caring and knows how to treat her man right.
Me: We are going to seriously clash on religion. I don’t believe in religion or “God.”
Him: Thats okay. When I get back we can meet. Where do you live?

Um, no, Stranger Danger – go back to your 1950’s household. There’s a FetLife group for that and I’m not in it. I’m also not looking for a woman.

How could I possibly turn the next one down? He’s very determined:

44-Year-Old Man in California: Your attractive looking and I’m interested in you. I am willing to relocate.
Me: Thank you, although we would clash on religion. (Another bible thumper.)
Him: I would go to your church with you.
Me: I don’t believe in religion or church. (WTH, man, read my profile! I spell it out.)
Him: I would shovel snow for you. I would buy a snowblower for you.
Me: That’s not necessary, I don’t have to take care of snow removal.
Him: We could go to dinner out or we could order pizza.
Me: Is dating difficult in your area?
Him: Yes

Clearly, Creeptastic Man.

And then there’s the one who can’t figure out why he’s bored and lonely:

41-Year-Old Guy: Hi
Me: Hi
Him: I’m bored and lonely.
Me: Have you heard of MeetUp? They have events every day, lots to choose from.
Him: Where do you work?
Me: I don’t work, I am dealing with some major health issues.
Him: Can I come over? I’m bored and lonely.
Me: No, we don’t know each other so I wouldn’t be comfortable with that.
Two days later:
Him: Hi
Me: Hi
Him: Where do you work?
Me: I don’t work right now, I’m not well enough.
Him: Oh yeah. Can I come over?
Three days later:
Him: Hi
Me: Hi
Him: Where do you work?

<SIGH>

So here’s my take on OKCupid: The cupcake part of it is that it’s packaged to be very cute and friendly, like your very own serving of happiness topped with sugary frosting and sprinkles. The algorithm gives you the probability of being a match with someone according to your likes, dislikes and answers to hundreds of questions. I don’t think I’m alone when I see someone actually has a 90% or higher compatibility score with me and I get a little jolt of hope. The cesspool part is that all of these guys don’t know the difference between your and you’re (and I’m pretty sure yore would blow their minds), there’s money scammers, desperate men who are offering to relocate without actually meeting in person first, boys who want to talk about and show off their penises, and bulldozers who WILL MAKE YOU FIND RELIGION. I keep hearing about these fabled people who met their spouses online, but how did they get past the creepy, stinky cesspool??

I added another paragraph to my profile that states:
“If you are going to hit me up to chat, you’ll have more success if you talk about our common interests. If you just say “hello,” or you copy and paste a standard message that obviously is sent to everyone you contact, or you want to talk about your penis, I’m already not interested. No, really, put that away.”

And since I signed in for a few seconds to copy that paragraph, I got five new messages saying “Hi” – and that’s all.

<SIGH>

Send Up The Bat Signal

From Thursday morning until today at around noon, I was so excited. I felt this enormous surge of energy, and I wanted to do everything – go to the movies, go on job interviews, retrieve my car from where it’s being stored and drive around, go on real dates, go to Costco and buy 30 rolls of toilet paper. I felt like my old self. For 108 hours, I felt capable. I was sitting and standing and walking just like everyone else. The vertigo was still present but I wasn’t running into furniture or doorways.

The weather has been unseasonably warm, so I went on a few walks around my neighborhood for the first time since moving here. The last one this morning was to walk a few blocks to Redbox to rent a few movies. And just like that, the drooping face appeared again. As I was approaching my door, my steps became slower and slower, and all the while I was chanting to myself in my head, “No, no, please no.” I often have to try to explain the sensations to doctors and nurses who haven’t seen me before, and this is the best I have come up with: It feels like a big slab of raw steak has been laid across my forehead and left eye. The weight of it and the paralysis makes it impossible for my eyelids to stay open, and if you look closely, you’ll see my left eyebrow twitching because the nerves are misfiring or losing their connection completely when I try to move it. Everything becomes very blurry and starts swimming in front of me, kind of like what movie directors do to try to portray fainting from the viewpoint of a character. I lose depth perception and peripheral vision. I also become immediately exhausted.

I had seen my sister before I went on my walk and we were discussing the mystery of the symptoms lifting. After I got back, I had to send her a text saying, “Fuck it. Sell the car. It’s back.”

Today we talked about how this has been a really tough year. We lost our oldest sister, and then just a few days later my friend died, and now our uncle is running out of options to treat his stage IV throat cancer. My sister has health issues herself, and though she has told me numerous times that she is happy to help and that she knows this has been difficult for me too, I am fully aware that I am a burden to her. I don’t want this to be my permanent reality.

Some of my friends have gotten involved with getting in touch with people in the TV industry to see if there are news stations or shows that would be willing to feature my story. (I told one person that if I got on “Ellen,” I don’t want a car or cash, I want a doctor.) An uncle’s girlfriend is a freelance writer and we have been in contact with countless publications; I have been turned down by all of them because they want a happy ending. I am still hoping that I can get some exposure and a fire will be lit under someone qualified and knowledgeable enough to deal with this shit.

Oh, and Mr. Friday Night is done. When he was here, he asked me over and over again if he could return on Saturday for some more nookie. Late Friday afternoon, he texted me things like, “Miss me yet?” and “I’ll be back, I really like you.” I never asked him for another session, so this isn’t me baiting him to push him to say that he wants to see me again. Late Saturday afternoon I texted him asking if he was still planning on coming over, and his response was “:))))).” That was his last communication. So I sent him a text this afternoon telling him that he shouldn’t beg to come over and then act like I died – he needs to be more up front and honest with the next woman (Bye, Felipe!). It’s depressing that he got any of my good hours. Fear not, though – I have been chatting with others on OKCupid and initiating them into my weird and wacky world. One guy is 14 years younger and a great conversationalist but he’s so young. I may use a cane, but I’m not comfortable with being a cougar.

As disappointing as today was, I am happy about one thing: a ghost from the past contacted me through Twitter. I’ll call him Socrates, as he is a deep-thinking man. Socrates found me just by chance when he was searching for a former client’s info, and when I saw that he was following me, I sent him a message. I have actually been trying to look him up for the past few months. Socrates and I met when he was going through an especially difficult time; his business had folded, he was nearly penniless, his family was spiteful and sucking his soul dry, and he didn’t have access to healthcare.

I enjoyed his company despite the turmoil that burdened him and seeped into our time together. Socrates is incredibly intelligent. I could actually hold conversations with him that did not center around sports or the weather. He is much more concerned with the human condition and continuously trying to improve himself and the world around him. But the one thing that broke my heart, as it always does, is hearing that I am fine to have sex with but that person isn’t going to get into a relationship with me. And Socrates gave me that speech. I can’t help but take that personally, no matter if I also realize that it’s not the right time or the right person for me. Some day I’d like for some man to tell me that all of my parts are wonderful, not just the sex parts.

So we entered into a true friends with benefits arrangement. I helped Socrates to pack up his apartment so he could move. I found a sliding fee scale clinic so that he could try to get the healthcare he so desperately needed and wanted, just so he would know that there were options. I also gave him blowjobs he rated as, “Ohmygodthatwasthebesteverthatwasaten.” Socrates was always open and vocal with me, never just saying what he thought I wanted to hear, because he values authenticity over flattery.

Our last contact (and correct me if I’m wrong, because I know you’re reading this, S.) was over email in 2007. Socrates was overwhelmed with every part of his life and not interested in communicating with anyone for the foreseeable future. I was left to wonder if he was okay and how he was surviving because the messages simply stopped.

That brings me to today, and our renewed connection. I am relieved to know that he is in fact okay, and that he has done some serious work on his soul to try to repair some of the damage and to release the parts that are past rescuing. Socrates is also married! He and his wife seem to be true partners and supportive of each other, which is the best anyone can hope for in a loving relationship. Socrates is now in a position to help me with spreading the word about this crazy disease, and I am gratefully accepting.

The Weirdness Of You

Let your freak flag fly.

The hardest thing to do is to find someone who loves your weirdness.

This week I initiated another person into FetLife. My Friday date has a pantyhose and toe fetish and before coming over, he put in very specific requests for dark red toenail polish and nude pantyhose/stockings. I asked him if he had a profile on Fet. He had to look it up! I would not be surprised if he suddenly appeared. However, his fetish does not seem to be hardcore – he enjoys other acts as well, thank goodness. Main reason: I’m not a foot model. In fact, some have called my feet “Flintstone feet,” not exactly drool-worthy. All of this week I have been soaking, scrubbing and grinding away calluses because I was very aware that these toes could end up in his mouth – and they did.

As far as fetishes go, his is pretty harmless. However, I still had to accommodate him and find pantyhose and nail polish. I didn’t give him a list of anything that I required. But so far, he has won points with me because he isn’t telling me that I’m not doing “enough” to get better, or making me feel like a loser for not being able to work or really, just leave the apartment for more than 30 minutes. He also didn’t freak out when I told him that I had to wear wigs. That one is a big one! The real test will be to see if he sticks around and/or comes back again in the near future.

Something strange is happening with my body. I’ve been dealing with these crazy symptoms since my shunt failed on April 10th, but for the past three days without changing my medications, diet or supplements, I have been able to be upright for hours. HOURS. Like a normal person. I’m still having some issues with vertigo, but the pressure isn’t so strong on my brain that my face becomes paralyzed like it usually does when I’ve been upright for 30 minutes.

I honestly don’t know if the change is because it’s not terribly hot or cold. I don’t know if it’s because the humidity is relatively low for this part of the country at this time. I don’t know if it’s because the air pressure is at a certain level and is holding steady. I don’t have a clue.

But because I don’t feel like I’m dying, I suddenly have energy – at least, I’m back at fibromyalgia-style energy. I feel guilty for not getting in my car, which is currently being stored at my sister’s house and being prepared to be sold, to go to a concert, or the library, or the grocery store. I want to go out on dates like a real person! I have even thought about working because when I have this energy zinging through me, I hate to be idle. (Honestly, that’s what gets me into trouble. I either get really vocal on Facebook or I chat up a bunch of men on OKCupid.) But I don’t know why this is happening, and I don’t know how long it’s going to last.

My reminder of that is the notice I got from Metro Mobility letting me know I am eligible to use it until May of 2019. It’s a service set up through the bus system in the Minneapolis/St. Paul area for people with disabilities who can’t use regular buses. Normally I can only take the bus if my aunt rides with me and takes care of the fare as well as keeping an eye out for our stop because I can’t see well enough. I have to ride the short bus now. Don’t get me wrong, I’m grateful for this service. I just really like my independence and, you know, being able to see, and using this emphasizes just how handicapped I am and what I have had to give up.

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In another nod to normalcy, I just got a message on OKCupid from a guy who is seven years younger than me who claims to be “long and thick just for [me].” I did specify in my profile that I didn’t want to receive any penis pictures. At least he stuck to the rules and described it instead?? I replied and told him his DNA determined his length and girth, and has nothing to do with me.

Is It A Date if You Can’t Actually Go Out?

This has been a tough seven days. Last week was the 19th anniversary of my father passing away; two days later it would have been his birthday. It also would have been my sister’s birthday; we lost her in July the week after I moved to Minnesota. My father’s brother is losing his battle with stage IV throat cancer. And I got my fifth rejection letter from the Mayo, supposedly the #1 neurology/neurosurgery center in the U.S., saying they don’t think they could come up with a name for my disease or a prognosis or a treatment plan.

Like with most major obstacles, I had myself a good cry, and then I called my family and gave them the update on my denied referral. I waited until I had a conversation with my disability attorney; that did not go well either because he seems to think that there is no way I can win my case if there isn’t a name for my disease. Yet his website repeats over and over that when our cases go to court, we should focus on the symptoms and how our quality of life is affected, not the name of the disease.

I have friends all over the U.S. and in locations around Europe, so it’s sometimes easier for me to get the word out on Facebook. I feel a little silly “liking” everyone’s message of support because it feels like I’m fishing for sympathy. However, it’s also nice to know that some of my friends are outraged on my behalf and willing to write/call/tweet in order to call attention to my plight. A few people have stepped forward to say that they have media contacts, so I’m widening my reach with giving them documentation to pass along to their people. The theory is that if the doctors won’t take me, maybe the news will?? My medical coverage is through medical assistance in Minnesota so I would not have any expenses covered if I went to a different state. However, Johns Hopkins has a “remote second opinion” option (for a minimum of $550) and they will review my case without me having to fly to Maryland. I may end up doing this. However, I do not think it’s very effective because it’s one thing to read about my symptoms, and quite another to actually see my issues in person. I have taken to scaring my friends by moving the fluid around in my brain so that my face stops being paralyzed momentarily – aka my “party trick.”

I’m a very social person by nature and being stuck in bed all day and night is really wearing on me and definitely changing my outlook and attitude. Last Friday night I caved and reopened my OKCupid account after a four-year hiatus. I barely had time to update the city when I started receiving messages – I was fresh meat! Generally speaking I don’t reply to obvious copied and pasted notes who claim they like me (without knowing me), but they just restate what they have written in their profiles. I also don’t like to talk to anyone who can’t write a sentence. I know it’s a huge reach to think that I can find anyone willing to just chat and not go on dates, but I have been up front with everyone who has contacted me to let them know that I can’t go out anytime soon. Dare I say I’m lonely??? It feels so whiny to say that. Yet here I am.

I talked to about three of the 20 guys for more than a few messages – most guys were either put off by my request for no penis pictures or my warning that I can’t actually go out. One was far, far too young for me and located a good hour away, but gets kudos for truly creative questions. One was obviously a social recluse and did not do anything outside of his janitorial job, which is really a bit sad. That one would send me messages saying he was lonely and bored and he wanted to come over. I get a serial killer vibe, though, or he’s just not capable of conversation, which is just as bad. He would kill me with social ineptness. I have asked probing questions and he only answers with “yes,” “no,” “ok” and “oh.” I suggested that he check out Meetup because he would never have to spend another night alone and bored if he didn’t want to, and that way it doesn’t solely fall on my shoulders to entertain him. I have enough going on. The third guy was really, really responsive, funny, age-appropriate and not put off by the fact that my bed is getting a lot of my action. I’m actually hoping to meet that one very soon.

The last time I went on a date through OKCupid, it was with a tall, southern gentleman who was ex-military about four years ago – I’ll call him Mr. Army. Mr. Army met me out at one of my favorite restaurants in the Phoenix area. It started out nice enough, though I could tell immediately that he was used to dominating all conversations. I would describe him as being a perpetual mansplainer. Mr. Army was too old to have served in Iraq this second time around, but he made it clear that he had very strong feelings about being over there. I’m a tree hugger and liberal at heart and his very vocal support of George W. Bush and Cheney made my skin crawl.

Towards the end of the meal I explained to Mr. Army that my friend had moved to the U.S. from Iraq twelve years prior to that to marry a man through an arranged marriage, and that she was currently trying to sponsor her parents, brother and sister and their spouses for asylum because they were still stuck in Iraq. Her brother had even been shot in the leg during a failed kidnapping attempt; people in his community knew he had a sister in the U.S., and the kidnappers were hoping to extort money from her. Mr. Army became outraged and asked me, “How do you know that your friend isn’t part of Saddam Hussein’s family? How can you trust her? She has no right to be here!” I told him it was obvious she did not come from some super secret bloodline; she would not sponsor them and put her name on all of the documents if that were the case. She was not being “kept” by anyone through a super secret account. It was an insane exchange. I am not very good at keeping a poker face either.

As I was walking to my car, Mr. Army stopped me to say he wanted to go out with me again. I declined. Did he not see my face??? I’m not certain what we would have fought about on the next date, but I’m betting it would have been about guns or religion. He who squeezes his eyes shut and yells the loudest wins, right? No thanks. I’d rather have a no pride night and sit on the couch for four hours in my pajamas, sprinkle chocolate chips in a jar of peanut butter and eat it while watching “The Notebook.” If Mr. Army is the alternative to that, I’ll gladly stay home.

He Looks Good on Paper

One of the hazards about internet dating – and I’ve said it before – is that you can get wrapped up in making your grocery list. Shopping for men! In my 20’s I decided that my ideal mate would be tall with blue eyes, be smart and not have any back hair. The problem with this list is that I left out very important requirements, such as my partner should actually like me (and women in general, no misogyny allowed), pay his own bills, do his own laundry, be willing to help me if I needed it…well, I could go on and on. But after the two live-in boyfriends in Cincinnati, I altered my list a bit.

In my 30’s, I still wanted an educated man with whom I could hold conversations. I also added the need to have a sense of responsibility so that I wouldn’t be stuck with having to take care of everything including bills and hard labor. I mean, when I had to work two jobs to make sure the bills would get paid, or the guys sat on their asses while I hauled heavy stuff or packed for a trip, it was exhausting. I also got incredibly tired of hearing why the boyfriends wouldn’t help clean. Both of them said they didn’t know what to clean, and I had to tell them. I asked them how they thought I figured out what needed to be cleaned? I never got an answer to that question.

So around 2005 I was dating heavily through internet sites. I was very excited to start up a conversation with a guy I’ll name Al. He was a high school history teacher, and he could string complete sentences together and speak in a respectful manner. Al was completely average looking with straight brown hair and blue eyes and a very thin build. I thought he had everything I had been missing previously in other dates and relationships. Al was also very responsible.

Our first date was dinner. The conversation did not flow easily. I tend to be animated when I speak, and he was the complete opposite. I felt a little sorry for his high school students because he did not seem to be an impressive orator. But I thought I was probably being too harsh, and so when he asked me out again, I agreed.

It did not take long for me to reveal to him that I was wearing wigs to cover up my bald head. Al took it well and asked a few questions, but the conversation went much better than I expected, so it was a huge relief. We had more dates at museums and bowling alleys. We did not kiss very much and we never had sex or even got close.

For what ended up being our last outing together, we picked a random music venue at the northern end of Phoenix. Al picked me up and drove us there at exactly five miles per hour under the speed limit the whole way. If you have never been to Phoenix, one important thing to know is that no one who wants to live to see the next day drives under the speed limit – most go 5-10 mph over as a standard. Anyway, that evening’s feature was a singer/songwriter that neither one of us had heard of before, and there were maybe eight people in the audience, but we both really enjoyed the performance. Al even bought the artist’s CD and had it signed.

Afterwards we went back to his house and talked for a while on the couch. Al made his big move and kissed me. I am not a fan of kissing with tongue (especially if my counterpart is a huge producer of saliva and I nearly end up drinking it). Poor Al had no technique whatsoever. It was if a fat worm stuck its head out of a hole and wiggled back and forth a bit. I was startled and consciously fought the urge to do the crab crawl backward. Suddenly, he grabbed my right breast and sort of did a “wax on, wax off” motion. I could not stop myself from making a sort of whimpering sound to match my thoughts, which were along the lines of, “Oh shit, this is very, very bad.”

Al sat back and said, “You know, that is the first time I have heard you respond with passion.” I lost all faith that he would know where any of my important bits were located or what to do with them. I extricated myself and told him I was tired and was heading home.

A few days later I called him and told him that I didn’t think we were a good match. Al was respectful, or stoic, or…gosh, nothing! I am sure he was probably disappointed because he wasn’t getting laid anytime soon, at least not by me, but I couldn’t tell from his voice if he was or not. And that is why I couldn’t carry on. This proves that a list is great as a guideline, but checking items off when they are met does not guarantee a love connection.

I’m in my early 40’s now and I still keep a list. If I would combine all of my previous and present requirements, it would look like this: The person I take on in the next relationship must be tall, have blue eyes, play the guitar and sing, have no back hair, do his own laundry, pay his own bills, give me back and foot rubs, not be a follower of any sports, love the arts, enjoy traveling and have an active passport, be at least a fair cook, be nice to me, be a feminist, not grab my boobs while we’re grocery shopping, take the initiative to clean, love animals but not have any, love kids and maybe or maybe not have any, not steal from me, have a witty sense of humor, chew with his mouth closed, brush and floss every day, be a master of lovemaking skills, and be a good driver.

But since the Keebler elves aren’t exactly making men to my specs, I suppose at this point I’m going to settle for someone being nice to me.

I Can’t Feel My Face!

I had two live-in boyfriends during my time in Cincinnati. The second one was Drummer #1, introduced by the guy who was in charge of our servers at the law firm. Apparently Drummer #1 had a weakness for women from Minnesota, with our light-colored hair and blue eyes (except mine are green). In theory he seemed like a good match for me too because of his musical leanings – besides drums he also played guitar – and he was a tech guy, which was my new field at that time.

I still remember our first date vividly. Drummer #1 was very tall (6’3″) with a big, toothy grin, deep-set blue eyes, short brown hair and a flannel shirt. He was very, very nervous about meeting me. We went on a double date with my friends, and we started off sitting across from each other at a crappy table with bad vinyl chairs while a band set up. An hour later the band was in full force and Drummer #1 managed to down four shots of Jaegermeister and two Jack & Cokes. He got up to go to the bathroom and when he returned, he sat down next to me instead of across from me, started rubbing my back and then poked his cheeks and said, “I can’t feel my face! I can’t feel my face!” Before the night was done he had four more Jack & Cokes.

I agreed to go out with him again, even though the drinking wasn’t ideal for a first date. I knew it was his nerves. Plus he kept telling me how cute I was.

It was another one of those things that turned into us spending loads of time together immediately. After the third date when he found out where I lived, he would throw pebbles and sometimes even dimes and pennies at my apartment window to surprise me and let him in. He was living with his parents at the time. After about eight months, Drummer #1 and I moved in together.

I didn’t have the easiest time with meeting his parents. I never went over to his house, he just met me out or came and picked me up. One time during the summer we were at a blues festival and Drummer #1 knew his parents were there as well, and they wanted to meet me, so we set off through the crowd looking for them. We walked back and forth and back and forth in mobs of people but weren’t able to find them, and I had no idea who to look for anyway. However, his parents saw us and didn’t call out to us every time we passed – because, as it turned out, his mother thought I was too fat and ugly for him. (Disclaimer: I was around size 8-10, pretty darned okay by today’s standards.) When they invited me to join them for Christmas that year, I absolutely did not want to go, but I did anyway. His parents ended up loving me.

Anyway, up to that point, Drummer #1 had been an irresponsible bill payer and so I had to have all of the utilities put into my name when we moved in together to avoid having to pay large deposits. For the first year that we were together he was one of the sole tech guys for a small manufacturing company. At this point my hair was falling out with a vengeance. He always wore a blue fleece pullover to work and every day he managed to pick up thousands of my blonde hairs on it like he was wearing velcro. At one point the guys he worked with asked if there was something wrong with me based solely on the volume of my hair that would show up on his clothes.

After the first year Drummer #1 switched to a job at the University of Cincinnati. For some of his time there he happened to work with a doctor who was researching cures for alopecia universalis. He would come home and tell me about seeing others like me who were examined under a magnifying glass so they could be determined to be the most extreme hairless cases for the studies. I still would never qualify because no matter what falls out I manage to retain a few sprouts of hair on my big toes. And for some of the time, Drummer #1 said that he was being sent down to the “hole” – some underground network where he would have to suit up in a big yellow suit for 2-3 days while he ran programs. He also claimed to work with some cops and even some FBI agents.

Drummer #1 made the mistake once of claiming that I was not doing enough to keep my hair. You know that old tired tune of “Why don’t you just _____?” like everyone else is the expert on your body? I made him go with me once for a session where the dermatologist injected each patch with a combination of Lidocaine to numb my head after the shots were done and prednisone to inhibit the white blood cells from taking over my hair follicles. Every session would be about 75 injections; that time, Drummer #1 said, with big eyes, that he could see the doctor flicking the needle up slightly after each injection so it looked as if he was tearing my skin a bit every time. After that, Drummer #1 never told me I wasn’t doing enough.

I finally started wearing wigs when I knew trying to keep my hair or grow new stuff was completely hopeless. At one point I purchased a styrofoam head with a super long neck so the longer wigs wouldn’t rest on the counter tops when I took them off. I would perch the head form and hair on the back of the toilet at night. Every morning for a week, Drummer #1 was so out of it that he would scream when he got out of the shower because he thought someone had sneaked into the bathroom while he was bathing. I would lay in bed nearly pissing myself laughing.

After a few months of living together, things started to slip with the bill paying for Drummer #1. We began receiving calls that our electricity and water were going to be shut off for non-payment and every time I’d have to hurry and pay them, with him promising to investigate why his payments hadn’t been processed. He claimed to be clueless as to why there always seemed to be lost payments.

Then one day in June we were supposed to be flying back to Minnesota for my 10th high school reunion. The flight was out of Columbus, a good hour and a half away, and at night, so I told Drummer #1 what time he had to be home from work in order for us to catch the plane on time. When the time rolled around, he was nowhere to be found. This was prior to the time of cell phones, so I had to call his office. When I got no answer, I called campus security and asked them to cruise around to see if his car was there. After striking out again, I opened up his top dresser drawer where I knew he put all of his receipts and mail. I was stunned to find six months worth of bills in there, all unopened, including all of the utility bills he had told me he had paid. I was incredibly angry and still panicked about not being able to make our flight in time.

The kicker, though, was when I went to get the mail before trying his work phone again, I received my credit card bill with another nasty surprise. When I had been sick the month before with strep throat and stuck in bed on my birthday, he had taken my credit card and charged up hundreds of dollars. I was LIVID.

Drummer #1 showed up an hour late at home and not ready for the trip at all. He hurriedly threw things into a bag. The entire drive up to Columbus I only had my demon voice to use on him. I told him that if he touched the mail in any way including just taking it out of the mailbox, I would get a post office box and he would have to wait for me to give him his mail. No more hiding and lying.  I hated him.

Five months later Drummer #1 made arrangements to buy a car through a program with the University; the payments would come out of his check directly so he wouldn’t have to worry about making timely payments. However, “something” happened where payments were still missed and his car ended up being impounded. Drummer #1 promised to pay me back but it required about $1200 to get his car back.

I had vowed to return to the southwestern U.S. about two years into our relationship. I didn’t feel any real connection with the city and the winters were depressing. I told Drummer #1 that I was moving with or without him. He seemed enthusiastic about a major change and we even took a trip out to Arizona to check it out. When we were driving back from the Grand Canyon towards Phoenix, we were stunned by a quadruple rainbow that glowed across the sky. I know now that it’s an extremely rare phenomenon, and believe me when I say that even truckers pulled over on the highway so they could snap pictures of these four perfect arcs filling the sky. I took it as a sign that I was making the right move.

When we returned from the trip, I went into working and saving mode. I put in about 70-80 hours between two workplaces to make sure I’d have money for the big move. Drummer #1, however, was still not being responsible for his bills and wasn’t making any effort to pay me back.

In January of 2003 I received a strange phone call from a girl who addressed me by name and informed me that she had been fucking Drummer #1 for at least a year. I kept calm and asked him about it when he returned from work. He said that the girl was calling all of his friends and trying to make their girlfriends freak out. I had no way to verify this because I didn’t know any of the girlfriends.

In July 2003, Drummer #1 missed more car payments. I was at the end of my rope. I told him he was on his own with figuring it out because I had to save money to move. Then in September, I received a call from the landlord who told me that he knew I was leaving, but Drummer #1 asked if he could stay on. Drummer #1 never had any intention of moving.

I bagged up all of his belongings in garbage bags and threw it all to the bottom entryway stairs. I went over to his parents’ house and told them he would need a new place to live. They revealed to me that he had borrowed $1600 from them, telling them it was to pay me back. None of the money made it to me, though. His parents told me that he had been a pathological liar his whole life and they hoped that living with me would have cured him of that. I wish that they would not have remained so loyal to their son and instead warned me.

My friend’s dad, an attorney, wrote a letter of intention to file suit if he didn’t pay me back all of the money by October 29th. On October 29th he appeared at my workplace with a cashier’s check for the entire amount he owed me, nearly $5,000.

I used that money to pay for the moving van and my new apartment in Phoenix.