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I’m Just The Patient

Posted on by akiwifreund

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.

Grief and Acceptance

Posted on by akiwifreund

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

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

In closing: Send kittens and puppies and rainbows.

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Wendy's avatarPicnic with Ants

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

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

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

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You’re The Only One Who Can Make You Happy

Posted on by akiwifreund

I guarantee you that as soon as you take charge of your own life, you will be happier. Even as things fall to shit – because they do from time to time – the sky will still be blue, you will still love the taste of _____, you will still love your bed, you will still have your favorite song, those things will still belong to you. You are the captain of your ship.
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Rosie Culture's avatarRosie Culture

At one point in our lives, we all experience sadness. Sometimes we know why, the reason is obvious. Someone died, we lost our jobs, everything is going to hell piece by piece. Sometimes we don’t know why, we’re just sad. When we do know and when we don’t, it’s hard to get out of that sadness. It’s really difficult to climb out of that hole.

We can’t find the answers in ourselves so we look for them in other people. We reach out for helping hands, but often times we put way too much weight on them. We take all of the weight off ourselves and lose sense of who we are. All we can remember is the sadness inside, so we look for happiness in other people.

Yeah, other people can help you. Friends can motivate you, family can support you, a relationship can take some of the pressure…

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Careful, Your Old Is Showing

Posted on by akiwifreund

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

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

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

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

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

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

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

My Adolescent Heart Is Cured

Posted on by akiwifreund

Right at the cusp of my childhood and the beginning of the time when I became self-conscious and awkward, we moved from a large metropolitan area with a population of 1.5 million people to a town of 300. My bus ride to school was long and filled with strange faces; it took an hour to get to a town of 700, where people rarely moved to or away from and were all largely related. In fact, I had a couple of classmates who were the offspring of first cousins, sentenced to lifelong special ed classes thanks to genes that were far too similar to have been considered safe to pair up.

I was bullied terribly my first year at the farm town school. It really wasn’t until the next year, 6th grade for me, that I started making friends. I also became a little more comfortable expressing myself – including being vocal about crushes on boys. One boy in particular held my attention for ten whole years. I’ll nickname him C. C. Deville, because he played guitar and wanted to be a rock star just like the guys in Poison and Motley Crue.

I made Valentine’s Day cards for everyone in my class. However, for C. C.’s card, I did exactly what I read about in a book, which was write a little poem without signing it:
“You can’t be my Valentine, you look too much like Frankenstein!”
He was intrigued! It worked, just like in the book! Except when he thought another girl wrote it for him, and he started making eyes at her. That wasn’t supposed to happen.

Two years later a friend from Minneapolis stayed with me for a couple of days and came with me to school. C. C. Deville was doing everything he could to charm her, and she flirted right back, even though she knew I liked him. She liked him too and thought he was very cute. Later that year he got suspended for smoking pot under the bleachers in the gym, so obviously he was a little bit of a bad boy. No wonder all of the ladies were flocking to him like bees to honey.

When I was in 9th grade, I tried out for and made the cheerleading squad for boys’ JV basketball…which meant that I would be cheering for HIM. Oh, sure, there were a few other boys who were cute too. But there was one time on an away game that I was floating on cloud nine because we had to drive two hours through a snow storm on the bus and I was sitting in front of him, and he let me borrow his leather jacket to sleep on it. I could smell his cologne. I thought maybe he might eventually warm up to me since he lent me this article of clothing. Instead, he started talking to one of the other girls on my squad and eventually started dating her. I had confessed to her that I had had a long-term crush on him and I’m pretty sure she spilled the beans to him if he hadn’t already figured out that I had been throwing myself at him for years at that point.

(2 years break to attend arts high school.)
(2 years pass while I move back and forth between Michigan and Minnesota.)

When I was 20, I discovered that a former classmate was living in my apartment complex. She said, “Oh, did you know that C. C. Deville also lives here?” I just about shit my pants. It turned out that he lived above me. Shortly after that I ran into him, said hi, exchanged pleasantries, talked him into putting my new license plate on my car for me. (“Oh, C. C., you’re so manly, thank you!” Okay, no, I didn’t say that, not really.) Sadly, I didn’t see him after his dad and my aunt died and I left on my big trip around the U.S. to find a new place to live.

Facebook has directed us back into each others’ lives many years later. However, he posts maybe 6 times a year, and my average is maybe 6 times a day – mostly goofy stuff, sometimes political stuff, and occasionally medical updates. As far as I can tell he hasn’t moved much, he doesn’t have children, may or may not play in a cover band, may or may not have a girlfriend, and may or may not work in a bank. In other words, we are really only peripheral observers. All that we have in common is that we have been in the same place at the same time in the distant past.

Today, for instance, he posted something on Facebook that really weirded me out – mainly because it didn’t seem like he wrote it (though he was taking credit for it, but its rhythm and spelling and punctuation didn’t match the rest of his writing in other posts), and because it’s some sort of rambling message about “God.”

It starts out nice enough: “Most of the time, our biggest obstacle is us. Maybe we’ve stopped dreaming.” True enough. Then: “Or, maybe we’re refusing to share our dreams out loud because we fear that God’s reputation might be at stake. God’s reputation is fine. It’s our reputation as leaders that we fear taking a hit. The dreams in our hearts were planted by God who loves us!”

“God’s reputation”? That, my friends, is anthropomorphism – assigning human qualities to non-human entities.

He goes on: “The day we stop following the dreams God has put in us is the day we allow ourselves to go into cruise control. When our biggest desire starts to shift from seeing God do great things to making everyone as comfortable as possible, we know we’re losing sight of how big God is.

“Fight the urge to maintain the status quo. Instead, do everything possible to advance the cause God placed in your heart. Stay focused on what could be rather than what has been.”

This is what has cured my heart once and for all: I feel like C. C. Deville deliberately lived a small life, looking for hero worship in a small town, and is now turning to “God” to try to make his life feel expansive and limitless. A classmate said that she was surprised at his preacher-like post (hell, I was too), but he replied that he wasn’t trying to be a preacher, he was just coming to his senses. I think it’s more like he realized that he’s middle aged and he hasn’t done anything he said he said he was going to do when he first reached adulthood.

For the longest time I felt inadequate and undesirable while he chose girls around me. Now I feel as if I have run circles around him with my life experiences and we would have nothing to talk about.

 

National Doctor’s Day

Posted on by akiwifreund

I’ve seen the dynamics in doctors’ offices change greatly during my duration as a frequent patient. I know it can’t be easy by any stretch of the imagination.

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The past years have been quite the journey & have taken me to some incredibly high and low places, both professionally & personally.  I owe quite a bit of that ride to doctors. So on this N…

Source: National Doctor’s Day

My Recurring Awareness of Death and the Numbers 1017 & 336

Posted on by akiwifreund

This post is fascinating to me. I’ve never woken up and thought of numbers or considered looking to find their meanings; I’m strictly a mostly-Taurus with a touch of Gemini type of person, and that’s are far as I go. In the grander scheme of things, I don’t think it’s a coincidence that this is the topic today. Nikki and I hosted our Blab on advanced care directives – we HAD to talk about death. Besides having three people pass away in eight months, I am facing my own uncertain future, but I can’t claim that I have experienced flashes of ceasing to exist. I would imagine that feels pretty profound.
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Your Ex On Social Media

Posted on by akiwifreund

As others have indicated, I delete and block. I might unblock briefly just to check someone’s general location so I can be certain they aren’t lurking nearby, but I mostly have to pretend the guy died so I can move on.
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Rosie Culture's avatarRosie Culture

It’s almost the first thing I do after a break up. I unfollow my ex on Twitter and Instagram, I unfriend them on Facebook and Snapchat, get rid of their pictures and their online existence.

They call me out on it. They say I’m acting childish, immature, bitter, and petty. But really it’s the only way I know how not to be childish, immature, bitter, or petty.

When I get into arguments, I walk away. For the most part, I put my phone down and stop speaking. I don’t want to say something I’ll regret. When I delete my ex from social media, it’s my way of walking away.

It’s extremely hard to get over someone you dated and dedicated a good chunk of your life to. It’s hard enough to run into them in person, but having to see their face on every app you open is one…

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