Short Poetry – Poured Out

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Poured Out
By: Maranda Russell

Why do I feel like
my poetry sucks?

I try to write,
only to find myself
empty,
poured out like milk
and starting to
curdle.

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Why Doctors Frustrate Me – Trying to Get Testing Done

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I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!

Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.

However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.

The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).

I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???

Hypomania Turns Me Into a Jerk

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Yesterday was a weird day. I started feeling hypomanic (probably because of my psychiatrist upping my antidepressant again). Even though I was already feeling restless and off, I decided to go ahead and go with my husband to our weekly meditation group. Turns out that wasn’t the best idea. Have you ever tried meditating or even just sitting still in the dark for 30 minutes while hypomanic? STRESSFUL.

I didn’t outwardly spaz out or draw attention to myself, but I sure felt like it. My head was buzzing with what felt like a million thoughts and feelings, and my body wanted to get up and run around the room. I wanted to scream, but of course I didn’t want to make a scene and freak everyone out, so I screamed on the inside. By the time it was over, I felt like a nervous wreck.

As we were leaving, I told my husband what was going on and how much I had struggled, but I’m pretty sure he didn’t really get it, because a few minutes later he sort of sent me over the edge a bit. We stopped at the Chick-fil-A drive-thru to get some ice cream, and I became pretty agitated because there were two lanes and the one we joined took FOREVER. People who joined the other line after we got there had gotten their food and driven off BEFORE we ever got to order! Normally this kind of thing wouldn’t bother me so much, but in the state of mind I was in, it was infuriating.

My husband tried to distract me and cheer me up by being playful and sort of tickling/poking me. Normally this would make me laugh, but with all my senses already on overdrive and feeling angry, I screamed at him to stop and smacked his hand away. It was a huge overreaction and I felt bad afterwards, but I simply couldn’t help it. The rest of the drive home I could tell he was not sure how to act and that made me feel even worse.

Today I’m feeling more normal again, but we’ll see how it goes once I take my medication…

Feeling Like Shit Art

I’ve been feeling like shit for a few days now (honestly, it has been longer than that, but the last few days were especially bad). So, my creative side has definitely been expressing that. I decided to make a couple ACEO sticker collages, and as you can see below, my mood comes across loud and clear with my black graffiti scrawls on the colorful backgrounds. I wouldn’t exactly call it “good art”, but it is expressive.

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I Could Have Been Labeled a Terrorist

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Sometimes I feel like I live in an entirely different world than the one I grew up in. One thing I am greatly thankful for is that there wasn’t the sensitivity to threats of violence or stupid immature outbursts when I was a kid and teen. I think about how common it was when I was a kid to joke about “blowing up the school” when you were mad, or how easily we threw around the “I’m going to kill you!” threat. Of course, we didn’t really mean it, to us, it was just a way to express frustration…but if kid me were to make those comments today in school, I would likely be taken away in handcuffs.

I also think about a stupid reaction I had as a teenager to a betrayal by someone I had a huge crush on. This person I had a crush on had been sort of leading me on and making me think that we might have a future together. We worked together at Burger King, and he was a few years older than me, but probably not much more grown up. When I found out that he had been lying to me and was secretly in a romantic relationship with someone else we worked with, I was SUPER PISSED. Both of these people I worked with had pretty much lied right to my face about their relationship numerous times and one day at work I simply went off.

Everyone else was gossiping about their affair and I was pulled into the conversation. Several knew how I had felt about him and asked if I planned to do anything. Being someone who was viciously angry and has always had a dark sense of humor, I said maybe I should go set their house on fire with them inside. Then I remembered that the girl had a daughter and I corrected myself by saying I would make sure I got the little girl out first. It was a dark joke. Clearly not something I intended to do, just a way to let off steam. I have often thought though that if that were to happen in our world’s current climate, I seriously could have been arrested for making terrorism threats.

It is these memories I revisit when I see stories about kids getting expelled or investigated for making pretend guns out of Pop-Tarts, shouting something in anger, or making pretend shooting motions with their fingers. I think of how stupid and immature I used to be and how I lacked the wisdom to see the potential consequences of a rash, snide comment or playful dark humor. I certainly understand our world’s over-sensitivity to these things today, but I can’t help but think of how naively innocent I once was when I would foolishly spout off without thinking it through.

Depressing Health Update

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I went to the doctor today because my ear is still killing me and I’ve been running a fever for several days. Turns out I have another middle ear infection…this has to be about the sixth one in six months. Boy, am I getting tired of this. Not much I can do either, since I have tried many “alternative medicine” cures for ear and sinus infections and have went the whole ENT and allergy specialist route, only to find that nothing really works. In the end, I feel like it is just my own immune system working against me.

The doctor also said that she suspects the mouth sores I was dealing with might have been related to Coxsackie Virus (or Hand, Foot, and Mouth Disease). Adults don’t catch that illness nearly as often as kids do, but it can happen, and with my autoimmune issues, I guess it wouldn’t surprise me to find out I did get it.

So, I am on ANOTHER course of antibiotics. Something that depresses me to no end because I fear with all the antibiotics I have had to take lately that I may end up developing C Diff again, which caused me to be hospitalized for almost a week a few years ago. Needless to say, I am not in a good place physically or mentally and am just tired of it all. This chronic illness shit sucks.

Vacations: A Harsh Reality of Chronic Illness

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

Fundamentally Alone, but Craving Understanding

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The past week or so has been rough on me mentally. I’ve had way too many weepy days where I would cry for seemingly no good reason. Several times I had anxiety/frustration meltdowns. You could argue about whether they were “autistic meltdowns” or “bipolar meltdowns”, but at the end of the day, does the label really matter? What matters is the suffering and finding a way to get through it.

I’ve been upset partially because I feel misunderstood by everyone, including my therapist. Mental health professionals in my experience are generally kind, caring people who truly try to understand, but I think some things can’t truly be understood unless experienced personally. Unless someone has experienced the same level of trauma throughout their childhood and adulthood, been blessed and cursed with Asperger’s and Bipolar, been dealt the same personality and experiences, and developed the same chronic physical conditions, they probably can’t relate exactly to my plight….anymore than I can relate exactly to theirs.

In the end it often feels like we are all fundamentally alone in our experience of the world, even though we desperately want to feel connected and understood. Fortunately, we can connect with others through some aspects of our experience, so perhaps that is what needs to be focused on. It is easy to feel completely separate and different from everyone else. At a base level, it is true for all of us, but that doesn’t mean we should quit trying to reach out. And so, I continue to write and seek out common ground with others, both online and in person. Quite frankly, I’m not sure what else to do.