New beginnings (again)

Well, I kind of took a hiatus from this blog for a while because firstly, I got a bit complacent. Also, nothing new or interesting had been happening. However, I’m finally taking a step– maybe not too far forward, but at least in the right direction, which is still progress. I started a new job as a receptionist/front desk person at a dance studio. This means normal hours, consistent hours, and less dirty work.

I really like my co-workers from the kitchen. They became friends, and some like family. The job just isn’t right for me. Maybe a receptionist job isn’t completely right either, but I won’t know until I try. It’s certainly something different than what I’ve been doing, which is exactly what I want right now. No substantial physical labor, no uniforms and no coming home smelling like soggy vegetables. (Full time and a pay raise is a great motivator, too.)

Perks include being around music, dancing and happy people, and occasionally petting the puppies that come to work with one of the owners. The best part about the job though is that I’ll be able to use some of my skills and training from school and previous related experience in real life. They want to use my skills. I’m already brainstorming what I can do.

I really think this will be a long-term home for me. The kitchen I’m at now has been long-term too, but I never intended it to be. I never wanted to get comfortable there, but I think I’m okay finding comfort at the dance studio. I can grow there.

It’s not that I was embarrassed to say I worked in a kitchen when people asked what I did for work, but I always felt like I should have been doing more. My answer to the question, “What do you do?” usually started with “I’m only in a kitchen right now,” and always ended with “…but I’m looking for something in communication.” I worked hard, especially my last year in college, to finally get my Bachelor’s degree and I wasn’t even using it. So while this may not be my ending point, it’s a good place to get comfortable for a while. I can take a break from searching.

So wish me luck on this new adventure and I’ll be sending good vibes to everyone else who needs them in their job search right now. Updates to follow!

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When you realize…

…That you don’t have to shop in the plus size section anymore. I recently went shopping with my mom at the mall, and the first store we went in was Forever 21. Now, I’m sure that almost anyone who shops there can admit that their sizes are reasonable compared to other stores, but are still cut just a little small. So, naturally, I head upstairs toward the “Forever 21+” section. After looking for a while through their very limited selection of plus size clothing, my mom says to me, “You know you don’t have to shop in this section anymore, right?”

But I didn’t know. I wasn’t aware that my body had changed that much. Thirty-five pounds sounds like a big number, but I didn’t see what the scale was telling me in my reflection. However, I broadened my horizons and wandered through the rest of the store. I didn’t know where to start, honestly. The clothes on the hangers looked so small, there was no way they were going to fit me. But I picked out a few shirts to start and guess what?

They fit. Comfortably.

I haven’t been that excited in a very long time. Shopping is always an emotional process when you’re plus sized.

  1. Pick up a cute piece of clothing
  2. Doubt that it will fit, or look good on your body if it does
  3. Try it on anyway, secretly hoping it will fit you like the jeans in Sisterhood of the Traveling Pants
  4. Look in the mirror, immediately take it off, and explain to whoever you’re shopping with that you “just didn’t like it”
  5. Repeat

Being used to that step-by-step process, I was hesitant to buy anything that was labeled normally. However, when I did buy it, get it home, try it on and still like it in my own mirror, it was such a good feeling. It’s a beautiful feeling to see beauty in your own reflection.

I know, I know, beauty is on the inside. But it’s nice to like yourself as a whole rather than in parts. I still have a long way to go, but for the first time I actually think I can get there.

 

progress

Babysitting

I’ve grown to really like my co-workers. And when you see the same people so often you learn things about each other, so obviously they all know that I have diabetes, and most know about my memory loss. In fact, I think my boss may have had an in-service type meeting with all of them to tell them to keep an eye on me.

I appreciate the concern, I sincerely do. They let me know when I look pale or especially red in the face. Most of the time though it’s because the conditions we work in are very hot. It’s a kitchen, and not only is there something constantly cooking, but the dish machine emits a lot of heat as well.

Sometimes I do need to stop and have some juice or eat something. But it feels like I’m being babysat when they make me stop and list everything I’ve eaten in a day. My medication limits my appetite, but I know when I have to eat whether I’m hungry or not. It’s nice to have people caring about my well-being. I just wish people would understand that I can (and I will) take care of myself. The constant checking up on me isn’t so much annoying as it is insulting. They don’t mean it that way, but it makes me feel like a child; it’s demeaning.

I can’t see myself so I don’t know when my appearance changes drastically or suddenly. I get that. I would be concerned too. I’m not in any way blaming my co-workers, because I would be concerned if I saw changes in them too. It’s just a circumstantial thing that, simply put, sucks.

Is there a way to show concern differently? I’m not even sure there is. And how could they trust me to know my own health? They barely know me medically, even with as much time I spend there. I haven’t exactly written up a full report on my medical history.

This is just something I’ll have to deal with as I spend time with new people. And I’ll say it again, I appreciate their concern so much. I just don’t want to feel like other people think they’re responsible for me. Not only does it feel like I’m always being watched, but I feel almost a little guilty that they think they need to babysit me in a sense.

Like nausea or extreme thirst, this is just a side effect of being a melting pot of medical abnormalities. Every reaction is only human, including mine. I know I owe a huge thank you to all of the people who have expressed concern. And I’ll fully acknowledge that later. But in the moment, being frustrated comes much easier.

Life Changes

Me again. Not much new happening, but I just thought I’d update because, well, I haven’t written in a long time and I’m starting to miss it.

Last I left you I had just started a new medication called Trulicity. It was supposed to help my blood sugar, reduce my appetite and consequently, help me lose a little weight. On top of the medication I’ve been eating healthier and exercising more.

I used to eat because of my love for food; now I eat out of necessity. Don’t get me wrong, I still enjoy eating my favorite foods, but I’ve learned to control how much I eat, aka, stop eating when I’m full. It’s stopped the majority of cravings too, which is a beautiful relief.

This morning I reached a big goal of mine when it comes to weight. From my heaviest weight I’ve lost almost 30 pounds. I still have quite a way to go but for the first time, I’m seeing results without suffering from hunger or cravings. And it’s a steady loss; no more of this up and down stuff.

Of course, I wish I could do this without the help of medication. But my body functions differently than most in more ways than one. My health has been a chain reaction with diabetes; it has caused hypothyroidism (slow metabolism), kidney dysfunction, hyperglycemia (high blood sugar, resulting in the storage of insulin in fat cells) and other complications that may or may not have affected my weight. Sometimes, people with specific health conditions have to accept that they work differently. I’m finally accepting it; but I’m not letting it defeat me.

Like I said, I still have a way to go before I reach my ultimate goal but it’s finally seeming realistic.

Pictures to follow when it’s more final that I’ve really hit this goal.

“Going through these life changes, gotta keep my head moving.”

Meds meds meds

When you have a medical condition like diabetes, it seems like a hundred other minor conditions pop up. Either a new one sprouts with every doctor visit, or the old medication stops working and you need to start a new one. Very few have caused the side affects on the warning lable in my case, until the most recent one I’ve started.

My endocrinologist  (diabetes specialist) recently put me on a medicine called trulicity. It’s taken mostly by type 2 diabetics, but he believes it will help my blood sugars, and even help moderate body weight.

He was very honest about how it works as well as the other effects it would have on my body. He told me it would curb my appetite, lower my alcohol tolerance and may cause nausea.

So far, I have experienced all three. I haven’t had the urge to snack or overeat at all in the week that I’ve been on it. I’ve had minor stomach pains, usually a hollow pain or slight cramping. Lastly, I felt almost hungover from one beer after a night out with some friends. I’ll spare you the details, but I just couldn’t keep it in my system. It was like I skipped the intoxication part and went straight for the aftermath.

However, my blood sugars have been better and I don’t mind the decrease in appetite. I’ve dropped 4 pounds in the one week I’ve been on it. I still have quite a way to go, but I’m thrilled with the result so far. It’s hard for anyone to lose weight, but much harder when you have diabetes.

While I’m not thrilled about having to be dependent on man made prescription drugs to do what human bodies are supposed to do naturally, I’m excited about the potential to stop struggling with things that healthy people may have an easier time with.

Sometimes you have to weigh the side affects against the issue that a drug will be resolving. It’s an almost balanced scale, but it always leans slightly heavier one one side. All I can do is hope that my doctors know best. They’ve gotten me this far, so I’m going to trust them until I have a reason not to.

Updates to follow.

Done but not finished

Exactly 3 weeks from tomorrow I will be done with cognitive therapy. My therapist feels that she’s done everything she can for me and there will be no grounds to submit to my insurance company for more visits.

I have many mixed feelings about being done. On one hand, it will be nice to not have to schedule my week around therapy visits. On the other, it’s like they’re saying, “this is as good as you’re going to get.”

I don’t want to be given up on. I know in my mind that this is not what’s happening, but it’s what it feels like. I described it to my best friend who let’s me rant about absolutely everything like this: I feel like a cookie that’s being taken out of the oven about 3 or 4 minutes too early. While still delicious, they aren’t very easy to get off the tray in one piece. They’re not solid.

I know that I have to take more initiative in my own recovery. I have to use the strategies that I learned in therapy and apply them to real life situations. For the first time since my incident, it’s all up to me.

I’m not so much scared as I am defeated. While therapy gave me strategies to help cope with my memory loss, it did not fix the problem. I always knew it was a long shot, but I guess I sort of hoped for a miraculous change. Like I would walk out of therapy one day and be completely healed. Unrealistic, I know, but now that I won’t even be going anymore it’s even more impossible. I don’t feel like I’ve reached the light at the end of the tunnel. I’m not sure the tunnel ever ends, to be honest.

I know I’ll never be 100 percent of what I used to be. I’ll always struggle. But what gets me through is looking back on where I was and seeing how far I’ve come. I’m improving every day, sometimes it’s just hard to see because the change is so gradual. Regardless, life goes on, and I am eternally grateful I get to experience it for a little while longer.

“I’m not where I should be. I’m not what I could be. But I’m not who I was.” -Real Friends

 

“I’m Sorry”

It’s become a suffix to all of my sentences. Ask a question, get an answer, say, “okay, sorry.” Even when I know I’m not, there are times I feel like a burden to people with a perfectly okay memory. When I apologize, I’m not apologizing for asking someone to repeat something they just said. I’m apologizing because I shouldn’t have to ask.

It’s a self confidence issue. What I’m actually sorry for is not forgetting the time you just asked me to start a task, but knowing a normal person would be able to remember. I, instead, have to interrupt what you’re doing to ask again. I’m not what I used to be.  

But I also know that it’s not my fault, and that I’m not finished. People grow constantly, brain injury or not, and I’m still working on myself. I just have to work harder than most people. So, lately I’ve been trying to replace the word “sorry” with another phrase that shows gratitude for people helping me rather than one that places blame on myself: “Thank you.” For example, at work, where I have to prepare a certain amount of desserts for residents:

Q: How many pureed desserts do we need again?

A: 20

My response: Okay, thank you. About a week ago I would have started my question with “Sorry, but can you tell me again…” and ended with “Okay, sorry.” I feel like the constant apologies are even more of a burden than the thing I’m actually apologizing for. They solicit an affirmation that my questions are not a bother, even if they are, and it just reminds whoever I’m speaking with that I might be making a mistake.

With my new response, it also insinuates that I am actually listening to what a person is telling me. It’s gratitude rather than guilt, and I feel that both parties are more comfortable with that.

What I’m learning is that I shouldn’t have to apologize for something I have no control over. It’s not my fault, and it isn’t anyone else’s fault either. I still let a few apologies slip now and then, but I’m better every day. I hope that continues.

Forgetful Films (and TV)

Some of my favorite movies, even before my memory loss, had to do with memory loss. But after losing a lot of my memory, I watched them differently; more critically. While some films enforced stereotypes about memory loss, others hit the nail right on the head. Now, before I start, I have to add a disclaimer: just because some of these movies and TV shows aren’t true for me, that doesn’t mean that they can’t be true for someone else. In fact, one or two of them are based on true stories. However, some claims are absolutely ridiculous when it comes to memory loss, and it’s obvious that the script writers have not had any experience with the subject and that’s okay. What’s not okay is people taking those films and TV shows as fact. So here is a breakdown of (in my experience) the most accurate and inaccurate depictions of memory loss in popular media.

1. The VowThis one is tricky because it is based on a real couple who went through a real situation. I don’t want to believe most of what happens, mostly because the film industry used this horrible event of a car crash to portray a developing relationship rather than learning to deal with the memory loss itself. I suppose they had to for entertainment value, but a romantic story line shouldn’t be the main event in a person’s tragedy or recovery. In fact, the point of view wasn’t even from the character who had the accident; it was from her husband who had to deal with being forgotten; not the one who was doing the forgetting.  Rating: 4/10

2. Eternal Sunshine of the Spotless Mind– This was tied for my favorite movie even before my incident. And this one is different because it doesn’t claim to be realistic. In fact, it’s the obviously fictional realism that makes the movie what it is. However, one thing it does get right are the tiny flashbacks a memory loss patient can get. I remember certain scenes of my life right before my incident, but in bits and pieces. They disappear as quickly as they come, which is represented in this movie. Love story aside, this movie explains what it’s like to remember people you were once close to and realize your relationship has changed. And sometimes, you get the chance to start over with them. Rating: 8/10

3. Finding Dory Easily the most accurate representation of how my life works. Leave it to Disney to make me relate so strongly to a fish. All of the little situations she finds herself in throughout the movie, even in Finding Nemo, are meant to make the audience laugh. And they do, even for me! But little does most of the audience know, those anecdotes thrown in the movie for comedic relief are so incredibly realistic. Something as simple as remembering P. Sherman 42 Wallaby Way Sidney is such an accomplishment when you have a short-term memory loss. Introducing yourself over and over when you meet someone new is a reality. Not remembering names of new people is insanely common. Overall, the character of Dory is silly and sounds absurd, but she simply says and acts out all the things people with memory loss feel and choose to hide, at least in my experience. She gets lost all of the time while I only find my way thanks to my GPS. Having to repeat information to herself over and over and forgetting upon the smallest distractions is something else we have in common. Following your instincts despite your illogical reasoning is something you have to trust, regardless of others’ doubts. One thing I have yet to grasp that Dory has down is knowing that everything will be okay, no matter what we forget. Maybe it’s naive to trust in an animated movie, but when it’s the closest thing to your own reality, you hold on to it. This film is hands down the best representation of real-life memory loss there is.

Rating: 10/10

4. Full House: Michelle Rides Again- This two part episode made me roll my eyes before my own memory loss, and now watching it even makes me a little angry. This show has always been on the corny side, but the way they portray Michelle’s memory loss after she falls off of her horse is way overdone. Firstly, for someone with amnesia, Michelle is surprisingly calm to go back to a house full of strangers. The dialogue is cheesy and the sentimental conversations between her family are very exaggerated. Some of the things she is allegedly confused about are things that people usually don’t forget. Like the fact that all of her family lives in the same house with her, or even the simple fact that she likes dogs.The most surprising thing though was that Michelle’s memory loss only lasted until the end of the episode. It instantly came rushing back all at once when she wakes up from a nap. The writers didn’t seem to do much investigation into what memory loss really entails. Although every case is different, I doubt anyone’s case is like Michelle Tanner’s.

Rating: 2/10

I will spare you from reading any longer, but those are just a few examples of how the media writes their own versions of memory loss. Some are absolutely accurate while others tend to embellish and take no realism from actual memory loss cases. Let me know your favorite or least favorite memory loss films and TV shows in the comments.

 

Love letter to my brain injury

WARNING: Satire ahead.

Dear Brain Injury,

Never in a million years would I have thought I would encounter someone like you. You make my head spin; my mind does loops when I think about you. And as much as I try to concentrate on other things like friends, family, food or even what I’m going to wear tomorrow, you’re always at the forefront of my thoughts, erasing every other thing that dares enter my mind.

Is it the blank stares that makes my heart skip a beat? The ones that I get from strangers when I forget something we were just talking about? Maybe, but it’s more likely the sense of insecurity you instill in me. The feeling that makes me hold back what I want to say for fear of repeating myself. Oh, how I love the awkward silences and personal connections I’ve lost because of you. The way you make my voice crawl back inside my throat, just when I think I can chime in on conversations, because I know I’ll sound utterly unintelligent gives me such a thrill.

I don’t know how I lived so much of my life without you. Holding on to conversations I had with others was an inconvenience and I’m so happy that you’ve alleviated that daily stress. You’ve made me question everything I used to know, often more than once. I love the uncertainty I feel around you. You incomplete me.

Even with all of your redeeming qualities, you still constantly surprise me. You fill me with hope when you’re able to recall a small detail, only to shut down at the most important moments. Living a life with you is living a life on the edge; it may be difficult but there’s always a new challenge that you can’t quite seem to overcome, and the adrenaline is absolutely savory.

What I’m trying to say here, valentine, is that if I had to be with anyone on this special day, it most certainly wouldn’t be you. So thank you for allowing me to see that other challenges I’ve faced were not as critical as they once seemed. As far as life struggles go, you are the only one for me. 

Your Valentine,

Casey

 

Why didn’t you say so?

When I meet someone new, I don’t introduce my short term memory loss as if it were part of my name. Firstly, it’s kind of personal for me to talk about, and secondly, that’s kind of a strange thing to say to someone. “Hi, I’m Casey and I suffer from a short term memory loss.” Change the name in that sentence and it’s an exact quote from Finding Dory. While that movie is amazing and inspirational and probably deserves its’ own post, I am not an animated fish so I can’t quite get away with saying things like that in real life.

I probably should get in the habit of telling certain people like new bosses or co-workers about it, but it’s not as easy as it sounds. I can’t exactly bring it up in an interview because of my fear of not being hired despite discrimination laws, and also because I wouldn’t know how to start. Sometimes I wish I could wear a sign that explains my condition, but other times it feels like I already do.

So how do you explain an invisible disability so coworkers are more understanding when you don’t catch on right away? In my experience there is no one way. Sometimes there is no opportunity or right time to bring it up at all, so you just keep asking the same questions over and over while co-workers give you funny (judgmental) looks.

Other times, you talk to someone for a while and then once you feel comfortable enough you can open up to them. However, that option takes time and is usually less likely to happen. You really need to let your guard down to do that and that has always been tough for me. Additionally, the other person has to allow themselves to be vulnerable as well in order to be open to understanding what you’re trying to say.

The easier thing for others would be for someone with a disability to tell them right away, but sometimes for them, that is the hardest and most complicated option. So try not to be offended if someone with an invisible disability doesn’t immediately tell you what’s going on. It’s a huge inner struggle that they have to deal with, along with dealing with the condition itself. Just know that it is always harder for someone to admit they have a disability than for you to hear it.