The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

In the Beginning… of Chronic Illness

When I first became chronically ill (long before I released this was going to be long term thing) there were cards, flowers, and edible arrangements. One of the biggest revelations I’ve had since getting sick is that people get tired of caring and sympathy runs dry.

Friends leave and family members stop asking how your doing. Teachers stop following your so called “accommodations” and respond with anger instead of understanding when you miss yet another day of school. No matter how hard you try to not talk about it, people won’t want to hear about your illness,  years or even months down the road. The one person you can’t stop caring is you, you don’t get that luxury.

The response to others acute illness always amazes me. In the past few weeks my older brother has had some random severe abdominal pain and my parents freaked out. They both tried to take him to the ER, although he refused on multiple occasions, and a few days ago both my mom and my sister took him. They all thought he had a kidney stone, but diagnostic testing showed nothing. I’m sympathetic to the pain, I offer to help and gave suggestions to ease the pain in the least invasive way I knew how. It does hurt a little bit to see everyone jump and scramble when he has pain for a few hours, but when I’m in constant daily pain it’s no big deal. Acute pain is different, and I know that. When you don’t know whats going on it’s scary… oh wait I know a thing or two about that. I start to forget that this isn’t normal.

I don’t need nor do I want a ton of sympathy or people swooning over me. Would a little more recognition of my pain be nice? Yes of course, but I have a very supportive family and I know their tired of all of this too. They didn’t sign up for doctors appointments, hospital stays, or procedures anymore than I did. I try my best not to complain or talk about it all the time, but it’s consumed my life. Since I’ve left school my whole life revolves around being sick, which isn’t very healthy and I’m trying my best to make some changes, but their aren’t a lot of great alternatives.

When pain meds don’t work, I can’t sleep well, and I don’t leave you house much because of the pain and fatigue, complaining can be the only outlet I have… and I hate that about myself. I was never a complainer before chronic illness and for the past five years of this I really haven’t been at all. These past five months or so however have been really hard emotionally and that definitely plays a role in it. Complainers are annoying, not fun to be around, and I don’t want to be one. Luckily or unluckily for her I guess, I only really complain to my mom so at least not everyone in my life thinks I’m a huge complainer. She probably doesn’t either, but she’s nice to listen to all of it. I hope this is one of those situations where I think I’m complaining a lot but in all actuality I really don’t ; I’m not so sure that’s true though.

We all have things we need to work on I guess.

Lots of Love,

Alyssa

EP Study Update

I’ve began this post a few times but only ended up with jumbled words and a lot of tears.

It’s been a few days since I was discharged and the black cloud that was hanging over my head is slowly but surely starting to pass. I didn’t want to publish the posts I wrote in one of my darker hours because I didn’t feel they were helpful, encouraging, or good pieces of writing. I release now though that chronic illness isn’t always gonna be helpful or encouraging, sometimes it’s dark and sad and depressing.

I’m going to make this as short as possible so that I don’t bore you and I don’t have to think about it too much. So after that long introduction here’s what happened.

I arrived at the hospital at 9:45 and waited till around 11:30 to go back into pre-op. They had told us to be there at ten, but never told my mom when the actual procedure was scheduled. When we got back four different people over two hours tried to draw my blood and it was very stressful. I couldn’t have the EP done without the labs but none of the nurses or phlebotomists were good at drawing blood.  When we  complained that we had called ahead numerous times to warn them and asked for someone who was good at drawing blood to be on-hand my pre-op nurse said, “well it looks like we might just have to cancel the procedure if we can’t get any labs.”

She was an awful woman who was incredibly rude and made the whole situation a lot worse. When the fourth lady came in to draw my blood I started to get upset. I hadn’t eaten or drank anything in 18+ hours, I had less than five hours of sleep the night before, and I was having a hot flash which was making me irritated. On top of all that this lady tells me after waiting for hours they might cancel the procedure. I started crying, which is something I rarely do, and the fourth nurse who is looking for a vein notices. She responds with  kindness and sympathy, and then evil nurse #1 says. “oh, she’s just scared of the needle.”

This was when I just about lost it. I’m not afraid of needles and I had already been stuck three other times by incompetent people with no sympathy, yet not a single tear. The fact that she had the audacity after being so rude to act like I was being a baby and was “just scared of needles” made me wanted to scream. Luckily nurse four got the blood they needed and an IV, so things could started moving along.

Expect they didn’t. That’s when nurse #1 told us that my doctors current EP study isn’t going well and the patient coded. Not something you want to hear when the exact same procedure is about to happen to you. She said it should be two more hours and at this point it was 1:15pm. That was also the last time we saw her. She went home for the day and left us alone in pre-op with… no one. When someone came as overflow from post-op two hours later we asked them to call about my procedure and someone from the EP lab had to come get me since transport had gone home for the day.

I said my goodbyes to my parents and was brought into the EP lab which felt like some sort of futuristic room where they do experiments on people. It was also freezing and I was basically naked expect for the thin hospital gown so I started shaking, maybe that had something to with the fact it was now 4 o’clock and hadn’t eaten since 7 the night before but hey it was go time. A team of people started sticking things all over me and didn’t say much. One nurse was really kind and tried to tell me that everything was going to be okay, but deep down I knew she was wrong. I felt a weird combination of sad and numb as my body got my moved around and things stuck to it. I sat in silence as tears streamed down my face and in that moment I knew I had made the wrong decision.

I woke up from the study to hear nurse from the lab tell my post-op nurse that I had an electrophysiology study without an ablation. Those words rang in my ears and I began to cry yet no tears would fall. They found nothing. All day I had an overwhelming negative feeling and so I wasn’t surprised, just hurt and disappointed.

The recovery process wasn’t anything like I was told it would be. The scheduler told us that I would have to lie still for a few hours, but they weren’t very strict about it and if I had to go to the bathroom I could get up. This was a complete lie. I had to lie there for four hours without moving and wasn’t allowed to get up at all. It was much for painful than I thought it would be and I felt completely unprepared for everything that happened.

The next part was very scary. I started to feel off and bad. Those are two very vague terms, but I didn’t have a better way to describe it. My right hand started to tremor and at first I didn’t think much of it. My mom noticed it and was worried she called for the nurse and it got worse. Both my arms and legs began to tremor rather violently and I wasn’t sure what was going on. I was scared and everyone around me seemed nervous. They called a rapid response team and  within seconds my room filled with at least a dozen people. They started putting more electrodes all over me for the defibrillator and wheeled the machine in. Nurses started asking me questions like, “do you know where you are?” I was completely conscious, just really scared. They gave me a beta blocker and the tremors started to slow down.

The doctor with the RRT wasn’t very concerned with the tremor and once they slowed the tiniest bit, he considered me fine and they all started to leave. The tremors stopped completely about fifteen minutes after they left. They drew some labs, but ultimately didn’t really care why I was shaking. I was very disappointed in their response. When I saw the doctor who did my EP study the following morning he said I should ask my neurologist about it and he doesn’t think it’s a cardiac issue. That’s bullshit. My heart rate and blood pressure shot up while I was shaking, he just doesn’t care enough to try and figure it out. He also added, ” in the EP lab you were shaking, so it was probably just anxiety.” To which I responded, “it was freezing in there,” and he just shrugged me off with, “yeah it’s cold.” I love having my very real and very scary physical medical issues passed off as psychological issue that I don’t have.

Overall the experience was awful and I regret it 100%. I don’t think it was necessary and I wasn’t informed enough to have made the decision. Nothing I read up on could have prepared me for all of this, and I’m extremely disappointed in the level of care I received. I’m not sure how I’m going to move forward from here, I don’t have many options. This was one of the worst medical experiences I’ve had and I’ve spared some details for both my sake and yours. I guess what I would take away from this is trust your gut. You know what’s right. Listen to your body, and don’t feel pressured into doing something you’re not comfortable with because regret is a terrible feeling.

Lots of Love,

Alyssa

 

I Don’t Know

“I don’t know” can be devastating words to hear or they can be refreshing when you have chronic illnesses.

When you don’t have a diagnosis or a good treatment plan, hearing “I don’t know” over and over again is exhausting and disheartening. If specialist after specialist doesn’t know, then who does? You start to wonder if you’ll ever find answers, or if your health problems will forever stay a mystery.

On the flip side, being lead on my cocky doctors who tell you they can fix you, but actually don’t know whats going on can be just as exhausting. In my own journey, time after time empty promises kept being made, but I wasn’t getting better; in fact I often got worse from side effects of the medications. I do think some of the doctors I’ve seen truly believed they could help me, they just didn’t know what they were getting themselves into.

I’ve only had one doctor honestly tell me they didn’t know. He was a gastroenterologist who is incredibly intelligent and had diagnosed me with abdominal migraines 2 years prior to this visit (this visit was last fall, September maybe?). He was very honest and said he was going to have to research and read a lot because he didn’t know what to do and he didn’t think it was abdominal migraines. He specializes in abdominal migraines, so he knows what he’s talking about as far as that goes. Although it’s hard to hear that someone as smart as him was stumped by my situation, I appreciated his honesty and found it refreshing. I have so much respect for him, and even more now that he was able to admit that he wasn’t sure what is going on with me.

I still don’t have a diagnosis and March marks officially five years of searching for one. It’s frustrating, but we haven’t given up quite yet. I have my electrophysiology study scheduled for the 2nd, and I’m supposed to be starting botox this month. I’m also starting conseling this week (after a mess of appointment cancelations on their part, but thats a whole other post.) We’re looking into seeing another endocrinologist, so hopefully all of this will lead us somewhere positive.

What do you do when doctors and specialists don’t know what to do? I don’t have any great answers for that to be honest; since this is all about honesty. The one thing I do know is, don’t give up. Go to more doctors, try more medications, look into more diseases/syndromes that you could possibly have. Test and re-test for things. Ask questions and demand answers. Self-advocay is a must when you’re chronically ill and it isn’t always going to be an easy thing. You’re probably going to disagree with a doctor at some point, and that’s okay. Choose what’s best for you and your body.

I personally would rather hear “I don’t know,”and try to look for more options than have someone lead me along when they really can’t help me. What are your thoughts? Would you rather be told the truth or have them try treating you when they aren’t sure what they’re doing?

Lots of Love,

Alyssa

The Flip Side

Long before I became chronically ill my older brother struggled with chronic illness. He constantly had strep throat as a kid, which resulted in the removal of his tonsils and adenoids, and he got pneumonia twice in one month. Any time a stomach bug or the flu went around he always got it and was out of commission for much longer than the rest of us.

When he was ten some more alarming changes began to take place. He would drink copious amounts of fluids, which caused him to start wetting the bed, something he had never done before. He also lots of ton of weight and looked super pale and frail all the time. If you’re familiar with type one diabetes, then you know these are obvious symptoms.

He was diagnosed in August of 2007, when he was ten and I was seven on the first day of school. My paternal grandfather had type one and died of diabetic related complications. He didn’t take care of himself, went blind, and had to have one of his legs amputated. While he died back in the 70’s, and medicine has changed a lot since then, it was still a scary diagnosis to get.

I remember my dad picking me up from my friends house and waiting the whole drive home to tell me the news until we walked through the door of our house. I didn’t know what diabetes was since I was seven, but from the look of sorrow on my fathers face I knew it was bad. We visited my brother in the hospital and I’ll never forget his thin pale face siting in the hospital bed. I let him prick my finger (even though way back then I was terrified of needles) and it made him excited.

I can’t speak to how diabetes changed his life (besides the obvious), and he isn’t one to share his emotions, but it definitely changed mine. I have a much greater knowledge of both type one and type two diabetes. My families eating habits changed a lot to cut carbs, especially in unnecessary places like liquids. Neither I nor my sister complained about these new things, because we could see how hard it was for our brother and parents.

The sound of my brother crying and begging my parents not to give him his Lantis shot will forever haunt me. He was only ten years old, and his life was flipped completely upside down. At that time I didn’t see it like that, because I couldn’t possible comprehend the complexities of getting an initial diagnosis of a chronic illness. Now when I is see “jokes” like “this hamburger is gonna give me diabetes” or “that looks like diabetes on a plate” they infuriate me. The lack of knowledge and false information out there astounds me. Especially surrounding type two. Not everyone who has type two is fat, eats terribly, and lives a sedentary lifestyle. There are so many factors that can play into someone have diabetes. There are even a ton of medical professionals who are so uneducated about diabetes and believe the myths surrounding them.

Being on the flip side of chronic illness now, I try to take what I learned as a sibling and observer and use it when handling my own relationships, and examining the ways chronic illness affects them. I feel lucky, in some sort of twisted sense, that I’ve gotten to experience both sides, because I believe it’s taught me much more than I could have learned form only experiencing one or the other.

Lots of Love,

Alyssa

Cardiac Electrophysiologist Update

Yesterday was my Electrophysiologist visit and it went quite well.

We waited for a bit, but once we got into a room the doctor was really quick. He had already reviewed the stress test, EKG, and echo from the cardiologist and had an action plan, which was refreshing. His plan was not one I expected though.

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The doctor said he could do another Hilter monitor but this time for 3-4 weeks, but didn’t think the information would be anymore helpful than the previous 24 hour one was. Instead he suggested an electrophysiology test. This is a procedure where they go through a vein in your inner-hip/groin area and go into your heart with a catheter. If there are any extra chambers, which is what they’re looking for, then they would a cardiac ablation.They also stimulate the heart to see how it responds. He isn’t expecting to see extra chambers, and thinks the final diagnosis is going to be Inappropriate Sinus Tachycardia. The doctor said “Inappropriate sinus tachycardia is frustrating, because it happens for no reason and you have to rule out other things to properly diagnose it.” Great, another annoying medical condition that doesn’t seem to really have a reason, I might as well collect them now.

Whatever it is, it’s going to be nice to get a definitive diagnosis about something. He said the scheduler should call before Monday afternoon, and the procedure will probably be done in the next 3-4 weeks. That’s really fast, and I’m surprised he thinks he’s going to be able to do it so soon. You normally have to wait 3-4 weeks at least to get a specialist appointment, let alone schedule a procedure.

Oddly I’m not nervous at all, which kinda weirds me out. Lately I’ve felt like everything that’s been happening isn’t actually happening to me. Like I’m watching a movie and someone else is going through all of this; it’s been weird. Even when I look in the mirror I don’t see myself, and I don’t mean that metaphorically. I’m almost surprised at my reflection every time, and I don’t think it’s just the sudden weight gain. When I look at pictures from a year ago when I was really thin, and had my long golden hair, (before I cut it all off and dyed it), I also don’t see me. I’m not really sure what I look like, and for someone who doesn’t have vision problems, I feel like thats an odd thing to say. Maybe I’ll get nervous when it’s planned or a few days before the procedure, but for now I feel kinda numb about it.

I’m happy we’re doing something about the tachycardia, because I honestly waited way too long to go see a cardiologist. The chronic pain had always been the most important thing in my eyes, so I put this on the back-burner. I’ve brought it up to plenty of doctors, but they’ve all shrugged it off and just said “that’s weird.”

So, here’s my update since for once there’s actually something to report instead of just medication changes. I hope you’re all doing well, and are feeling okay. I’d love to hear about what’s going on in your life!

Lots of Love,

Alyssa

Update: The EPT is scheduled for 3/2/17. Longer than he said, but not too bad!

Hypochondriac or Just Desperate

Sometimes I find myself going, “oh my gosh, I have that!” just like the little boy in The Switch.

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But I know I’m not actually a hypochondriac, I’m just desperate.

When you don’t have a good diagnosis and you’re chronically ill, you will grasp at straws to find an answer to your issues. Anytime I hear of a medical condition that I’m to familiar with I immediately google it. This could be it, it think, but most of the time it’s far fetched. Wendy from Picnic with Ants, told me I’m in “Dignosis Hell” and I have to agree. I had never used that term before, but I’m definitely going to now.

The list of things I’ve thought I might have in the past is long. From dysautonomia, to Mast Cell Activation Syndrome, to chronic Lyme disease, and the list goes on. The problem is these things do often match up with many of the symptoms I have, hundreds of diseases do, but when I’m tested for them, they always come back negative.

I just went to do more blood work, and it took two labs, and eight sticks to finally get what they needed. If I have to have chronic illness why couldn’t I have at least been blessed with good veins? At this point it’s quite comical, and I normally attract a whole group of phlebotomist when they’re searching for a vein. I can usually tell within .2 sec of meeting them if they’re gonna get it or not. It’s a gift; maybe I’m a psychic 😉

When I find myself going down a deep hole of research, I try to remind myself not to get my hopes up. Being optimistic is good, but you have to protect yourself and lower expectations. I no longer see a syndrome that has the symptoms I match up with, and think “I must have it; I have to have it.” Now I keep a mental note, or write it down (thanks brain fog), and try to remember to ask my doctors.

Do you ever see something and immediately think you have it? Or go down a rabbit hole of research when something matches up with your symptoms? Tell me your diagnosis story, if you have one!

Lots of Love,

Alyssa