You’re So Brave

Everyone goes through crappy situations that they can’t control. Some people have had to deal with abuse, others parents getting divorced, and if you’re like me you’ve spent a decent portion of your life being chronically ill. People often tell me, “wow I could never do that”  in reference to my health problems. Honestly, six years ago I would have said the same thing.

I am not brave, nor a “warrior” because I am chronically ill. It’s a bad situation that cannot be fixed. How do I deal with it? I just do. There is no alternative, my only option is to deal with it. I do not feel like I need praise for simply living the life I was given. Humans can handle much more than we think we can. There are a lot of situations that I feel as if I could not handle, yet I know logically, if I was put into them I could make it through. (I also want to mention that some people cannot handle being chronically ill, and it truly is an issue in our community but I’m going to talk about that in another post)

Life isn’t easy a lot of the time, and chronic illness forces you to do a lot of persevering. Living my life as a disabled person does not make me brave, in and of itself. When people say this to me, I hear the under tone of, “You’re life seems so hard, I wouldn’t want to do it.” Sure, some aspects of my life are difficult and sad and sometimes even heartbreaking, but there are so many joyous and positive experiences to be had. Being able to live as a disabled person is a blessing in many ways, and has taught me so much about life and the human experience. I am not brave simply because I am disabled, I am brave because I dare to live a fulfilling life as a disabled person, when society tells me that is impossible.

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It’s Been a Minute: Life Update

It’s been a little while since I talked about what’s going on in my life, so I thought I would catch you all up!

First, I got the results back from my endoscopy and they were inconclusive. I had elevated mast cells in my biopsies, but they weren’t nearly high enough to diagnose mastocytosis. I had a serum tryptase test done to see if I had any elevated levels there, and it came back normal. It looks like I probably don’t have systemic mastocytosis, but my gastroenterologist is referring me to a new allergist/immunologist, who I have an appointment with on the 16th. Having negative results for tests is a good thing, because you don’t want anything to be wrong with your body, but it is also incredibly discouraging when it was the only new idea a doctor had in a long time. Since, I looks like I don’t have any mast cell issues, the gastroenterologist diagnosed me with post-infectious IBS.

I continued to have trouble with exhaustion due to my IST, so the electrophysiologist upped by digoxin dose. It had been working really well, but the past couple of days I’ve been exhausted and have felt my heart racing. It’s hard to know if the medication is no longer working or if I’m just having a rough few days.  I have an appointment on the 22nd with him, so we’ll see what he says. The gastroenterologist put me on Linzess for my IBS, and it hasn’t worked. It’s supposed to help with chronic constipation, but instead it’s making me have no bowel movement for two to three days, and then diarrhea. I stopped taking it, and became incredibly constipated immediately. Luckily, I see him on the 8th so hopefully he has some ideas on how we can get my digestion under control.

With school starting back on the 16th, and three doctors appointments in January, this is going to be a pretty busy month for me. I’m also starting to volunteer at a nursing home this Friday, which I am excited about. I feel ready to go back to school, mainly because I’ve been bored. I really hate feeling unproductive, but having the time to relax is nice, and something I try to take advantage of. I hope you all are doing well, and enjoying the new year so far!

Independence and Chronic Illness

Disability often requires some of our independence to be given up. Personally, my independence has waxed and waned over the years continuously. While it’s nice to have periods of time where I’m capable of being very independent, it can be incredibly hard to have to relinquish some of that independence when my condition worsens. I was watching Jessica Kellgren-Fozard’s video about her personal relationship with independence and being chronically ill, and it made me think about my relationship with independence. I highly suggest watching the video, and subscribing to her. She is a disabled lesbian, from England where she resides with her wife and adorable dog.

At times, independence for me can mean being able to do my laundry or cook a meal. It may sound so simple, but these are the things so many people take for granted. Currently, independence for me means driving myself to school, and going to my classes. I still live with my parents, so some of my independence is relinquished to them; They cook most of the time, and they pay the bills (thank god). There’s meaningful independence is everyday activities, like doing the dishes or folding the laundry, that many able-bodied people fail to recognize.

My independence can fluctuate day to day, and even hour to hour. One day I can drive myself everywhere I need to go, and the next day I can barely take out the trash. This concept of ability changing on an hourly basis is something able-bodied people tend to struggle with. In their world, you’re either completely incapacitated or completely fine. I live the vast majority of my life in the in-between stages, which can make things complicated. It can also be difficult for my parents. They believe they know how I’m feeling by looking at me, but they’re often wrong. I get a certain look in my face when I feel like I’m going to pass out or vomit, but I can feel awful without the specific look. Sometimes I’ll say I’m feeling terrible, but because I “look fine” they ask me to do something immediately like feed the dogs or unload the dishwasher. It becomes frustrating when you want to help, but also just explicitly stated you aren’t doing well in the moment. Being the obedient child I am, I force myself to do what is asked of me even when it makes me feel worse.

I want to be able to help my parents whenever they ask, but it just isn’t a realistic “want”  sometimes. Learning to relinquish some of your independence to other people can be difficult. I’m someone who likes to be in control, and likes to be as independent as possible. Being chronically ill has taught me, that there’s strength in vulnerability. Knowing when to ask for assistance is a necessary part of being disabled, but it can feel demoralizing. It is however, a choice to relinquish that independence, which makes asking for help less patronizing to me. There’s so much strength in admitting you need assistance.

We live in a society that worships independence to an unhealthy level. No person, disabled or not, can do everything by themselves 100% of the time. You’re life’s worth shouldn’t rely on whether or not you can drive a car, or wash your own hair. All levels of independence are beautiful and should be celebrated. Relinquishing some of your independence does not make you weak, but instead shows an incredible strength.

Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Adapting with Chronic Illness

Sometimes friends and family members will see me and say, “wow you must be feeling better!” What they don’t realize is that some days I’m not doing any better than I was six years ago, I’ve just adapted. In the beginning it was so incredibly tough to even get out of bed. I was a child, and had never truly had to persevere before. At the time, I was trying my absolute hardest to function, but it was all new to me. Now I’ve adapted. I go to school and church with extreme pain and fatigue. I do homework as I run back and forth to the bathroom or grimace in pain. When I’m in a state that I’m able to force myself to function, I seem very “normal.”

This semester I’ve made it to class more than I ever have in the past six years. As of now, I’ve only missed four class periods total, and three of those periods were for doctor’s appointments. Part of this is because I felt decent at the beginning of the year, and so it was fairly easy to make it to class. Now I’m struggling more, but I’m still forcing myself to go to school. Just because I’m able to function, doesn’t mean it isn’t hard. Yes, some days it is easy, and I feel incredibly lucky to have easy days since so many people do not get them. I used to not get easy days, and it was so incredibly hard. However, some days I’m trying not to pass out in the middle of math class, or holding down vomit in history lecture. My body is still very broken.

I’ve also taught myself how to “pass as abled.” I can put on the makeup and clothes, do my hair, and paint a pleasant expression on my face. Most people aren’t very observant and buy it. By now I should have an Oscar for my performance! However, if you look really close you can see the exhaustion in my eyes and hear the slight pain in my voice slipping through. One thing chronic illness has taught me is to be observant. Things are often not as they seem, and if you really pay attention to people, you can pick up on so much. I’ve learned how to appear fine, but other people have not learned how to see through it.

In many ways, I’m so glad I’ve adapted! I’m able to handle everything chronic illness has thrown at me, and I have strength to continue to fight it. I’ve learned how to be more functional, and now I’m able to continue my education. Sure, I don’t do anything else but go to school, do homework, and recover from it all, but I enjoy succeeding in something. It does make me sad sometimes that this has become my normal. Pretending to be fine, when your body doesn’t work right is exhausting, and can be incredibly lonely. At times, I’ve felt angry that I even had to adapt, that I had to accept this life as “okay.” Chronic Illness is a constant cycle of grief and acceptance, and adaptation is a huge part of that.

 

But it looks cute! : Chronically Misunderstood

It’s been a while since I’ve done a “chronically misunderstood” post, but don’t fret strangers are rising up to the occasion and helping me continue this series!

The majority of the posts in this series are about events that happened a while back. This one however took place just a few weeks ago. If you saw my post about trying Corlanor, then you know this medication gave me fairly severe side effects. On the Monday after I started Corlanor I was a hot mess. I dragged my body to school since I had tests that week and needed to make it to class, but I looked awful. I had no make-up on, I was wearing an over sized jacket, and my hair was in a ponytail. Most days I slap on some make-up, straighten my hair, and trick everyone into thinking I’m fine, but I just couldn’t do it that day.

I got to my second class of the day, which is Algebra, and I needed to turn in my lab since I had missed Friday’s class to go to the Electrophysiologist. I walked up to my teacher’s desk and instantly everything went black and my whole body felt like jello. I grabbed onto her desk rather abruptly and slurred out enough words to explain what I was giving her. She looked at me like I was crazy, and I’m pretty sure she thinks I’m weird, but oh well. I made it back to my desk, and sat down, when the person who sits next to me asked an all too familiar question. “Is your face always this red?” I’ve gotten this question a lot over the years. Most people think I’m sunburnt or embarrassed, but it’s just my face and screwy autonomic nervous system. My face looked red because

1. I had no makeup on

2. I don’t regulate my own body temperature well and my face was super hot

3. I was trying not to pass out

I told him that no, I don’t always look like this, and I wasn’t wearing make-up or feeling well. I guess the look of exhaustion on my face made him think I was upset, so he started back-tracking and apologizing profusely. Honestly, I’m not offended by anyone asking, but I do think it’s rude. In the moment, I just really didn’t feel well and was too disoriented to have a whole conversation on why my face looked uglier than usual. The girl who sits next to him then said, “but it looks so cute! I wish my face looked like that!” Okay, cut the bullshit. I’m way more offended by you trying to act like I look “cute” than by some dumb guy essentially asking me why I look ugly today. It doesn’t look cute, it looks bad. There’s no need to act like it doesn’t. I’m not upset by it, it’s simply just something that happens and is a part of my chronic illnesses.

The girl then continued to tell me a story about when she had a reaction to a face wash in middle school. She ended with, “and yeah my face looked like yours.” There isn’t an eye roll big enough. During all of this I was still super disoriented and couldn’t form together enough words to respond. Oh the joys of chronic illness! I find it hilarious when people try to “relate” to my situation by telling me obscure things that have happened to them.

At least I look cute though, right?