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?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Why Do Doctor’s Offices Suck So Much?

This is purely a rant on why I hate the receptionists in doctors offices.

 

Today I had an appointment with a sleep neurologist. My PCP referred me to him, and since I’ve had so much trouble with sleep and fatigue, I thought seeing him would be worth my time. His office is in the city so it’s a 30-45 minute drive depending on the traffic, and we had an 8:30 appointment, so I had to be up way earlier than I normally am.

Fora normal person this wouldn’t be that big of a deal. My body however, hates being up early. Whenever I get up before my body is ready I feel nauseous and get a headache. It’s also inevitable that in the afternoon I’ll crash, hard. Since this appointment was important though, I was willing to risk it.

After driving 45 minutes down there, we arrive to find out they cancelled our appointment. Apparently they had been calling the wrong phone number to confirm the appointment. Everyone makes mistakes, so this wouldn’t be a huge deal, but they had already called my mom multiple times on the correct number, so they did at one point have the right number. We also confirmed the appointment on their online patient portal.

The receptionist also tells us that we’re out of network and they don’t take our insurance. They should have never agreed to see me if they’re out of network. She tells us we could see him, if we paid $250 out of pocket. No ones time, in my opinion, is worth that much for one doctors visit. Since they had taken it upon themselves to cancel the appointment though, we wouldn’t even get to see him today.

Now that’s all bad, but they apologized right? Wrong. Both receptionists said it wasn’t there fault and it must have been someone else. We left because there is no use in arguing with incompetent people. An apology would have made this situation much better, but even when my mom called to try and talk to someone else, they didn’t apologize nor did they care. They even said that they had never heard of online conformation. To which my mom replied, “well then it sounds like you have another problem don’t you?” which made me crack up. They also repeated back her phone number wrong to her three times, which means after going to the office and talking to the receptionists there, they didn’t even change the number in the computer system.

Unfortunately this isn’t the first time this has happened. It’s at least the third time we’ve gone to a doctors office only to find out they canceled our appointment/didn’t take our insurance/never made the appointment in the first place. I understand that it’s a boring job, and that people make mistakes, but this was a long series of mistakes (probably made my multiple people) and they way the handled it was incredibly unprofessional. “I don’t care we screwed up, sucks for you” was the general attitude.

The office manager did called call my mom, and was apologetic. He’s trying to get us in on Monday and is giving us a discount. More than wasting my time, waking up early, wasting my moms time, and making her take half a day off work to take me, not having answers is the worst part. I’m happy this situation seems like it’s going to have a positive ending, but they don’t all turn out so well in the end.

Ugh. What are your experiences with difficult doctors office?

Have you ever showed up to a doctors office only to find out you don’t have an appointment?

 

Living in the Moment

Living in the moment is something I often have trouble with.

Life these past five years has not gone as I planned by any means. I feel like I’m always looking to the future when “I feel better” or “feel happier” thinking life will better then. Instead of trying to enjoy this chapter in my life, I’m always looking ahead.

I started college this summer at my local community college, and it’s been hard to enjoy it. I can’t help but think about how I “should have” graduated high school and “should have” gone to a four year university right away. Those things just aren’t going to happen for me, and I know I need to get over it. I’m guilty of judging people who’ve gone to community college in the past. Always assuming they screwed around in high school and so they couldn’t go anywhere else. Now looking back I realize how prejudiced and rude that was, but I still push those stereotypes on myself.

I’m grateful that my health is in a place that let’s me be able to start college full time in the fall. I should enjoy this time I have feeling well, since I never know when I’ll flare again. Honestly I’m afraid of my next flare. As the fall school year becomes closer and closer, I’m scared I’ll flare right when classes start. I really want to go to school full time this year, and I want to be successful. Instead of enjoying feeling well, I’m often worried and thinking about all of that what-ifs.

Sometimes I just need to take a deep breath and remind myself of all the wonderful things in my life. Sure, there’s gapping holes that I’ve desperately wanted to fill for years, but I have so many amazing things in my life going on too. Even in these times when I’m feeling better I can’t help but feel the exhaustion of my past. I’m only seventeen, but living seventeen more years sounds horrendous. My life is supposed to be “just beginning,” but it already feels so long.

I want to live in the moment.  I want to enjoy the now.

It’s just a lot harder than I expected it to be.

 

First Day of College

Yesterday was my first day of my first  college class.

Even though I’ve taken all the steps to get here, it doesn’t feel real at all. I’m seventeen and going to college, and it feels weird.

Not a whole lot is going to change. It’s community college, so the work shouldn’t be that difficult, and I’m still living at home. I left high school back in November of 2016, so its been a while since I’ve been to school. The only fear I really have is getting really sick again and having to leave, other than that I’m not too nervous. It’s been five and half years since I’ve been able to go to school full time. That means I was twelve last time I went to school consistently, so it’s been quite a long time.

 

The first day of class went pretty smoothly. I’m taking Art appreciation, since I need an art credit. We aren’t using a textbook and we won’t have a final exam, which was pretty surprising to me. I had to go to Micheal’s after class though and get a bunch of painting supplies because, as a surprise to me, we’re painting. I thought we would be appreciating art, not creating it. I have lots of good artistic ideas (well, good ideas to me at least) but actually executing them well isn’t my thing. I’m sure he won’t grade too hard on how it looks since this is a beginners class though.

Today I have a meeting to finalize setting up disability services with my college. I’m pretty proud of myself for doing everything I needed to do to set this up, and applying for college in general all by myself. The only thing my parents did is fax papers to the college from their  work, since we don’t have a fax machine at home. This will be the first time I’l have to advocate for my health all by myself, which gives me some anxiety. I usually do most of the talking, but my mom’s usually there to fill in the areas I’ve forgotten. Gotta love brain fog!

Things feel like they’re going in a good direction for once. I just hope it stays that way.

What’s new with you? Do you have any Summer plans?

Lots of Love,

Alyssa

What’s Next for my Health?

This is the question always in my mind:

What’s next for my health?

Lately I’ve been doing really well. For the last three months I’ve felt better than I have in at least a year. This is great news, and something to celebrate, but my health has a specific pattern it likes to follow. Summer/early fall I do well, sometimes I’m doing great within this time, other times I’m doing just okay, but I’m able to function much more than when it’s bad. Early/Mid Fall things decline and by the time winter arrives things are really really bad.

I’m scared of the months to come. I’ve signed up for college classes, and I desperately want to do well in them and not be absent all the time. It’s not the pain I’m afraid of anymore, it’s what it takes away. I want to move on with my education and my life in general. I want to make friends and have an active social life. I just want to live a more normal life.

Last week I went to see the rheumatologist I saw back in April. She’s very kind, but she doesn’t think whatever’s going on with me is rheumatological, and doesn’t think there’s much she can do. I’m incredibly tired of having this conversation with doctor after doctor. I don’t seem to fall under anyones specialty, and no one wants to help. The rare few doctors who do want to help, like her and my GP, don’t know what else to do. Part of me doesn’t think anyone is ever going to be able to figure it out.

I’m trying really hard to “live in the moment,” and enjoy the time I have while I’m feeling well. It’s incredibly hard to do that though, when you know what’s to come. Honestly I would much rather feel terrible now and then feel better in the fall when classes start, but that would be too easy. Don’t get me wrong, I’m incredibly grateful to have been feeling well these past three months, I know many people with chronic illnesses don’t get a few good days let alone months.

My rheumatologist and GP spoke and decided I should do some genetic testing. We’re doing it through 23&Me which makes me a little skeptical of its accuracy, but it won’t hurt to see of it gives us any decent information. I sent it off a few days ago, but it takes up to a month to process. Even if we don’t get nay good medical information, it will at least be interesting to see where I came from. Being white, I know it isn’t going to be every exciting, but it will still be interesting.

What’s going on in your life?

Have you/are you doing any new testing or starting a new treatment plan?

 

Lots of Love,

Alyssa

Getting Back into Things

For the past 3 1/2 weeks i’ve been going to the gym.

I gained a ton of weight on Gabapentin, like a lot. It’s hard to gauge exactly how much it is since before the rapid weight gain, I had rapid weight loss. Pre-chronic illness I weighted between 120-125 lbs, then I gained weight from meds and went up to 138 lbs, then I lost weight because of Cymbalta and Topiramate, down to 112 lbs, and finally I gained on the Gabapentin and Amitriptyline weight all the way up to 170 lbs. If you count the weight gain from when I lost a lot of weight then i’ve gained nearly 60 pounds, if you count it from before chronic illness it’s 45-50 lbs. Either way it’s a lot and needs to change.

For reference i’m 4’11 and 3/4 so being 170 pounds makes me over weight. I can deal with the weight gain, because I know I can lose it, but the stretch marks are distressing. I don’t have the silvery-white stretch marks that are barely noticeable. Since mine are “new” they’re bright red and everywhere. They’re the worst on my arms, but they cover my thighs, have crept onto my calves, cover the side of my stomach, and have popped up on the front of my stomach. I feel like a hypocrite because i believe everyone is beautiful and shouldn’t love themselves no matter what, but I honestly hate the way my body looks right now.

Right now I’m on an upswing with my health. I’m out of a flare and feeling pretty well. The biggest thing to celebrate is that I’m actually sleeping, so I don’t feel like a zombie all day. There’s no way I could go to the gym 5-6 days a week if I was still feeling so poorly, so for now I’m getting in all the exercise I can. I’m definitely not someone who loves going to the gym, it’s kinda boring and I don’t like working out around other people. Once you start to go regularly though you start to notice things.

For one, everyone is in their own bubble and doesn’t care what you’re doing. Also you’re probably not going to be the most out of shape person there. Sometimes super thin girls will get on an elliptical next to be and look half dead ten minutes in and by fifteen minutes they’re done. This is just one of a million reasons why weight doesn’t always correspond with health.

So far I’ve lost 4 pounds, which isn’t much but it’s better than nothing. I’ve been out of town for part of the time so I couldn’t go the gym, but for the most part i’ve been sticking to it. To me working out isn’t the hardest part, it’s eating healthy. When you feel terrible you don’t want to make something to eat. It’s easy to grab whatever’s available and takes no preparation. The problem with that is the things that take no prep are often processed foods, with little nutritional value.

Finding a diet that’s sustainable has been difficult. I really don’t want to put a ton of work into this now for it all to come back in a year or two. I’ve watched everyone in my family yo-yo with their weight so I know this isn’t going to be easy. I’m also currently taking another medication that can cause rapid weight gain, so I’m hoping I can go off of it soon since it doesn’t seem to be helping the tachycardia issue.

I’m counting on this getting easier the longer I do it. If you’ve lost weight/ started trying to live a healthier lifestyle, how did you stay motivated?

Lots of Love,

Alyssa