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?

 

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

The Illusion of Health

From commercials to diet magazines and even health class in high school we’re taught that if you eat right and exercise you’ll be healthy.

But what happens when that isn’t true?

The illusion of health is the illusion of control. Living in a world where anything can happen in the blink of an eye is scary and not something most people want to think about. When you’re the one who’s chronically ill though, you don’t get that luxury.

I was twelve when my chronic illnesses started. I spent every evening after school outside and rode my bike all over my neighborhood with my friends everyday. I was active and ate pretty well for a twelve year old. Sick is not synonymous with unhealthy. It’s easy for able-bodied people to point fingers and tell us we’re not doing enough when in reality we’re working harder than them to keep our bodies alive.

I think a lot of ableism stems from fear. Who wants to be reminded that they could one day be the ill one? Instead of seeing us as people we’re seen as some sort of pathetic life lesson or worse inspiration porn. That’s when the “what ifs” come into play. “What if you went gluten-free? What if you tried yoga? Have you seen a specialist? Maybe you should lose/gain weight.” While it’s incredibly insulting, I think all these “suggestions” come from the same fear but with added narcism. People like to believe that if they were the sick one, they could do something about it. They could “heal” themselves because they would try harder. We’re just not trying hard enough, we just don’t want it enough.

A man at my church who was an avid body builder dropped dead a few months ago. He had a heart attack in the gym. “But he was so healthy,” everyone said. Being physically fit does not mean you are exempt from health problems. Tragically he wasn’t “healthy” on the inside and never knew.

Sure diet and exercise can help prevent some health issues that are specifically related to obesity, but at the same time a lot of those issues have a genetic component or are a symptom of a pre-existing condition. Take Type 2 Diabetes for example; The stereotype is that someone with Type 2 Diabetes is over weight and consumes way too many carbs. While this may be true for some people, for others it’s genetic or a symptom of another health issue like PCOS. The same goes for high blood pressure. The stigma around these conditions is so large that we often shame the person for having these conditions instead of helping them.

Giving your body everything it needs in order to be healthy is important, but it doesn’t mean you automatically get a clean bill of health. Diet culture gives us a false sense of control. Humans are not indestructible and doctors don’t have all the answers. It’s not a fun topic but the idea that you have complete control over your body and your health is quite frankly ignorant.

But ignorance is bliss, right?

 

 

Self-Advocating with Chronic Illness

Now I have to admit, this hasn’t always been my strong suit.

I would try to build the courage to speak up and stand firm against doctors when they questioned my symptoms or wanted to start a treatment plan I didn’t agree with but when the time came to self-advocate I found it rather difficult.

I’m definitely more comfortable disagreeing or refuting doctors now than I was at the beginning of my journey, then again I’ve had five years to practice. Doctors are people too, even though society puts them on a pedestal they don’t always get it right. As a patient there are times where it’s your job to say no and put your foot down. It’s so easy to blindly follow a Doctors orders, but that can end poorly quick. Doing your research and getting to know your own body is crucial when chronically ill.

Self-advocating is probably one of the most important things a chronically ill patient has to do. Sometimes you have to push and push to get the adequate medical care you deserve. Other times you’re fighting with the insurance company to try and get them to cover a medication that you desperately need. It’s never ending and exhausting, but so so necessary. Unfortunately with some chronic illnesses many Doctors may not be aware of all the treatment options available or even aware of what the illness entails at all. While it’s always best to see a doctor who’s treated someone with your specific illness before, that isn’t always an option. In those cases you have to be able to self-advocate and teach the health care professionals about what you need.

I have a lot of symptoms that are “weird” or don’t match the other things I deal with. I’ve also dealt with some side effects of medication that are rather uncommon, and instead of listening Doctors and other health care professionals can make excuses or just straight up not believe you. One problem a lot of people with chronic pain run into when visiting the ER is the staff not believing you’re at a certain pain level because you’re not crying or don’t “look like you’re in that much pain.” I personally don’t respond to pain by crying, and unless you know me really well you probably can’t tell by my face how I’m feeling. There is no wrong reaction to pain, but sometimes certain reactions make it more difficult to receive the care you need.

When you’re in the ER or admitted to the hospital it’s always best to have someone there who can help advocate for you. There may be times where you’re too incapacitated to self-advocate and it’s important to have a friend or family member who knows your situation and can help relay information to the doctors and nurses. I know when I’m in extreme pain, brain fog sets in and it makes it a lot harder to explain things and recall everything that’s happened leading up to the ER visit, hospital admission, doctor’s appointment etc. Other times I just don’t have the energy to explain everything or go back and forth with the doctors and nurses.

A big part of self-advocating for your health comes down to confidence. Confidence speaking to strangers and authority figures, confidence talking about your body and uncomfortable things that may come with that, and confidence being honest about how you’re really feeling instead of giving everyone the rose-colored glasses version. For me (and I think most people) confidence will always be a journey. Some days I feel ready to tackle the world and I don’t care what anyone else thinks, and other days I feel insecure. Self-advocating for my health has helped me gain confidence when speaking to authority figures and talking about uncomfortable subjects.

Do you find self-advocating difficult? How do you self-advocate? Let me know!

Lots of Love,

Alyssa

All the Appointments!

Since I last did a health update a lot of things have happened.

First I went to an allergist/immunologist who I really liked and she ran the Tryptase test for MCAD. Unfortunately that came back fine, and so did all the other tests she ran. She started me on Singulair, ranitidine, and Allegra for the all over itching I’m having. They’ve kind of worked, but the days I still have the itching it’s extreme and I feel like I want to peel back a layer of my skin.

I also went back to see my electrophysiologist for a follow-up from my EP study. It wasn’t surprising to me that this visit was kind of a waste, but it was still annoying. He upped my metoprolol dose to now 25mg 2x a day from 12.5mg 2x a day. Due to some unexplained episodes of waking up gasping, my heart skipping a beat, then beating really hard and pain shooting through my body I’m wearing a monitor for a week. I’ve done the 24 hour Holter monitor before but this is the Cardiokey. Hopefully it gives us some answers. He doesn’t think they are anything to worry about, but he also doesn’t do much diagnostic testing and in my opinion generally does not care. Unfortunately I have to see him in May to get the results from the monitor.

My mom works as a case manager in a hospital and one of her friends is a Cardiologist. She explained my whole cardio story to her and she thinks I should get a second opinion and that my electrophysiologist isn’t doing enough. So now we’re looking for one who will take seventeen year olds.

Because I definitely needed more specialists in my life, I saw a rheumatologist for the first time. I’ve been having joint pain and swelling that didn’t go away after I weaned off topiramate, so we went to see what they could do and what suggestions they had. My mom had to call 12 different rheumatologist to find one who would take me. Most of them didn’t see anyone under 18, so she called pediatric places but they wouldn’t see new patients over 16, being 17 I was screwed. Fortunately she explained my situation to one office and the secretary asked the doctor if she would make an exception and see someone under eighteen and she agreed, God bless nice people. This doctor was so kind and understanding.  She ran something like 21 blood tests to make sure I didn’t have any signs of rheumatology related diseases like Lupus or RA. I also got x-rays of my hands and feet, and we should get results from all of this within 1-2 weeks.

She thinks I may have fibromyalgia on top of whatever mystery illness I’m fighting, but doesn’t want to diagnose me with it just yet since it’s something that is way over diagnosed and once you get that diagnosis most doctors won’t look past it. I’m not surprised she thinks I could have fibromyalgia, but I am really happy she wants to do more and look into other things.

In two weeks I have a follow up with the allergist, then in eight weeks I have a follow up with the rheumatologist, and in seven weeks is the follow up with the electrophysiologist. Ahh so many! Some of these would be sooner but our insurance is changing as of May 1st so for the first 15 days while things are switching over it’s best not to have any appointments. I also have a dentist appointment to fix some broken fillings in May. It’s gonna be busy, but I’m glad we’re getting the diagnosis process going again.

If you read this whole thing, thank you but also why? Haha I’m kidding, but seriously thank you for taking the time to read my posts. Let me know how you’re doing!

Lots of Love

and appointments,

Alyssa