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?

 

Dead: Chronically Misunderstood

I can remember this moment as if it were yesterday.

I walked into fifth period with a haze over me from the pain meds I had taken that morning. I felt horrible but I had missed this class everyday for weeks and knew I needed to go in order to attempt to catch up. There were three people I recognized in that English class and the rest were complete strangers.

When I walked in there was a boy siting in my seat, naturally I though they had changed seats so I asked a girl who sat by my presumably “old seat” if the teacher had changed the seating chart. “Ugh no,”  she scoffed at me, “we’ve been in the same seats from the beginning of the year.” I didn’t have the energy nor the will to scoff back or come up with a witty comment. “I used to sit there, where’s your old seat? I’ll move,” I ask the boy.

Before he can respond the girl juts in, “Oh your that girl” she says as she rolls her eyes. The boy got up and I sat down exhausted and slightly annoyed at her unnecessary attitude. As I unpacked my things the other students began to talk about me as if I wasn’t there. “I thought she moved” one kid said, “I didn’t think she was ever coming back another chimed in. Then as if the whole world went into slow motion the same rude girl spits out, “well I thought she died.”

I thought she died.

The conversation continues with the other students saying “Oh no I didn’t think she died, but I’m surprised she’s back.” I sat in disbelief. These people who don’t even know my name are having a whole conversation about me while I sit right in front of them. I’m just “that girl” to them.

Looking back I wish I was coherent enough to have snapped back, “thanks for coming to my funeral. You seem really upset by my death.” Honestly the lack of social awareness is what makes this semi-funny. I have to admit a part of me is still a little annoyed that they behaved that way and couldn’t care less about the status of my life. Teenagers can be so insensitive. Of course they didn’t know this but at the time I wasn’t sure if I was going to die or not, soon I mean; we’re all going to die. I had no diagnosis (but that hasn’t changed) and I was in such severe pain everyday that something was obviously really wrong.

Now it’s almost comical, but in the moment it was just one more thing to deal with. Moral of the story think before you speak, oh and also just don’t be a jerk.

Lots of Love,

If a dead girl can even love 🙂

Alyssa

It Could Be Worse

I hate this saying.

I see it a lot from abled-bodied people in response to those who are disabled/ chronically ill. It’s also something I struggle with internally. I tell myself that I shouldn’t complain or voice my experience because there are people who are more sick than I am or have a harder situation in life. Being undiagnosed I tell myself ” at least it isn’t _, I have it a lot better than them and should be more grateful!”

Yes it could be worse, it could always be worse. No one has had the end all be all of terrible situations; even when life sucks, it could suck even more. This statement only invalidates others struggles. How is telling someone that their situation could be worse going to help them?

fccae923fceb6a3c22899ff712fd3b78

While I do have periods of time where I find it hard to bear and I begin to wallow in my own struggles, they are few and far between. Some level of depression or just general unhappiness comes with the territory of chronic illness. For some it’s all the time and for others it’s episodic, but even the most positive people have times where it all feels like too much.  In the times where it feels like life couldn’t be worse hearing that it could be isn’t going to help. Life isn’t a competition especially when it comes to hardships. Who wants to win for losing?

I can see why some people might think this is supposed to be uplifting and positive. While staying positive is a good thing when going through something difficult, telling someone “it could be worse so get over it” only silences them. Disabled and chronically ill people are already a people group who get silenced all the time or just left out of the conversation all together. There are so many things you could say to be helpful instead. For example….

  1. Is there anything I can do to help?
  2. I will pray for you (only if the person is religious/ is okay with you offering prayer) or sends positive thoughts
  3. That must be really hard, if you need someone to talk to, I’m always here.

Most of the time when people are going through something challenging they need someone to talk to or someone to sympathize with them. Very rarely is a reality check going to be a good option; chances are they understand the reality of their situation a lot better than you do. Also going through something tough and having someone else tell you all the ways it could be worse  only leads to the you thinking about how other things could go wrong.

Even if you don’t understand someones situation try to be sympathetic. There are a lot of things in life I will never be able to understand due to my privilege:  being white, middle class, living in America, but that doesn’t mean I can’t sympathize will people who are struggling with something different than I am. No two situations will ever be same, so let’s build each other up and be there for one another instead of invalidating others experiences.

Lots of Love,

Alyssa

 

Why are you here?: Chronically Misunderstood

This one is going to be a bit of a back story, but I’ll make it quick. At the time I in high school and it was my freshman year. The school I went to really didn’t like that I was absent a lot and made me jump through a lot of hoops in order to “make up my time.” This had happened for the past two years I was in middle school as well, but their obsession with me being in school makes this story funny to me. Also at this time doctors thought I had abdominal migraines also known as cyclical vomiting syndrome.

I walked into school late and went to check in  before heading to class. Normally I would go to my house office, but the secretary at the front desk stopped me and asked me my name. When I told her who I was she looked me up in the computer system which I thought was odd. I had come into school late a lot and no one ever questioned me. Normally I just went to the office, got a note, and was on my way.

The lady started to look really confused and said, “you aren’t supposed to be here.” I didn’t know what to say to that. Here I am at school, specifically at a school that get’s very angry when I’m absent yet this lady is telling me I’m not supposed to be here? “You’ve been counted absent for the whole day,” she told me. I responded with, “I don’t know why, I didn’t tell anyone I was going to be gone all day.”

She furiously tapped away on the computer and I just stood there throughly confused. She walked away into the main office and came back looking relieved. She exclaims, rather loudly I might add, ” OH YOU’RE STOMACH MIGRAINE GIRL!” I guess I had developed a reputation. “Yeah…” I replied trying not to laugh. For some reason being stomach migraine girl made everything okay and she let me go on my way. I’m still honestly not sure what that situation was all about, but it was funny nonetheless.

Tell me a funny or weird story about your high school experience!

Lots of Love,

Alyssa

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

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

Poop Shoot: Chronically Misunderstood

Way back in the very  beginning of my medical journey I had my first ever CT scan. The pediatrician I saw thought I was having an appendicitis so I had a scan scheduled for that afternoon at the hospital in my town. Up until this point the only person in my family who had been there was my brother for a collar bone fracture, and the care wasn’t very good, so our hopes weren’t high, but we didn’t have any other choices that we knew of.

When I arrived for my appointment they have me two one-liter bottles of contrast to drink. It was thick like a smoothie while also being chalky. One was berry which I was fine with and the other was banana. I absolutely hate banana. It isn’t just a food I don’t care for, it’s my least favorite food and the smell alone makes me want to vomit. They didn’t have any more berry though, so I was going to have to suck it up. I had two hours to drink it all and I already wasn’t feeling well.

Needless to say the next two hours were awful.  I couldn’t finish the last half of the second bottle and when we went back so they could perform the CT and told the tech I couldn’t finish she said, “Oh that’s fine, one was probably enough.” Are you kidding? I dry heaved the whole time while forcing myself to drink this nasty paste and I didn’t even have to drink the second one? Ugh

Then comes the IV. This was the first time I had ever gotten one and I was terrified. They made my mom stay in the waiting room which didn’t make much sense because they hadn’t started using radiation yet. The same annoying tech stuck me three times and surprise, surprise didn’t get it.  She called in an ER nurse who got it… three times later. The whole time they searched for a vein she kept saying to me “all we’re gonna do is a take some pictures to look at your poop shoot.” I swear she said “poop shoot” like twelve times. Maybe she thought I was constipated, but there’s no way she could have known that from looking at me.  I may have been 12, but I was more than old enough to know and understand anatomical names for body parts.

Both during and after the scan she also mentioned my “poop shoot” again. Something about that phrase just weirds me out. People say some odd things to kids into to try to relate to them. If your curious I wasn’t constipated, at the time I had Mesenteric Adenitis which was super confusing and I’m still not sure how it all fits into this puzzle. I can’t help but laugh every time I think about a grown woman squawking “poop shoot” over an dover again. Who thinks of these things? 🙂

Lots of Love,

Alyssa