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?

 

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

Traveling while Chronically Ill

This weekend I’m going out of town to visit my sister at her University, so I thought this topic would be fitting. While I’m only going to be gone for a day this time, I use these tips on both short and long trips.

  1. Bring all of your meds!

Duh, right? My general rule is if I’m going to be more than 45 minutes from my house I bring “rescue meds.” For me that includes pain meds (usually tramadol or torodol) and anti-nausea medicine ( always promethazine). I also like to check and re-check to make sure I’m bringing all of the correct medications since missing a dose can  mess things up or just get you out of the habit of taking your meds.

2. Give yourself Time to Rest

When I’m out of town it’s usually to visit family or I’m on vacation. It’s easy to push yourself and keep up with other people, but in many cases this will end with you crashing and burning. Knowing your limits and sticking to them can help you save the energy you need to complete all the things you had planned for the trip.

3. Look up Restaurants before you go

This one doesn’t really apply to me, but I have been on a few different restrictive diets over the years and they make eating out difficult. Spontaneity is fun, but going to a restaurant where you can’t eat anything or at least nothing you like is frustrating. It’s can also be difficult to decided on a restaurant in the moment when traveling with other people so planning ahead is a good idea.

4. Inform those you’re traveling with

The few times I’ve traveled without my family I always found it helpful to tell at least one person about my health issues. In case of emergency someone needs to know what meds you’re on and what chronic illnesses you have. If one of your medications has a side effect that may be a problem while you travel then they need to know that as well. For example last Summer I went to the beach with a church group and one of my meds had a “beware of excessive exposure to sunlight” warning. Since we were going to be in the sun a lot I needed to let someone know I was at a high risk for heat-stoke. Even though I don’t like sharing  details about my health with able-bodied people that aren’t my family ( expect through the internet apparently, isn’t that ironic?) it’s better safe than sorry.

5. Have a plan in case of emergency

This tip goes with the last one. Make sure you have your doctor’s phone number on hand and travel with someone who can help you get emergency assistance if needed. If you’re traveling alone let a friend or family member know your plans and check-in with them.

 

I’m sure there’s a million more things to do / be weary of when traveling while chronically ill, but this is just a few. What are some things you do to make traveling easier? Do you have any “spoonie travel hacks?”

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

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