The Reasons I Sometimes Don’t Practice What I Preach

Why is it that we can urge people to take control of their health when sometimes we aren’t even taking control of our own?

Do you ever catch yourself doing this?

This is me calling myself out on doing it.

Recently, I have been ignoring new symptoms or pain and procrastinating making new doctor appointments because I’m afraid of hearing a new diagnosis, or having a doctor tell me I that I need to try a new treatment. I have been ignoring things because I am afraid to deal with what comes next.

The last few days, I have been thinking a lot about why I have been doing this – trying to get a better understanding of whatever is subconsciously holding me back from practicing what I preach to so many.

Here’s what I’ve come up with:

New medications make me uneasy

I’ve been seeing all different types of doctors more regularly than your average person since I was about 12 years old. For a while, I was rotating through so many different medications/pills for my headaches & migraines that I honestly don’t remember a lot of the ones that I tried. I’ve experienced little to no side effects and I’ve also experienced some pretty intense negative side effects. Because of my experiences, I get uneasy about trying new medications. I also get uneasy about the fact that I continue to put these chemicals in my body without knowing how they will affect me. So, over the years, I have become more hesitant to readily fill a prescription a doctor quickly suggests.

I don’t want a diagnosis of yet another condition/syndrome

Another reason I subconsciously procrastinate dealing with new pain & symptoms is that I have received four new diagnoses in the last four years – a severe food allergy, Narcolepsy w/o cataplexy, Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). So I am scared that if I go to another doctor with new pain or new symptoms, they’re gonna slap yet another label on me. Which, I know, it’s better to have the knowledge than to be ignorant to it. And I can’t predict the future. And I shouldn’t worry about things before they happen. I know. I get it. But it’s hard to think that way when I’ve been through this pattern of “go to new doctor, get new diagnosis.”

I can’t afford another condition/syndrome

It’s uncomfortable to talk about finances and even worse to think about them. But as people with chronic illness know, a lot of your money goes toward your health (or rather, trying to fix it.) Most people my age are both 1) spending their money on travel & activities and 2) saving it. I feel like I’ve had to pick one of the two. And I can honestly (and either shamefully or shamelessly, I haven’t decided yet) say that I have not been saving mine, and instead been spending it on my health & living life as an adventure. I want to participate in the things my friends are doing. I want to see the world. I want to make memories. When you’re sending a big chunk of your money on doctor visits & treatments, you really have to pick and choose where your remaining money goes. So I know that seeing a new doctor and possibly paying for new treatment only means more of my money will not go where I want it to.

I know, I know – this sounds like a whole lot of “cry me a river,” but it’s something I think a lot of people with chronic illness deal with.

Like anything else, though, I know it’s not OK to ignore something just because you don’t want to deal with it. I know that the reasons I have listed above are very valid reasons for me to be hesitant to address these problems – but they aren’t reasons for me to pretend these problems aren’t there.

I write this post as a way to 1) hopefully write something that you can relate to, so that you don’t feel so bad if you are also procrastinating dealing with a new health problem or symptoms and 2) to hold myself accountable.

If we talk the talk, then we should also probably walk the walk.

The Most Typical of Mondays

Yesterday was a test of my patience, perseverance, and temper. What started out as a classic “Monday Mishap” escalated into a “Monday Mayhem.”

I experienced those typical “ugh” moments that everyone faces pretty often-losing your wallet (temporarily, thankfully), dumb drivers on the road, timing mishaps and office troubles–but there was one segment of my day that just really set me over the edge.

While I’ve been making some progress with my headaches and narcolepsy situation, I’ve only seemed to take numerous steps backward in my journey with food allergies.

After ending up in the ER two weekends in a row, I’ve been eating really “safe” foods because it’s nerve-wracking to eat when you aren’t 100% sure what your food allergies are. So yeah, the anxiety is continually on the rise. So I did what any normal person would do (after a year…whoops.) I made a follow-up appointment with an allergist–optimistic that the doctor would be able to ease some of my anxiety, answer some of my questions, and bring even a tiny bit of peace to my mind. Yet, I got just the opposite.

I’ve seen my fair share of doctors and I’ve seen a few who I didn’t exactly see eye to eye with regarding treatment plans. However, I’ve never seen a doctor who made me feel so belittled, frustrated and generally pissed off before. He looked at me like I had ten heads when I asked him questions and told him things other doctors have told me. For reference, I’m very new to the food allergy world. It’s not like I’ve had a peanut allergy my entire life and know how to manage it–no I recently developed a seafood allergy–which he thinks is not even possible (what?) He spewed his BS at me, shook his head like I had told him I got my information from “The Onion” rather than from accredited doctors, and sent me on my way to get a blood test for only crab and salmon (to my knowledge, there is other seafood out there, but what do I know right?) Times like these I wish I had been ballsy enough to tell him his word meant nothing to me and walked out, but I politely left the office and went to go get stuck by another needle. (although the guy who took my blood was awesome, so super grateful for that. I’ve never had such a painless experience getting blood drawn. props to him.)

I understand that there are times when people have bad experiences with doctor visits. However, for spoonies such as myself who see doctors more often than they see most of their friends, it’s extremely frustrating. It wasn’t so much that I was sad, I was just genuinely pissed off at this guy. It was a waste of my time–and spoonies also know how valuable time spent in a doctors office is when we’re trying to find answers.

I sat in my car afterward cursing the doctor wishing I had told himself to stick his handshake where the sun don’t shine, until my dad kind of set my mind right. He made me realize that there’s really nothing to cry about. I’m allowed to be pissed off, but I have to be able roll with the punches. I have to be able to take the annoyances and learn from them. I have to try to find even the tiniest positive thing from the experience and move on to what’s next.

We’ll all have days that make us want to break things and scream to the skies yelling “Why me? What did I do in a past life to deserve this shit?” But at the end of the day, we can’t change what just happened. We have no control over what and how much gets thrown in our path. We do, however, have control over how we handle those days. We can throw in the towel and walk away cursing under our breaths. We can rage until someone fixes their wrongdoings brought upon us. Or, we can take a deep breath, calm ourselves down, figure out the next step and move forward. We can gather our patience, grab a hold our temper, and persevere on.

It’s not the destruction that’s tearing you down that will define who you are or where you go in this life. It’s how well you step over the rubble and walk through the fire.

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Chronically Grateful Challenge Day 2: What Are You Most Grateful For On Your Healthcare Team?

  
I’ve seen a wide array of doctors and been to countless offices. While they all have tried to give me a diagnosis and treatment, I’ve only felt truly attended to and comfortable at a few of those offices. My neurologist and headache doctor is incredibly smart and transparent. Transparency isn’t always comforting in the healthcare world, but it’s so important and crucial to good and effective communication with your doctor. These doctors are exhausting all they can think of in order to help me. They answer my messages in a timely manner and they are able to sympathize and understand (or at least try their best to understand) my concerns, emotions, and symptoms. Patients like myself get frustrated pretty often because I have yet to find any answers, but these doctors don’t take it personally and they do what they can to help ease my frustration. I’d be nowhere without them! 

Acupuncture–Take One

Today, I laid in a doctor’s office with 18 needles sticking out of my face, ears, hands and feet. I have been wanting to try acupuncture for a while, and today I finally did it. My whole apprehension to needles and fainting reputation held me back for a while, but it wasn’t that bad in the end.

My neurologist and past chiropractor had suggested just giving it a try. They warned me that since everyone’s bodies are different, not to base my decision to try it on other people’s success stories or lack of success from the method. They told me some people feel a difference right away, some it takes a few visits and some don’t ever feel relief to their pain or a change in their body.

I’ve reached the point though, where I am willing to try almost anything to see what may help my head. I’m on the path to some more drastic methods, but in the mean time I’m trying everything else I can think of before diving into the more intrusive type procedures.

I can assure you I looked nowhere as peaceful and relaxed as this person here does. Not sure how one ends up looking this way with needles sticking out of your face.

Anyways, I sat there with needles in my face, ears, hands and feet for about 10 minutes. While I didn’t notice much of a difference today, I’m going to go back and see if a repeated procedure helps at all.

One positive from this appointment was getting a different opinion and insight from a different type of doctor. A doctor who thinks mechanically and a little bit outside of the box. He gave me great insight and his thoughts as to possible causes for my pain and assured me he would look into everything I handed him in order to see if he can help at all.

It’s not a doctor I would have ever really thought to go to, but he really did point out some things about my body that other doctors have not been able to do.

So if you’ve been debating whether or not to try this method yet, I say it’s worth a shot! You never know what different things you may hear or if it will help until you try it! And if I didn’t faint with the needles in, then neither will any of you!

The Search For The Right Doctor

For people with chronic pain, disorders or illnesses, finding a doctor that really listens to you, answers every single question, and actually is proactive about finding you answers, is very difficult. It’s a tasking processs and by no means a short one.

I started getting headaches around the age of 12 and started seeking treatment around age 14. I have seen so many doctors I forget about them until my parents mention something like “well remember that one doctor said…” And I go “oh yeahhh…forgot about them.” 

Countless practices, front desk faces, nurses and doctors. It’s kind of like that rascal flatts song that says “God blessed the broken road that led me straight to you.” Yeah that’s how I think of it.

After all those years and hours spent waiting to see a new doctor, I found a practice and doctor I really love. I was there today (again) and I felt like when I was talking to the PA, she was actively listening and giving me all of the information and advice she had and could think of.  

 
You know it’s a good practice too when you have to book like 3-6 months in advance an appointment to see the actual neurologist. Before that, you have to see the PA. It shows he’s in very high demand, and while my schedule doesn’t like that, I really do. Gives me confidence that he knows his stuff. 

So to everyone out there who is still searching for a doctor that seems to really want to listen and help, they’re out there. Just keep looking. Keep up that trial and error process to eliminate the ones who aren’t helping. Don’t let any doctor dismiss you or your problem!