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.

2017 WEGO Health Awards–Vote for The Headache Heroine!

I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram  and Best in Show: Twitter.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

Being nominated means that I have in some way, shape or form helped another person like myself–someone who struggles with health issues and who may have at one point felt or still feels totally alone in their journey. I’m so glad that I can use my experience to empower others to feel empowered.

I’m looking to you, my incredibly supportive network, to help endorse me for this award.

Click here to be taken to my WEGO Health Awards profile and click “Endorse” under my nominee photo. You can vote twice–once for each category that I have been nominated in!

If you’ve ever felt touched by something I’ve written and shared, if I’ve ever made you laugh or inspired you to keep fighting–please consider endorsing me for this award!

Thanks fam 🙂

The 2017 List of Top 10 Allergy Friendly Restaurant Chains is Now Out!

The 2017 List of Top 10 Allergy Friendly Restaurant Chains is now out, people! GO CHECK IT OUT!

Having been diagnosed with an anaphylactic food allergy only a couple of years ago, I still live with the dreaded anxiety that tags along when I eat out at restaurants. It’s an anxiety that is hard to explain to people without food allergies, because they’ve (fortunately and thankfully) never experienced the terrifying feeling of having their throat start to close or having their body become covered in hives.

Once you’ve experienced those awful symptoms, it’s understandable to be worried and anxious when eating out at restaurants–especially because one of my anaphylactic reactions happened at a restaurant due to a wait staff member in their words “not taking my allergy seriously.” FOR REAL?

Since then, I’ve been extremely careful when eating at restaurants, because it’s up to the wait staff to take our allergies seriously (even though we shouldn’t have to tell people to do that, *eye rolls for days*.) Once we place our order and inform them of our allergy, we have to trust them to then efficiently communicate to the chef and then we have to trust the chef to execute accordingly.

Restaurants that pride themselves on and who prove themselves to be allergy-friendly have so much of my gratitude and respect. A restaurant should want to make sure that all of their customers are happy, comfortable and satisfied.

The restaurants on this list prove themselves to be allergy aware and friendly, which in return proves themselves to me to be outstanding places of business!

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source: https://www.allergyeats.com/2017-list-of-top-10-allergy-friendly-restaurant-chains/

So next time your friends want to go out to dinner, maybe suggest one of the restaurants on this list. You’ll eat delicious food with good company, and you can worry a little bit less 🙂

*My personal favorites on the list are Chipotle (because it’s an allergy friendly chain that offers fast food pickup) and Not Your Average Joes (because their staff is outstanding and so is their food–seriously, try their bread!)

 

This is not a sponsored post, just one blogger’s opinion 🙂

Thursday Tips & Tricks: Food Allergies At Home 🍓🍞

Food allergies are a pain 🙅🏼. They’re often hard to manage & can be difficult to live with. It’s especially hard when you live with other people. 🏡

Here’s an easy trick to help make yours and your roommates/family members loves easier: label all the food with small colored dots🔴. For example, foods or ingredients with seafood in it can have a green dot, foods/ingredients with gluten in it can be labeled with a yellow dot, etc.

It just helps everyone be more aware and helps everyone in the house live a little more stress free😌

(P.S. I saw this idea on buzzfeed! Aka the best place ever) 

My Anaphlyaxis Story

For those who may have seen my previous post, the post below is the story I wrote for the Food Allergy Resource and Education website:

I was at a restaurant and had made my allergies very well known to the waiter and the staff. However, they didn’t take my allergy seriously and made all of my food on the same station that they had made their famous fish menu item. I had an anaphylactic reaction about a minute after having a tiny bite of what I thought to be a “safe” cucumber with tzatziki sauce.

This was my first reaction since I had been diagnosed and I wasn’t sure when to use my epinephrine auto-injector and decided to wait because I thought mysymptoms were getting better. I told myself if I calmed down, breathed deep, and didn’t think about it, that I would feel better. I am so lucky and glad that I was with a close friend who drove me to the closest ER. She had actually tried to use my auto-injector on me, but didn’t know how to use it correctly. She, in the heat of the moment, forgot to remove the safety cap. And honestly, I don’t blame her. It was probably a terrifying moment for her as well. So that’s when I decided to wait out my symptoms.

I now know that when in doubt, you use your epinephrine auto-injector. I learned that you should NOT wait out your symptoms. Since then, I have taught and continue to teach all of my friends and family how to use an auto-injector. The most important thing is that you educate yourself on the symptoms and treatments, and you educate your loved ones as well.

Always carry your epinephrine. Always read labels. Never feel embarrassed or like you’re annoying someone when you ask to read a label, or you ask how they cooked something, or you ask how they cleaned their kitchen ware. Do not feel like you are burdening anyone, because it is your life and safety at hand.Know that you are not alone, also. There are always a tremendous amount of support and resources out there for you.

Tips and Tricks: Resource Pages 

  
Recently I’ve added three new pages to my blog: resources pages for headaches/migraines, narcolepsy, and food allergies.
I went through all the resources as I was choosing which were most beneficial to share (there’s a lot, because there’s so much helpful info out there!) and realized that I wasn’t even aware of half of the info/websites/etc that I shared. That means that there are so many resources for us spoonies to take advantage of: clinical trials, foundations and organizations, blogs, support groups, fact sheets, and so much more! 💻📋📝 I strongly urge you to visit some of these resources every week or so because there’s always new info for us to take advantage of. We need all the help we can get, might as well take advantage of the free help! 

Time Stops For No Man

A not-so-friendly reminder for anyone who lives with a chronic condition or a continuous hardship that often keeps them holed away inside: The world keeps spinning, the clock keeps ticking and the years keep flying by.

This thought makes a continuous loop in my mind, driving me almost mad. Have you been driven mad by it before also? If you’re thinking to yourself “no I haven’t,” then please share with me your secret.

I’m in a period of my life where I’ve been handed multiple bad hands all around the same time. Do I think I’m the only one in this position? Of course not. Am I grateful that my situation is not worse? Always. But do I still lose myself to an overpowering feeling of frustration and helplessness sometimes? If I said no, then I’d be lying to all of you as well as myself.

Today I woke up with a headache that I knew was going to stick around for the rest of my Saturday. As my body and mind awakened, I couldn’t help but think”here we go again”–A thought I’m usually very capable of pushing away, making room for much more encouraging and positive thoughts to fuel my day. But I’m only human and we all have our moments.

A day of pre-planned activities, of seeing family, of changing out of my sweats and leaving the house, all slipped from my fingers before I even had a chance to attempt to keep my grip on it. My bed was my companion today and my thoughts were that friend in the group who always shows up unwelcome and then sticks around until you show them the door.

Most of the time, I give myself an hour or two before I kick myself into gear and start acting like my normal self again. But there was one thing my brain just couldn’t let go of today: The idea that I have wasted (and will continue to waste, as it’s looking right now) so much of my little time here doing nothing fun, nothing of significance and nothing that will make memories, due to my headaches tying my hands and my feet to my bedposts. I’ve spent so many mornings, afternoons and evenings wondering what other people are up to while the next episode of Friends automatically starts playing on my laptop. It leaves me feeling so full of resentment. It leaves me feeling like I have to play such a large game of catch up with the rest of my family and friends the next time I’m feeling up to getting out of bed.

If you’re reading this and rolling your eyes thinking “Girl, lose the drama because you have it nowhere near as bad as other people” Then please, keep thinking it, because you’re absolutely right. I still have a functioning body, an intelligent (boastful, much?) mind, and all of life’s necessities at my fingertips. I don’t live in the hospital, I merely just make my friendly visits there. I take medicines to help me get along, but I would be able to survive without them. My life is wonderful in comparison to thousands of others. I’m incredibly lucky to be able to do so many every day activities on a pretty routine basis. So I apologize in advance if my venting offends anyone. My problems are so minute and I resent myself for thinking those thoughts of resentment and for sometimes adopting that “woe is me” mindset. It’s a terrible cycle to jump into. Grab a hold of the rails before you accidentally fall into it as well.

I don’t enjoy sharing these thoughts with others, mainly due to the fact that I don’t want to seem ungrateful for what I’ve been blessed with in my life. But, why have this blog if I can’t write about what I am honestly experiencing, feeling and thinking? My purpose of starting this all was to reach others who might possibly be feeling something similar to what I am feeling. I’m sure other spoonies out there, and even other people who may be facing something in their lives that are keeping them from doing everyday things they hope they could be doing, know this feeling of losing time to something that so often takes control of their lives.

I didn’t mean for this post to be a buzzkill, per se. It’s one of those days, though, where writing has been the only outlet that has helped start to set my mind right again.

I wish I could practice what I preach more often and focus on the positive things every day of my life, but as many things are, it’s much easier said than done.

A goal of mine now, after having spent the day angry about the lost time in my life, is to spend every waking moment that I feel healthy enough to be doing something other than lying in my bed, doing something new, exciting, adventurous, fulfilling, thoughtful, and memorable.

There’s no real way to know what tomorrow will bring. But I do know that I’m going to take full advantage of every moment that I can. I don’t want to be afraid to hear the ever-present clicking sound of the minute hand ticking away on that clock on the wall.

 

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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No Journey Without Winding Roads

What would kind of journey would it be if there were only straight paths? Sometimes we don’t expect the sharp curves and get thrown off balance. That’s a little how I feel right now.

As I posted earlier today, I’m on a progressive track to finding some answers for my headaches. Yet, it seems as one good thing comes along, life throws yet another curve ball my way.

The past two weekends I’ve ended up in the ER. The first time was due to a completely careless and negligent restaurant that cross contaminated my food with fish (I have a severe seafood allergy) which sent me to the ER. They didn’t take my allergy serious enough, even though every allergy stated by a patron at a restaurant should be taken very seriously. Since then, I’ve been paranoid and very anxious while eating. The adderall side effect of heightened anxiety doesn’t help that.

This past weekend, though, I ended up in the ER with what was either another allergic reaction or a severe panic attack. However, I didn’t risk taking chances to find out which it was and used my epipen (well rather I made my boyfriend do it for me, which I’m sure was even more nerve wracking than  it would’ve been had I done it myself.) Spent most of the night in the ER getting poked, prodded, and full of anxiety.

However, I look on to the next step which includes: seeking an allergist to really clarify the severity and sensitivity of my allergy, finding ways to deal with my anxiety, and trekking on down the winding road that is my journey.

These past two weekends defeated me, but it is only temporary. We will be get hit by life’s curve balls and it’ll feel like we won’t be able to get back up to the plate again. However, we have to get back up to the plate ready to swing. These single temporary defeats are not our final defeat. We have to continue on prepared for the next bend in the road, knowing that there is something much greater waiting for us at the end of it.