What’s the Word: Generate

  
To cause to arise or come about.

Any spoonie knows that a lot of the journey involves waiting around for a diagnosis, test results, treatments, answers, and seeing if treatments are even working. Sometimes (too often) doctors can’t figure us out. 

We wait around for positive things to happen in a world where we run into so many road blocks.

Sometimes, though, it’s up to us to take control of our own journey. Be the captain of your own ship, as they say. 

We need to generate positivity in our lives. If we wait around for the positive things to happen to us, they rarely will. 

This is your journey–you’ll be amazed what you can do with it when you put your back into it. 

Even Big League Pain Meds Won’t Help This Hall of Famer 

It’s been a full week since this  pounding, throbbing, pulsating, evil like migraine has started. 

With no end in sight, I went to the ER for acute treatment to at least get rid of it for a while.

After 4, yes 4 tries to get an IV in me, I was administered the big pain killers. 

Sidebar: I’m sorry but even if I don’t have the greatest of veins, it shouldn’t take 4 very painful tries to get an IV. Also don’t ask me “are you usually difficult when it comes to IVs?” Lady, even when I’ve been very dehydrated, people have gotten my vein on their first try. This is the second time at this same hospital that they have take 4 times to get a vein. And mind you, they hit the wrong place a couple times cuz it was much more painful than normal.

Ok sorry, to continue:

I was hopeful that at least this would get rid of my migraine until tomorrow.

Well, I felt relief for all of an hour. And then dude hammering away in my brain started hammering away again.

The pounds. The thuds. The beating. 

It all is back. 

So now what? What’s a girl to do now? 

I’m trying very hard to trust in God’s path for me. Trying very hard to keep the faith strong when the entirety of me is weakened to a pulp.

My fear is an ocean and my worries are a swarm of gnats in the summer heat.  

  
Will try to sleep now and pray that tomorrow brings new hope, new relief, (and once science gets there, a new brain 😁) 

In high need of good thoughts, prayers, advice, hugs, and puppy cuddles. 

I accept any or all of the above 

💛

It’s Not Bragging if it’s True 

  
Well I’m on day 3.5 of this ongoing, debilitating migraine.

  And even when I try to silence my brain to give it a break, I can’t stop the ever flowing thoughts. Because that’s how it works, right? So today I started thinking: 

What’s one thing all spoonies hear almost every single day?

For me, it’s “I can’t imagine how you do that. I wouldn’t be able to handle that.” 

Hearing this has become as familiar as hearing “how are you” or “good morning” for me. From strangers, friends, family, co-workers, and if my dog could speak probably from him too.

Most of the time I think “yep. It sucks.” But sometimes I think to myself: “You know what. That’s a compliment, and it’s very true.” 

When they say “He wouldn’t put you through something you couldn’t handle.” I guess it’s actually true. Us spoonies were given our illnesses because we are strong enough to handle them. Do we still break down in absolute pain and misery? Well yeah, but who wouldn’t? But I look back at so many times of my life (final exams, competitive fastpitch softball games in the summer heat, driving an hour home at night, running the mile in high school, making it through a work day full of loud co-workers and staring at a computer screen) that I fully and willingly participated in while I had full blown migraines. 

Do I think other people would be able to do the same had they been in my shoes? Some people, sure. Other people, no I don’t think so.

So during long migraine (or other chronic pain or illness) spells, while it’s very easy to wish you were someone else in a different body, I think it’s more effective to focus on how strong we truly are. Not many people could deal with this type of pain on a daily basis. Do I think I’m stronger than other people? In this situation, I do. And I’m proud of it.

It’s not bragging if it’s true, right? 

 

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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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! 

Zero To Hero

  
At some point in life, we will be broken. It’s inevitably a part of living. The hope is that we can rebuild and become strong at those broken places. Ernest Hemingway was a powerful writer and I find myself connecting to so many of his words. 

People with chronic pain or illnesses have a higher chance of being broken more than once, I think. There’s so much physical, mental and emotional struggle that comes along with the chronic pain we face. It’s a packaged deal and we don’t have the option to pick and choose which we go up against. 

For the past two months or so, my headaches have been relentless. Forcing me to force smiles and laughter. Making me work twice as hard as I normally would to do everyday tasks and things I need to do to get by. I’ve had some sincerely joyous, carefree moments within these two strenuous months. I do manage to have fun and truly laugh beside friends and family even during the worst of it. But when I take a step to the side and have a sidebar of my own, I have felt myself breaking to the point where I know that I’ve been broken by this life. My headaches have pushed tears through my eyes and created a nonstop state of frustration. It’s as if I’ve hit a wall because I have all these different directions I can go to try to figure out a “cure” or a diagnosis. But it’s hard to try to figure out which is the best road to go down first. 

I want to be one of the “some” that Hemingway talks about in this quote though. A part of the some that walk away stronger at my broken places. I’m determined, really, to be a part of that “some.” So I truck on, keep seeing different doctors, taking different tests and trying a wide range of tricks to try to help bring my headaches down even just a tiny notch. 

So if you’re feeling broken, just know you’re not alone. Know that you’re not a victim, because it happens to everyone. But also remember that you can take that feeling and build upon it. You can either let it continue to drag you down leaving you in pieces for someone else to try to put together, or you can become strong at those broken places and know that it will only turn you into a stronger fighter and more compassionate and empathetic person. 

Facing The Storm 

  
It’s one of those days where I’m running really low on spoons. Been laying in bed all day, drinking lots of water and tea and kind of just letting my headaches dictate my day & mood. Every day though, is a learning experience on how to manage and deal with my pain. Learning how to handle your chronic pain and keep on living a normal life is a journey in itself. Some days are harder than others, but it’s in our power to learn how to sail our own ship.