Soulful Sunday

   for all of you who just can’t understand why things are the way they are right now. Keep holding on to the faith that one day we will understand. 

I can’t understand why it is I’m feeling the way I’m feeling lately, both physically and mentally. Can’t figure out why I haven’t been able to get out of this funk and can’t figure out why this time is different than others and why my head is doing so bad for so long, so different than times before.

Holding on to the faith that one day I will understand. Hoping you all are doing the same, no matter what it is that you’re trying to understand. 

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 

💛

Song of the Week: “Slow it Down” by The Lumineers 

Song of the Week: “Slow It Down” by @thelumineers 
This song stops me in my tracks every time it plays. I’ve used it as a pillow to lay my head down on during times when I’ve felt defeated, overwhelmed, and discouraged. 
One of my favorite lines of any song is in this song:

And when she stood, she stood tall

It takes a lot to stand up every time you get knocked down–especially when you’re getting knocked down over and over again. And sometimes you just can’t stand up after every knockout. But I tell you this, when you do stand up to all the struggles life’s been throwing you, people will notice and stare in awe.

This song comforts me in a blanket of understanding when I don’t have the strength to stand, but encourages me to gather the courage to do so. Maybe it can do the same for you. 💙

Do any of you feel a similar connection to this song? Or have a song that makes you feel a similar way?

Comment below: 

Headaches Always Steal The Spotlight 

There are many tough truths that spoonies have to accept after dealing with a chronic condition throughout their life. Even when you accept these truths though, they still can be hard to swallow.

One truth that I’ve recently learned to start accepting is that headaches and migraines present themselves whenever they want. Headaches don’t care if you’re at work, a social outing, in class, at a concert, or just hanging at home with family or friends. Headaches don’t care if it’s an anniversary, your birthday, a holiday, or just what you had anticipated to be a relaxing Saturday evening.
How do I know? Experience and the knowledge that headaches have taken over the control room.

This year on Christmas Eve, I got a migraine. Whoopee, right?

This led to a few hours of frustration (but that was already higher than usual due to other health problems) and tears. Yeah, I would admit that I didn’t hold up as well as I would’ve liked to.

My migraine controlled my emotions and mentality for a few hours that day. I thought, angrily for a while, “Seriously? Christmas Eve?” Had to spend a few hours napping, away from my family. I felt isolated in so many ways. Felt like this only would happen to me. “Just my luck.” Felt like I wasn’t able to turn my thoughts from negative to positive ones. Felt defeated and like I had zero control over my life at the moment.

After moping, napping, crying and laughing at my situation,I mentally reminded myself that if this is how bad I have it on Christmas Eve, than I am the honestly one of the lucky ones. I thought how there are so many other people out there who have incredibly worse situations than my own and who are dealing with things beyond my comprehension. I thought about the many people who don’t have a roof over their head, who are enduring illnesses that keep them on bed rest and worse, and people who don’t have family to share their Christmas with.

These thoughts not only humbled me, but gave me the physical and mental strength to get up and move on with the night.While I know I sound dramatic, at the time it didn’t seem possible to get myself out from under the covers.

Even though the head pain was still there, (not as bad as it had started out as, but still there) I was still able to turn my night around and ended up having a wonderful time with my family that consisted of laughs, smiles, and tons of delicious homemade snicker doodles (made from scratch by yours truly.)

The truth is: headaches, chronic pain, or any chronic disorder, etc. will remain in control of your body, probably more than a majority of the time. You, however, can be in control of your mentality and good spirit. Learn to take control and turn your “woe is me” moments into “glad to be me” moments.

It’s advice that I need to learn to take more often, myself.

 

 

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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May Have Struck Gold, Gotta Keep Digging

Years of day-time sleepiness that I chalked up to not getting enough sleep. Too many naps to count, that never made me feel any less tired. The definition of a non-morning person. Those all describe me. Better word for all of that? Narcolepsy.

A couple of weeks ago, I was diagnosed with narcolepsy. Something I never would’ve even considered had my PA not suggested doing a sleep study. To be honest though, I expected to do this sleep study, to again find no answers to my chronic problem. However, it turns out that the average person takes about 10 minutes to fall asleep and about an hour to fall into REM cycle. I, however, being the non-average person that I am, take an average of 2 or less minutes to fall asleep and an average of 1 minute or less to fall into REM sleep. Pretty crazy, right?

My doctors were excited though, because I’ve finally found an answer that’s treatable. Apparently a lot of their headache patients that go to that neurologist and headache center, have narcolepsy. So they prescribed me Adderall and honestly I felt a difference almost immediately.

Apparently, people with narcolepsy never reach restorative sleep, meaning they never actually get rest–even though they are sleeping. So they often wake still extremely tired, never feeling rested. Or maybe they wake with headaches (ahem, ahem, ME!). Most people with narcolepsy don’t know they have narcolepsy. It can be brought on by a trauma, or just onset in childhood. If let diagnosed, that person would be living with chronic fatigue for years and may never know it. And when you’re living in a constant state of fatigue, it affects other parts of your body, like your head. So many people with chronic daily headaches, not so coincidentally, also have narcolepsy. Eventually, the adderall (or whatever other stimulant or narcolepsy medicine) should help the person stay alert and feel awake while also ridding them of their headaches.

But in all discretion, I was doubtful. How many times have doctors seemed sure of a treatment for me only to have it fail? Too many times. But as of now, two weeks into my medication, I am not disabled by my headaches every minute of every day. I feel awake enough and not like I’m in a daze the whole day.

Will this eventually help end my exertion headaches so that I can climb stairs, walk, and exercise without getting a headache? That I don’t know. Will this treatment work for longer than a couple of weeks, and will it take away my headaches that I’ve lived with for 12 years? That, I don’t know. But I do know, that I can hope and have faith that this will work.

To think, so many people giving me a hard time for sleeping in so late and not being a morning person–the whole time I was never truly sleeping.

Here’s to the hope that this treatment will bring concrete and lasting answers for me.

There is a bright light ahead, people.

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. 

Keep On Truckin 

  
Test after test. Doctor office after doctor office. There’s really no break when you’re trying to figure out what’s causing your chronic pain. I’ve don’t a number of X-rays, ct scans, and mris over the past few years. I don’t really remember how many.. So it always makes me uncomfortable to add another one to the list. However, I’m trying every possible route I can think of in order to (hopefully) get some answers as to what’s causing and how to treat my daily headaches. 

So today I did an X-ray of my cervical spine. Gonna see if it shows anything out of the ordinary. When one part of your body is messed up, it can affect other parts of your body as well. Neck issues are often linked to headaches or worsened headaches. So I decided to see if that’s a possibility in my case.

Happily accepting any good luck and wishful thinking!