Work vs. Real Life

I've been struggling these past couple weeks with migraine due to increased stress at work. A part of me wonders how much it's worth being screamed at by people who just want to save a couple bucks. Not only do they raise my blood pressure with the added stress, but I'm also triggering a new migraine. Why is it necessary to call me every name in the book because you wore an outfit for a day then wanted to return it? Why must people proceed to verbally abuse my associates because they were obeying the company policy and doing their job? Do I yell at people when I want something done? NO! I was raised to do the right thing and play with the cards handed to you. Yet, many others skim by, take advantage, and get what they want. How is this right?

Yesterday I went back to the bad neurologist to get my results from a recent EEG: normal. Dude you could have saved me the $40 copayment and just call me. The only thing I'll be using this office for will be getting Botox back. If they can even do that correctly. 

Tomorrow I'm doing a field vision test because my optic nerves weren't looking great at my last eye exam. I'm not going to lie, I'm nervous. With everything I've found out about my broken body, I'm just waiting for the other shoe to drop. It would be great to know what's really going on with my body and how to fix it. However, I don't think I'll ever be that lucky.

So I continue to be yelled at during work to keep my insurance, do a good job, and work with a great team. If it weren't for my coworkers, I'd run for the hills. 

I'm also continuing to audition and submit for acting projects. Keeping my passion current! Slowly working on three writing projects and wanting to premiere them this summer/fall. With the pain and work, I've been trying to find the time to do what I actually WANT to do. 

The Color of Pain and Taste of Happiness

A writing prompt on Facebook asked to wrote the color of pain and the taste of happiness. Here's my interpretation:

Every time I get a migraine, I imagine colors of red and blue. Red for the pain that pumped in my veins. Red for the anger inside my chest. Blue for the sorrow I felt at my helplessness. Blue for the anguish at my pain. When you combine these, you get a perfect shade of purple. The purple not only represents the red, but the blue as well.

When I think of happiness, I imagine big beautiful strawberries on top of a perfect slice of cheesecake. The creamy goodness of the cake sends a sweet sensation to the taste buds. The strawberries tickle the senses and instantly brings a smile. At the end, I never feel guilty.

Attack of the Brain: Revenge of the Migraine

Yesterday I had a bad situation: My pain level was at 12, insurance ended the day before, and I was in no financial situation to see a doctor. I debated going to Urgent Care, the least expensive option. The other part was I was eligible for COBRA but haven't had any information to activate it.

So what is a spoonie to do? I chose to sleep as long as I could. Once my parents got home,  if my pain level was still above 10,  I would be taken to Urgent Care. Thankfully, the pain lowered to a range of 5-7 which is manageable for me. How sad is that?

If a completely normal, healthy person borrowed my body for a day, they'd think they were dying. My body is used to constant pain so I only react to the top pain levels. As I'm typing, I'm at a 4. Stiff back of the neck and mild headache.  This is my daily battle.

My next thought was disability. I feel like I'm not worthy of it since I'm able to walk and have good days. However, I cannot work a full time job anymore. How will I support myself if I can't work like a normal person? So the long process begins. Will I be approved? I'm not sure, but I've got to try.

Any spoonies have days like me? How do you cope?

The Cycle of a Spoonie

Today has been a typical spoonie day. Let me explain:

1. Wake up with sore muscles and have to take an extra half hour to hour to fully get up.
2. Try to save as many spoons while getting ready. Put your mask on, get it together, and head out.
3. The commute brings a migraine due to the sounds, lights, and frustration.
4. Once you get to work, you stretch to keep trying to get your sore muscles to wake up.
5. During with you do as much as you can to not trigger a migraine. You take breaks, turn away from the computer, and take walks to keep the leg muscles warm.
6. That 3:00 sugar low hits and you sneak a snack to keep from another migraine.
7. At the end of the day, you're grumpy, sore, and ready for a nap.
8. You get home and soak in the tub to relax and have dinner based on your pain level.
9. Time for bed. It's 8 pm but you don't care.

It's a catch 22: you sleep to reduce pain then get sore from too much sleep. Where's the median?

Low Grade Pain = Productive Until Migraine is Triggered

This morning I had a bad migraine, which gave me a stiff neck so I had to wait to go to work. Man, I love when that happens. When I got to work, my vertigo was at a minimum and pain was just at "light switch level" (turns on and off in an instant) so I was able to get a lot of work done until I triggered a migraine and had to go home.

I made sure to buy my dog a new bone and toy because I felt I'd be able to conquer the world this evening and I was RIGHT! I've been organizing paperwork, dishes are done, laundry in progress, dinner is probably going to be quick, and now I can do some writing! I have a bad feeling all this productivity will trigger a migraine though. Does anyone else have this issue?

Here's what I've tried to minimize it:

1. Pace yourself - Take breaks when you can and keep hydrated. Remember, water is always your friend. When you live with chronic pain, simple activities are like running to "normal" people. Keep a good pace and don't rush.

2. Distraction - I love music and tend to play my 90's Pandora Station while accomplishing my tasks. Not only does each song bring a new inspiration and emotion, but the music itself distracts me from the throbbing pain in my hands/head when I try to work.

3. Smile - Ever notice that things don't seem so bad when you just take a moment and smile? Sometimes I need to stop, force a smile, look in the mirror, and I've fixed myself for at least five minutes. Each moment of relief is a blessing.

4. When your psychic ability tells you it's time, then stop - We can't overdo our activities and cause more pain than intended. You know when pain is coming (although sometimes we don't) so when that "feeling" hits you, then it's time to call it for a while.

I hope you all have low-grade days! **Virtual Hug** I made this e-card today to describe this feeling.

Bunny Jumping in My Head

One day, a child asked me what a migraine felt like. It's difficult to explain these pains to them so I made this poem:

The only way to tell you about the pain in my head, 

is to say there must be a bunny jumping on the bed

You see, he lives on my brain, but he doesn't sleep much 

because he has dance parties with friends and causes me to fuss

He doesn't want to leave or stay still for very long 

because everyday my head hurts, and I start to see a fog

He likes to visit my tummy to do cartwheels and flips. 

It makes me feel icky with lots of bathroom trips

He likes to play bumper cars all over my tired brain. 

His fun is never ending and neither is my pain

The doctor says he’s here to stay, but we can make him sleepy. 

With diet, exercise, and medicine I won’t be so weepy

Maybe one day we can be friends, and he’ll stop jumping all the time. 

Give me a day or two to rest before he has his fun tonight.

Meds meds meds

I'm going to do a remix of the popular 90's hit "Bills, Bills, Bills" by Destiny's Child.

Can you fill my meds
Can you fill my nausea med
Can you fill my pain med
Then maybe the pain will leave my head.
I don't think you believe
That my pain is killing me.

Today was a very upsetting day because not only did I have a severe migraine, but my while body was so achy! My arms felt like I did 1500 pushups and my legs acted like I ran a marathon! I went to my walk in urgent care clinic and no one could see me immediately. They recommended I go to the emergency room. When I got there, they put me in a quiet, dark room. Thank goodness! The psychic on tv in the waiting room was driving me bananas!

They were pretty busy so it took a little bit to be seen. No big deal, I was resting so I didn't notice.

In pops a med student. He explains he's working with the doctor and is doing an assessment. No big deal. He then says (and I quote), "so I hear you have a headache?" Without skipping a beat, I growled with an evil eye and said, "migraine." Sure enough he corrected himself a lot throughout the assessment when he said headache.

At the end of the assessment he then says, "did you try Tylenol?" Steam came from my ears. I said (as calm as I could), "Tylenol is like a sugar pill. It does nothing for me." He thought that was so interesting and I doubt he believed me. He probably was testing me to see if I'd ask for a narcotic.

The nurse came in to administer my IV. Being anemic, My veins play hide and seek. They used to be a nurse's dream. Oh so painful! The medication itself burned like my Botox injections and rushes through my body. I kept thinking, "man I hope this works." Oh the things we do to reduce pain!

The nurse left and after a while I felt a sensation in my right leg that caused it to jump/twitch every other minute. That freaked me out. I pushed my call button and the other nurse was stumped.

Not long later, the doc came in to explain his treatment. He also gave me a "I don't prescribe narcotics" lecture and I immediately said, "good because I don't want them." I'd rather have medications that keep me active but reduce the pain than be knocked out and dopey.

Finally I got discharged and went home for a nap.  Woke up in time to see Danielle Bradbury win The Voice. Now my legs are killing me again! Got my prescriptions filled and ready to call it a night. Can I get a free pass tomorrow and have a low grade pain day? One can hope.

Steel Magnolias: That Which Doesn't Kill Us Only Makes Us Stronger

In what ways are you stronger because of your migraine or headache disorder? Today's blog challenge is actually an alternate topic because I'm not sure how to write the Carnival topic.

In some ways, I feel weaker because my nerves are so sensitive that the smallest noise can set off a migraine attack. People around me don't have this problem so I feel so inadequate. How did I deteriorate so quickly? I've never had these many problems before! I used to let my body take care of illness and never medicated. Now, I have to see a specialist for every little thing. All these tests brought up another problem and more stress. 

So how am I stronger? I can tolerate pain and put on a mask better than most people. When others get a migraine, they instantly cripple. I get them so often that it's second nature. Sometimes I can still smile and act like it's okay. Other times, I have to really work hard to look normal. 

See this more accurate pain chart to show how a chronic migraineur describes pain. 

Just Keep Swimming

Today's blog challenge asks how do you keep going in life when migraine or another headache disorder deals you a difficult set back. This has been something I've battled with today! I had to leave work due to weather triggers giving me extreme pain. I described it to coworkers as being in a "boiling pot of water." My face got extremely red and I was so warm to the touch on my face yet my fingers were cold. 

When that happens, I have no choice but to go home and get some rest. Sometimes medication just isn't enough. If I were to stay, the pain would only make me more miserable and my work wouldn't be productive at all. Luckily, I have a very understanding boss and coworkers, so it helps with the guilt. I do still feel guilty since that means I won't be getting as much accomplished at work. I tend to come in on Saturdays or staying late/arriving early to make it up. 

To cope, I try to look at the positives like I'm still able to work and I'm still breathing. Without focusing on simple positives, I'm pretty sure I'd go insane. Social media and blogging helps with coping too. I have many Twitter friends who go through the same and help me keep my chin up. With blogging, I am able to express my feelings freely without judgement. 

Overall, I look at the bigger picture. Everyday is a challenge and I hope to overcome it. 

Migraines are Like Coffee...

When it comes to migraines, there are infinite forms. Not all pain is the same and not all symptoms are the same. To explain, I often think of the infinite types of coffee.

Decaf - that beginning stage of migraine where you have some pain, but not enough to shut the lights off for. Decaf coffee has the flavor the regular coffee drinker needs without the caffeine.

Half-Caf - the pain is enough to start looking to preventatives but you are still able to function. I get these a lot at work and try to get back to the decaf stage.

Cappuccino - the migraine itself morphs into a new type of pain. Since cappuccinos are a type of coffee but not necessarily coffee, I thought this would explain it well. It's the type of migraine pain that moves around and causes other symptoms like stiff neck, weakness, and others. I'm experiencing this kind right now.

Double Shot Espresso - the "holy crap I'm dying" type of pain.

This is my way of explaining a few types of migraines while adding some easy to determine terms for non-migraineurs.

When It Rains, It Pours

It seems when a chronic migraineur gets any type of illness (cold, earache, sniffle, etc), it turns into an epic slowdown. When you have daily pain and your nerves work overtime, sometimes the rest of your body is too tired to fight the small stuff.

Friday, my ear started aching, and I didn't think anything of it. I've always been the type of person that allows my natural immune system to heal me rather than call the doctor for a small illness. Well, lately my immune system has failed me and my symptoms got worse...

Saturday, I started to lose my hearing in my right ear. Talk about frustration! Saturdays are the days for fun and adventure! So I spent the day lying on the couch with my dog at my side. I read an article today that said those who live with chronic pain should pet their dogs often. When you cuddle and pet your dog, your body produces a chemical for happiness and your blood pressure goes down from the calming effect. My dog is a great cuddler so I tried that therapy.

Then Sunday came. I lost all hearing in my right ear and my left had a high pitched noise that gave me an insane migraine. Oh great! A migraine on top of an earache! So I went to the Walgreens Take Care Clinic and they said I had an outer ear infection. The doctor prescribed some ear drops (which I figured would need) and told me to take four drops four times daily. I'd have to lie on my side and let it sink it. Like a good little patient, I did what the doctor told me.

So this morning, I had such an intense pain that just wouldn't go away from my ear as well as the rest of my head. I still couldn't hear out my right ear. I went into work hoping to take my mind off the pain. Sometimes distraction is a great medicine. Well, that wasn't happening. My coworker in the cubicle in front of me was calling my name several times and I could not hear him. Poor guy thought I was being mean. About three hours in, I couldn't take the pain anymore. I went into a walk-in clinic and they put an ear wick (hurt like hell) to soak in the drops and make sure all of my infection gets the medication it needs. The doctor also said it'll take about a week to heal and I should see an ear, nose, and throat specialist in 2-3 days. Add another specialist to my list!

Tonight has been off and on with the pain, but I'm taking my drops like I'm supposed to and trying to distract myself with my puppy (who's being very sleepy due to the thunderstorms yesterday) and watching The Voice and the NCAA Championship game.

What are your experiences with common illness while struggling with chronic migraine?