Existing

When I was younger, I loved Peanuts. Not the snack, the cartoon. Charlie Brown had a beagle and so did I. Snoopy made me laugh. There were posters with Snoopy about "Happiness is a warm puppy". Even now, if you Google Snoopy and the word happiness, you get a bunch of variations on that idea.

Sometimes I don't think I know how to be happy. I laugh sometimes. I enjoy moments. But I don't really recall what it feels like to be happy.

Right now, I just feel like crawling in bed and staying there. I don't want to be touched. I don't want to talk to anyone. I don't want to see anyone.

I kinda want a good cry. But I don't think the tears will come. Just more heavy sighs.

I came close to happy last night. "Brown-eyed Girl" by Van Morrison was on the radio. I love that song. It's uplifting in a way. I had a living room dance party while it played. Dancing makes me feel good. Not belly dancing right now, but just care free like I don't give a damn kind of dancing. Just me and the song without concern or worry. That freedom I think makes me happy.

But the song is over. It's another day. I feel gross really. I don't feel pretty. I don't feel energetic. I feel sad. I feel like shutting out everything and just snuggling up to one of our cats. I don't think happiness is a purring cat, but it certainly makes me less unhappy. I find it soothing at any rate.

Tomorrow is another month. Another month to try again. Another month to find something to bring myself back. Another month to maybe try new methods; new supplements; new activities; new attempts at old successes.

My new injections of Ajovy are working. My migraines are under control. I have broken through that barrier. Why do I still feel the oppression on my shoulders? Why is my back hunched over? Why can I name it for what it is, yet still feel its weight pulling me closer to earth rather than lightening me toward the air?

I should get dressed and go for a walk. Let the breeze brush my face. Smell the earthiness of spring. Hear the sparrows, jays, and robins. See the flowers starting to burst through. It's a lot of work though. Getting dressed. Going out the door. Walking aimlessly through the neighborhood. So much easier just to stay here in my robe and cuddle a cat.

After all, the new month starts tomorrow. Not today.

Could This Be It?

Friday was the Ides of March. When the 15th of a month rolls around, I usually scramble to the phone to refill my Zomig.
But this time, I didn't. I didn't even check the refill date until the day after. Sure enough, the official "you can refill this now" date was the 15th as usual. Want to know how many triptans I had left?
3. I have 3 left from my last refill.
To be clear, February was a particularly nasty month of migraine. It's of course Anniversary Month around here. More than our share of grief in that shortest month. Then the weather patterns kept swinging hard from warmish to below freezing and back again. We had storms over and over and over. I truly hated checking the weather report because it just looked like pain on my screen. I had come home on Valentine's Day with a migraine. I had taken two already that week and really didn't want to take more lest I be punished by the dreaded medication overuse gods.
After refilling my script and getting 6 more shiny pills in the unforgiving blister pack of frustration, we had some hellacious extreme weather.
I tried. I really tried not to take more than 2 that week. When your insurance limits how many you can have, you must ration your triptans, especially when insurance knocks you from 9 to 6 per month without warning or explanation.
But I caved. I took three in the week following the refill because every time I thought the agony was gone, it came raging back.  I'd missed 2.5 days of work. It was a terrible month, and I was desperate.
Then, I got my first CGRP injection. I went with Ajovy.
The week after the injection, I noticed that the pain would come. But then it would go. It was rarely overwhelming pain. Sometimes the pain was clearly coming from my sore neck, so I took Tylenol. And that was enough.
Tylenol hasn't been enough for years.
I checked my migraine app and it confirmed that my pain and migraine days were both considerably less than the two weeks prior to the injection. 
Is it truly possible that I've finally found that "Hot New Thing" that puts a stop to this train wreck?
No more elimination diets. No more eyeing food with trepidation. No more dread when I look at the weather forecast. No more prepping every night before leaving work just in case I need a sub. No more pain 18 of 30 days stolen. Is it really as easy as one injection a month?
I still have the color blobs, occasional sparkles, blurred spots, wiggly spots, and vertigo mind you. But I had those first before the pain.
Pain. No more pain. It's a kind of surreal idea. Almost disquieting. There's that unease about allowing myself to enjoy this only to have it ripped away. Where is that proverbial shoe and when will it drop?
I guess I should be optimistic, but cautious as well. After all, the Lamictal took away my pain for a month, but then it came back. I guess I'll know more when April 15th rolls around. Will I still have 3 triptans? Will they be the same 3 from this month?
Who knows? But spring starts this week. Spring is renewal and new life. A break in the bleak harshness that is winter here. I keep trying to call the CGRP Avjoy. Maybe there's a reason for that. It's a little injection of joy just in time for spring.

Fighter

I refuse to let it own me I refuse to lose myself I refuse to linger in self-pity I will not let it stop me.

Most of us have at one time or another said these and other similar statements to ourselves.

                 We negotiate. We insist. We demand. 

We bear it.                      We push it.                         We plan it.                               We adjust to it.

We tolerate.
                  We manage.
                              We endure.

We hide.

We do so many things in order to simply survive.
          You don't see it.
                                        We don't always get to thrive.
                                                       You don't feel it.
                                                                          We sometimes lose our drive.
                                                                                      You don't hear it.

We rest.

We retreat.

We refresh.

And eventually we sleep.

But then we wake up. Get ourselves ready for another day. And we fight again.

Myth

You know, there's a lot about Greek mythology that is messed up. Seriously. What's up with Zeus and his philandering and his bestiality? Then, they explain the passage of the seasons with a kidnapping and roofie tale like Persephone and Hades. Sheesh. That's some messed up shit. Then there's Pandora. While she was considered a "punishment" after Prometheus stole fire and gave it to the humans, there is something about that myth that I do appreciate: hope.

You see, Pandora unleashed the sins of the world upon the humans when she opened that box, although it was apparently a jar, not a box. Anyway, this myth is supposed to explain why there is evil in the world. But at the bottom of that jar, one thing was left and that was hope.

The myth itself isn't terribly inspiring or anything. In fact it is misogynistic that again a female is to blame for the badness in the world, but it does remind us to keep hope in some fashion. It's tough sometimes to do that; to keep hope. We hope that insurance will approve our specialty meds. We hope that the next specialist will be able to answer all our questions. We hope that a new treatment will be approved for use. We hope that the new treatment plan will be the one to make us feel better. We hope that the migraine that's sent us home that day will be gone by the next morning. We hope that we can take a trip and be well enough to enjoy all the things we have planned. We hope that trip to the emergency care won't put us too far behind on our budgets. We hope and hope and hope.

I've given up the hope that someone will be able to explain why the migraines that have plagued me for the last two years exploded the way they did. I've given up hope that my neurologist will be available to me when I need her. I've given up hope that my current regimen of pills is doing anything to curtail the migraines. I've given up hope that Botox is the answer to my pain. I've given up trying to isolate a trigger that is within my power to control.

Yet, there at the bottom of the jar is the hope that this next phase will be the one. This time will make a difference. That one of the new CGRP meds is the solution for my migraines. It's going to take awhile to see if insurance will approve it. It's going to take awhile to get over the fear of giving myself a shot. It's going to take awhile for the med to build up in my system.

But I've been waiting for a few years now. I think I can wait a bit more. After all, what is there besides hope at this point? Hopefully, this time the solution is not a myth.

Who Wants to be a Sick Person

Hello ladies and gentlemen and kindly viewers at home! We're here in the studio for another thrilling episode of Who Wants to be a Sick Person! In our studio tonight, we have Imma Sickntired. She's awaiting her disability claim decision after being unable to work for over a year. I bet you could really use the winnings from today's game, right Imma?

Yes, Burt.

Tell us a little about yourself, Imma.

Well, I was just living my life when one morning I was in the worst pain I'd ever felt. I couldn't move. I just sat there and cried in agony. It felt like...

Ok, that's enough about you, Imma. Don't want to bum out the viewers. Let's go ahead and get started then. Ready for your first question?

All right.

Ok everyone! Let's play Who Wants to be a Sick Person!  Here's your first question, Imma: You're at an office dinner party. The buffet is fully stocked. You approach with your small plate in hand. You see a deli meat and cheese platter, chilled oysters, toasted French bread with melted cheese, and a chocolate fountain with strawberries, marshmallows, and pound cake. What foods go on your plate?

Well, let's see. The deli meats are out because of the nitrites and nitrates. I don't like oysters, besides the heavy metals are terrible for you. The French bread sounds so good, but it'd tear up my gut. The marshmallows are too much sugar so...

Time's running out, Imma. What's your answer?

I probably can have some cheese since i reset my gut bacteria, so I'd go with a few pieces of cheese and some strawberries without the chocolate.

You are correct! While dark chocolate is ok for your gut, milk chocolate has a lot of sugar. Go easy on the cheese though. You may risk a migraine or some added hormones that would decrease your healthy gut bacteria.  Ready for your next question?

Let's do it, Burt.

Alrighty then! It's the holidays. You are supposed to bring cookies. Will you: A) replace the wheat flour with a non-wheat blend and erythritol and hope no one notices, B) Make them the way the recipe says to with refined white sugar and wheat flour, C) Make only dark chocolate almond bark.

Ummmmm, I'm going to have to go with A, Burt.

Oh, I am sorry Imma. You can't replace wheat flour with non-wheat flour especially in cookies. What the hell is erythritol anyway? You'd rather they eat a chemical than sugar? They'll always be able to tell. Then they'll be disappointed that you forced them to eat your way.
Let's try another one and see how you do. Your current treatment plan is not working as well as it used to. You've noticed that you're more sluggish, more pained, and more uncomfortable. Will you A) Google ideas from Mind Body Green, B) Use your doctor's Patient Portal to get their advice, C) Ignore it with the hope that the treatment plan starts working again.

Oh! I've been in this situation. While it's tempting to go to Dr. Google, I would...

*buzzer sounds*

I'm sorry to interrupt, Imma, but it looks like we've got a Suggestion from a Well-Meaning Friend to help you out.

Hello? Am I on the air? Imma?

Yes, ma'am you are on the air. What advice do you have for your friend, Imma?

Well, I noticed that your treatment plan was missing a really important option of essential oils. I know this other person who had what you have and she found this PlacebeEffectBlend with Lavender really helped her. That's what you should go with.

Really, because I was going to say the Patient Portal...

Oh no! Trust me this will work like a charm. It's kinda pricey, but my other friend swears by it. Totally worth the cost. You'll see.

Well, I think I'll stick with the Patient Portal, but thanks for you suggestion.

Fine. But when you're in pain next time, I'm not gonna promise I won't say, "Told ya so."

*sigh* Patient Portal, Burt.

Is that your final answer, Imma?

Final answer, Burt.

You were so close, Imma. You don't want to take up any more of the doctor's precious time when there are others who are needier than you. You should just ignore it and hope for the best, and maybe get some of those essential oils your friend talked about since your symptoms are just in your head.

Oh. Well, I thought Patient Portals were there to...

Well you thought wrong, Imma! It's time for your final question.
You're at work. You have just three more hours to go and it's important you be there until the end. You've been dealing with intense migraines for the last few days. You've already taken three triptans this week-including one this morning- so you could finish this week's project. Your vertigo has been getting worse and now, you've started the aura phase. You know the pain is coming and you can't get more triptans for two days. What do you do? Time starts now.

Well, Burt. I guess I notify my office manager that I have to go. Get materials together so my staff can fill in. Get a plan together for the next day just in case. Then get home and get to bed with all the self-care therapies I can before the pain starts.

Is that your plan?

That's my plan.

Well, let's poll the audience. Audience, please use the keypads in front of you to tell Imma your thoughts about her plan.

*cue dramatic and suspenseful music*

OK, it looks like all the answers have been tallied. Here's what the audience of strangers who know nothing about your condition outside of Excedrin commercials said you should do:

Go ask a co-worker for some Tylenol or Ibuprofen and take those. Then drink some water. Take some deep breaths and just push through to the end of the day. Maybe go outside for some fresh air and sunshine. Exercise will be good for you. If you leave, you're going to make it harder for everyone else on the staff who have to cover for you. You've likely already left work early before, so you owe them to stay. If you leave, you're just being selfish.

Well there you have it, Imma. Your plan thinks only about your health and well-being and no one else. You should stay and not let anyone else know how much pain you're really in. It's just a bad headache. Everyone's had those. I'm sorry, Imma, but looks like you didn't win the grand prize. Let's see what you lost.

The respect and support of your colleagues, your paid sick leave, and your well-meaning friend. I'm so sorry, Imma. How're feeling?

Fine. I'm fine.

That's right. We all knew you were fine and just faking it. *playful punch to the chin* Keep that chin up and good luck with that disability claim. I'm sure they'll believe you.


   

Weary

My calendar is full. Acupuncture, neurologist, massage therapist, nutritionist, rheumatologist, and everyday life. 

A lunch, a training, a meeting, a haircut. 

What didn't get done yesterday, must get done today.

Or tomorrow.

My calendar is full.

My cabinet is packed. Prescriptions, supplements, herbals, and topicals. They overflow the shelf and the organizer. I play Tetris until they fit. My clumsy hands drop them. It used to just be two. Their numbers are many now.

So many tiny,

So many large.

Compressed pills, capsules that stick in my throat requiring a pint of water to wash down. 

Not a fix; not a cure. 

Reminders of what I've lost; what I am now. 

My cabinet is packed.

My list is long of what I need to do, when it needs doing, and where I need to go.

 An appointment, prescription, groceries. Maybe it's a gift for someone else.

Can I do this efficiently? What's the best path? Mapping it means doing it quickly.

Done with it. 

Oh fuck I am tired. 

Put it off to another day. Prioritize. Isolate the vital. Tick them off until I can rest.

My list is long.

My mind is forgetful. An accumulation of supposed to's.

Couldn't do it all yesterday. One got discarded. An important one. 

Write it down. Reminder notice in my phone.

What was I going to write down?  

It'll come back to me. If it's important enough. That's what they say. 

Why can't I remember?

My mind is forgetful.

My body needs food. What's in the fridge? Salsa, cheese, carrots. 

Man I just want a doughnut. Sugar and wheat and bad fats. 

Carbs. 

Nitrites.

FODMAPS.  

Grab something and go sit down. 

Something easy. 

Easy to prepare. Easy to clean up. 

But I feel nauseous. Ginger tea then. Let my stomach settle. 

My body needs food.

I schedule, organize, rank, evaluate, manage.

And I am so weary.

Weary of it all.

Accused rev.

On the night of December 31 you were observed drinking red wine. Do you recall that evening? Yes.

Do you admit to drinking wine that night?

Yes.

Was it red wine?

Yes.

Are you aware wine, especially red wine with its tannins,  is a trigger for migraines? 

For some, yes. I also know triggers for aren't the same for everyone. Sometimes I get away with it. Some labels don't trigger my pain.Whatever the case, I drank the wine.

Do you recall the afternoon of the 9th of this month?

Yes.

Where were you that day?

At home and then I went to coffee with a friend.

Did you check the weather report that day?

Yes.

What was the weather report on the afternoon of the 9th of this month?

It was 53 degrees until about mid afternoon. Then it was supposed to drop to 2 degrees.

Do you usually keep gloves in your purse?

Yes.

Why is that?

The cold makes my hands ache.

Is it painful?

Yes. Very painful.

Then why didn't you have gloves in your purse on the 9th of this month?

I didn't take my purse. I thought I had some in my coat.

Did you? Have some in your coat?

No. 

But you just said that you knew the weather report would be close to zero degrees and that the cold causes you a lot of pain. Why didn't you have your gloves?

I had taken them out of my pockets the last time I wore them. I threw them in my other bag and never put them back in my coat.

So you were negligent in managing your health?

No. I'm human.  I'm sure you've forgotten something in your life, too.  Maybe earplugs for a concert, or sunscreen at the lake. I turned on my car's seat warmer and took turns sitting my hands to keep them warm. I managed just fine.

Earlier this year you went to dinner with family.

Yes.

This was a place you and your family frequent, right?

Yes. I've been going there since I was a kid.

Did you know which items on the menu contain gluten?

I figured most of the menu.

The chips. Did you know the chips and salsa you snacked on before your meal contained gluten?

No. I figured they were just corn. Carb heavy and mostly indigestible, but no. I didn't know about the wheat.

But you avoid gluten because of a sensitivity. At least, that's what you've professed.

True. It's more complicated than that though.

Oh? How's it complicated? You either avoid gluten or you don't.

I do! I should. Wheat, especially refined wheat, can aggravate just about everything in a body like mine. Even whole grains.

So you have Celiac's?

No.

Then there's no need for you to avoid gluten.

Gluten means wheat. Wheat means carbs. The more grain carbs taken in, the more inflammation. But one night of food that I've eaten and enjoyed my whole life is worth it. After micro managing my diet all the time, a little break is worth it! It's worth it.

Even if you know you are risking pain or at least discomfort?

Even if.

You have been found guilty by a jury of your friends, family, and strangers. You are sentenced to harsh judgments and shaming. Have you anything to say for yourself?

Yes. I have chronic illnesses. I have researched and tried just about everything you think you know about my condition.  My choices are informed. For "good," for "bad,"- however you judge my choices- I own those choices. None of this is my fault. It's exhausting trying to do all the things "right". I follow what my doctors tell me. I do the best I know how.

My defense is this: I am steward of this body. I know it better than you.