Distraction

In an earlier post I laid out my top 5 ways to cope with pain without medication. The most important one, in my opinion, is distraction.
Distraction is at the root of every coping mechanism - including medication.
We distract our minds by staying busy, by focusing on other things, by using medication to numb the senses or mask the pain, we distract our cells from attacking one specific area by giving them something else to attack or by increasing adrenaline to invoke the fight or flight response. We can distract ourselves from pain in various ways - thank goodness.

Today was a tough one, primarily due to wind and pressure changes. Not only have I been feeling pretty awful lately, plus likely developing the cold that my husband has, but my chronic migraines hit me HARD today.
The moment I woke up, I knew it was going to be a trying day. 
Of course, I attempted every one of my coping strategies, along with appropriate medication, but it just did not seem to make much of a difference. I got some fresh air, I tried to do a little bit of stretching (but failed miserably), I slept the day away, I had all of the lights off and stayed off of my phone as much as I could.
By early evening, nothing had really changed. I was still vomiting, I had no real appetite, and I felt (and looked) like the walking dead.

So what did I have to lose?

I needed to eat and I desperately needed a distraction.

So, unsure if it would work or worsen my symptoms, Rj and I decided to play a board game and have some snacks. I cut up some apple pieces and made myself a mini cheese board. I had goat cheese, wheat thins, sour cherry spread, and fresh apples. Something I could keep snacking on without feeling like I was just eating junk (we often have chocolates or junk food while we play games together). While it's not perfect, it was a healthier meal overall and it kept my mind fully occupied on both the game and the food.
Simple tasks, like having to spread cheese onto a cracker and trying to get the perfect proportions is enough to give a nice distraction. Add in Risk with invasions and armies and trying to beat the Lannisters for once, and then Boggle - searching for as many words as possible within 3 minutes - and you have decently effective coping strategies. 

Board games like Risk followed by Super Boggle were enough to help me get through the evening. The pain did not subside, of course, and I still felt nauseated, but all of this helped me ignore it enough so that the night was enjoyable instead of just being painful.

We then ended the evening with puppy cuddles.
A bad health day does not mean that the entire day is bad. It can be difficult and can even induce crying just from pain throughout the day, but I would still count this as a good day.
Fancy that.

Beginning a New Direction

Starting a new endeavor (one that will be made available and be made public within the coming weeks) has me so motivated and so challenged that I am putting nearly all of my focus onto it.
I keep wanting to go and buy or order more supplies.
I keep wanting to learn new things.
I keep having dreams about the projects I am already working on.
I continue to find new sources of inspiration.

Most of all - I have narrowed down a list of items and supplies and tutorials and a direction in which I want to follow.

That direction includes calligraphy markers, inks, brushes, watercolors, canvas, books on lettering, books on doodling, workbooks, sketchbooks, rice paper, quills, inks, worktables, easels, and an area to get messy!! (I already have several aprons because of how much I like to cook and bake, so I have that ready).
These new projects have me so excited and enjoying so many new things that I can barely contain myself.

Except I have to.
I have to have some level of self-preservation because, whether I like it or not, my health interrupts everything. I can't just go to an art store any day of the week, pick up materials, and then practice all night long.
Even tonight, with a building migraine, as much as I want to focus on new projects, I need to lie down and relax.
So with dreams of new markers and brushes and watercolors, I will lie here and watch Hocus Pocus instead.

New exciting things coming soon!
I cannot wait to show you!

Better Days

Yesterday was not exactly a great day.
Finding out some difficult information is tough at the best of times, but I was also fighting a migraine all day.
I kept trying to ward it off with little bits of medication, by avoiding too much light, too much reading, and too much noise.
Once we got home, it just got worse (probably from crying).
I had a bit of a nap, I curled up in a blanket fort, and tried to sleep it off.
I woke up - worse.
With Rj leaving town for the evening and me wanting to hand out candy to the kiddos, I couldn't decide if I could handle it better with a migraine or taking a medication that wipes out the migraine... and my energy.
Well - I went with the latter option after a big meal. My migraine subsided within about 45 minutes AND I didn't unintentionally fall asleep!!
So I got to see all the little ones in cute little costumes and give out handfuls of candy without dreading every "Trick or Treat", doorbell, or barking from our pupper.

Then I woke up today (after having a few stomach issues overnight) feeling actually pretty decent!!
Despite needing Depends, from intestinal swelling or inflammation or a stomach migraine - I'm not sure which, I slept like a rock and I woke up with energy.
I was able to get up, get dressed, have a small bite to eat, then actually do some yoga and stretching!

Furthermore, I woke up with my eyes being extra bright blue. Often when I feel especially ill, my eyes lose a bit of their colour and they can look very grey. Waking up with bright blue eyes is always a good sign that it's gonna be a good day.

Of course, a little bit of yoga takes me out of commission for a lot of the day, but I get to catch up on This is Us, Grey's Anatomy, and my Chicago shows.
It's a good day.
And even though good days still include severe amounts of pain and difficult moments a hundred times throughout the day, it's still a nice day.

I am always thankful for good days.

Worst Migraine in Years

About 10 years ago, give or take a couple years, I was diagnosed with Chronic Migraines by a Neurologist.
I lived in a perpetually windy town and suffered brutal migraines a couple times a week. I would wake up and picture a bolt or a screw was just sitting inside my temple. I would imagine taking a nail gun to my head to try and stop the pain. The pain would often lead to vomiting. BUT, regular Tylenol would always take the edge off well enough to function. Or it would subside within a few hours. Eventually I was prescribed a medication specifically for migraines and that worked wonders.

Then I moved.
The migraines didn't cease, but there were fewer. I would say that, since moving 8 years ago, I have suffered minor to moderately severe migraines a few times a month overall, well-controlled with modest medication and I even let my migraine medication prescriptions expire. Why take them if I didn't need them?

This year, though, things have been a bit different. In early Spring, as the seasons were changing, I had intense migraines every single day for about two months. After that many, I went to my doctor for the same migraine medication I used to take, and she obliged. After a couple more weeks, the migraines settled back to a few times a month.
Until today.

Today was the worst migraine I have had in YEARS. Ever see that meme about rating your headache from 0 to Oberyn Martell? Yeah. Mine was a 9.
Not necessarily because it felt like my skull was being crushed, but more that I was WISHING to crush my skull to kill the source of the pain. I pictured power drills and nail guns and hacksaws. I was sweating and unable to sit still and puking and having horrible stomach cramping along with it. I was shuddering with tears. I had to ask Rj to call and reschedule an appointment for me, and I tried hitting that migraine with every medication I could safely try. We were just about to get ready to go to Emergency when medication started to work.
It took 4 hours to settle down completely.

4 hours may seem short... but every single second was excruciating. Every 10 minutes felt like an hour. I could not function. I could barely even breathe.
I was trying all sorts of different things to take my mind off of the pain.
• I put peppermint oil on my temple
• I put boiling hot water on a cloth and held that to my temple and to the side of my face
• I hit my head with my hands
• I tapped and drummed my fingers on several spots on my head
• I rocked and changed positions and put my head in between my knees
• I used my hands like a vice to put pressure on my head and then release
• I put an eye mask on
• I had all of the lights off
• I even put ear plugs in for a while

I asked some friends for advice (or rather, Rj asked some of my friends for advice), but it just made me realize how uncontrollable migraines can be. Just like so many chronic illnesses. Suggestions included crisis acupuncture... calling Health Link... or going to the ER and being sedated. Knocked the eff out.

That last one was tempting.

Frankly, if my migraine medication did not work, I was headed in to the hospital anyways. If migraine meds don't work, there's a chance it's not a migraine... and with that level of pain it would have been a sure sign that something might be really wrong.

But luckily, the medication worked, and I will be hanging out in bed, in the dark, for the rest of the day. I am lucky to have the prescription that I have and that it works, and I am even more lucky to have RJ. He has never seen me like that and he was right there willing to help - to make phone calls and to shut the blinds and let my cry and even scream in pain.

"Obviously Not That Serious"

When it comes to medications, I am often caught between a rock and a hard place.

The biggest complication is that I have several allergies to medications. Those allergies, to make things even more complicated, are not considered common allergies. For instance, the percentage of patients who have experienced severe Pancreatitis caused from specific medications is less than 5%. That can also be said for the major stomach bleed I experienced from another medication, and the swelling from biologics.

Here is where it gets even more confusing.
In my chart it shows that I am allergic to several biologics. I have endured severe swelling, directly caused by the injections of:
Remicade
Enbrel
Humira
Simponi

BUT - is this a full-scale allergy, or are TNF blockers simply exacerbating my HAE?? Is the mechanism of these biologic medications simply activating my Hereditary Angioedema to the point where I experience these severe swells.
So it might not be an "allergy", but rather an "intolerance".
It's all confusing.
But the symptoms themselves are the same - I still experience edema in my throat, chest, extremities, which can impede my breathing. So no matter what the proper term is, the reaction is the same.

The treatment, however, is hard to decipher. If it is HAE related, then the blood-product, through an IV vs a sub-cutaneous injection, would do the trick - which it did 2 months ago. If it is only an allergy, then a high dose of Prednisone would help.

Now here is where things get impossible.

My HAE reacts to my emotions. It is very sensitive to my emotional responses.
So - even if the swelling in my throat and chest is caused from an allergy, KNOWING that my throat and chest are tightening/swelling is very stressful... so even if it IS an allergy that starts it off, having my ability to breathe hindered is going to freak me out and thus trigger an HAE episode which will further swell my throat and chest.

So how the hell will we ever know for sure?!?

All I know is that last month, I tried to just relax at home and ignore the slight tickle and tightness and focus on my sub-cutaneous C1-INH injections twice a week to keep the swelling down, instead of rushing to the Emergency Department and freak myself out even more.
But because I did that - because I STAYED HOME - I also heard this sentence from my doctor: "well, if you stayed home then it obviously wasn't that serious."

In a way, my doctor is right. My throat and chest did not close much or very quickly, because I only had a tickle and feeling of tightness, with no significant decrease in my ability to breathe.
But I still had swelling in my throat and chest. I still had symptoms including the tightness, tickle, a voice change, and anxiety from knowing that it could turn badly at any moment.

A throat swell is a throat swell.

I don't know if this made any sense... everything is always so confusing... no wonder my head hurts.