A New Mantra: Eggs and Bacon

Well, I just recently experienced my first injection of Botox for migraines. 

I have had Botox injected only one other time before (in some internal pelvic muscles), which was a horrendously painful experience, so I was quite nervous for this appointment. 

Although I was assured that the procedure was quick and painless, I opted for my husband to accompany me. If it did not go well, if I did not feel up to driving, I wanted to be prepared. I had no real reason to be as nervous as I felt... My doctor has been a brilliant addition to my medical team, I have had the medication before, so an allergic reaction was unlikely, and I felt that if millions of people around the world got Botox injected into their faces on a regular basis then I can surely handle it for beneficial medical purposes.  

This treatment was recommended because of the frequency of my migraines coupled with the fact that I have been reacting to my prophylactic medication (Amitriptyline). Plus, a once-a-quarter treatment vs yet another pill might be nice, right? 

Now, my doctor is a wonderful man who is dedicated to his patients and also has a great sense of humour. As he was setting up for these injections, I had no clue what to expect. In my mind I was imagining two or three syringes, injected into my lower neck and perhaps my temples. 

No. 

He sets out the tray with various needles, some pliers, and 200 units of Botox being drawn. On his desk is a Styrofoam head covered in colorful pins to show where the Botox can be injected. Many, of course, were cosmetic locations, but there were several pins associated with preventing migraines and even helping to prevent teeth grinding. 

This is when I begin to become stressed. So many needles. So many pins. Pliers sitting there, for who knows what purpose, and the promise of a much longer process than I had imagined. 

Suddenly, my husband utters: "Eggs and Bacon".

I was in such a daze, I thought he was attempting to comfort me, but was slightly confused. 

K: "What?" 

Rj: "His Socks." 

My doctor also has a habit of wearing funny socks. His socks for this appointment featured a smiley face - two eggs and an upward-curved slice of bacon. 

We all began to laugh, and now 'Eggs and Bacon' is my new mantra that I repeat for calming myself down, simply for its ridiculousness and lack of meaning. That comment did get me out of my daze, though, so it absolutely worked. 

The procedure was very interesting. 

Now, in my entire complicated life of difficult health, I have never agreed to liken a pain to 'pinching'. Medical professionals say it regularly - 'you'll feel a slight pinch' - and yet that has not been how I wind up describing pain. This, however, was more like a pinch than any other pain so far. It is more of a simple pin-prick, followed (sometimes) by a feeling of fluid rushing underneath the skin. 

What got me feeling slightly woozy was when I heard - and felt - a slight cracking/crunching sound as the medication entered. It was explained that these spots were particularly tight, and the fluid expanding those spots caused the sound of Snap, Crackle, and Pop in my skin. In the back of my head, in my temples, and in my jaw. 

He put all of the medication into the muscles in my forehead, my temples, in between my eyebrows, in the back of my head and neck, in my traps, and in my jaw. 

It wasn't entirely painless, but there were only a few spots where I experienced lingering pain. 

It is still too soon to know whether or not it will work, but I will update. 

Oh, and the pliers were used to open the vial of medication and nothing else. 

I think he has a morbid enjoyment for scaring me, which I find amusing. It works! He also described another treatment for acute migraines that do not respond to 'tryptans, which includes sliding a catheter up the nose and coating the basal ganglia in a nerve blocker, numbing agent, or Botox to help the patient. This both disgusted and intrigued me - though I have no wish or plan to ever require such a treatment. 

The Lighter Side of: Migraines

Migraines are one of the worst and most all-encompassing episodes I have ever dealt with. If you catch them early enough, you can avoid the severe light-sensitivity, sound-sensitivity, stomach pain, vomiting, and persistent brain-crushing pain.
That is only if you have techniques to help ward off a full-blown episodes.

Although I deal with migraines fairly frequently, I am lucky -> I have responded well to a medication. When I take the dissolvable tablets, my migraine dulls to a simple throbbing within half an hour. When every second is excruciating, half an hour can feel like a lifetime.

The Lighter Side of Migraines is that the medication I take for them also helps me sleep.
Lately I have been dealing with some pretty significant insomnia, which is one of the biggest triggers for migraines. The less sleep I experience, the more frequent the migraines become.
It is vital for me to get a decent amount of proper sleep, which is really tough when you deal with painful conditions that make it difficult to find comfort, sleep disorders like sleep apnea and bouts of insomnia, and medication that can cause restless sleeping episodes.
Lucky for me, though, my migraine medication will almost always trigger a more restful sleep.

So I sit here, feeling my migraine become just a little bit worse by the minute, sitting in the dark, removing the squeaky toys away from my puppies, hoping to hang on long enough so that I can take my migraine medication right before bed.
Maybe I can get some good sleep and avoid another migraine tomorrow!

The Lighter Side of: Migraines

Migraines are one of those symptoms where if you do not know whether or not you have had one, then you have not had one. You know if you have had a migraine.
I have experienced more than my fair share of illness and pain over the years, but migraines *usually* take the cake when it comes to putting me out of commission.
I am one of the lucky ones, though. There is a medication that I take for them that is incredibly effective, kicks in fully within 30 minutes, and has very few side effects. I also do not have to worry about taking it during the day because, when I have a migraine, I have already written the day off. This medication makes me super drowsy and I often sleep for a few hours after taking it.

Did you know that there is such a thing as a stomach migraine?
While this is more prevalent in children who will later develop migraines, they can happen in adults.
Due to my Crohn's Disease, I will never truly know whether some of my episodes have been stomach migraines, but I remain convinced that I do experience them every so often.
Why??
Because sometimes, when I have a migraine and my intestines and upper abdomen are also excruciatingly painful, with excessive nausea, and some vomiting, if I take my migraine medication, it takes care of both affected areas.
Medication that is tailored for migraine headaches should not work on abdominal pain unless it is migraine-related.
Though it is possible that simply the pain and nausea is my Crohn's reacting to the severe pain in my head.
I may never know for sure. It also doesn't really matter, as stomach migraines are not exactly dangerous. If something works to ease those symptoms then it doesn't really matter to me exactly what they are.

The Lighter Side of migraines is that even when they become all-encompassing, there are options for relief. There are many was to battle migraines and I have been fortunate enough to experience effective relievers. There are medications, there are Botox treatments, acupuncture treatments, tea, supplements, and even physical activities that can help ease the pain of migraines.
The Mayo Clinic, WebMD, and HealthLine all have some great tips on how to treat and prevent migraines in natural ways as well as types of medications that may help.
**The best course of action if you are suffering from migraines on a regular basis is to consult with your physician.**
As with all symptoms, even common symptoms can be something unexpected, so speak with your physician if you have had an uptick in migraine headaches, and pay attention to accompanying symptoms. Even if you have been diagnosed with chronic migraines or recurring migraines, discuss any changes in your experience.

Perceiving Someone Else's Pain

Today I want to speak about pain.

The reason we have various types of pain scales and descriptions for pain is because of the ultimate subjectivity of pain. Pain is relative to one's own individual experience.
If someone has never had a headache before and, after 20 years, has his/her first headache ever, it may seem to feel like an 8/10 pain.
If you take another person with the same level of headache who has dealt with severe migraines for 20 years, this headache would be described as a 2/10.

Pain

Most people have experienced varying levels of pain. Blood test needles, vaccination injections, a headache, a toothache, a stomach ache from a flu, food poisoning, choking on water swallowed too quickly, a sprained wrist or ankle, a pulled or cramped muscle, menstrual cramps.
We know what pain is like. At least we know what certain types of pain are like.

There are certain types of pain that can be ignored. We can distract ourselves entirely from the pain and forget about it. A slight headache can be ignored. Pain from an injection subsides and goes away. These pains we know are temporary, and just knowing that they go away can also help us ignore them.

I have - unfortunately - spent quite a bit of time in waiting rooms, in doctor's offices, in emergency rooms and urgent care clinics.
Although I am not as exposed as people who actually work in the medical field, I do tend to see what people look like and seem like when they are in pain.
Guess what?
Each person looks completely different - even if they are experiencing the exact same type of pain.

This is such a common theme in so many posts about chronic illness, you would think people would understand by now. Every single person is different.

So here is a personal pet peeve of mine:
I hear - in all of these waiting rooms and when speaking with others about pain and symptoms - "if you were  ________, then you couldn't have been in that much pain."
Some variations include:

• if you weren't bursting into tears you couldn't have been in that much pain.
• if you were making jokes, you couldn't have been in that much pain.
• if you were still at work, you couldn't have been in that much pain.
• if you did not feel at all suicidal, you couldn't have been in that much pain.
• if you remained conscious, you couldn't have been in that much pain.
• if you were not delirious, you couldn't have been in that much pain.
• if you weren't demanding medication, you couldn't have been in that much pain.

Here is the problem - we all react to absolutely everything just a little bit differently.

On my absolute worst days - in an ambulance, completely terrified, in excruciating pain to the point where I kept telling my husband that I wanted to be knocked unconscious until I had pain relief. I cannot even explain the magnitude of that statement coming from me because you don't really know me or what I have already experienced. However, even in this scenario, I was still making stupid jokes all the way to the hospital. I was laughing in between bursts of tears and silent moans.

I have witnessed people on the verge of their appendix bursting, walking around, taking selfies at the hospital, joking around with their friends, and fixing their hair and makeup. The surgeon is standing there trying to hurry her onto the gurney to get her up to surgery before it bursts, and she is deciding which stuffed animal to carry with her. Laughing, smiling, looking more comfortable than I was, and I wasn't even there for myself!

Have you ever seen the terminal ward in a pediatric hospital?
It sounds quite depressing, but it is actually more uplifting and inspiring than expected. I specifically remember this one girl. She had weeks left. Weeks. She did not want heavy pain medication because it affected her mental state - and she wanted to have fun. There is no denying that she was in pain, more pain than I can likely imagine.
What was she doing? She was racing with her friends. She would take a running start with her IV pole, jump on it, and let it roll as far as it could go. Every time she would fly off of that IV pole and her IV would rip out of her hand. The nurse would go running after her to put her IV line back in.

There is this idea, this misconception, that you have to show all pain in some physical form. It has to be seen on your face or on the outside of your body to be considered 'real'. But look at some of those people who are in life-threatening pain, having fun. Some people just do not show their pain to others.
Just like grief - sometimes it is simply not visible. That NEVER means that the person is not suffering in a severely physical sense, it just means that they are more reserved.

There are many reasons why people do not follow the above 'criteria' of showing their pain. We need to stop comparing physical appearance with pain levels.

Can't Sleep? Doodle

About 12 hours ago (around 4 in the afternoon), a migraine hit. Not bad enough to warrant a full pill to help the migraine dissolve, but still required medication.
Kinda felt like my brain was swelling and pushing on my skull from the inside.
Fun times.
So, as usual, within an hour of taking the halved medication, I was out. OUT. I wound up sleeping until about quarter to ten.

Whoops.

I knew that meant I would have a hell of a time sleeping overnight.
I tried! I really did. I was lying down, practicing deep breathing and some meditation exercises, I put away all thoughts of plans and schedules and to-do lists, and I tried to sleep.
No luck.
So I thought I would maybe colour on the app that I have - staring at mandalas and focusing on calming colours.
I felt sleepy enough to want to stay in bed, but too awake to actually fall asleep.

In the end though I just got up, put some sweats on, and decide to practice doodling.
I have been working on trying to draw and paint flowers. Little tiny flowers, everywhere. I have been saving tutorials and videos from Instagram, along with close-up pictures of doodled flowers that other people have done.
Then I tried to copy those. Getting tips on pencil strokes from the videos and dissecting each little doodle as close-up as I could.

The result?
Not too bad! I am actually pretty thrilled with the progress. Who knew I could learn how to draw?? (I mean, it's nothing special, but I have a difficult time drawing a cube. Or a square. Or the most basic cartoonish doodle).

The next step is to learn how to get some of these drawings into watercolor pieces to keep in a gorgeous little rice paper notebook. Little tiny flowers with simple watercolor drops. Pops of colour.

I may be having a tough time sleeping. My muscles might be super tight and my joints might be inflamed. My migraine might be returning and my eyes might even be starting to burn... but that doesn't mean that I can't try and do something relatively productive for a little while.

Okay, back to bed.
Feeling accomplished.
That's a win in my books.

Waking Up Nauseated

Nausea is a fairly prominent part of my every day life.
With the help of various foods, a couple of heavy-hitter anti-nauseates, and a general reduction in my overall activity over the course of several years, it has been quite a bit better.
Vomiting after taking a shower became a rare occurrence (not because I don't become nauseated in the shower anymore, but that I rarely take a shower - I stick to bubble baths). A tweak in my thyroid medication cleared up some debilitating motion sickness - like vomiting from curling my hair, standing up too quickly, or getting dressed.

Unfortunately, it is still there, often barely under the surface, waiting to strike.

I am currently in a bout of some severe migraines. Just like back in May, I am experiencing soul-crushing migraines nearly every single day. The Pain Therapy department assures me it should have nothing to do with the cortisone injections (since they do not enter my bloodstream for these procedures), and I doubt it is solely weather-related, but to be quite frank: I have no clue why this happens.
These migraines have been exacerbating my nausea... and there is only so much cinnamon I can add to my diet.

As always, for whatever reason, French Toast has become a bit of a cure-all dish. Okay, 'cure' is the wrong word. French Toast is easy on my intestines, essentially a soft food, contains protein and gives me energy with the egg content, and then I add a generous dose of cinnamon to help settle the nausea. Comforting, calming, and easy on my IBD.

So... once my hubby wakes up, I plan on making French Toast to help combat this brutal nausea I woke up with an hour ago.

Simple recipe:

2 slices of Rye Bread
2 eggs
1/4 cup of milk
Cinnamon
Icing sugar (optional)
Can serve alone or with fresh fruit. Or stewed apples/pears to make it IBD-friendlier.

Crack the eggs into a mixing bowl, whip them with a fork for a minute or two. Add a bit of milk (any kind will do - add coconut milk especially if you are using tropical fruits). Mix together. Dip each slice of bread into the egg mixture, coating each side of bread until it soaks right in. Place in frying pan on medium-high heat. Watch closely. Flip when one side begins to brown. When they are finished, serve and add cinnamon, fruit, icing sugar, and whatever other garnishes you like.

Today I may even try to roast figs and have that with mine.

Hopefully it will help dispel this nausea. And if it doesn't, then I will have had an incredibly comforting and delicious meal. Which will be followed by more time in bed and a day dedicated to resting.

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!

Another Headache

So I didn't have a headache today. I had migraines Monday, a little bit on Tuesday, and another bad one last night.

Today, however, I was migraine free!!

But then I started cuddling and playing with Dex... and the adorable pupper inadvertently headbutted me. Hard.
His head hit the bridge of my nose like in a boxing match.
I instantly had tears running down my face, my entire face is throbbing, and I am hoping I don't get any black eyes from it.
It also caused a bad headache.
Not my usual migraine, of course, which I am thankful for... but MAN.

Rj of course could not stop laughing - as he made sure I was okay. Poor Dex has not come near me since, even though it's not his fault.

So my one day without a headache?
Headbutted.
In the face.
Yyyyyyyyyooouch

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.

After the Crash

Yesterday seemed to be the biggest 'crash' day.
Felt like acid was devouring all of my innards and spreading through my veins to my organs and extremities, causing pain, nausea, a burning sensation, excessive fatigue, and headaches. Everything bothered my body. I became overwhelmingly tired.
So, as we were watching tv in bed, I removed any irritation, put an eye mask on to block out the light, ear plugs in to block out sound, and just allowed my body the feverish 'sick sleep' that it needed.
Even though every day this week has been poor overall, yesterday was the worst of it.
Today I mostly just feel weak.
Getting dressed had me so out of breath I had to sit down, and the pain in my hips is excruciating today.
So what do I do after the crash??
Luckily, it's NFL Sunday. We got a little fresh air for a bit, but now I am running an indulgent bubble bath, I am watching my Seahawks, I am diffusing oils, and going to do a nice and relaxing face mask.
It is ALL about relaxation.
Really, I can't do much else, so why not enjoy doing 'nothing'.
After the game I plan to catch up on some reading.

I may not feel great, but I will do whatever I can to help myself relax.

Rollercoaster

The rollercoaster ride of health issues is not the kind I usually like to ride.

Yesterday was a good news - bad news - good news - bad news kind of a day. Up and down constantly.

I was nervous about an appointment because I am already on a lot of medication, but my migraines have been exceptionally bad, so I needed to ask for a specific migraine medication I was on temporarily a few years ago. I was living in a constant windy city and my migraines were intense.
I have had a severe migraine every SINGLE day for over a month now. Much more than that and I might lost my mind. Luckily, it's not a big or dangerous medication, it directly (and effectively) targets only migraines, and has few to no side effects normally.

So I received my prescription and became SUPER excited. I couldn't WAIT to fill it and take it and get to skip a migraine yesterday!!

But then I got to the pharmacy.
Turns out they don't have any in stock anyways, so they would have to order some.
Then, even though her prescription said a certain amount per month, I guess insurance will only allow <1/2 to be dispensed per month.
But then they said insurance won't even cover the brand name and would cost ~$200... so then I agreed to try the generic name if insurance covers it.
So I still suffered through the migraine yesterday - hopeful that today I could skip it!

Now we are just trying to decipher why my migraines have been so much more frequent again.
• It could simply be weather. It has been very all-over-the-place lately.
• I have been wearing my glasses almost nonstop lately - perhaps my prescription isn't quite right anymore? I will book an appt to see my optometrist.
• I am also experiencing more intense pain in my upper spine and neck, and moving my neck side to side sends shooting pains down my spine and shoulder blades. I may have pushed too hard, it might be that simple. I am also concerned that the Ankylosing Spondylitis has progressed in that area just like the inflammation and erosion in my SI joints. So many I will ask my rheumatologist for updated scans? I am due for them anyways.
• Maybe I just need a simple adjustment. It could be beneficial for me to go into the chiro or massage therapist (or both!). Or a physio appointment.
• It could be HAE swelling affected my skull/brain... but I doubt that one.
• I HAVE been grinding my teeth almost every night again as well. That would definitely add to it.

This afternoon I *should* be able to pick up my prescription though and maybe get some RELIEF for my pounding throbbing drilling pain.
Maybe I could do some reading tonight then!! Ooh!!