Compounded Medications

Finding ways to improve symptoms is tricky.
With medications, you have side effects, unwanted symptoms, reactions, and sometimes there are some additives that are unnecessary and can cause problems (like flavouring agents).
With herbal remedies, you have unknown or undocumented side effects, so it is harder to prepare. The research is lacking, and you have to really know how the ingredients react with your body in order to be confident using these remedies.

I am on a particular medication to help with my migraines prophylactically, which also helps me sleep.
My insomnia has been insanely frustrating. I find myself feeling absolutely desperate to fall asleep. When I do finally fall asleep, I sleep quite well (other than waking up in a sweat or needing to go to the washroom, but I tend to get back to sleep fairly easily). That presents an odd problem though - the longer it takes me to fall asleep, the more of the next day is wasted sleeping in.
Essentially, it is crucial for me to fall asleep within a certain time or the whole next day is wasted.

The medication seems to help really nicely - except there is a flavouring agent in it to which I am allergic.
This presents two problems:
1. I can only use it one or two days a week because I get hives on my face and chest.
2. I cannot use it enough to really tell how well it works. A prophylactic medication needs to be taken regularly, and to help me sleep it should be taken regularly too.

So I have been either sacrificing my sleep or my skin.
Neither of which is currently working.
I spent four hours trying everything I could think of to fall asleep (I listened to a meditation, I put on my oil diffuser, listened to soft music, put a facemask and put in ear plugs, warm milk, and even medication that I don't like taking very often). I finally relented... I took this prophylactic medication for the third day in a row and put on my Scary Story podcast to listen to some short stories until I was finally falling asleep.

Sleeping in far too late in the day and feeling entirely fatigued from difficulty sleeping, my first phone call was to a compounding pharmacy.
I wound up transferring this one medication to this new pharmacy so that they can take the base powder of the medication and put it into a capsule - without the flavouring agent.
Of course, there is an out-of-pocket cost, but if the medication works and no longer gives me hives, then it is 100% worth it.

Something to think about.
If you are having an issue with a medication, it may not be the actual medication itself. It may just be an added flavour-compound or something else that could be removed without changing the integrity of the medication itself.

The Lighter Side of: Nausea (Part 3)

I do not drink pop very often.
Basically the only time I drink pop is when paired with an alcoholic beverage or when I am particularly nauseated.

When I do become that ill, I always ALWAYS go for Fanta if it is available.
I don't know if it is just the carbonation, the orange flavour, or that I simply really love Fanta, but it always cuts the nausea at least a little bit, if not entirely.
I have never really been a fan of ginger ale and other standard soft drinks just feel icky.

On top of it all, we don't usually keep pop in the house. Other than the abundance of pop downstairs still hanging out from our wedding, we rarely purchase pop to keep at home. We'll indulge once-in-a-while, just like everyone else, but if I am really craving a soda drink (for non-nausea purposes), I'll go for a fruity flavoured carbonated water.

The Lighter Side of Nausea is that it gives me the excuse to buy a case of Fanta and enjoy some! It doubles as an enjoyable drink and a symptom reliever.
Without the nausea I doubt we would ever indulge in actually purchasing pop to keep at home. It's kinda nice to have around. I won't usually drink a full can by myself, but if I get super nauseated in the middle of the night, it is definitely helpful to take a few gulps to get rid of that nausea.

**As a little side update for anyone following following along. I must have gotten a cold - when I was sleeping like crazy for several days. Ended up with a runny nose and very headachy. Obviously not my annual case of Mono. Hooray!

The Lighter Side of: Being Too Tired

Okay, sure, the vast majority of the time, being so tired that you are ready to fall asleep at any moment of the day can be pretty inconvenient.
Then, when it is combined with nightly bouts of insomnia, it can be infuriating.
You spend alllllllll day fighting to stay awake so that you can *hopefully* have a decent night's sleep, but when it is finally bedtime, you spend the evening staring at the ceiling.

So what should you do?
Do you give in to a lovely little cat-nap in the afternoon and risk an even more frustrating night of insomnia? Do you keep pumping yourself with sugar or caffeine to stay awake during the day? Do you try and do something active to keep your focus?

The Lighter Side of being too tired to do anything is that every single spot in the house becomes undeniably comfortable. You can curl up in a chair, on the couch, on the bed, on the floor, even in the washroom. It doesn't matter how uncomfortable a spot may seem, when you are that tired, everywhere is a comfy spot to sleep. You lose your picky ways and, if you allow it, you can let slumber lull you into its arms for a wonderfully deep, unplanned, nap.
Naps can be glorious.

Scary Stories

I am not quite sure why, although I have a general theory, but I find that the more I watch, read, or listen to scary stories, the fewer nightmares I seem to experience.

For whatever reason, whether I just simply have a twisted mind, some latent aggression, or if it stems from long-term use of certain medications (*cough*Prednisone*cough*), I tend to have nightmares and even night terrors on a regular basis. I have lucid nightmares, I have sleep paralysis (which always occurs as a nightmarish experience) and have been known to have both auditory and visual hallucinations. 
Though when I have been watching horror films, they seem to stop. Or at least my nightmares are more normal - like spiders or bees or falling or something more run-of-the-mill.

My theory is that, unless my mind has something frightening on the external to focus on, up bubbles these demonic horrifying visions from within my own psyche. If I do not have an outlet, my mind comes up with its own versions of absolutely horrifying scenarios. Scenarios I have never heard of - scenarios I could not consciously think of.
Trust me - compared to what my inner mind seems to bring up, I will gladly take nightmares of being attacked by gigantic spiders or surrounded by angry bees or ravenous wolves. Those do not scare me. Much.

So, after a particularly soul-shattering nightmare last week, I began falling asleep while listening to a podcast: Scary Stories to Tell in the Dark. These stories have all been really cool to listen to, and oddly comforting.
They are stories.
I know they are stories.
My mind knows they are stories. So they become an external outlet. I have not had a nightmare since. Not even a regular one!
I hope it is effective in keeping my nightmares/night terrors away.
Otherwise I would have many more nights of being legitimately frightened to fall asleep.

How strange is that? I wonder sometimes if it is fairly common for people to feel in actual spiritual, even mortal, danger if they fall asleep.

Sleepless Nights

I have had some pretty intense insomnia lately.

Of course, like anyone, sometimes I stay up too late on purpose... I get caught up in a tv show, I browse social media, I stay up reading long past the point of becoming tired...but lately it has been all over the place.
I am too overheated, my pain is too high and I simply cannot get comfortable, I am thinking too much or have too many things to do, or I am just not tired. I stare at the ceiling, I very literally drum my fingers on the bed in musical patterns. If it is really bad, I will just give in and get up and do something productive.
The last few days though, wow, I have been out-of-it, emotional, drained, even lightheaded. Then when I try to sleep - NOTHING! I sit there and cry because all I want to do is have a restful night's sleep, but my body or mind or something is preventing it.

Right now for instance: I spent 2 and 1/2 hours tossing and turning. Wired. I can barely keep my eyes CLOSED! So I try writing. I try listening to spa music. I try everything. I even try medication to help me sleep! Now it is after 4am, so I know that the rest of this Saturday is going to be even tougher than the Friday was! I am going to feel emotional and pissed off and like a zombie. All day. I want to punch a wall! I want to cry! I want some goddamn rest!

What do you do when your body absolutely refuses to allow you to sleep?

Time Management

It is kind of shocking how different life can become in regards to time management when at different stages of life.

When I was in University, very ill but not as ill as I am now, I felt that I had those full 24 hours in a day to accomplish everything. I had really bad insomnia, so instead of lying there staring at the ceiling, I used it to my advantage. I packed my schedule so fully that if one activity ran even 30 minutes late, I would be speeding through the city and scrounging for a granola bar in my bag. During that time, I wound up in the Emergency room at least once a month. My intestines were brutal but my energy level was insane.
I also knew that this high energy level would not last. I wanted to get as much life in as I possibly could while I still had a full 24 hours to work with every day.

That's the thing no one tells you about fatigue. It's the part we don't always understand about illness. It is not always the pain that takes us down. It is not always the symptoms, the side effects, the medications, or the pain. It is the overwhelming feeling of being body-exhausted. It is the fatigue that takes you down.
Suddenly, instead of having 24 workable hours in a day, you get 3 or 4, at a quarter of the speed. Your energy level bottoms out and what you used to be able to do in 24 hours you can't even do in 24 days.
Your time management changes.

I used to be able to cram 2 or 3 appointments in one day, along with work and school and volleyball and going drinking and writing a paper and studying and reading a novel for fun. Plus eating and my usual 18 trips to the bathroom. Maybe even a nap in there.

Now, I have to plan days ahead to do any cleaning of the house, to be able to go to one appointment without any help. If I want to spend an hour painting, I cannot have anything else planned for that day. If I want to do a couple hours of singing, two days prior and two days after have to be cleared. I can be spontaneous, but I still have to make sure I have nothing important the next day.
It takes my body much longer to recuperate, much longer to do anything at all. My time management strategies have drastically changed.
Even something as simple as getting ready! My best time (I was running late) for getting ready in the am was 7 minutes. That includes a 1 minute shower, doing my makeup while I went to the washroom, curling my hair while getting dressed, moving at lightning speed - still getting all dolled up.
Now, just to be able to brush my hair, put on makeup, and get dressed, takes me 30-40 minutes. Getting all dolled up requires lots of long breaks, so it takes me 3 hours to really take my time getting ready so I don't crash.

My usable hours used to be 20-24 every single day.
Now, most days, I may only have 1 hour. The remainder are spent resting, medicating, taking care of our puppies.
Some days I have 4 usable hours - but then crash for a few days.
Anything above that and I am suffering for weeks (it is almost always worth it though). These usable hours don't reset the next day like they used to. It is never the same every single day. I do not get to reset my energy levels with a good night's sleep. It will take weeks of proper sleep after draining my energy completely.

How many usable hours do you feel you have every single day?

How much would your life change if your usable hours went from 10 hours to just 2 hours?

Listening to Signs

Our bodies are fantastic protectors.
They can adapt to nearly every situation and are able to protect our most vital parts - at least most of the time. Not only that, but they are also extremely good at giving us little signals to help us know when to slow down, when to rest, when to stop.
With injuries (or trying to protect us from injury) those signals can be big - like pulled muscles, small tears, in essence: pain.
With the exacerbation of chronic illness though, the signals can be so small that they are easy to ignore.
Things like slight increases in pain, small changes in sleep (like different dreaming patterns, waking up at odd times of the night), changes in appetite, muscle tension, increased headaches, small infections...
Then come the 'telltale' signs.
Like endless naps, never quite feeling rested, styes, sweats, forgetfulness, tension, uncontrollable exhaustion, missing appointments.

I woke up from a nap today feeling like I had been elbowed in the eye.
Turns out I have a stye.
I forgot how much these hurt - since I haven't had one in forever.

I have also had all of the above symptoms as well as an increase in pain from every illness.
I am run down.
Quite run down.

I do have a fundraiser next weekend I am attending, but apart from that I think I am nearing the 'stop' point. I do not feel in danger or anything, I just know that if I continue to burn the candle at both ends with lack of sleep and increased energy output, I am going to crash severely.
I have already had several sleep apnea episodes and even some feverish symptoms.
Time to spend more time in BED again. Hopefully the pups are ready for a little change of pace!

Finally some Sleep

Last night I got a few hours of RESTFUL sleep!!!!

I am still lying in bed (nearly 3:30 in the afternoon), and I still feel grossly fatigued, but if I can get a few hours of restful sleep again tonight, perhaps I can begin to recuperate!!

Fingers Crossed! 

Bad Dreams

Last night I had this super vivid and horrible dream.
I dreamt that Rj had bought a package of little tapioca pearls for me to add to my rice pudding... or so he thought. Then, after dessert we decided to go to a movie, but 30 minutes into the movie I started to feel awful. Suddenly I kind of gurgled up a bunch of the tapioca pearls. I could feel each one of them as they came back up my throat and gurgling out.
Pth pth pth pth pth pth.
We left the theater and (as the low-impact vomiting continued) Rj did a quick search on his phone. Turns out the tapioca pearls he bought were actually a deadly substance that can kill its victims within an hour. We race to the car - vomiting becoming worse - only to find out we had locked our keys in the car.
Pth pth pth pth gurgle pth pth
As Rj called an ambulance, the pearls were coming out in waves and were getting more and more red and with more sludge than just the pearls. Blood. Lots of blood. By the time an ambulance showed up, blood was just flooding out of my mouth, but I could still feel all the little pearls.

Such a weird nightmare.

I woke up drenched in sweat and had a super sore throat.. but I also woke up with"

A POOL of DROOL all over my face, arm, pillow and sheets. Apparently I was gurgle drooling. Like Jabba the Hut. Or Homer Simpson.
Luckily, Rj didn't notice or wake up, so I was able to clean myself up and let things dry before he awoke.

Bad dreams are pretty common if I have any cortisone in my system... and we had also done a lot of cleanig during the day so I (evidently) was kind of zombie'd out. Still strange... but funny!

Wide Awake

I am lying here wide awake.
Completely wide awake.
So much so that I looked at my pills to make sure that I had taken all of them...

Every day for the past week or so, I have been nearly falling asleep sitting up by 8pm. Any issues with sleeping have had to do with waking up in the night, either from pain, trips to the bathroom, hot flashes, night sweats, teeth grinding, or nightmares. Never because I was not tired.
But here I lie, properly medicated but not tired at all.

If it was any other night, I would simply move to a different room and watch a movie, read more of the new novel I am currently reading, or maybe even work on some of the smaller projects that need to get finished for the wedding. However, tomorrow my day is packed. I have two appointments plus a trip to the pharmacy. For me that is a very very busy day and I am going to be in hella pain from it.
So, as much as I would love to catch up on projects or PVR'd shows, I really should continue to lie here trying to sleep...

Zzzzz
Think sleepy thoughts.

Dare to Dream

I had very strange dreams last night. Crazy dreams. One was kinda good, one was weird and bad but not anywhere near night terror kind of bad.

◇The good one was about football.
Not NFL though.
Recreational League.
Apparently I decided to join a league, on a team with several of the people I used to play league volleyball with, and we played in a massive year-end weekend tournament. The dream mostly took place at the wind-up banquet. My original position was wide receiver (just like my Dad in real life), and I was pretty damn good. I wound up getting 4th overall in the league for that position (out of men and women). Then, some key players didn't show up, so I had to fill in on defense as well. I got 6th overall as a defensive tackle. (This was a very specific dream). I received some cash, a prize, and then some extra raffle tickets to put in as many of the 10 raffle prize boxes I liked.
I never did get that far in the dream.
I was handed my prize and envelope for 6th overall, smiled, went back to my table, and woke up!◇

Sometimes vivid dreams become intense and frightening, especially after taking a certain medication. This one, however, turned out to be just plain fun.

I had a fairly awful sleep overnight. I was up multiple times for the washroom - my intestines are downright ticked off, despite the fact that I stuck to Boost, rice, and apple sauce all day - and I got paranoid a few times. Medication oops.
Then this morning, as my alarm went off to take my medication, I was reluctant to move. I had FINALLY found a comfortable position, and I knew that if I just simply turned off my alarm and closed my eyes, I would be back asleep immediately.
I cannot miss my medications though, otherwise my entire day is messed up.
Just as I was about to say 'screw it' and fall blissfully back into an actually solid slumber, my intestines woke up.
They woke up brutally.
One intense intestinal cramp followed by me springing out of bed and hobbling like lightning to the washroom in order to avoid a reeeeeally bad morning definitely had me far too awake to fall back asleep.

My days are usually so uneventful!! Why do my nights have to be so busy?
At least I had some good dreams sprinkled in with my usual nightmares.

The question now is, do I try and sleep for a couple more hours, or accept defeat and force myself to get up and get moving?

Bench

It is important to remember that every single pathway has a place to rest. Every single journey includes rest stops. Sometimes you have to remove yourself from the pathway completely to maintain your strength, some rest stops take longer than others, and there is no time limit, but you have already begun to travel along a path.

So enjoy each step, stop whenever your body requires rest, and remember to look around. You don't have to veer off course to learn from your surroundings.

And if you need a rest and there is no bench or clear place to pause, make one.
Even in the forest you'll find stumps along the way to sit, cushiony grass beds, and unexpected clearings. It is your life. It is your path.

Pause.

Sleep

Sleep has always been a bit of an issue for me since I first became ill.

At first it was pain and bathroom breaks. I would be up several times throughout the night racing to the washroom and I would doubled over in pain for the most part.

Then the side effects of medications were added to the mixture. Prednisone was the catalyst for so many issues with sleeping. It started with basic insomnia, then the nightmares, night terrors, and the racing heartbeat started. Have you ever tried sleeping when your heart rate is above 100bpm? Pretty tough to relax, especially when there are so many other factors working against you.

Those night terrors went from pretty basic to all-encompassing fear. Suddenly I needed to do everything I could to stop myself from even having the slightest cat-nap. Those terrors were so vivid that I could not handle them - emotionally or psychologically.

Then the hallucinations started. Small at first, seeing a spider in a corner that wasn't actually there. Trying to pick up a towel that had fallen off of the bathroom counter, that wasn't there at all. My eyes playing tricks on me, seeing bats in my bedroom or other critters. But it got worse. I began having phone conversations that weren't actually happening. I saw a friend standing in my kitchen cooking while we had a conversation, only to blink and be standing in the middle of the basement suite all alone.
That escalated to daytime hallucinations. Speaking to a substitute teacher in the middle of my high school - who did not exist. Soon I had to ask for help from friends deciphering whether what I was seeing, hearing, and who I was speaking with was real or not. I had to verify with people on whether or not we had had specific conversations. I saw green windows in the middle of someone's front yard in the grass. I stopped for a pedestrian using a crosswalk, only to realize that the pedestrian was only in my mind. Not only was I terrified to sleep, now I couldn't drive either. I could not trust my own senses.

As if insomnia, night terrors, hallucinations, a racing heartbeat, bathroom breaks, and pain weren't enough...

The sicker I got, the more issues I developed. I started grinding my teeth when I DID happen to sleep. I would sleepwalk and find myself in the living room, or the kitchen, and several times on the bathroom floor. I would yell in my sleep. I would flail. I would start shouting in languages no one could pinpoint.
Then, of course, came the 'common' symptoms of having an Inflammatory Bowel Disease. Soon I needed mattress protectors and other embarrassing supplies.

If I don't take certain medications to help me sleep, I will sometimes suffer insomnia, often for weeks at a time. But when I take the medications to help me sleep, it feels like a medicated sleep and I never quite feel well-rested. And then there is the energy rollercoaster... where often for months on end I will suffer the complete opposite side of the spectrum and I will be sleeping nearly 20 hours each day and can never quite get myself to fully wake up.

Right now things are much calmer. I still need help getting to sleep sometimes, and still go through bouts of insomnia (like right now). I hallucinate much less, I haven't walked in my sleep for a couple of years, and my nightmares/night terrors occur every few weeks instead of every single time I close my eyes. I think a major part of this improvement comes from feeling safer. The extra supplies are needed every couple of months, unfortunately, my heart still races, the nausea & pain & bathroom breaks remain frequent, and I still grind my teeth if I am extra sick, but at least I am not so paralyzed with fear that I purposely prevent myself from sleeping.

When I am able to sleep soundly it is glorious.

I have a complicated love/hate relationship with sleep... and sometimes I need to force myself to stay awake for so long that my body finally just gives up and allows me to pass out without extra medication.

I think my body will finally let me sleep now... at 6:30am... after my Berinert treatment.

Happy Friday.

Fatigue Friday.

Bright Sides of Not Sleeping

I have been having some pretty major difficulties sleeping, as I have mentioned several times lately.

My choppy sleeping habits are usually due to bathroom breaks, pain, restlessness, itchiness, increased heartrate, and a general increase in body energy caused by Cosentyx. Now, this isn't the energy that allows me to be more active necessarily, but more like an unwanted coffee rush that keeps me up at 3am.

With all of that said, there ARE some benefits.
A) If there are specific things on my to do lists that I can accomplish without making much noise, I tend to get those things done at all hours of the night.
B) Afternoon siestas are always pleasant - even if I have a 'sick sleep' and wake up feverish and disoriented.
C) Due to constant breaks in my sleep, my hips and joints don't get quite as stiff. (Always itching and shifting and getting up to go to the washroom cuts down on pain during the day).
D) It sure makes me appreciate the nights when I DO happen to get a full night's rest.
E) Extra reading, extra research, extra time.

So sure, going on almost 2 months of sleeping only about 3 hours a night can make a person frustrated, irritable, and go a little crazy.... but as long as there are some upsides, I can deal with it.
Plus... it could always be worse!! Prednisone made it so that I only slept 20-30mins per night for 8 months. I was certifiably nuts after that much time with that little sleep. Right now I am far from that.