Top 7 Things you Need when Traveling With Chronic Illnesses

In the past few years, I have done a fair amount of travelling including two trips to WDW, and a bunch of travelling from Thunder Bay to Toronto and back for school. With all that travelling I have found a few things that being on a plane for a few hours so much better.

1. Poweraid or Gatorade

This is an essential part of flying for me because the pressure change triggers migraines sometimes and otherwise it just makes me feel better. I have learned that not every airport sells either product so I recommend measuring the amount of powder you would need to mix it in your water bottle and just bringing it through security.

2. A snack of some sort

My favourite ones on planes currently are Jack Links single serving beef jerky or Babybels and crackers.

3. Neck Pillow

For a long time I didn’t understand why someone would buy a neck pillow but after getting one about a year and a half ago I genuinely love them, and they make flying so much more comfortable.

4. Small Blanket

One true lifesaver when I fly is having a small blanket. https://www.qehomelinens.com/qe-kids/throws-blankets-cushions/ these throws from QE Home Linens are definitely my favourite because they are small to pack but super soft and are a reasonably good size to cuddle up with. The other perk of travelling with a blanket is that you can also roll it up and use it as extra back support or put it against a window as a headrest.

5.  Extra Headphones

On our flight back from Orlando last year my headphones broke which for me is almost like someone taking away the only thing that makes comfortable enough that anxiety won’t take over my body. Luckily my mom had an extra pair, but that experience taught me to never go without at least 1 extra pair of cheap but effective headphones.

 6.  Meds, and I mean ALL of them

This one should be fairly obvious, but I once forgot one of my emergency meds when I left to go to England and it was incredibly anxiety-inducing because I was always worried about having an asthma attack and having to go to the ER. 

On last February’s trip to Walt Disney World, I was so glad that I remembered to grab the Excedrin Migraine that my GP told me to take for my migraines at the time because at 4:45 am I was sitting in an airport lounge in tears because of a migraine that was starting. By the time we were on the plane at 5:45 am it was a full blown migraine but having the med that I almost didn’t grab on my way out of the house meant that I was able to spend part of the day at the park in sunglasses with my family.

7.  External Charging Block

One of the worst things, when you are on a plane at 30,000 feet, is your phone dying and having nothing to drown out the crying children or fighting couples. I used one of these on the flight to Disney because I have one song, Perfect by Ed Sheeran, which I can use to drown out people when I have a migraine, so I was basically listening to the same song for over 3 hours straight. The charging block saved me from having to worry about my phone dying when all I all needed to worry about was not puking on my mother and my shoes.

 

So, I hope these tips help you on your next flight and let me know in the comments what your top tips for flying with chronic illnesses it.

Am I giving up or am I fighting the best way I​ can?

Im flying home tomorrow for a few days.

I am terrified that people will think I am flying home because I am giving up, but in reality, I am flying home because I need to be able to sleep and study without dealing with all the distractions of living in res. The past few weeks have been really tough, and my mental health has taken some huge hits plus being off of Advair for a few days for tests has made me a recipe for disaster.

So, when my teachers announced that classes would be cancelled on Monday (the last day of the semester), I suddenly had time to go home. Which means that for 5 days and 4 nights I can cook my own food and sleep in my own bed. It might not seem like much but with a final and an MRI next Friday I need this time so that I don’t just explode. 
This means that there will most likely be less Instagram update and there will (probably) not be a new blog post going up for a few weeks as once I get back, I will be in finals. 


So for now goodbye. 

If nothing changes the next blog post should be up around the 18th of December.

Bad News

What do you do when the world feels like it’s crashing down around you, and no one can tell you why? Do you cry? Scream? Hide from the world? Try to pretend like everything is ok? Lie to everyone you know about how you feel? Or, do you simply sit on the floor and think?

I feel like I do a combination of all of them. I cry, scream, and vent to my mother who just takes it all as it comes because she is just as frustrated but realizes that living it is so much harder, I pretend that I am fine to my IRL friends and housemates, and sometimes when it gets all too much I sit on the floor and just stare at a wall until I decided to put my thoughts on “paper” and grab my laptop.

I genuinely believe that my chronic illness friends see the most. They are the people I text with about appointment anxiety. They are the ones that see me cry on Livestreams when I just need someone to talk to and they are the ones I know understand what I am going through even if they haven’t gone through it.

To say that I was a mess coming out of today’s appointment would be a vast understatement. Before the doctor even left the room, I was crying, because the one word ever sick kid fears had come out of his mouth, “We have nothing else to do for you, we need to start looking at other hospitals” and “I have only found two doctors in the province that have seen something similar.” It had been weeks of waiting and hoping for answers and all in an instant it crumbled around me.  I had thought that I would be leaving today’s appointment with answers and instead the appointment left me with many more questions and fear. Fear that these other two doctors won’t take me on as a patient, fear that even if I get into seeing these doctors, they will have no idea how to fix me, and most of all, fear that this turns out to be more severe than any of us could have thought.

I haven’t answered any of my IRL friends or housemates texts about how today’s appointment went because I’m still not sure, was it good that my ligament isnt’t ruptured even if that would be easy to fix, is it bad that I have stumped a doctor who has been dealing with these sort of injuries for almost 20 years, is it good that he is talking to other doctors to try and find me an answer, or is it bad that from the tests it looks to be both sides?

Here are some things I can say for certain; I am exhausted, I feel incredibly frustrated, and I’m not going to give up. For now, that’s all I need. Will that change tomorrow when I have slept on this overnight, possibly but for now, that isn’t important.

Accu-Chek Guide vs Aviva Connect

A disclaimer, I do not work for Accu-Chek and get no incentives for writing this post. Both machines were picked up during two different promotions on the meters.

My first blood glucose monitor was the Accu-Chek Aviva Connect and I loved it. It was small enough that I could fit it in my bag with all its supplies but the meter was large enough that I could hold it comfortably and it was hard to drop even when I was having tremors. I have used it for a few months and have no complaints about it other than the fact that every once in a while it does not send the data to my phone and I have to add the data manually.

I received the Accu-Chek Guide a few days ago and so far I like it. It seems much more high tech than the Aviva Connect, it has a light just above where you insert the test strip so you do not have to turn on a light in the middle of the night and with the press of a button the test strip is automatically released. But I do have a few issues with the Guide, the test strips are really narrow making them difficult to pull out of the container and place in the meter, and as much as I loved the idea of a spill-proof container it is difficult to get the tiny test strips out of it.

I would love to see Accu-Chek’s next machine have the light and automatic release button of the Guide but the test strip size and test strip container from the Aviva Connect.

If I had to choose my favourite machine, it would definitely be the Aviva Connect because the test strips are easier to use and as much as I like the extras that the Guide has, I don’t really need them.

Current Situation

“You should have taken that for your mom. You are young and spritely. I cannot believe you made her do that. There is nothing wrong with you, your just lazy” “Grandpa, mom volunteered to take the cart back.” “I don’t care! Your mother walks on water for you and you are so ungrateful” This “conversation” happened because my other took the shopping cart back after we went grocery shopping.

“That’s Sheila’s eldest she is apparently ‘sick’” My grandmother talking to a family friend.

“Stop that coughing right now! I can’t hear the news” A normal phrase at the cottage normally directed towards me for being an “interruption” in normal life.

“Every time you cough you draw attention to the fact you are ‘sick’. I think you are doing it on purpose” Grandmother informing me of the fact she believes I am not sick.

“No 17-year-old is actually that sick Sheila. Dr. Phil says that it is a bid for attention or a condition called Munchausen’s. You need to withhold her meds and give her some tough love and she will be fine.” Did I mention how much I love my extended family? My mom tends to roll her eyes in this sort of discussion.

“Your grandmother and I have decided to no longer give you money for university. If you would just admit aren’t sick, all that money you would save by not buying meds should be more than enough to cover what your grandmother and I were going to pay.” My grandfather informing me that Grandma and himself would no longer be contributing to my university fund.

____________________________________________________________________________________________

It has not been an easy summer most of the messages on IG that I have been getting have been “are you ok?”, “do you need to talk?”, “please don’t do anything stupid.” and “what’s happening?”. To be fair, I saw someone else making the posts and stories I was I would be concerned about them as well.

The answer I keep saying is “I’m safe and ok” the more truthful answer is I am working on coping. I have good days and bad days, days that I do a lot and days that I simply sit in a chair for hours and do nothing.

But that is having to change because I start university very soon and there is shit that needs to get done and decisions that need to be made ASAP.

The biggest issue now is that I no longer have access to the money that was supposed to pay for my textbooks, lab fees, and a percentage of my meal plan. So, that money now has to come from me which means I am no longer able to purchase so things that I need to make university easier for me, like a weighted blanket or clip on shower handle. There are also some things that aren’t necessities like, a duvet, microspore, 3 shelf carts, reusable straws, command hooks, a new bag because my backpack broke, a heating pad, and ice packs.

After talking to some friends, it seems like the simplest solution is setting up an Amazon wish list which is something I feel very uncomfortable about. I have never liked asking for help if I can avoid it but I just can’t figure out how I am going to be able to pay for what was supposed to be covered AND purchase the things I need to survive at school next year.

If you have any other suggestions or agree with the Amazon wish list idea please let me know below. I do not expect everyone to actually buy something but I need to do something.

How I discovered my pharmacy was giving me generics but charging me for the originals even when my script said NO generics. AKA when my PFTs dropped significantly and I became slightly hypoxic.

In September 2017, we were forced to switch my meds to a new pharmacy (2) the pharmacist fee at my previous pharmacy (1) was 10% of the cost of the med BEFORE co-pay or anything. Which meant that for my two controller inhalers it was about $60 in pharmacy (1) fees every 2-3 months depending on how sick I was and that was on top of our copay.  That did not include my Betaderm 0.05%, Betaderm 0.05%, Clindamycin phosphate and tretinoin, Avamys, sinus flush, rescue inhaler, Differin, whatever topical or oral antibiotic I happened to be on after a simple cut, and (if I needed it that month) prednisone.

On top of that, I had medical expenses that insurance would not cover (even when my doctors tried to write prescriptions for them) because they were available over the counter. Things like MSM, Vit D, Vit C, B6, Zinc, 2 different allergy meds, Dimenhydrinate (can be purchased as Gravol), Microspore, and melatonin.

There were also some things that we knew we would end up having to buy. Things like KT-tape, extra strength A535, Voltaren, Excedrin Migraine, Sinutabs, Magnesium Citrate, a multivitamin that was just less than an inch in length, pain meds, special shampoo and soap so that my scalp would not bleed and be covered in hives, instant hand warmers for pain management, and honey Halls for post asthma attacks when my throat was sore.

In a month, we could easily spend on average $200-$300 on pharmacy fees, plus co-pay $250-$400 (co-pay only existed until I maxed out on insurance at $1000), on things insurance would not cover and would end up buying, $300-$400, so when my mom saw that a different pharmacy had a pharmacy fee of only $1.50 per prescription we switched pharmacies (to 2).

About 2 weeks later I got sick, we thought it was just because it was now early October and getting cold outside. By the time I went to see my pulmonologist in November we discovered that my PFT results had dropped after being stable in the mid to low 90’s for almost 2 years. My team was just as confused as I was about the sudden drop in my PFTs but decided not to change my controller med and to give me a course of antibiotics just in case it was the beginnings of a chest infection. Or my body reacting to the tare in my intercostal muscles.

I went on a grade 12 trip to “let us relax stressing and remind us that we were one huge family” a few days later and as fun as it was I just did not feel like myself, I was constantly out of breath and just could not focus.

At Christmas, we had a scare. We ended up being forced to celebrate Christmas a few days late (28th) because of being snowed in, but on the morning we were supposed to celebrate I could not stop coughing and was dizzy sitting down. My mother being the “stick to the plan” person that she is, was not going to go to the ER until the Asthma Action plan said we had no other choice. She handed me my rescue inhaler and I took it twice through my spacer but nothing happened I did not feel any relief. She called my pharmacy (2) and got them to transfer my relief meds up to the closest pharmacy (3) out of fear that I did not get an relief because the inhaler was empty. A soon as I took the new inhaler I felt different. Within an hour or two I was feeling ok again and was ready to fully participate in the Christmas activities.

That would not be the last time my relief inhaler would not work as expected. Sometimes it would take 2 or three doses (4-6 puffs) to start feeling in control of my breathing again. Just before Easter I was in a class at school and started to get incredibly light-headed, I looked down at my nails and they were almost plum. Luckily the teacher of the class that I was in grew up with an asthmatic sister, so as soon as she saw the dusty lips and the ashen face she knew I needed my inhaler immediately. By the time my mother came to get me my nails were still slightly purple and I was still lightheaded but nowhere near as badly as before. After emailing with my team it was decided that if I got worse I would start on Prednisone again. All in all, it took 8 puffs of “Ventolin” to get me under control that day.

A very similar situation happened the night before the royal wedding. And I spent the entire day of the wedding with my mother wondering if it was time to go to the ER. As I drifted in and out between coughing fits.

As all of this stuff with my lungs was happening, my heart rate would spike to between 180-200 and I would feel faint. My resting heart rate also went from the high 70’s and low 90’s to the 110’s to 130’s. It felt like I was running a marathon and could never sleep enough.

In mid-February, just before we left for Disney I started coughing up a mixture of mucus and blood. I remember sitting in the girl’s bathroom at school and sobbing the first time it happened because I was so scared that I was dying. At that time, my resting heart rate was close to 115 even when seated.

When OHIP+ became a thing, I was ecstatic because my mom and I finally did not need to do the 90-minute trip to the pharmacy (2). Suddenly we could switch back to the pharmacy (1) that was less than a KM away because all of the fees would be covered.

Switching pharmacies was much more difficult than I remember it being just months before. At first the pharmacy said that they had no one with my health card number or name, then they eventually transferred my Advair and told the pharmacy (1) that that was the only prescription that I had, the pharmacy (1) tech called our house and made me give them a list of ALL of the prescriptions and prescribing doctors that could possibly be under file at the other pharmacy (2).

The very first time I got my successfully meds filled back at the pharmacy (1) we had to leave I realized that the packaging was different and there was a different logo on some of my meds but, I assumed that the company had just changed their logo. The first time I had to take my new rescue inhaler I noticed that not only did it had a different after taste but it only took 2 puffs to get me under control when it would have taken me many more with the prescription from the other pharmacy (2).

After talking to my team and going in for a consult we discovered that when I should have been getting the original the entire time I was actually getting the generic that had only been proven to be 60%-80% effective. I was so angry and heart broken.

We still aren’t sure how many of the meds I was receving were generics and how many weren’t but I do blame the pharmacy (2) for some of the grief of the past few months. Was the decline in PFTs partly because of the injury and partially because I was having to take such high doses of the rescue meds? Probably, the injury, according to my team, exacerbated the symptoms I was already dealing with because my lungs were inflamed because of the non-working meds.

One of my friends recently asked me if I was going to peruse legal action and the simple answer is no. The longer answer is that in 30 days I move into university and I really don’t have time to be dealing with a lawsuit in Toronto and be going to school in Thunder

The Bag AKA My Lifeline in an Emergency

A few weeks ago a friend asked me what the pink bag that I always carry around contained. I had never really thought about the fact that not everyone carries an “Emergency Bag”. So, I thought I would write out what I carry in hopes it would help another person plan their chronic illness emergency kit.

Almost everything in the bag fits into two categories, normal people or chronic illness. So, I will start with normal people.
1. Hand Sanitizer (You never know where people’s hands have been)
2. Hand Lotion (hypoallergenic of course)
3. Tissues (I cry A LOT)
4. Small pack of Clorox wipes (again with the hands thing)

Now for the chronic illness portion, I could divide this into sub categories but I fear that would take too long. So, …
4. Benadryl pen (You never know when hives will strike)
5. Reaction (Allergies suck)
6. Sinutabs (Allergies suck!)
7. Kids Chewable Gravol (cherry flavoured because I hate orange)
8. Adult Gravol (because sometimes children’s is not strong enough. Chewable though because it works faster)
9. Excedrin Migraine (Gels)
10. Ibiprophen (I fall a lot)
11.Accetominiphin (Sometimes I fall really hard)
12. Vogmask (Pollution allergy + all of my other airborne allergies)
13. Ventolin inhaler (Asthma because my lungs aren’t even smart enough to breath properly)
14. Peppermint essential oil (nausea and headaches)
15. Alcohol swabs (infection protocol step 1)
16. Topical antibiotic (step 2 of infection protocol)
17. Band-Aids (multiple sizes, step 3 of protocol)

Thigs that I use to carry …
1. Caffeine pills (now I just drink a Diet Coke or something similar because the pills took too long to kick in)
2. List of medications (The only hospital for over 100 KM is the one my care team is at. Not the smartest decision but my bag ran out of space and emergency meds trump the list.)
3. Electrolyte Drops (I find that almost everywhere stocks Gatorade or PowerAde now.)

Thigs that I should carry…
1. Aero-chamber (Bulky and I broke one in the past when it was in my bag, too expensive to break constantly.)
2. List of medications (At some point, I will upgrade to a larger bag and I will have space again for it)

Things that I need to get so I can carry them…
1. Medical alert (If anyone has recommendations for cute ones that won’t cost an arm and a leg, please let me know.)
2. A patch that tells the world that the bag contains medication (currently it is just a plain Ipsy bag that is only identifiably as containing medication if you open it or I have made you grab it for me.)

Overall, my bag is not perfect but it is a hell of a lot better than the one I first made up 4 years ago.