Blog

Here are the latest sewn together blocks, which mark up to Monday just when our Polar Vortex started to arrive.

If you have been watching the news this past week Calgary, Alberta, where I live, was likely on it! We were apparently one of the coldest places on Earth this week. Seriously.

Even Jimmy Fallon poked fun at us! (I love him BTW!)

For me this has equated to a really difficult week. Don’t get me wrong, I am so much better than where I was – but I will tell you a little of where I am NOW.

This week it has been an issue to do anything even within the confines of our condo as the extreme temperatures creates “drafts”. I use quotes as I’m not sure everyone else feels them? These drafts burn my skin, make me swell, my stomach gets upset, my joints (whole body) hurts like when you have the flu, and similar fatigue. I can fall asleep having a conversation. It makes it hard to concentrate. I can’t up my meds currently (but after an hour on the phone with the specialist yesterday we may try something new in a couple of weeks!!!).

Issues this week:

The condo parkade door broke – that meant no cars in or out. Which meant I had to get an Uber to work, which also meant I had to exit the building front door. I was only outside from the curb to the car, and completely covered. That doesn’t really matter, it mitigates things, does not stop them completely. So by the time I enter the car my body feels on fire. My face is a bit puffy, my eyes red as though I’d been crying and red around as though I’ve been rubbing them. I think the meds now prevent the horrible red swelling I used to get. So off to work I went.

Best Uber driver ever actually went inside my parkade to drop me.

Next issue: I’d have to go back outside to get in to get my car 😑

Did it; but, again, burning. It dissipates after awhile but my back was still affected when I went to sleep.

Next: car needs gas. I hadn’t filled up all week waiting for it to warm up a little – even to -15C I’d take. No such luck. We have been under -33C everyday, not even including windchill.

My brother happened to text as I was trying to get up the courage to go to the gas station on the way back to the office. He was on his way to me anyways so he said he’d take the car and do. Wow. Great brother!

Next: food. Even with my handicap placard I can’t go that distance nor let the car cool down at this temperature as it happens too quickly. So tomorrow my DH will go with me. Slim pickings in this house right now!

Next: any other things that I can’t get Amazon to deliver are on hold 😂. That’s a funny fact. It has become my go to and unfortunately we do not have the same Amazon delivery the US does!

I actually ordered food in one night. First time EVER I’ve done something called Skip The Dishes. I’m one of those people who makes dinner every night!

Driving: kids activities require a lot of this and right now the cold on the window side and surrounding air even in my amazingly well heated car is an issue.

Result: I’m tired, grumpy, not eating healthy food which circle back to tired and grumpy as that doesn’t help that cycle! And unable to get to lots of to do items as basic daily tasks are taking up a lot of time finding a work around. CRAZY POLAR VORTEX will you leave already!

It’s supposed to warm up tomorrow. Fingers crossed!

So back to Exposure Day 3&4, the first weekend and the Monday.

The weekend:

So we (DH & I) thought let’s go use the Plus 15 (that I mentioned earlier this week). He could lead so we would enter at the right spot. I was already going stir crazy so this was so we could go for a walk. To give this perspective I normally log 15K -20K steps a day, sometimes I hit 30K.

Off we went.

All okay until we entered the Plus 15 and went inside. Within minutes my skin started burning and I could feel my face swelling and also my legs.

I took off my mask and all around my eyes and tips of my cheeks where the skin had been exposed was swollen and brilliant red.

My jeans were getting super tight and I was radiating heat. DH put his hand on my leg and could feel it.

Once we got home I saw this is why – my legs were very swollen and looked like this:

Reminder I was fully covered and was outside for less than two minutes. And on a whack of meds….

At this point I figured nothing was going to change this, damage had been done, so we continued walking around inside.

It wasn’t comfortable. Every time we had to open a door to another corridor in the Plus15 the temperature changed and this created issues. I was breathing fine so didn’t use epi.

We decided other than the unavoidable sprint home I would not be going outside AT ALL again, until I saw the specialist Monday.

Sunday: Meds are really not agreeing with me. I’m beyond exhausted on the high dose antihistamines and getting ALL the side effects. I’m definitely the worst patient ever. Most doctors are! They are giving me joint pain too so I decide to have a bath.

Um yup. Did I mention foggy brain too? Over the weekend I started making sticky notes to myself so I’d remember what I was doing. Warm bath sounded good. It’s not cold so I thought should be fine.

Again, proven wrong.

I won’t post a picture but I was incredibly swollen and all limbs red – again giant “hives”, heart racing, felt faint and some difficulty breathing. Gave it 30 minutes and it started improving vs worsening so we stayed put.

Oh, and cold drinks such as ice water, a Moscow Mule? I can only sip or I start coughing, choking. Another new thing. And it burns to hold the glass or cup that is cool to the touch.

Monday: The big day. I will get answers.

I will be fixed.

This can all go away as there is a simple solution so I can go back to my life and catch up on how behind I am now with this starting Thursday night!

Okay, again wrong – see my annoying pattern?!?

I went parkade to parkade to my office to get my labs drawn.

Then I spent two hours with the specialist. He agreed it was severe cold urticaria, angioedema but why? And how to control? What was causing this? Was this just a symptom of something else?

He performed an Ice Cube test. Apparently this is diagnostic, yet when I reacted I said oh everyone likely reacts this way. Wrong. A stream of residents came to see the positive test they only read about and never see. The ice cube left a huge raised hive on my arm with hives and swelling extending from it making my whole arm swell up.

Interesting was my unofficial diagnosis.

I, for some reason, did not take a photo that day; but, here is one after a repeat test a couple of months later after more meds were added. To me this is very “unreactive” compared to my initial test.

But as you can see it is still positive which has shocked everyone as with the amount and number of meds I’m on they were prepared for nothing to happen.

Again, I just like to be interesting.

He said that I needed a Med alert bracelet ASAP as there is a risk I could go unconscious in the cold and if found alone people wouldn’t know epi could save my life (I.E. I get into a car accident and the window gets broken – it was winter – all of a sudden parkade to parkade wasn’t safe).

My new jewelry:

That EMS and physicians would need to know as I could not receive any IV fluids not preheated, nor be in OR without the room being warmed up. I was warned not to swim as that is how most people who have been diagnosed with things similar to what I was demonstrating have died in the past. So yup no baths. Oops.

There were a lot of don’ts and I may not be remembering all of them right now. It was a bit overwhelming as he had more labs he wanted NOW.

One had to be done at the hospital as the tubes couldn’t be transported or the blood would change temperature. Issue our hospital, other than the emergency bay, doesn’t have a connected parkade so you have to go outside.

My DH was leaving for a trip so I was on my own. This brought up similar things to what I’m experiencing this week – kids activities, food, dogs, how to get to places that don’t have an inside parkade….

Another brother of mine became my driver (I have 4) to get me to this hospital lab.

Later that day I went to go get a handicap placard and I noticed the doctor marked off long term, not just for the month. It was Jan 2019 to 2020.

This made my heart sink. How is this even happening? How is this even a thing?

Yesterday was the one year anniversary date. Wow.

And yes, now I have to head in for my 2021 sticker. It is good for me to revisit where I was a year ago as I am able to remind myself how far I’ve actually come, and also that I did accomplish a lot last year despite of these limitations.

I’m going to post monthly highlights of 2019 & 2020 to keep the positivity flowing! It’s important to try and keep a positive approach and sometimes revisiting things can spiral backwards. So, I’m taking it more as a look at how far I’ve come, what I did do and what I am doing. Keeping my feet forward and trying to be more patient, which isn’t my strongest quality!

Until next week,

K

I am incredibly excited to be starting this project this year. There will not be extra effort on my part for temperature data collection as it is a regular event in my day to day life. First thing when I wake, anytime I may need to go outside (even for a minute), before I go to bed, anytime I need to drive somewhere. It’s a constant.

My world dramatically changed on January 17, 2019. I went anaphylactic. From the cold. From being outside for two minutes (ski jacket, togue, scarf, mitts, boots on).

My DH (Dear Husband) and I had headed out after work to walk the dogs. There is a large park (Island) right behind us and paths we take. We had just crossed onto the island and I felt a burning tingling sensation in my face and then my lips and started to feel swelling immediately. As a doctor I knew what was happening, and I knew it had to be from the cold. Of note, I had been outside in -50C the day before, up North, taking photos with no issue.

DH was a bit ahead ahead of my as I had slowed as I started to feel this happening (and we walk fast!). I yelled ahead to him, he turned and said, “What the F*?! have you done to your face?!?”. Those of you who know him, this is a typical DH reaction; but, it gave me the confirmation I needed that yes, this was actually happening.

I simply screamed back, “RUN!”, and did an about face running back to the back door key out. He followed suit with both dogs.

A regular person would go to the E.R. at this point. Not me. Raised by a physician, and a physician who was Chief of Emergency for years, I can definitely be my own worst enemy.

This is the start of my story and I will fill in the pieces as the year progresses with this temperature quilt. Opening up about my rare circumstances as the days go by. Suffice to say you can see I survived day 1 of this last year, and I’ve persevered. I’m still here. I’ve figured out certain ways of being and when I look at it I’m probably the most aware of everything in my surroundings at a given second then most humans. A curse and a blessing – like most things. My challenge this past year, one hundred percent, has been to find the blessings in this and come out the other side, besides staying alive I guess. I should also just be thankful that I’ve managed to stay alive. Funny how we don’t take that as an accomplishment.

Onwards to this quilt which adds an element of fun to my now obsessive compulsive, but necessary, observations on temperature. I’m the best human windsock out there, and have become incredibly proficient at predicting our weather which is a feat as it has temperature swings daily.

EXPOSURE QUILT

Day 1 I’ve chosen to be Dec. 31, 2019 as I wanted to include the last day of the decade.

I’ve selected 30 Kona Colours going from 33C + down to -30C and lower.

I will be adding a slice of Flame if there is a Chinook.

And lo and behold we had a Chinook on Dec. 31! It is that arch in the sky and is a warm wind coming off of the mountains that bring warm temperatures with it.

So I was able to go outside, all covered as usual, but I made it 20 minutes with just slight discomfort in breathing, yeah!

The temperature range of Dec. 31 was -7C to +6C with a Chinook in the morning and rain in the evening that turned into snow at midnight!

I will be using flying geese blocks – the goose being the High for the day the background will be the Low.

Kona Snow I will use a slice of if it snows, and Ash to represent rain.

The Blocks will be 2.5″ x 4.5″ unfinished and when I travel away from home will be upside down as I am making the blocks according to where I will be as it is all about my EXPOSURE. I haven’t fully decided if the blocks I make while I am at my ranch will be upside down or not, as it is “home” too but an hour outside the city, Calgary, and has more extreme temperatures. I’m reserving my decision on that one!

I’m waiting to be back in the city to start piecing these blocks so I’m the meantime I am making photos of what fabrics are to be used as a way to record the days.

I’m loving this process so far and that’s the most important thing.

Happy New Year everyone and I have resolved to try and post weekly this year. Every week I will fill you in more about this quilt and my journey. I may have to do two posts if I get really organized to update you on other projects!

K