Exposure January 17/20

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

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