Exposure January 13, 2020

Well this week is going to prove to be an interesting one.

Here is the picture I finally took of Dec. 31 to Jan. 7, 2020 blocks. I’m loving this!

Tomorrow we are slated to be the coldest place on Earth. I’m serious. It’s a bit comical with my Exposure “issue”.

So first quilt catch up and then I will add a bit more about my circumstances.

Here are the temperature charts I made:

– this weekend I added Kona Black in as we heard about this lovely Polar Vortex.

I choose my colours to reflect how I envision the temperatures. I’m pleased to see they put this Vortex as purple too!

Zero is Kona Breeze as I can deal with it – bundled up. It is actually more comfortable for me than higher temps where I need to be bundled still but they are too warm to actually be bundled up so much and I then I have a hard time regulating my temperature. Layers are constantly being put on and off and I am walking in a perpetual state of “burning”. Zero is good. Below zero to -4/-5C this year I have been able to go out bundled up as well so they are light blues. As it gets darker those are where we are getting to the deep freeze zone. When I was younger we would head up to the ski hill and if temps dropped lower than -20C as we were driving we would say, ok no skiing today – that was my limit. So -18/-20 starts the purples!

Kona black is -33 and lower – as really who lives in that?!??

You will see the greens getting warmer as the numbers climb. Parrot is the first real warm green as it is the lowest temp I have been able to be outside in without coverage 13-14C, for any period of time. I am hoping that will be different this year, we will see in Austin at Quiltcon.

Here is a picture of the tools I am using:

I also did a happy dance finding this wine holder that my husband received as a Christmas gift:

I currently store my “upstairs” fabric in wooden wine crates that I’ve repurposed so this fits nicely on top. The two sides are the perfect size for my 2.5″ strips and I put zero and below on one side and above zero on the other.

This past week we have not had any Chinooks, life is busy with school starting today from holidays, and with this huge drop in temperature my body is really reactive right now – for me that means I am constantly “on fire”.

I relate it to when you touch something hot. it’s a burning prickly sensation. The house is different temperatures throughout due to the extreme cold and fluctuations in temperature are a big issue for me. This weekend I could not sew as my one side would start burning too much as it is by the window. Anywhere in the kitchen besides cooking at the stove I was burning. I am “puffier” than usual due to it and I react to any pressure on my body. Sitting in a chair will feel like I have a seat heater going, it will get painful so I have to move, same with laying down in bed. Sleep is an issue.

So back to when this happened.

Day 2 of Exposure:

The next day I woke up and my iPhone Face ID wouldn’t work – I thought something was wrong with my phone and then I looked in the mirror.

The swelling had continued over night. Edema is always worse when you first wake up – but it wasn’t pretty. I went to work on trying to find myself someone to see. As a medical doctor I don’t (did not) have my own doctor. Not a good idea, but a common issue for doctors. I knew the specialist I wanted to see as he and I had been study partners in med school and I thought okay I CAN TRUST HIM.

Issue number 1, he was out of town. (But yeah for email!)

Issue 2, he wanted me to see an allergist as well.

Issue 3, the Allergist wanted a GP referral.

He kindly had his nurse send in a Rx for me for some meds he thought I should start right away in order not to continue getting worse. If I got worse he said go to ER – however, I wasn’t really convinced they would have any idea what to do with me beyond what we were doing…

There was also a huge list of labs to get, as number one when weirdness appears.

– rule out cancer. I knew this; but, I kept this to myself at the time.

Many people who get cancer or another serious systemic illness can have reactions to changes in temperatures.

My nurse, who has worked with me since I was in medical school, was able to help coordinate one of my previous colleagues stepping in as my GP to help facilitate the referrals and labwork.

Okay I thought, all good. Specialist squeezing me in Monday (it was now Friday) I was going to pick up the meds to start as well as an Epi Pen. Labs I would get at my office Monday. Perfect. Except now I needed to leave the house to get to the pharmacy. We are in a condo so I am parked in a parkade but to then park and go outside…..I wasn’t sure what would happen.

My husband and I decided I would try and meet him through this inner maze we have downtown called the Plus 15. He talked me through where I would enter – about a 2 minute walk from where we are located to get inside. I dug this mask out of my ski gear, not appreciating at the time how much this was to become a constant in my life. I put my google maps on and set out to get to the Plus 15 as quickly as possible. As I was walking/run-walking there I wasn’t feeling any weird sensations in my face or body. Success! I made it through the doors and quickly took my mask off before people saw it. Found my way through the maze to meet DH with a friend of his for lunch who I’ve known forever so I really wasn’t worried about him seeing my face.

DH walked me inside to the pharmacy. I grabbed everything, and then he pointed out the way back, as now it would be different as it wasn’t directly back. I never use the Plus 15 as I don’t work DT and I do prefer being outside. DH works DT so he uses it all the time. Everyone does. I was cursing myself for not having gotten to know these routes before. As I got closer to where I thought I should exit my GPS wouldn’t work as it has poor reception with the tall buildings. So I guessed and exited outside.

OMG. It was block before I should have exited but I thought it wouldn’t be an issue.

Just a small block.

Wrong.

Literally, as I was about a block form the condo, my whole body started burning (not just my face) and I felt my legs swelling – my jeans were getting really restrictive. I got inside and up to the condo. Took everything off to see my legs – my body – bright red and swollen. Like one giant hive I guess. So it didn’t matter that things were “covered”.

I texted DH a photo and he started home. I took the meds. For those who are curious I was started on a combination of Blexten and Rupall (both at 4x their regular dosing) as well as Ranitidine twice a day and Prednisone 50 mg — I already had Reactine 8X regular dosing on board, and Benadryl, as that had been what I was using to try and mitigate this. It was like I had taken nothing.

This was Day 2 of Exposure. I was petrified inside. Calm, cool on the outside.

I’m a doctor, a mom and a wife. I take care of people. I’m healthy. WTF.

I will attempt to post on Wednesday Day 3, 4 and 5, so the weekend and then the Monday I see the first doctor. It gets better, as in more interesting. And I will post my blocks I finished up to today 🙂

Until then,

K

 

 

 

Circular Collaboration with Harris Kuipers

https://www.harriskuipers.com/blogs/news/hk-circular-collaborator-kathryn-upitis

Do click on the link above to see the full interview at http://www.harriskuipers.com to learn more about their amazing clothing line and what we talked about 😉

K

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