Reflections, ramblings and a recipe, to boot!

It’s been so long… I should be making a far more concerted effort to blogging regularly and it’s not been easy trying to get the motivation to write down recipes, at the very least!

My favourite recipes really need to be hanging out, here, where it’s most convenient for me to refer to all the recipes that I turn to, again and again. Over the last couple of years I’ve been making sure to have “hard copies” of all my favourite recipes saved, on my ipad, so that if I am ever faced with the prospect of no longer having this blog, at least I will still have access to all the recipes that I cook the most often. [Side thought: I wonder I should toy with the idea of publishing them in a small personal cookbook like I did for the family sticky rice cookbook I made last(?) Christmas…?]

It’s been a really challenging few months. TheHubbs™ has been dealing with a still (very) unknown recurring health issue that’s been plaguing him since the end of September, and me doing Round #3 of infusions.

The third round of Rituxan/Rituximab infusions (started October 12th, finished the 26th) have left me in the familiar state of: So much tired, so not hungry, so not motivated to cook, so exhausted, and dealing with unpredictable bouts of random nausea & barfiness.

It sucks.

So I pushed myself this afternoon to shut down SALLY and just try to be a normal human being for a couple of hours today. The hard won effort became a surprisingly decent result: an easy dinner that I would be more than happy to recreate again, after tonight.

Backtracking a bit: Last week, The Hubbs™ made the executive decision to restart our grocery delivery service with Spud.ca to go along with our bi-weekly mini Winter CSA pickups with Noble Gardens.

Winter is never an ideal season for me to go out and about, mainly due to the cold temperatures aggravating my breathing & lungs, plus cold & flu season wreaking havoc in public places where I am more likely to catch a bug of my very own, but right now I’m still under TheHubbs’™ imposed post-infusion lockdown until the end of November.

Grocery shopping under these circumstances is not easy for me, and The Hubbs™ would ordinarily be doing them himself; either after work or sometimes he’d brave the grocery mobs on the weekend, but this Unknown Health Issue (a.k.a. “U.H.I.” from this point forward) has absolutely clobbered his energy levels.

U.H.I. has also become a serious quality of life issue which is affecting coping mechanisms, and inadvertently affecting me, too. It’s especially frightening being unable to adequately help care for your own caregiver if you’re physically incapable of functioning like a normal, healthy, human being to begin with.

So we’ve been trying to make do as best we can, but we can only do so much when I’m pretty useless in my current condition and we’ve had to learn to accept the offerings of help from MIL when TheHubbs™ needs extra hands with the chores I can’t complete on my own, getting a few groceries picked up, or whatever. It sucks so much.

*sigh*

So! That takes us back to the dinner I successfully made, tonight: Bacon & Brussel Sprout Spaghetti. Ya, Rly.

I realised that I needed to clear out as much space in the fridge that was being taken up by the previous weeks’ veggies before tomorrow’s grocery delivery from Spud. It’s amazing how much space an awkwardly shaped veggie can take up in the fridge! Noble Gardens gave us brussel sprouts on the stalk a few weeks ago, and it was so large & unwieldy that I had to chop it in half and share it with Mom & Dad!

Thank goodness my parents accepted the brussel sprouts offering because we honestly would not have been able to eat the entire stalk’s-worth of sprouts between only the two of us.

So without further ado, my first recipe posting in absolutely forever so I will have a place to track it back when needed. Super fast, super simple, and super tasty: Five ingredients (most of which I would consider pantry staples), turned into “one pot” meal!

As a side note: With American Thanksgiving coming up this week, I imagine this would make for a really great use of any turkey day leftovers, especially with some actual leftover turkey on the side!


Bacon & Brussel Sprout Spaghetti

1 onion, sliced

3-4 cloves garlic, sliced

4 slices bacon, sliced into lardons (matchsticks)

~500g brussel sprouts, halved then sliced into ribbons

1/2 pkg spaghetti

Olive oil, salt & pepper

Gouda & parmigiano reggiano, grated (optional additions I would highly recommend)

In a large pan big enough to accommodate everything at the end, heat the pan on medium heat and add the bacon to render down its fat and a bit of olive oil.
In a separate pot, boil water and cook your spaghetti.

Once your bacon has rendered its fat but still soft, add the onions and cook till fragrant and translucent.

Add the brussel sprouts and sliced garlic to the onions & bacon, season with salt & pepper. Stir fry everything until the sprouts are softened, making sure to evenly mix through the bacon and onions. Make sure to add  a splash or two of water to help deglaze the bottom of the pan, cover and turn heat to low to finish cooking through.

Once noodles are cooked, drain noodles, reserve a cup of pasta water, then add to the brussel sprouts & bacon.

Turn off heat, combine until noodles are evenly mixed with sprouts. Add cheese, if using, then cover the pan for a couple of minutes to let the cheese melt, then thoroughly mix through the melty cheese as best you can.

Serve generously!

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Thoughts on first MMJ dose

Surprise!! 

Look what I had delivered to me on Friday, a whole three days earlier than Canada Post informed me of! 

 

So first thing: Ugh.. I think the Red killed my GI system :/ 

I woke up Saturday morning and pretty much projectile vomitted everything I consumed Friday; from my first consumed meal until bedtime. And then my tummy was all tender, owie, and stinging & burning. It was pretty much crackers, gingerale, gatorade and instant miso soup all day yesterday.

Either: 

A.) I had too much too soon (0.5ml Blue @2:30pm, 0.5ml Red @9:00pm)

B.) I didn’t take into consideration the crazy super high THC potency of the Red (THC 26.3mg/ml + CBD <0.7mg/ml) and should have perhaps taken only 0.25ml to account for it, being a completely new MMJ patient.

C) I got bad food poisoning.

The side effects of the Red were kind of fascinating compared to the Blue for completely different reasons (obviously).

My hearing got completely amped up — hard to describe, but it was like I was hearing three different tones or frequencies or… “Something” in every sound. OMG! The sound of TheHubbs™ snoring was so weird and cool all at the same time, and listening to my oxygen concentrator was so wild! 

I took the Red late at night about 9:00 pm with the intention/hope that it would help my perpetual insomnia + late night pain issues (and be solidly kicked in by bedtime), right before we started watching Star Wars (heh). By the end of the movie I was pretty much on my way to being completely stoned out of my mind. My body had a competing “walking fast forward through molasses feeling” that  I mentioned to BabyBro ^_^ 

I kind of got the giggles for awhile and I so wanted to tell TheHubbs all sorts of stuff (stupid stuff! I knew it was stupid in my head but wanted to tell him anyways to share in the stupid!!) but he was too tired to have any actual conversation and likely would have been supremely cranky & annoyed at me if I started rambling at him ;)

Right before bed I was absolutely starving and wanted a snack, but I was honestly scared that I would fall down the stairs and injure or break something because my sense of balance & self had just left me. I could stand and walk to the bathroom, albeit slowly, but I was pretty sure falling would be imminent if I even tried the stairs. 

Having said that, I did have about three crackers, and some water, and I think that the cannabis oil might have altogether shut down my digestive system and gave me major owie reflux and aspiration issues into my lungs. 

Note: NOT a great side effect for my already compromised GI system from SALLY, if it’s an actual side effect for me — see above re: barfing. Seriously. I take all those stomach drugs to get my intestines to push food straight through & for my stomach to empty contents faster, but the oil pretty much stopped it all.

Sleep was definitely heavy but I could feel sounds and my body doing weird things.

Then there was also the weird heart, chest issues… 

Which in hindsight may have actually been a really bad side effect to just be “enjoy watching from afar”. I think my heart was having difficulties pumping… Which, given the left side of my heart is already enlarged from the PAH, having my heart feel like it’s slowing down & struggling, may have been bad.

So, for now, I think the Red is going to be kept on the back burner; I definitely won’t take it again until the weekend at the earliest, so TheHubbs™ can be with me and keep an eye on things, and I am going to reduce my dose to the lowest recommended dose possible (0.25ml) and try to keep some accurate notes on how it affects me.

All that, and I am not going to mix oils. Maybe it’d be less conflicting if I were vaping to try different strains throughout the day, but oils are definitely not feeling like they’re going to benefit me if it causes that much in terms of side effects & discomfort. 

The Blue Oil was interesting because I could feel it come on in around my eyes & temples within a pretty short amount of time; say 15-30 minutes? I was chatting online & talking to The Boys in LA so I don’t actually know the exact time span. 

By comparison it also made me… Comfortable? I was totally holding off taking the oil and I was starting to have pain, so until TheHubbs™ got home around 1:30/2:00pm (new bed delivery!) I was really trying to distract myself from taking my normal pain meds because I wanted to test how well it worked for my chronic pain. It was great, needless to say. I was happy? At least, pretty pleased that it didnt take too long for pain relief to kick in. 

As a side note: I don’t like the way the oil dispenses. I have to use a super tiny (but accurate) syringe. Sticking it into the bottle makes the syring all oily and I feel like it wastes some of the oil by dripping all over. I wish there was a better way to administer it — I ended up squirting the oils onto a spoon and the consuming it that way, but the first time I accidentally squirted a drop onto my pants; those’ll be forever stained (TheHubbs™ cheekily asked me if my pants were gonna be forever stoned now :P)

Anyhow, I guess the Blue also makes me feel Awakened, but happily snoozy? 

I took a great short nap for maybe 20-30 minutes before we left for Mom & Dad’s and I swear: I have never had a nap feel that awesome. 

I woke up feeling pretty damn great ^_^ I was still kind of sleepy headed, but I was happy to be awake & mellowed and chilled. I never feel that way after a regular nap. BTW: Music sounded really awesome and oh man, I totally get grooving music from the 70s LOL! 

It also made Family Dinner feel way more… Tolerable. I didn’t have all the anxiety I’ve been getting from the last few weeks and I think I may have been ridiculously happy, cheery and perky. 

Also: I may have confused the shit out of Baby Skywalker explaining to her the merits and awesomeness of having real puppets/puppeteers performing alongside real actors (again) in Star Wars ^_^ She looked really confused as to why I would think puppets were so awesome when it comes to trying to get an audience to feel like another world & galaxy might actually exist, “A long time ago, in a galxy far, far, away…” vs. Watching CG creatures in a world that’s way too slick & shiny like a video game that you already know isn’t real and doesn’t exist.

Anyhow, I think on the whole, I feel pretty safe to attempt consuming  the Blue oil when I’m alone and by myself. For now, I am going to try using it more often as my first choice for pain relief. I have my first monthly appointment with FamDoc on Thursday since beng prescribed at NHS and I want to be able to tell him with absolute certainty which of the strains/oils have been of actual benefit to me and then we can hopefully start decreasing/eliminating my hardcore opioid/narcotics pain meds. That is the biggest goal we’ve got our sights set on if the medical marijuanna works for me.

Plus: I am seriously starting to contemplate the idea of vaporizing… And I think that’s my big conversation I need to have with him this week because if I could do that, then suddenly I have access to a much larger variety of strains to try and determine what works best for my pain. I really hate that we don’t have access to commercially made Medibles in Canada. It’s such a messy undertaking to make my own cannabutters/oils which can be used to make my own medicated edibles. >_<;;

Hmmm… So yeah! Both oils were great for my pain relief, so that’s at least been determined. Now’s just the experimentation to find which oil works best. Only problem is having extremely limited options in terms of actual available oils in stock. Mettrum has 2-3 so far, mostly reds. The Blue I totally got by fluke because I was humming and hawing over which Red to buy. And the Yellow I am still waiting for it to be restocked.

Tilray offers Oils and DROPS, but their first batch was a limited quantity run back in February and none of it has been back in stock since. This totally blows because I am thinking maybe I should consider changing LPs to a provider that actually has consistent stock onhand, like maybe: Broken Coast or Tweed.

*sigh* 

Moving forward with Medical Cannabis

Well this was an unexpected surprise ^_^

  
I didn’t think I was receiving a Tilray welcome package until I actually purchased something! 
As a side note: I wonder if it’s even a possibility that I could try using a vaporizer for medical cannabis/medical marijuana with all my combined auto-immune conditions from SALLY? I know that Health Canada “approves” of the Volcano Vaporizer for MMJ, but does anyone out there in the Intarwebz know if it’s (medically?) safe to vape with crappy lungs? 

I have absolutely no experience with any of this, so I’ve been having long, drawn-out, yet fascinating & informative, conversations with Whitey about all things medical marihuana (how Health Canada chooses to spell marijuana). His recommendation has always been to find some kind of commercially made Medibles (marijuana-infused edibles) like Kiva Confections. This is absolutely how I would prefer to go about slowly learning to medicate. Frustratingly, the only forms of medical marijuana available to us in Canada from LPs are the traditional buds and only most recently: oils.

I could certainly try to make my own tasty treats & concoctions, but trying to figure out the dosing calculations on homemade stuff just sounds like a terrible headache and potential nightmare. Not to mention the fact that TheHubbs™ and I both find the pervasive smell of recreationally used cannabis absolutely revolting (We’re looking at you, Vancouver!) so having that lingering smell in the house while I’m trying to make cannabutter or oils has pretty much been completely taken off the table. 

What I’d REALLY love is a Magical Butter Maker to help limit the smell of cannabis while making the butter/oil, but OMG it’s so expensive to do the US$/CDN$ conversion. *sniffle*

Having said that, if anyone out there would like to send me their products in exchange for having a patient-centred review of your product(s); I’m open-minded & might be keen. There doesn’t seem to be many companies out there interested in understanding what patients with chronic-illnesses or autoimmune diseases think or have to say about their products, from a social media aspect/perspective.

I guess the biggest reason why I keep coming back to the idea to try using a vaporizer (and I am seriously considering it but still waffling on whether or not to actually do so), is because my digestive system is kind of broken and slow as f*ck on a normal day; goodness only knows how long it would take to have the cannabis oils kick in once ingested. Chronic pain is the biggest issue I’m dealing with on a daily basis and I sure as hell don’t wannna be stuck taking an oil which could take up to 4 hours to kick in before the effects are felt for pain relief. Over time, the plan that FamDoc and I would really like to have happen is to entirely eliminate all the opioid pain meds I am currently taking, and hopefully have my GI system functioning a little more “normally”.

Using a Vaporizer (vaping) is supposedly approved by Health Canada, and kind of acceptable for lung patients, but I dunno how keen HawtDoc would be about it — I’d like to think (and am certainly hoping) that he’s open-minded and amenable to the idea, Rheumy too by the way. I’ve been reading a lot of articles recently, pointing to the benefits of MMJ for Scleroderma, and right now: FamDoc & I are hoping that Medical Marijuana will be a beneficial choice not just for the treatment of my chronic pain, but for all my associated conditions, all around. 

 

New Treatment Update.

Sooo… I met with the new Doc who will be overseeing my new treatment and I guess she will kimd of be working in tandem with FamDoc for my chronic pain care. She was super awesome & friendly.

To put it mildly, she was rather surprised at the monster combination of Sally & Co. and I have a follow-up in 2 months. She is confident that I will definitely get benefit from using Medical Cannabis and seems to be pretty hopeful that we’ll be able to slowly wean me off my current pain meds over time; it’ll be a ridiculously slow go, but she thinks it can be done. In fact, she said if I wanted to, I could try to start reducing it by a tiny little bit as I am working out the kinks of what works best for me with the MMJ (medical marijuana).

Since I don’t have the option to smoke, she’s hoping I will experiment with all the different options currently available: oils, tinctures, commercially made medibles, and if I am feeling brave enough to make my own cannabutter/oil, I can try different strains to see what works best for my pain over the next couple months and have some positive things to report back at my follow up.

Interestingly, while I was waiting for this appointment, an article from Scleroderma News popped up in one of my social media feeds: New Cannabinoid-based Drug Slows Fibrosis, Blocks Inflammation in Early Scleroderma Study.

Seeing as this is almost 8 hours later, The Dude was supposed to be doing all the provider signup for me and said I should be able to order stuff by the time I got home, except there was a voicemail message saying that he forgot to ask me for my mailing address to complete the application process. *Sigh* I really wish I could have started looking at stuff and put in an order tonight. I doubt the application kerfuffle will be rectified before the end of the weekend :P

Curiously, I don’t know if what I’ve been prescribed is considered “a lot” in the scheme of things, as I don’t even know the dose. The Dude had all my prescription information when he walked me down to the pharmacy to tell me about how I would order everything from my chosen provider. He did seem a bit surprised to read the scrip.

Once I get my signup information email, he recommended that I talk to the provider regarding compassionate pricing which would make things a little easier to manage, financially. Other than that, I am toying with the idea of getting a Magical Butter Machine so that if I decide to make that leap of making my own ‘medibles’, the MB2e may be a less stinky way of going about it. TheHubbs dispises the smell and to be honest, so do I.

So: Let the fun begin.

Rheumy Appointment

Yesterday I had my appointment with Rheumy, and it totally messed up my original plans for the evening. The appointment was for 120pm and I didn’t get out of the clinic until 4pm, making my originally intended plans for having dinner ready at an acceptable hour, impossible.

Anyhow.

So Rheumy still feels that Rituxan is the best course for treatment for me at this point in time. But HawtDoc’s reservations are pretty much rendering the treatment’s benefits nul & void as of now. We’d basically be starting my body all over again from scratch. I have an appointment next week for 6WT + ABG so that we can FINALLY get the ball rolling on having oxygen coverage from the province (at least!). After that, we’re going to have our chat regarding doing the steroid Prednisone for a month before reconsidering Rituxan.

From Rheumy’s perspective, she is wholly NOT keen on the idea of doing a round of steroids mainly because of the long term side effects it could cause me as I am already on a baseline steroid and have been since birth. There is a possibility that the pain in my hips is being caused by long term steroid use, but because of my baseline condition, unrelated to SALLY, there’s no chance of ever NOT having steroids in my body.

Having said that, I asked her opinion of CellCept and she was totally a-okay with the idea of switching out my Imuran (current baseline immuno-suppressant) for it. Apparently CellCept has been shown to be more beneficial for the treatment of Scleroderma, Lupus Nephritis & Interstitial Lung Disease than the Imuran. Given that I’ve been on the Imuran since we finished with the chemo drug Cytoxa (way back when), she would rather we swapped out the CellCept instead of giving me more ‘Roids.

We already know that the ‘Roids are going to make me:

A) Run around like a chicken with its head cut off
B) Eat everything in sight
C) Gain at least 10 pounds from the combination of “EAT. ALL. THE. THINGS!!” + Water Retention the steroids are famous for
D) EXTREMELY RAGEY (very NOT good at this time, given current family situation)

In the end, once we taper the dosage back to zero, my breathing will be back to the same feelings of suffocation as they do without them now. So the question becomes: When will we make a final decision on how to treat my conditions from this step forward?

 

So HawtDoc and I had a chat…

CT Scan from last week showed that there’s been no real change in the amount of permanent lung damage, but there are signs of inflammation going on.

Next week he’s going to be filling in all the paperwork to get oxygen coverage from (at the very least) Alberta Government, plus: he’s wants to book me in for a whole shwack of new baseline tests to be done before Christmas; mainly for the oxygen coverage to be accepted, but also because he was toying with the idea of putting me on 2 weeks of Prednisone to see if my breathing improves. If not, then we move forward to the Rituxan, but he’s still feeling hesitant & unsure as to whether Rituxan Treatment is a good idea for me.
As a side note: if we don’t opt for the Prednisone route, we could try changing my Imuran to Cellcept but he has noticed that 30% of his patients have unpleasant GI side effects (yippee diarrhea :P ) and tummy upset.
*sigh* Nothing is easy with SALLY, is it?

Guess who has their favourite Easy Pulse back?!?

 OMG SO HAPPY!!! 2lbs of excess equipment weight is finally gone! :D 

As a side note: the Respiratory Therapist (henceforth called Resp Therapist-L) that visits every 6mos for assessments did a quick & dirty 6 minute room air walk test on me to see if she can finally get me government oxygen funding coverage.  

 

I am pleased(?!?) to say that I “failed” the quick & dirty test, so I’m off to do the official testing at PLC in a few weeks. As a bit of back story to the whole funding thing: it’s only been very recently that the pre-requisites for getting government funding had changed. 

I didn’t know, but apparently RespTher-L tried applying in the past but because they use BMI as one of the criteria pre-reqs (again didn’t know) she couldn’t get me past the first application step. 

Problem is: BMI is a generally useless indicator for complicated situations like mine and the application process doesn’t take into account things like steroid-water weight, so they denied the applications right off the bat. 

RespTherapist-L also mentioned she’s got a couple of backup plans in her head to try, should I still be declined for the government funding (OMG the hoops and shit!!! >_<;;;): 

  1. She is going to have Nurse-G contact the other patient oxygen funding group(??) to see if she can get us assistance through them.
  2. In the worst case scenario if THAT doesn’t pan out, RTL will try asking her supervisor at the Oxygen Company if they would be able to consider reducing my monthly oxygen bill payments since we’ve been a customer with them for 5-ish years now and TheHubbs’ new job no longer includes oxygen coverage in their benefits plan. 

Cross your fingers for me so we can finally get government assistance to help pay for my oxygen.

Someone I am truly thankful for…

Seeing as (Canadian) Thanksgiving is just around the corner a few days from now, I just couldn’t miss out on the chance to take a picture with this gentleman even though I was looking & feeling a little rough around the edges today.

This guy, FamDoc, is all sorts of awesomeness and has been a great partner in crime on this bumpy adventure with SALLY since the very beginning. 

It’s not often I say out loud that I am thankful or that I love my doctors for the work they do to keep me as healthy as possible; in FamDoc’s case it’s warranted and true.

 I ❤️FamDoc!

 

I love the comment a friend left for me on FB regarding this pic: “Looks like The Doctor and Clara” ^_^

Slightly confusing change of plans…

Sooo… I’ve had a few days to think about the most recent thoughts from HawtDoc.

At the beginning of last week I called HawtDoc’s office and left a message regarding getting an update as to what the plan was for beginning the second round of Rituximab. I got a call at the end of last week from HawtDoc’s receptionist telling me that she is in the process of trying to get me in for another Chest CT Scan and then he’d like to see me afterwards to talk. At the moment, he is not planning to do another round.

This kind of leaves me in a bit of confusion, limbo and some fair bit of concern as to what’s going on — I know that he’s personally overseeing the infusion treatments, but I didn’t know that he was going to officially be calling the shots as to whether or not we proceed with treatments. It took us three whole years to get us to this point in time where we could actually move forward with doing infusion treatments and now we’re stalled.

I’m not angry by any means. I’m not even really frustrated by the whole thing — what I am is a tad bit concerned that perhaps all the tests we did recently (Echocardiogram, Abdominal Ultrasound, Chest Xrays, etc) may have popped up something that he’s not telling me about; but it’s not so serious that it’s requiring me to come in ASAP to discuss options, so he’s waiting on a CT Scan to confirm his suspicions. Since my biggest concerning side effect from the first round of Rituximab was chest pain and difficulties breathing, it’s not like the PFTs I did are definitive in showing improvement when the numbers are going from 52% to 54% functionality. The change in numbers was pretty negligable, if anything, so I am guessing they mean practically very little to HawtDoc in the scheme of things.

So… I’m stuck.

I’m waiting.

I’m worried, but I’m not.

The thing I hate most is uncertainty and no clear directional path of what comes next.