There was a snow advisory last night and I spent about five minutes or so outside to pick Miyu up from her grandparents (they live about a 2-3 minute walk away from us, I met them halfway). When I came back inside, my hands looked like this:
As part of my mixed connective tissue disease, I also have something called Raynaud’s Syndrome. Basically, I lose circulation in my fingers and sometimes my toes when I’m exposed to cold temperatures. It’s like that feeling when your leg or foot falls asleep. It’s an aching numbness and it takes a while to go away. For me, my hand warmer really helps with this.
On Monday, January 18, we went to see my rheumatologist who prescribed me Plaquenil (200mg). I’m supposed to alternate the dosage—2 pills one day, 1 pill the next day, repeat. One month supply costs ¥19,380 or roughly $200. Yikes. At my next appointment I will need to verify with my rheumatologist whether he can prescribe me the generic version (Hydroxychloroquine). If not, my American doctor will provide me a prescription so that I can purchase a mail-order for the generic brand from an online pharmacy in the U.S.
So… I started with two pills on Tuesday, January 19. What I did notice on Day 2 (Wednesday) was that in the morning, I felt a little bit better. It’s hard to tell though because the barometric pressure was also 1017 hPA for the second day in a row, so that may have attributed to an improvement on pain levels. Since about mid-December, my entire left leg and hips have been hurting, making it hard for me to walk and stand up from a seated position. Sometimes I’m laying in bed trying to get comfortable and my left knee pops as I’m straightening it out and it’s so painful and sudden that I actually cry/curse out loud. Also, my right middle finger has been stiff and swollen for over a month, and my upper right back makes it so that it’s painful for me to raise or fully extend my right arm.
Dr. Matsueda said it can take two to four weeks for me to start seeing results. He had warned me that if I get a rash in the first 1-2 days, I should immediately stop the medication. Also, if I am having any trouble with my vision, I should immediately stop.
That morning when I first took Plaquenil, I had just finished eating my breakfast and Miyu was getting dressed for school. I asked her to pray that this medicine will make me better. I was a bit surprised when she took my request quite literally because a few moments later, she was kneeling in front of our shrine arrow. If I remember correctly, I think she prayed first in English and then in Japanese, LOL. My daughter is so kind and sweet, and I am ever grateful. 🥰
A few other things I’ve learned recently are:
I have the worst reaction (severe pain for days) when I ingest anything containing dairy and any milk derivatives
I can tolerate a few slices of bread per week with very mild pain
I can drink my favorite hot white chocolate mocha with almond milk and no whip cream from Starbucks without any adverse reaction (I might ache in my fingers and wrists for a few hours from the sugar but it goes away after about a day)
My energy levels drop significantly in the evening, which incites pain
I get headaches before my period and I’ve found that drinking one or two cups of coffee really helps, probably due to the higher caffeine content. I drink pure (Japanese) green tea regularly, which has caffeine in it, but I guess it’s not enough to prevent/deal with my monthly headaches.
Some things I’ve started to implement in order to help manage my pain better:
Take regular Epsom salt baths. The first time I think the water was too hot and when I got out, I was really dizzy and lightheaded. Otherwise, I’ve found them to be relaxing and it does help a little bit. I can only stand to be in there for 20 minutes at a time though. For some reason I get anxiety if I stay too long. Like I’m being lazy or too indulgent. Plus, my fingers get pruny, it becomes stifling in the shower room, and I have to constantly rewet my face. The latter is what prevents me from enjoying my Kindle Oasis in the bath tub. Maybe I’m just not really one of those luxuriant bath-taker types? LOL
I bought a hand warmer which works so well whenever my fingers turn cold. Sometimes I’m just at my desk as I’m doing now and out of nowhere, a few of my fingers will start to feel ice cold and numb. It’s as if I had stuck them in the freezer for a few minutes. Really bizarre.
Drinking tea with and in between meals (rotating between: Green, Burdock, Ginger, Chamomile, Mugwort, and Artemisia Annua)
I take naps whenever I can
Apparently pulmonary hypertension is a big cause of death for MCTD patients, and I can totally see why. Sometimes I’m just walking around the house doing chores and I notice my chest starting to ache and my heart beating fast—almost painfully. For those moments, I make sure to sit down and rest. Sigh. I think I’m finally getting to that point where I’m accepting my body’s limitations and making peace with that. I’m thankful that I’ve now started my medication, at least, and am finally on the road to recovery. The path may not be an easy one, but it’s a path nevertheless and as always, I’m looking ever forward.
So far, leaving my T2i on the kitchen window sill has been working out nicely. I took these shots last week because all of the sudden, as I was sitting at the dining table sipping on my tea, I noticed Miyu’s marshmallow cheeks and thought to myself, wow, what happened? She’s so big now! In the second shot, I think it’s fascinating to see elements of Ken’s and my face on hers. So eerie, but in a wonderfully cute way.
Last Sunday, I asked Ken to go to my office and clean out the remaining mess I left behind. He had a little help as well. 🙂
Note: If you are unable to play the video on Google Chrome, check to make sure popup blockers are disabled, or try using an Incognito window. I was unable to play this video on Chrome for iPad and iPhone until I turned off the popup blocker. In Chrome, go to Settings > Content Settings > Block Popups (Off). If all else fails, try Safari on mobile devices.
It’s taken me a while to realize that I need to change a few things concerning my approach to photography. First of all, I’ve decided that I will be going back to the Canon system for good. I love my Fuji X-T2, I really do, but the ergonomics are simply not there for me. I’ve found myself reaching for my T2i more often than not because it’s so much more comfortable to hold in my hands. I’ll be getting a new Canon camera hopefully sometime this year, cross fingers and toes!
With that said, here are the things I’m going to change this year:
Keep my “big cameras” out in the open, within easy reach. I’ll have to find a dedicated spot on my desk for my X-T2 (and its replacement), and then another spot on either the kitchen counter or book shelf for my T2i. I no longer see a point in keeping them cooped up in a dark cupboard.
Invest in good glass. I’m considering the 24-70mm F2.8 for my first RF L series collection.
Find good lighting spots in our house. Observe how those spots change throughout the morning, day, and evening.
Tell a story/Capture moments every week. Basically, pick up the cameras on a regular basis. No stress, no pressure. If I’m stressed, I’ll simply use my iPhone, or not take photos at all.
Edit photos monthly, only keep the best. Stay organized!