Friday, January 8, 2016

The Week that Was, January 8th

I'm considering trying to write some weekly or bi-weekly updates on the blog to supplement the longer, topic-driven posts I usually write. I always need a reason and purpose for doing anything here, especially to convince myself that this is not an exercise in narcissism, so doing this might highlight a bit of “slice of life” of living with illness, with emphasis on “living” to show that although there is sickness here there is life too. This might help me post more too.

I had a bit of a miraculous week this week. Let the record show, it is possible to have an ok week!

* The last few months have been especially rough. I felt like I’ve been just surviving day to day, so a week where I wasn’t just surviving has been a welcome change. I think the insanely expensive, medical-grade probiotics I’ve been using are helping. I'm taking them to kill my current intestinal infection and to treat the constant oral thrush I have, which is caused by my steroid inhaler and rescue inhaler I have to use multiple times a day. I have to use the inhalers to help offset the respiratory weakness from Myasthenia. Ah, the constant struggle to manage side effects and even side effects of side effects. Sometimes it’s more difficult than managing the primary illness. 

But I think they are helping. With how expensive they are, they better. My GI doctor originally gave me these probiotics and when I see him again in two weeks I need to ask him for a cheaper option because these are out-of-pocket, not a prescription. Oof. 

Designer-priced bacteria
* So I took advantage of this miraculous week and my husband and I went to our local arts center (which we had inexcusably never been to) that’s right down the street. They have an exhibit of one of my favorite artists, Alphonse Mucha. My mom loved him and some of my first memories are staring at the prints she had of his work. Now I have one of her prints and some of my own. The exhibit ends this weekend and I would’ve never forgiven myself if I had missed it. They had some original drawings, some prints and lithographs, and a lot of information about what inspired him and his life. I had no idea that his nationalist sentiments were so pivotal to his work. It was a great experience.

I can’t remember the last time my husband and I went somewhere for fun together that wasn’t appointment-related so something like this was overdue. Despite the fact that my husband is also my caregiver, I’m learning it’s important to still maintain our relationship as husband and wife—to cultivate and nurture that role just as I did before I got ill. We are always trying to come up with things to do together.

The building was luckily very accessible and had an elevator to get to the other floors, which is always welcome. I’m hoping we can go there again when they have other exhibits.

* Although, there is constant debate about whether those with chronic illness and autoimmune diseases should get a flu shot, I get one every year. If you aren’t sure if you should or not, talk to your doctor about it. For me, the risk of getting the flu outweighs whatever risk there is with the immunization. I’ve never had a problem with it. I always get it in January but I swore last year I was going to get it when it came out in October. I still haven’t gotten it.

So yesterday, we headed out to Costco so I could finally get the shot. I was feeling really terrible yesterday (likely the fallout from our outing) so while we were in the car I told husband I didn’t want to go. As we circled back home, we drove by a new thrift store and I suggested we make a quick stop. We went for a few minutes and then husband rolled me over to the used bookstore next to it. I picked up a few books I’ve wanted for a long time. We left the house together for something fun TWICE this week. It’s unbelievable.

I probably should’ve spent yesterday resting or really pushed myself to finally get my flu shot, but I spend most of my life making good decisions and doing whatever my body demands that I do. I guess sometimes it’s ok to not make good decisions in favor of living a little.

* I talk to quite a few Spoonies on Twitter and I had a conversation yesterday with someone in Canada. She posted a picture of an accessible dressing room that looked like a dream but then explained that unlike the Americans with Disabilities Act we have here in the states, Canada has no comparable legislation. Someone else chimed in and said the Netherlands also does not. I had no idea so many industrialized nations, even ones who are politically more progressive than this country, have no accessibility legislation. They have no legal recourse to ensure public places are accessible. It solidified for me that disabled rights are a global issue, not just a national or local issue. Although the ADA has limitations and lacks enforcement, it does provide legal protection and makes the disabled a protected class of citizens in this country. We definitely have more work to do globally.

* When I’m feeling slightly better, it’s like a veil is lifted from my life, the perpetual shadow recedes and I can think about the future instead of just surviving moment to moment or each day. As I’ve been feeling better this week, I’ve been thinking more about changes and additions I want to make to this blog and my ultimate project of writing a book. I still have so much research, reading, and planning to do. I started reading Laurie Edwards' In the Kingdom of the Sick, which I’ve started multiple times but never finished. Eventually I’ll have a review of it in the Spoonie Reads section (along with all the other books I finished recently).

*It's been rainy here all week (who knew that was possible in California?) and playing my keyboard while it rains is one of my favorite things to do. I've been playing one of my favorite standards, "When Sunny Gets Blue," which is a perfect rainy day song: "Pitter, patter. Pitter, patter. Love is gone so what could matter?"

* One of my Spoonie friends who I talk to regularly (I even sent her a Christmas card) sent me a link to this great article about what it’s really like to live with chronic illness, in contrast to media representations of illness. It’s a great read. I also recommend this article from a woman on the patient advisory board at Dysautonomia International about her struggle to get a diagnosis for POTS. 

* I have to do an MRI at Stanford next week so I'm trying to mentally prepare for the long trek. Our last trip there wiped me out for weeks so I'm hoping this trip won't be quite so exhausting.

* I have exercised almost every day this week, wrote two blog posts, and I’m having kind of a good hair day today. A miraculous week indeed.

I hope that all of you are having an ok week.


  1. Yay art! It's BEAUTIFUL. I love that photo. YAY BOOKSTORE!!! I want that Oliver Sacks book too, and I'm pretty sure I have the Gloria Steinem on my to-read list. We should book-club it. I'm a slow reader now, so it might take me a while. Also, email me what kind of exercises you've been doing. I'm curious.

  2. So glad to hear your week went better, Stefanie.

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