The Week That Was, January 29th

The good patch I had earlier this month has definitely ended and the last two weeks have been pretty rough. I’m having trouble sleeping, eating, and breathing (along with the usual standing and walking). I keep thinking “how did it get so hard to just be a human being?” It’s pretty absurd. Aside from these obvious things, my spirit is strong right now, stronger than it has been in a long time. I hope that lasts awhile.

-I finally saw my GI doctor last week for the first time in a year and a half. Last time I saw him, I explained that after all the trial and error we went through to manage my Dumping Syndrome, all the prescriptions we tried that failed, my GI issues were starting to stabilize since I had stopped working and started using imodium every morning. The GI issues are still my most difficult Dysautonomia symptom to manage but not working has made a huge difference in managing it. When I told him this, he basically broke up with me: “just call me when you need me.” I had finally got back to my normal weight then. It was such a struggle to keep weight on while I was working.

I kept that weight on for a good year. Sadly, since I’ve had an intestinal infection the last few months I’m back to the weight I was when I was working, which feels like failure. I’ve lost about 10 lbs. When I first got ill in 2010, I had an infection then also but I lost 20 lbs that time. Luckily, this has not been as bad. He gave me some awful liquid medication that’s cherry mint flavored (the horror!) and if that doesn’t work, I switch to an antibiotic. Hopefully the liquid medication will finally take care of it.

My medicine and husband's "medicine"

We should start a petition to stop pharmaceutical companies from adding awful flavors to medications. I can still taste the bubblegum amoxicillin my sister and I were always on when we were young. I'm sure that flavor stands out to so many people from their childhood. Awful.

-I finally got a hair cut! It’s been about 6 months. I had to cancel my appointment multiple times but I finally made it yesterday. It’s amazing how such simple tasks so many take for granted can be mountains to climb when you are ill. It’s been two years since I’ve dyed my hair and that’s my next goal. The prospect of sitting up in a chair for 1-2 hours is a bit daunting. Before I got ill, I got my hair done every few months. I have been dyeing it since junior high so I had no idea what my natural color even looked like. But when I started losing handfuls of hair and illness took over my life, it became a non-priority. I want to make it a priority again because even though I don’t get out much, it helps me feel better about myself.

Bella got a cameo appearance

Even though our energy is so limited, I think it’s important not to lose the rituals of self-care during illness. I know that when I look better on the outside than I feel on the inside that always gives me a boost of self-esteem, a jolt of determination to power through the physical symptoms.

-We have been watching my oldest nephew most Fridays now and his younger brother has been so disappointed that he hasn’t been able to come. He called my husband last week and said “Uncle Dave, can I please come play Mario and eat gummi bears with you?” So my sister-in-law dropped him off on Monday and we granted his wish. After we played video games, he requested to watch a movie and he asked to watch Harry Potter. I was so proud I could’ve shed a tear. So we watched the first movie and I taught him some Potter spells to recite with the wand my husband made me. It was a great day.

-Even though I haven’t performed in almost two years and I’ve had to stop singing because of Myasthenia, I’m still committed to improving as a musician. Music will always be my greatest joy. It also helps me escape the physical symptoms and just wade in a vast ocean of melody for a short while—until my energy runs out. One of my goals still is to learn or memorize at least one song a week. Nat Cole has been one of my favorite musicians for most of my life and sadly most people have no idea what an accomplished jazz pianist and organist he was. Many only listen to him at Christmas time. I really recommend any of his recordings he did with his trio. I’ve avoided learning one of his most popular songs, "Stardust," for years because it's so challenging, but I’ve been trying to tackle it. My sister loves this song so I’m hoping to play it for her sometime.

-Speaking of jazz, here’s something hilarious. Jazz is my favorite genre of music. It’s my heart and soul, but some of the stereotypes about the genre are admittedly deserved.  Comedian Jon Benjamin decided to make an experimental jazz album so he got a group of accomplished jazz musicians and joined them on piano. Except, he doesn’t know how to play piano. Hilarity ensues. What’s funny, is some of the music could actually pass. Miles Davis said there are no wrong notes in jazz, so I guess you have to give it to him. This really is jazz. I played it for husband (who does not share my love of jazz) and he laughed. Listen to that gorgeous song by Nat Cole above, and then take a listen to this and have a good laugh:

-This is my 6^th post this month! That’s the most I’ve ever gotten up in a month so I’m feeling pretty good about myself. I’ve got more posts in the works and I’m hoping to get more interviews and guest posts up too. Stay tuned!

Some links from the week:  

Something long overdue: Lego created a disabled minfig

A new book that looks at the empirical research of “mind over matter.” I’ve added it to my must-read list for this year

A great article by a fellow Spoonie about overcoming the mind/body divide in Western medicine

My BFF Carrie Anne outlines some of her goals for the new year

A woman describes something so many of us know too well: her dangerous symptoms were dismissed by a doctor as “just anxiety.” A few days later, she had a heart attack.  Another example of the very real consequences of the gender bias in medicine

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.