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 6th 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
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
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