Since moving two years ago, there have been a whole lot of non-work related cultural events I've attended (work related = concerts and plays that are not quite Must Attend but really kind of are). A short list:
Dance: BoSoma Dance, Dorrance Dance, Pacific Northwest Ballet
Music: Coeur de Pirate, Cyndi Lauper/Boy George, Sybarite5, Bryan Ferry, Duran Duran, Jethro Tull Opera, Sinatra celebration, Bruno Mars
Plays: Hamilton, Elf, Once
Here's the problem: I hate audiences. Terry has a great way to suggest to audiences that they put away their phones (which, duh) but it's not that - although seriously, people, stop. That crappy video or photo can just wait. Be in the moment, enjoy the show.
No, for me it's audience behavior. Not when I'm at a show like Elf, which has a definite younger audience skew and is going to be filled with squealing children. I accept that. It's the older folks, the ones who should know better and who still, somehow, for some reason behave really badly.
Example? The group of six friends (female) sitting in front of my row who did not stop talking and laughing throughout the concert. There was no song they listened to, no moment they focused on, it was all talk and laughing all the time. Until close to the end, when Thing One said "will you please just shut up for one song?" and they looked shocked. Even more shocking, everyone in my row made it clear that yes, shutting up for a short while would be a very nice thing for the rest of us trying to enjoy a concert we'd paid money for.
Example? The two women who insisted on standing and dancing during a concert, despite complaints from a wide swath of people who could not see the stage. The ushers should have moved them but for whatever reason, they didn't (when approached, the women argued and refused to move). By 30 minutes, everyone in that area was moving. By intermission, it looked as though a huge number of seats hadn't been sold and people either were standing on the sides or leaving. All because two people decided they were more important than everyone else's enjoyment.
Neither of those was a "those young'uns" moment. They were all close to my age, if not older.
I don't have a ton of discretionary income. But I do like going to things, I do like music and dance and theatre, and when selfish audience members interrupt that good time? It makes me less likely to want to spend my money on those events. It's ruining the enjoyment for younger people in addition to teaching them bad habits when in a public space. Which, of course, feeds on itself.
7.8.17
Wrong adjective
When I first started driving back in the 70s, I didn't need a car because I was away at school (even when I was in college, because I got to borrow my father's car during class time). Then I moved to NYC and never thought to buy because NYC. Renting when needed was a far better option. Then, 12 years ago, I moved out of NYC to the 'burbs and needed a car.
It was a great experience, finally feeling like an adult: I owned a car. Shortly thereafter, I also bought a house. Really racking up those adulting points, right?
Sadly, my car was totalled, so I had to buy a new one. And because I worked over 30 miles from my home, leasing wasn't an option. Then I moved to a new school, a new residence and didn't drive more than 10 miles a week (work being a 3.5 minute stroll from my front door), so suddenly leasing was an option. And there was a sweet trade-in deal, so leasing, here I come.
That was three years ago and the lease was up. So here I go, putting on my big girl pants and visiting the dealership looking to either buy out the car or lease a new one. The best part was that the salesguy talked to me, not Thing One (who literally and metaphorically came along for the ride) and was quite helpful exploring options.
The worst part? The 3.5 hours it took, between the schmoozing, the checking with the credit bureau, the schmoozing, the looking at the current car, etc.. And then came Mr. Business Manager, who schmoozed some more. In fact, his opening question was, "are you excited?"
No. I'm not. I'm not a conspicuous consumption person. I don't need the Next! New! Exciting! Upgrade! and that "new car smell" makes me sick. I need a basic car that will get me to and from work, to and from a few conferences, to and from family, and possibly a day trip or longer vacation. All those surveys about "if your car were a person, what type of person would it be?" leave me in giggles. It's a car, people. It has no personality. And my self worth is not now, has never been, nor will it ever be determined by the clothes I wear, the car I buy, the neighborhood in which I live, etc..
Was I excited? No. I was tired. I was eager to get this process done with. I was pleased that I was being taken seriously as a customer. I was annoyed by all the delay and schmoozing.
I get it, salesmen gotta sale. But please, not around me. Or if you absolutely must, don't ask if I'm excited.
It was a great experience, finally feeling like an adult: I owned a car. Shortly thereafter, I also bought a house. Really racking up those adulting points, right?
Sadly, my car was totalled, so I had to buy a new one. And because I worked over 30 miles from my home, leasing wasn't an option. Then I moved to a new school, a new residence and didn't drive more than 10 miles a week (work being a 3.5 minute stroll from my front door), so suddenly leasing was an option. And there was a sweet trade-in deal, so leasing, here I come.
That was three years ago and the lease was up. So here I go, putting on my big girl pants and visiting the dealership looking to either buy out the car or lease a new one. The best part was that the salesguy talked to me, not Thing One (who literally and metaphorically came along for the ride) and was quite helpful exploring options.
The worst part? The 3.5 hours it took, between the schmoozing, the checking with the credit bureau, the schmoozing, the looking at the current car, etc.. And then came Mr. Business Manager, who schmoozed some more. In fact, his opening question was, "are you excited?"
No. I'm not. I'm not a conspicuous consumption person. I don't need the Next! New! Exciting! Upgrade! and that "new car smell" makes me sick. I need a basic car that will get me to and from work, to and from a few conferences, to and from family, and possibly a day trip or longer vacation. All those surveys about "if your car were a person, what type of person would it be?" leave me in giggles. It's a car, people. It has no personality. And my self worth is not now, has never been, nor will it ever be determined by the clothes I wear, the car I buy, the neighborhood in which I live, etc..
Was I excited? No. I was tired. I was eager to get this process done with. I was pleased that I was being taken seriously as a customer. I was annoyed by all the delay and schmoozing.
I get it, salesmen gotta sale. But please, not around me. Or if you absolutely must, don't ask if I'm excited.
3.8.17
Boxes, Boxes Everwhere
Many, many years ago, my BFF Karen and I used to play Barbies. As I recall, we weren't particularly good at it, each vying for the fewest, cleanest (dare I say, minimalist?) lives for our gal. This was in the Buy Everything 1970s, a time when Barbie came as one doll with thousands of potential outfits.
Flash forward several decades and once again, minimalism is a thing. I've blogged about it before. This past week, I've been Home Alone and Getting Things Done, including re-weeding my books and looking through my closet and drawers for things to toss or give away. Here's what's leaving the house as donations to local charity shops or school for sale:
I'm feeling pretty good about this!
Fun fact: the house Karen lived in was sold to author Grace Lin's family. Cool, right?Anyway, we didn't trade outfits or accessories, we pretty much decided which we had that we didn't want. Not quite sure why, but we did.
Flash forward several decades and once again, minimalism is a thing. I've blogged about it before. This past week, I've been Home Alone and Getting Things Done, including re-weeding my books and looking through my closet and drawers for things to toss or give away. Here's what's leaving the house as donations to local charity shops or school for sale:
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I'm feeling pretty good about this!
31.7.17
28.7.17
Face Value
Because it's summer, and because Prednisone really does start to bring back ever-popular acne, I decided to get a facial. Now, I've had many over the years in a variety of settings and from a variety of aestheticians. In other words, I'm no newbie. Plus, between my daily routine (which includes lots of sunscreen, even in winter, and sunglasses) and genes, I don't look my nearly 55 years.
This time, I was told that I had gorgeous skin. That I was clearly doing the right things. But... I should come back every three months for "cell renewal" and every six months for "deep treatment". Because... I guess I don't look young enough? I need to do more? I could be more gorgeous? The upsell was so strong here that I just knew I'd never be back.
Most places promote products. I'm happy with what I use, and if I am in the market for something new there are places to go where I can get something that also works, or works better. But the promotion part I understand and can deal with. Just say no, right?
When I'm told that I could use "education" and need a rigid regime to keep looking young? Just Say No. I'm happy with the way I look... mostly. The things I'm not happy about, I can live with (and have, for over half a century). And - most important - looking my age is not a crime. It shows experience. It shows a life lived. It shows I have more to do than worry about things like fine age lines and sagging skin and age spots.
And that's ok.
This time, I was told that I had gorgeous skin. That I was clearly doing the right things. But... I should come back every three months for "cell renewal" and every six months for "deep treatment". Because... I guess I don't look young enough? I need to do more? I could be more gorgeous? The upsell was so strong here that I just knew I'd never be back.
Most places promote products. I'm happy with what I use, and if I am in the market for something new there are places to go where I can get something that also works, or works better. But the promotion part I understand and can deal with. Just say no, right?
When I'm told that I could use "education" and need a rigid regime to keep looking young? Just Say No. I'm happy with the way I look... mostly. The things I'm not happy about, I can live with (and have, for over half a century). And - most important - looking my age is not a crime. It shows experience. It shows a life lived. It shows I have more to do than worry about things like fine age lines and sagging skin and age spots.
And that's ok.
26.7.17
Getting Things Done
Thanks to my doctor prescribing Prednisone, the past two weeks have been relatively productive. Unsure how that works? Well, about 30-45min post-dosage, I start to feel a rush. A caffeine rush. A five shots of espresso caffeine rush. And then... Things Get Done. Most of the physical stuff is finished, so now I'm binge watching tv while organizing efiles and doing other cyberwork.
As part of that organization, the Do This Now folder on my desktop is open and I'm trying to figure out what that "Do This" means, now that "Now" is here (as opposed to the "when you saved this" of several years ago). While dealing with this health issue, figuring out what's going to happen at work this coming year and trying to help my in-declining-health parents isn't exactly stressful, it's not exactly easy going either. So it feels like the right time to post this as a reminder to myself, and others:
As part of that organization, the Do This Now folder on my desktop is open and I'm trying to figure out what that "Do This" means, now that "Now" is here (as opposed to the "when you saved this" of several years ago). While dealing with this health issue, figuring out what's going to happen at work this coming year and trying to help my in-declining-health parents isn't exactly stressful, it's not exactly easy going either. So it feels like the right time to post this as a reminder to myself, and others:
- Be present with whatever you are doing and whoever you are with.
- Add something beautiful to your life on a daily basis (e.g., flowers).
- Do some enjoyable activities whenever possible.
- Walk, work, and eat at a relaxed pace.
- Take a short break after meals to relax.
- If possible, go outside at least once per day and notice the simple things such as the weather, scenery, etc.
- During the day, whenever you remember, notice and tension in your body (jaw, neck, diaphragm, shoulders, etc.). Breathe deeply and gently stretch and relax any tense areas.
- If you notice your mind racing or worrying about the past or future, take a minute to breathe deeply and gently focus on something in the moment such as your breath, scenery, birds. Try an emotional shift.
- Wear comfortable and loose clothing when possible. Take off your shoes when you can.
- Avoid holding in feelings day after day, but instead, find a safe place to feel, express and embrace them.
(via)
17.7.17
A Study of (my) Reading Habits
It's no surprise that I've been reading for a very long time. And that my blogging has lagged recently. So this meme, via Terry (who got it elsewhere) is a perfect way to blog... about reading.
PART ONE
1. What was your favorite book as a child? Good Night, Moon, which feels like a cop out because, well, it's perfect.
2. What’s the last really good book you read? Because I'm on a book award committee, I can't give you the last really good adult book, but in the children's/YA category Dreamland Burning, a wonderful retelling of the Tulsa riots (or pogroms, choose your word) in the 1920s.
3. Do you prefer fiction or nonfiction? Fiction.
4. Do you finish every book that you start? If you don’t, how do you decide when to stop reading? It took me nearly 50 years, but I am no longer a 'clean plate' reader. For the award, I have to read 100 pages of books I request. For other books, 50 pages and out.
5. List your ten favorite books in four minutes or less. Write it down because you’ll revisit it at the end. Oh no. I just can't. Which genre? I could list ten favorite authors, or ten in a specific genre, but overall? Nope. Just can't.
6. Do you reread books? Which ones? I aspire to having the time, and fewer books on Mt. Bookpile to reread. Which would be the oeuvre of Julian Barnes and Robertson Davies, the Chalet School series and several other past favorites, like Shadow Castle and Possession.
7. Do you read poetry? Why or why not? Not usually, because books in verse feel forced. But occasionally I do and I'm always glad.
8. Do you remember the first “grown-up” book you read? Leaving aside that many books I read as a child were actually adult books (Treasure Island and Little Women were not written for kids!) and the Lord of the Rings trilogy (read when I was 9-10), Mistress of Mellyn by Victoria Holt. I'll admit a lot of it went over my head and on rereading years later I was quite surprised.
9. Are there any authors whose work you have read completely? Robertson Davies. C.S. Lewis. A.S. Byatt. Julian Barnes. And many, many mystery and YA writers (like Rex Stout and Garth Nix)
10. How often do you read books that are more than one hundred years old? Right now, rarely. But when I finish with this book award, probably once or twice a year.
11. Is there a type (or types) of book you never read? Not really. Unless you count textbooks.
12. How do you choose what to read? Reviews and recommendations from colleagues, professional publications, students and friends.
PART TWO
13. What’s more important to you: the way a book is written, or what the book is about? The way it's written. A well-written book can transform a dull topic (see, The Immortal Life of Henrietta Lacks) and a poorly-written one can kill a great topic (not naming names).
14. What author, living or dead, would you most like to have dinner with? C.S. Lewis
15. If you could hang out with a literary character for the day, who would it be? I want to be bold and say Pippi Longstocking, but at my age I'm just not up for that level of activity.
16. If you could be a literary character, who would it be? I have no idea.
17. Have you ever written a fan letter to an author? No. I've never been tempted, either.
18. Is there any book that, if I professed to love it, you would be turned off? Is there any book that would impress you in particular? Nothing would impress me, but if you said A Confederacy of Dunces I wouldn't accept book recommendations from you.
19. Is there a book you feel embarrassed about liking? Nope. An adult reading picture books, middle grade books and YA books really doesn't feel that way about reading. Perhaps an occupational hazard?
20. Are there books you feel proud of liking or having finished? Again nope.
21. Have you ever lied about having read a book? Yes. Mostly books I was supposed to read when I was in school, like Revolt of the Masses by Ortega.
22. Do you keep track of the books you read? Not before 2007. Now I use GoodReads and a notebook for my award reads.
23. How do you form opinions about what you read? Is it engaging? Do I buy the world (fictional or non) that the author is presenting? How does it compare to other books I've read?
24. What authors do you think are overrated? Underrated? My lips are sealed. Doing Readers Advisory for a living means I love all books, all authors. Publicly, at least.
PART THREE
25. Do you ever read self-help books? On occasion. Last one? Life Changing Magic of Tidying Up.
26. What’s a book that shocked you? Can't think of one. I'm sure there were, though.
27. If you could force every person you know to read one book, what would it be? I'd never.
28. What book would you recommend to me in particular? I don’t know you. (Terry's response, recycled here because it's accurate)
29. What books/authors have you been meaning to read for years? Why haven’t you read them yet? Anthony Trollope, because I think I need some really dedicated reading time. And Mt. Bookpile, of course.
30. What kind of book do you consider “a guilty pleasure?” I'm nearly 55. I don't have "guilty" pleasures, just pleasures.
31. Has a book ever changed your mind about something? No. Not really.
32. If you were terminally ill, what book or books would you read? As much of Mt. Bookpile as possible.
33. Do you have any passages of poetry or prose committed to memory? Can you recite something to me? Huh? If you were here, I could. Some Shakespeare (do young'uns memorize speeches still?). Some Longfellow. The usual suspects.
34. If you could change anything about the way you read, what would it be? I'd say faster, but at 1000+wpm I'm not sure that's necessary. Perhaps regaining the ability to read in a moving car/bus.
35. Was there any time in your life when you felt as if a book guided you in a profound way? Guided, no. Touched, on the other hand... definitely.
36. Return to the list you made at the beginning. What titles, if any, would you change after our conversation? No. I stand by my lack of list.
PART ONE
1. What was your favorite book as a child? Good Night, Moon, which feels like a cop out because, well, it's perfect.
2. What’s the last really good book you read? Because I'm on a book award committee, I can't give you the last really good adult book, but in the children's/YA category Dreamland Burning, a wonderful retelling of the Tulsa riots (or pogroms, choose your word) in the 1920s.
3. Do you prefer fiction or nonfiction? Fiction.
4. Do you finish every book that you start? If you don’t, how do you decide when to stop reading? It took me nearly 50 years, but I am no longer a 'clean plate' reader. For the award, I have to read 100 pages of books I request. For other books, 50 pages and out.
5. List your ten favorite books in four minutes or less. Write it down because you’ll revisit it at the end. Oh no. I just can't. Which genre? I could list ten favorite authors, or ten in a specific genre, but overall? Nope. Just can't.
6. Do you reread books? Which ones? I aspire to having the time, and fewer books on Mt. Bookpile to reread. Which would be the oeuvre of Julian Barnes and Robertson Davies, the Chalet School series and several other past favorites, like Shadow Castle and Possession.
7. Do you read poetry? Why or why not? Not usually, because books in verse feel forced. But occasionally I do and I'm always glad.
8. Do you remember the first “grown-up” book you read? Leaving aside that many books I read as a child were actually adult books (Treasure Island and Little Women were not written for kids!) and the Lord of the Rings trilogy (read when I was 9-10), Mistress of Mellyn by Victoria Holt. I'll admit a lot of it went over my head and on rereading years later I was quite surprised.
9. Are there any authors whose work you have read completely? Robertson Davies. C.S. Lewis. A.S. Byatt. Julian Barnes. And many, many mystery and YA writers (like Rex Stout and Garth Nix)
10. How often do you read books that are more than one hundred years old? Right now, rarely. But when I finish with this book award, probably once or twice a year.
11. Is there a type (or types) of book you never read? Not really. Unless you count textbooks.
12. How do you choose what to read? Reviews and recommendations from colleagues, professional publications, students and friends.
PART TWO
13. What’s more important to you: the way a book is written, or what the book is about? The way it's written. A well-written book can transform a dull topic (see, The Immortal Life of Henrietta Lacks) and a poorly-written one can kill a great topic (not naming names).
14. What author, living or dead, would you most like to have dinner with? C.S. Lewis
15. If you could hang out with a literary character for the day, who would it be? I want to be bold and say Pippi Longstocking, but at my age I'm just not up for that level of activity.
16. If you could be a literary character, who would it be? I have no idea.
17. Have you ever written a fan letter to an author? No. I've never been tempted, either.
18. Is there any book that, if I professed to love it, you would be turned off? Is there any book that would impress you in particular? Nothing would impress me, but if you said A Confederacy of Dunces I wouldn't accept book recommendations from you.
19. Is there a book you feel embarrassed about liking? Nope. An adult reading picture books, middle grade books and YA books really doesn't feel that way about reading. Perhaps an occupational hazard?
20. Are there books you feel proud of liking or having finished? Again nope.
21. Have you ever lied about having read a book? Yes. Mostly books I was supposed to read when I was in school, like Revolt of the Masses by Ortega.
22. Do you keep track of the books you read? Not before 2007. Now I use GoodReads and a notebook for my award reads.
23. How do you form opinions about what you read? Is it engaging? Do I buy the world (fictional or non) that the author is presenting? How does it compare to other books I've read?
24. What authors do you think are overrated? Underrated? My lips are sealed. Doing Readers Advisory for a living means I love all books, all authors. Publicly, at least.
PART THREE
25. Do you ever read self-help books? On occasion. Last one? Life Changing Magic of Tidying Up.
26. What’s a book that shocked you? Can't think of one. I'm sure there were, though.
27. If you could force every person you know to read one book, what would it be? I'd never.
28. What book would you recommend to me in particular? I don’t know you. (Terry's response, recycled here because it's accurate)
29. What books/authors have you been meaning to read for years? Why haven’t you read them yet? Anthony Trollope, because I think I need some really dedicated reading time. And Mt. Bookpile, of course.
30. What kind of book do you consider “a guilty pleasure?” I'm nearly 55. I don't have "guilty" pleasures, just pleasures.
31. Has a book ever changed your mind about something? No. Not really.
32. If you were terminally ill, what book or books would you read? As much of Mt. Bookpile as possible.
33. Do you have any passages of poetry or prose committed to memory? Can you recite something to me? Huh? If you were here, I could. Some Shakespeare (do young'uns memorize speeches still?). Some Longfellow. The usual suspects.
34. If you could change anything about the way you read, what would it be? I'd say faster, but at 1000+wpm I'm not sure that's necessary. Perhaps regaining the ability to read in a moving car/bus.
35. Was there any time in your life when you felt as if a book guided you in a profound way? Guided, no. Touched, on the other hand... definitely.
36. Return to the list you made at the beginning. What titles, if any, would you change after our conversation? No. I stand by my lack of list.
14.7.17
My own private episode of House
Remember the TV show House? Some medical mystery is presented... differential diagnoses are offered... treatments proposed and tried... nothing works... then, amazingly, Dr. Gregory House has some brainwave and YAY! Healing.
ACT ONE
The morning I'm supposed to leave for a conference I wake up with a very, very sore throat, possibly strep (I work in a school, after all). My doctor takes a look, swabs my throat and comes back with "nope, you have mono". MONO??? Yes, the disease everyone else gets in junior high or high school, I've managed to get in my early 40s. Yes, I know who I was kissing. No, I still haven't forgiven OR forgotten. And, like chicken pox or other childhood diseases, getting it as an adult is worse.
The bloodwork continues to show an active disease for two years, only vanquished by Xanax, under the theory if we suppress the stress in my body maybe things could go back to normal. The problem is that I now have Epstein-Barr and will have it, along with flare-ups, for the rest of my life. I start to practice what's called ECAM, or Energy Conservation and Management.
ACT TWO
My throat - again! - feels a little swollen, and during a routine visit to my endocrinologist she suggests I see my primary care doctor to get it treated. My doctor, like so many nowadays, doesn't really pay attention and the next six months are filled with tests and potential diagnoses and nothing really works. The swollen glands seem to disappear on their own, and my endocrinologist, at my next visit, thinks it was probably a run-of-the-mill infection that healed itself. My take-away? More ECAM and be very careful because this can - and has - happen again.
ACT THREE
In early December I discovered there was something a little off with my left eye and made an appointment with an ophthalmologist. One examination later, I have a diagnosis: optic retinitis in my left eye. Now I need to see a neuro-ophthalmologist for treatment. Two days later, my eyes are being redialated and I'm doing a number of what I'll call "inner eye" exams. Yep, the optic nerve in my left eye is severely inflamed. Remedy? IV drop of steroids. Just to rule out other problems, I'm tested for MS, NMO, lupus and Lyme disease. The problem with the first three is that they usually manifest in your 20s-40s, and I'm in my mid-50s. Surely there'd be at least one other symptom before now? Of course, there's the idiopathic form of OR and that's the one I probably have. One MRI and some blood tests later, they're all ruled out.
The steroids seem to work, and by March my eyesight is 20/40 (with glasses, I'm usually 20/15 and pre-treatment that eye was 20/400). Fun fact: in Massachusetts you can drive if you have 20/40 vision. Except things in my eye weren't blurry, they were foggy. No amount of corrective lenses would fix that and most of my sight is through my right eye, with peripheral help from my left (this is mostly affecting my central vision). The six-month check up should be a breeze, right? Except... remember that episode of House? How the first treatment works, until it doesn't? That's me.
June arrives and my vision is 20/70. My doctor is - to put it mildly - concerned and surprised because that is not how this is supposed to work. She starts to talk about possible other causes, and mentions a word that I never thought I'd hear: sarcoidosis. Yep, the House crew's go-to "this is what we think it is although it's never been that before but one day it might be" differential diagnosis disease. I could have that. Only a CT scan can tell. Annnnnd... no sarcoid (the 'in' term for sarcoidosis). CT is fine. So is a second MRI of my "orbitals" (which are eye sockets and let me tell you, when you see the results on the screen, you'll think you're related to Darth Vader!). Oh, and my first doctor is leaving so I need to see someone else. Soon.
This week was my fist appointment with the new doctor. We went over the progression of this problem and the previous testing, and then he tested my eyes. Yep. Worse. 20/100 in three weeks. As he put it, "you've lost several lines in a short time". Lines, I guess, being shorthand for "we're enlarging the lettering but if this were one of those large eye charts you'd be a few lines of text away from where you were three weeks ago". Obviously, a new differential diagnosis is required, along with new treatments and testing.
What's the differential? CRION (a chronic, remitting version of what I have). Syphallis (um, say what???). Rheumatoid arthritis. A few other relatively rare things I don't want to think about. But probably I'll be immunosuppressants for the rest of my life. Yay? Treatment right now is oral steroids, which could also lead to ulcers, bone density loss and the ever popular weight gain and 'roid rage.
ACT FOUR
Stay tuned.
ACT ONE
The morning I'm supposed to leave for a conference I wake up with a very, very sore throat, possibly strep (I work in a school, after all). My doctor takes a look, swabs my throat and comes back with "nope, you have mono". MONO??? Yes, the disease everyone else gets in junior high or high school, I've managed to get in my early 40s. Yes, I know who I was kissing. No, I still haven't forgiven OR forgotten. And, like chicken pox or other childhood diseases, getting it as an adult is worse.
The bloodwork continues to show an active disease for two years, only vanquished by Xanax, under the theory if we suppress the stress in my body maybe things could go back to normal. The problem is that I now have Epstein-Barr and will have it, along with flare-ups, for the rest of my life. I start to practice what's called ECAM, or Energy Conservation and Management.
ACT TWO
My throat - again! - feels a little swollen, and during a routine visit to my endocrinologist she suggests I see my primary care doctor to get it treated. My doctor, like so many nowadays, doesn't really pay attention and the next six months are filled with tests and potential diagnoses and nothing really works. The swollen glands seem to disappear on their own, and my endocrinologist, at my next visit, thinks it was probably a run-of-the-mill infection that healed itself. My take-away? More ECAM and be very careful because this can - and has - happen again.
ACT THREE
In early December I discovered there was something a little off with my left eye and made an appointment with an ophthalmologist. One examination later, I have a diagnosis: optic retinitis in my left eye. Now I need to see a neuro-ophthalmologist for treatment. Two days later, my eyes are being redialated and I'm doing a number of what I'll call "inner eye" exams. Yep, the optic nerve in my left eye is severely inflamed. Remedy? IV drop of steroids. Just to rule out other problems, I'm tested for MS, NMO, lupus and Lyme disease. The problem with the first three is that they usually manifest in your 20s-40s, and I'm in my mid-50s. Surely there'd be at least one other symptom before now? Of course, there's the idiopathic form of OR and that's the one I probably have. One MRI and some blood tests later, they're all ruled out.
The steroids seem to work, and by March my eyesight is 20/40 (with glasses, I'm usually 20/15 and pre-treatment that eye was 20/400). Fun fact: in Massachusetts you can drive if you have 20/40 vision. Except things in my eye weren't blurry, they were foggy. No amount of corrective lenses would fix that and most of my sight is through my right eye, with peripheral help from my left (this is mostly affecting my central vision). The six-month check up should be a breeze, right? Except... remember that episode of House? How the first treatment works, until it doesn't? That's me.
June arrives and my vision is 20/70. My doctor is - to put it mildly - concerned and surprised because that is not how this is supposed to work. She starts to talk about possible other causes, and mentions a word that I never thought I'd hear: sarcoidosis. Yep, the House crew's go-to "this is what we think it is although it's never been that before but one day it might be" differential diagnosis disease. I could have that. Only a CT scan can tell. Annnnnd... no sarcoid (the 'in' term for sarcoidosis). CT is fine. So is a second MRI of my "orbitals" (which are eye sockets and let me tell you, when you see the results on the screen, you'll think you're related to Darth Vader!). Oh, and my first doctor is leaving so I need to see someone else. Soon.
This week was my fist appointment with the new doctor. We went over the progression of this problem and the previous testing, and then he tested my eyes. Yep. Worse. 20/100 in three weeks. As he put it, "you've lost several lines in a short time". Lines, I guess, being shorthand for "we're enlarging the lettering but if this were one of those large eye charts you'd be a few lines of text away from where you were three weeks ago". Obviously, a new differential diagnosis is required, along with new treatments and testing.
What's the differential? CRION (a chronic, remitting version of what I have). Syphallis (um, say what???). Rheumatoid arthritis. A few other relatively rare things I don't want to think about. But probably I'll be immunosuppressants for the rest of my life. Yay? Treatment right now is oral steroids, which could also lead to ulcers, bone density loss and the ever popular weight gain and 'roid rage.
ACT FOUR
Stay tuned.
19.6.17
Imponderables, things that irk me no end edition
I may not be the most tolerant person out there, but if you're reading this blog you probably already know that. And probably don't care.
I've complained, via twitter no less (see below), about this trend to Scare People About the Weather Forecast. Apparently, in addition to naming winter storms, the Weather Channel now feels it's important to state how many people are "at risk" from the day's weather systems. And just like that, Bill Karins on MSNBC follows suit.
Let's leave aside why the Weather Channel, not NOAA, is suddenly the gold standard. Let's just ask ourselves, if (as is the case today, June 19, 2017) that 65MM people are "at risk" the other 300MM living in America are perhaps immune to any weather. Is there an inter-dimensional portal out there, protecting the rest of the US?
I've complained, via twitter no less (see below), about this trend to Scare People About the Weather Forecast. Apparently, in addition to naming winter storms, the Weather Channel now feels it's important to state how many people are "at risk" from the day's weather systems. And just like that, Bill Karins on MSNBC follows suit.
Let's leave aside why the Weather Channel, not NOAA, is suddenly the gold standard. Let's just ask ourselves, if (as is the case today, June 19, 2017) that 65MM people are "at risk" the other 300MM living in America are perhaps immune to any weather. Is there an inter-dimensional portal out there, protecting the rest of the US?
17.3.17
Have I got a deal for you
Thanks to the delayed winter storms and Spring Break and a never-ending cold, I've been watching more tv than usual. And because I've been a politics junkie for a while, much of that it stuff like MSNBC and C-SPAN, so I'm getting a lot of what's going on in Washington. And... it's depressing, isn't it? No matter who you voted for, you should be depressed by the tone of conversation, the lack of presidential demeanor and the spate of "fake news"/"alternative facts"/Tweetstorms pouring out of that city.
Yesterday's press conference was a case-in-point. Reporters trying to get a clear answer from the Press Secretary, who actually gave one of the worst storytime readings I've ever heard (and I've judged the NYC storytelling competition, so I have some expertise in this). They did a great job of not laughing in his face but it was close. It's fascinating theatre. Crap politics, but you can't have both, right? (at least, you can't these days)
One thing that I think is getting lost in all the budget bother: our president claims to be a Master Negotiator. Everything he does is framed that way, and most of his campaign promises were along the lines of "better deal" or "renegotiate". The Draconian nature of this budget and his government reorganization may be just that, a position that simply can't be defended or that will pass but will serve as a point from which to negotiate. And then, when the budget or government size his advisors (because I simply can't believe that Trump himself actually has a clue about any of this) actually want, it can be TRUMPeted (see what I did there?) as a HUGE WIN. #MAGA. Etc.
I'm reminded of the episode of Star Trek TNG where Scotty tells LaForge that he always padded the time needed for a repair so when it came in well under that prediction, Kirk would think he (Scotty) was a genius.
Lost in their calculations is that the way this is playing out means many people will feel as though no one has their interests at heart, from the president to their representatives. Also lost is the fact that while ultimately I may send less to Washington, I'll be sending more to Boston (and you, dear readers, will be sending more to Albany, Sacramento, Austin, etc.) as programs fall on the shoulders of state governments and those taxes will rise. And rise. As our president says, Sad!
Yesterday's press conference was a case-in-point. Reporters trying to get a clear answer from the Press Secretary, who actually gave one of the worst storytime readings I've ever heard (and I've judged the NYC storytelling competition, so I have some expertise in this). They did a great job of not laughing in his face but it was close. It's fascinating theatre. Crap politics, but you can't have both, right? (at least, you can't these days)
One thing that I think is getting lost in all the budget bother: our president claims to be a Master Negotiator. Everything he does is framed that way, and most of his campaign promises were along the lines of "better deal" or "renegotiate". The Draconian nature of this budget and his government reorganization may be just that, a position that simply can't be defended or that will pass but will serve as a point from which to negotiate. And then, when the budget or government size his advisors (because I simply can't believe that Trump himself actually has a clue about any of this) actually want, it can be TRUMPeted (see what I did there?) as a HUGE WIN. #MAGA. Etc.
I'm reminded of the episode of Star Trek TNG where Scotty tells LaForge that he always padded the time needed for a repair so when it came in well under that prediction, Kirk would think he (Scotty) was a genius.
Lost in their calculations is that the way this is playing out means many people will feel as though no one has their interests at heart, from the president to their representatives. Also lost is the fact that while ultimately I may send less to Washington, I'll be sending more to Boston (and you, dear readers, will be sending more to Albany, Sacramento, Austin, etc.) as programs fall on the shoulders of state governments and those taxes will rise. And rise. As our president says, Sad!
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