Miscellaneous Stuff After the Pandemic

 Hello there, old UpholsteredBellyBlog! 

Many things have changed in a year. I've been fully vaccinated against COVID 19, and so have about half of the people in America. My husband and son have been vaccinated as well. Nick has also had a vasectomy, after wrangling with his doctors for at least a year about not wanting to have children, ever. His significant other, Sylvie, who is non binary/bisexual, (uses they/them pronouns) I gather, is also not interested in bearing children, so having Nick take responsibility for birth control takes a lot of anxiety off of their plate. 

Meanwhile, my PCP has put me on Metformin, though I barely qualify as being diabetic and have no symptoms thereof. My A1C stands at a 6, (and falling) and I've lost 30 pounds unintentionally, mostly due to stomach/GERD issues. Once my A1C is down to 5, I am going to insist that I be taken off Metformin, as I no longer need it, I don't care if I'm still "obese" by their definition. I'm also on Furosemide for water retention, and I appear to have an infection in my swollen left leg that isn't responding to antibiotics. So it's off to see Dr Clerc tomorrow to evaluate what can be done about it. Last week I saw a dermatologist who cleared me of having a tumor that could be breast cancer on my breast, but she was more concerned about me having DVT or a blood clot in my leg, so she sent me for an ultrasound, which was, thankfully, negative.

The year of quarantine that I survived really put me in an isolated tailspin, mentally and physically, though I still managed to hold my library book group meetings via Zoom online. But it was hard for this extrovert to go for so long without any contact outside of my husband and son. I missed chatting with people. So much so that when I went to get my hair cut, post vaccination, a couple of months ago, I am sure the stylist thought I was crazy, because I was so pathetically grateful to see her and converse with her as she chopped my hair into the shortest style its been in since I was 5 years old and my mother gave me a "bowl cut" with an actual mixing bowl and kitchen scissors.

Fortunately my mom (who is 83) and my friend Roger, who still lives in Des Moines, Iowa, not far from where he grew up in Ankeny (we went to high school together), have been writing to me regularly via snail mail and, in Rog's case, via email as well. It has been a lifeline to hear from them and know that life goes on for so many people. I really miss them both, and I am hoping to travel to Iowa for the holidays to see my mom in particular. I've not seen her since Nick was 13 or 14 years old (and he's 21 now). I really want to sit and have tea with mom at least one more time before she passes (though who knows, with the uncertainty of my own health, she could outlive me at age 60). 

I've been reading more ebooks and YA books and rom-coms than usual, just because I need a break from the death tolls and bad news that is everywhere. On the good side, that means that I will be nearing 800 posts on my book review blog, Butterfly Books, by the end of the year. Since I no longer work as a journalist, my blogs are the one place I have left to do some writing and reviewing and generally thinking out loud. I do still keep a written journal, but I only write in it sporadically, and after 2 years, I am only 2/3 of the way through it. 

In other news, my son has taken me to many appointments and also taken me shopping for the first time in well over a year, so that was a joy, (Note that the purse departments of both Fred Meyer and Kohls are decimated and diminished places nowadays, though I am uncertain as to why. Are women not using purses to carry their belongings anymore?)  Tomorrow I have a doctor's appointment and he will doubtless take me there, too. I hope that afterwards we can go to the Sequel bookstore in Enumclaw so that I can peruse their shelves, something I've not done for at least two years. I can only walk short distances, and I have to use a cane to steady myself (my knees creak and give out sometimes), but if I take it slow, I can still move around for a bit. I am short of breath a lot, especially during exertion, but when I use my nebulizer with albuterol ampoules, that keeps my lungs open for a good 4-6 hours on a day when there's not a lot of allergens in the air. 

Today would have been my best friend Muff Larson's 60th birthday, had she lived beyond her 47th birthday. Happy Birthday in heaven, my friend. I still miss you and love you dearly. 

Here's to the summer of stores reopening after the pandemic, and to reintroducing myself to people and places I've missed for so long. I also hope that my Crohns will stay abated, though now, due to insurance, I have to have my infusions at home, otherwise I have to pay $500 in hospital charges (like $8.85 for one measly Benedryl!When they cost pennies to make, and you can get an entire bottle of them for a dollar at the drug store). It's going to be a long, hot summer...have some fun in the sun, folks, and don't let anyone make you feel bad about your own upholstered belly floating in the pool to cool off for the next three months.

2020 Becomes The Year of Hell

Just when I thought things couldn't get any worse, 9 months after my last post, the world is now dealing with a highly contagious respiratory virus that kills people by smothering them in mucus until they can't breathe and their heart and other organs give out. The coronavirus known as COVID 19 made it's appearance in Wuhan China in December of 2019, and by late February of 2020 had begun its reign of terror across the USA.
Of course it started here in Washington state, in a Kirkland nursing home in March when seniors began dying in droves, and their doctors and nurses became infected and died along with them.
Soon the CDC and Dr Fauci (the White House infectious disease expert) started calling for states to shut everything down, as in places like Italy, where people congregate and share space (and breath) every day, the death toll skyrocketed. Hospitals in Italy and China became overwhelmed, as did hospitals and nursing homes in New York and Seattle and other major population centers.
People were told that they needed to wash their hands, stay 6 feet away from others and wear a mask. Toilet paper and other supplies, especially personal protection gear, were in short supply as people began hoarding and buying everything in stores out of fear.
Inevitably our leadership (Trump, the fascist POTUS) denied that COVID 19 was a problem, and created more fake news and falsehoods that drove gullible conservatives to do stupid things like eschew masks because they read the POTUS's position as the whole virus was just the flu and was a conspiracy by the left to cause problems for the republican incumbent (this isn't true, of course, but there are a lot of idiots out there who will believe anything that Trump says, though he's a known liar and con man).
Our state governor, a democrat who believes in science and experts like Dr Fauci and the CDC, decided to shut down schools, businesses, libraries, local government and administration, etc, while mandating that everyone quarantine at home with family and not go out for any but the most necessary items, like food or medication.
That was in March, and I've not been out of the house except to go to St Elizabeth's Hospital for my Remicade biosimilar infusion once a month, since then.
For an extrovert who loves to talk and have tea and discussions with friends at local cafes, it has been a rough four months.
However, for someone who has had asthma and allergies (and thus weak lungs that are prone to pneumonia and respiratory infections of all types) and a weak immune system due to medication for Crohns disease, I know that getting this coronavirus could be fatal, and that is not how I want to leave this earth.
I've still got a lot of living to do, and I'd like to at least make it to my 60th birthday in December.
So for now I'm a bookish hermit, and I've been reading up a storm and blogging my reviews on Butterflybooks.blogspot.com.  I've also been streaming shows on my computer, binge watching Netflix and Amazon Prime programs, as well as CBS All Access, Apple TV and Disney + .
I do Zoom video conferences on my computer for my library book group once a month, and I listen to podcasts when I'm not watching shows on regular network channels with my husband.
I keep in touch with my doctors via computer video chats as well, and I also have weekly phone calls with my mom and my best friend Jenny Zappala.
All of this helps keep my spirits up and I remain cautiously optimistic, though every time my husband or son drives to the grocery store or to a restaurant to pick up some take out meals, I fear that their masks and handwashing won't be enough, and they'll bring the killer virus home to me, and that will be that.
I have nightmares about drowning in my own mucus on a ventilator almost every night.
I've gained 60 pounds in the past year, and if you're not aware, doctors and other medical professionals often have an inherent bias against fat people. So if it came to reserving medication for a lithe 30 year old or me, guess which woman would get the goods? They certainly would take my weight as a detractor from who is more deserving of a chance at recovery...because fat women over the age of 40 are going to die soon anyway, right? (WRONG, but it's exhausting to try and educate medical professionals about bias and the reality that BMI was created not by medical professionals but by statisticians based on faulty samples decades ago. It is not an honest indicator of health).
Yet, fingers crossed, we are closer to a vaccine for coronavirus every day, and some are saying it could be here as soon as December or early 2021.
So I just have to hang in there for another 6 months or so, and I might be home free.
Fingers crossed.

An Unflinching Update

It has been a bit over a year since I've taken the time to sit down and write about my health, my body, my life.
There's good reason for that.
My health continues to deteriorate each month, until now, on the eve of my 59th birthday, I can honestly say that I've never been this fat or this disabled by a variety of immunological diseases.
The side effects of the medications and treatments necessary to keep me upright and living are the constant bloating and weight gain and inability to move more than a few paces without a cane or someone to lean on, as well as being so winded you'd think I would have run a marathon, instead of just walking to the bathroom.
I know that there are many women who are struggling with much worse diagnosis.
Cancer, ALS, Multiple Sclerosis, Dementia, Parkinson's disease and many more.
When I think about their fights for survival, or even just one more day of being who they are, recognizing their children, their spouse, their home, I feel like a coward for bellyaching about Crohn's disease and Sjogren's Syndrome, plus asthma and a constantly increasing list of allergies.
Add to that a family member's increasingly out of control alcoholism and diabetes and you have a recipe for spiraling depression.
But I continue on, taking it one day at a time, one hour, one minute, doing the best that I can not to cry and gnash my teeth over every setback.
My joint pain and stiffness keeps me from exercising, and I've not seen the inside of a gym since 2015. I miss being able to move and to strengthen my body, but we can't afford a personal trainer, and the one that I had who was affordable now operates an animal rescue when she's not working as a funeral director.
I miss having the energy to clean the house, and the ability to bend over and scrub or get up from being on my hands and knees.
I miss being able to work and write for publication, and having the skills and the energy to do interviews and get out there and talk to people and make money of my own.
I miss having friends over, going out to have a cup of tea with friends, or having them come in for tea, or going to a movie and chatting afterwards. My life has become so small and lonely. I rarely make it outside of my bedroom more than once every two weeks, sometimes once a month. I am an extrovert by nature, so it drives me crazy that I can't go anywhere without a ton of pleading and planning these days.
I miss being treated with loving care and compassion by my family. They treat me like a burden and a convenient verbal punching bag (not everyone, of course. I thank God daily for my wonderful son).
I miss being able to contribute to the community, even if it was only as a helper at the library or giving some food to the local food pantry or gifts for the giving tree at Christmas.
But I am not dead yet.
So I think of every day as an opportunity to at least try to be a little better. Try to get out of the house. Try to find a group of people online who can commiserate with me about autoimmune disease and the side effects of medications used to treat it.
There are days when I succeed and days when I fail miserably. But I fight on. As long as I'm on the right side of the dirt, I can do no less.

Thoughts on Age Discrimination, Disability and Size Discrimination.

This young woman has many of the same problems with mobility that I do, except she has the added difficulty of being a person of color, which only makes some people more prejudiced against her.
Here's the article itself, by Leah Ridley Brome (posted on Linked In and Facebook):
This month is National Disability Employment Awareness Month. I published this on LinkedIn to shed some personal light on a topic that needs more visibility.

A few days after dancing at my wedding, my back began to hurt. When I say hurt, I mean burn. It felt like every nerve ending was on fire causing my spine to stiffen and seize. I couldn’t breathe, not just from the pain, but literally, I couldn’t breathe - my oxygen levels were low, and I wheezed and whistled like a freight train. A childhood asthmatic, I thought I was having a particularly rough period due to exceptional lousy air quality or seasonal changes, but after three seasons had passed, I knew something was wrong. I was nauseous all the time from the pain that now spread everywhere, not just my back.
My doctors were at a loss, my inflammation levels were off the charts. They put me on a steroid medication called prednisone to help me function. The medication helped until it didn’t. It turns out, I am extremely sensitive to prednisone. The eighteen months I spent on the drug caused significant weight gain, muscle weakness and damage, and type II diabetes. The strangest thing about this period in my life was that I hardly noticed that my body was literally falling apart.
My career at my previous company was going exceptionally well. I had received two promotions in a year, the last one making me the leader of a new function - Global Talent Acquisition Strategy. When another department restructured, my team inherited work focused on recruiting People with Disabilities (PWDs) to work for the company. The program was incredibly successful in the stores owned by the company, but not as successful in corporate. Our team was challenged with increasing the optimizing the partnerships, pipeline, and processes related to recruiting PWD talent in corporate positions.
Around this time, I was forced to use a mobility scooter around my office because I could no longer walk long distances or stand for long periods of time. At first, I loved it. I zipped around the office with ease to meetings the same way I used to before all this happened. But then, I noticed something. When I was in the scooter, I became invisible. I could no longer confidentially enter a room. Not every door was handicap accessible, and often times, I would struggle to push a door open in my scooter. This would invariably cause a good Samaritan to come to my aid. It was a kind gesture that I hated being the recipient of. Even worse was when I had to ask my colleagues or my boss to load my scooter into a car when we would travel together. But my biggest shame was not being able to look someone in the eye when I first met them. They had to look down at me literally. Their smiles to me seemed patronizing. For some, I saw a flicker of surprise when they learned that the women in the scooter was indeed the same Leah Brome they had been talking to on the phone. I suspect in their mind's eye leaders didn’t use mobility devices.
A leadership retreat in New Hampshire was my breaking point. My scooter broke down at the resort after trying to make it up a particularly steep incline. The historical seaside resort was not accessible at all. My colleagues attempted to push me up the hill, and one even offered to carry me. Eventually, I got some help walking up the hill, and my colleagues carried my scooter in pieces until we could figure out the problem.
At that retreat, I recognized the obvious: I had a disability. The world no longer seemed like a place that was designed for me in it. Literally, there were some doors I couldn’t open. As an African-American, gay woman discrimination isn’t a foreign concept to me, but I had a lifetime of navigating that. I understood how to navigate that. Navigating a disability, especially one that was so "visible", scared me.
The PWD initiative I was leading now took on a more personal note. I now understand the courage it takes for a person with a disability to disclose their disability on an application or in a phone interview. I now understand the added pressure to a first in-person interview for those with mobility issues - figuring out if all the doors you will encounter are handicap accessible. Wondering if your interviewer will be shocked to see you using a mobility device or if they’ll ignore it (or over-ignore it, staring way too much at your face, afraid to even look at your device). Then even after you get the job, you wonder if the favorite after-work haunt can accommodate you and whether or not you’ll be the person who ruined all the fun by not being able to join the group. You wonder if your higher-than-usual number of doctor’s appointments will cause others to question your committment to your employer. You wonder if you’ll ever be promoted, and if you are, will you be respected as a leader because you are different? You wonder if networking will always be so hard, with some seeing your disability before they see you, and you wonder if you’ll lose opportunities your other colleagues might not. You worry that you are asking way too much of a manager to “accommodate” all the uniqueness that is you and you question if it is that fair to them. If you have an invisible disability, you wonder if maybe you can “pass.” Maybe you can purchase and bring in your own devices to help you do your job, and no one has to know. These are just a few of the consistent thoughts and concerns that PWDs have when they seek and obtain employment.
Attracting PWD talent is more than just stating that we don’t discriminate at the bottom of a job posting. It’s about showing candidates that we have purposefully designed space for them within our everyday operating practices.
My greatest fear was that my disability would change me, and it did. I am more empathetic, humble, and more authentic at work and at home. The doors of the world may not have been built for me to pass through them easily, but somehow, I’ll find a way to scoot on through. That’s just how I roll.
https://www.linkedin.com/…/thats-just-how-i-roll-navigatin…/

I have experienced many of these things when using the grocery store electric cart/wheelchair, because more often than not they break down in the middle of the aisle, causing embarrassment to me as I have to find someone to get me another one that works or fix the one I am on. When using my cane I move along slowly, because I can only take small steps with my knees and back hurting and full of inflammation and edema. But most people only see a fat woman struggling and they judge me as someone who only eats junk food and has no self control, who has "let herself go" and all kinds of other cliches and stereotypes that are far from the truth. "Concern trolls" on the internet and sites like Facebook constantly post about how obesity/being fat is not only ugly, but it will kill me with a heart attack, diabetes or any one of a million other diseases, despite the fact that my heart and blood pressure are fine, and I don't have the gene for type 2 diabetes (nor do I actually have diabetes). And yes, just as Ms Brome said, you worry that employers will either discriminate in hiring you or fire you for being too much trouble if you do get the job. I rarely even have the chance to interview for a job, as my age and gender are a factor that hiring managers don't want to deal with. Add to that the thought of having to deal with an older woman with a disability and you have the perfect storm of someone who will be ignored and overlooked when it comes to hiring, even for jobs that I am well qualified for, or have worked on in the past.
So while the Me,too and TimesUp movements continue to try to hold men accountable for sexual harassment and rape, and for sexism and a whole variety of indignities that women experience every single day, the "It's Okay to be Fat" movement faces an even steeper hill of prejudice and ignorance in a society that wants women to be consistently dissatisfied with how they look and how they feel about their bodies. It weakens us as women to see ourselves as ugly and unlovable because we can't meet the "perfect" standards of airbrushed and photoshopped models whose pictures aren't even real to begin with.
Then there is the question of hair color...to be gray or not to embrace gray/white hair? www.grayisthenewblonde.com
Women are taught that to be older is to be ugly and invisible, and in a society that worships youth, you are called upon to remove all the hair on your body (except for the hair on your head) and color the hair on your head, lest you be seen as "grandmotherly" or "ancient." The problem there is that there is power in accepting your age and reveling in the looks that you've grown into.  But companies don't make money off of women who accept themselves as they are and don't color their hair or spend cash on the latest diet fad or on waxing/shaving products to make themselves as hairless as prepubescent children. The patriarchy is behind this, of course, old white men who want to control and subjugate women by setting "standards" of looks and behavior that are impossible to attain or retain. BE WHO YOU ARE, RIGHT NOW. Love your body, flaws and all. Accept your age and enjoy the wisdom of knowing what you know and of your experiences as a human being. Being disabled has made me realize that I can't waste a single moment trying to be what some ad agency or some other group of prejudiced old white men want me to be. I must live and love on my own terms. So should you. Don't give up, don't allow anyone to tell you who you are, and squeeze the juice of life from every last second. 

Down, But Not Out

I haven't written here in three years, and I have only my flagging health and self esteem to blame. I've gained over 100 pounds and added a diagnosis of PCOS and Sjogren's Syndrome to my list of ailments and disabilities, so now I sometimes have to walk with a cane, and I can barely get from one part of the room to another without wheezing and feeling short of breath. I've tried to work out with a lovely personal trainer named Stephanie this year, who comes to my home and helps me work with resistance bands and weights, and never asks me to do more than I can handle. In fact, she always keeps up a steady stream of conversation to ensure that I am not overdoing it.

Meanwhile, my Crohns is doing well on Remicade, which I feel has been treating my body like it's on cortisone since 2014...hence part of the weight gain (PCOS and menopause are the other parts, in addition to having regular bouts of pneumonia so that I had to quit the gym because I couldn't breathe and had to take tons of antibiotics to recover). This year I had a very expensive pneumonia vaccination and a flu shot to keep me from ending up in the hospital with bronchitis or pneumonia, and I have been lucky that so far they've been fairly effective, with only a couple of bad colds/infections that I've had to deal with. This week I'm taking Diflucan to get rid of a persistent yeast infection, and for some reason it's helping my sinuses and my lungs.

Still, as my weight inches up, I can't seem to get around without taking tiny, shuffling steps, and I can't stand for more than 15 minutes, even in the shower, without feeling faint and my back burning with the arthritis the rheumatologist showed me is there. I have heinous edema in my ankles, feet, lungs, knees, hands and face, and I have to take Lasix twice over 24 hours in order to keep mobile and feeling like I'm not drowning. I also have a nebulizer with albuterol that I used twice a day to keep my lungs clear, along with nasal sprays and antihistamines.

Being such an extrovert, I really miss getting out and talking to people, and having tea with friends, but I rarely go out these days. My neighbor/friend has health issues to rival my own, and makes excuses not to see me, so we've only been out to have tea once this year. Another friend and I have gone out for tea and a chat, but she is about 15 to 20 years younger than I am and therefore has a busy work life and church life to deal with, so I don't see her much, either. My monthly book group has been my social saving grace, but it's only for an hour and I often linger to talk to the librarians because I am starved for social contact with like minded bibliophiles.

Speaking of bibliophiles, thank God and all of creation for books, my stable passion for the worlds that unfold between their pages has never abated. Though I need stronger reading glasses this year, I still manage to put away 4-5 books a week, and I blog about them religiously on my butterfly books blogspot page, where I am almost to my 650th post! Since my journalism career is moribund, my book blog is the only place left to practice my writing skills and keep myself in tune with my love of words.

My son, who graduated from high school with honors this past June, is now driving everywhere in our old Nissan, so he often takes me to book group (where he is hailed as the conquering hero...all the ladies adore him, and he's charmed them with his dry wit and compassionate intelligence) and to my Remicade appointments, where after I'm done, he and I sneak off to Enumclaw's used bookstore to peruse and purchase books, expressly against my husband's wishes, because Jim is always saying that I have too many books to read as it is (I keep telling him you can NEVER have too many books!)

Though I have been turned down for social security disability 5 times now, I believe I am fortunate that I have a roof over my head, food to eat and a family to love. I can still bathe and dress and feed myself, and I have plenty of lovely books from the library and bookstore to read and enjoy. There's also Netflix and Redbox and the DVR for shows that I want to watch and can't miss. My mom is only a phone call away, and at nearly 81, she's still sharp as a tack. My father, who now lives in a nursing home, has been through a bout with pneumonia and two of Cdiff, and is skinny, white haired and confused most of the time, as he wrestles (at age 86) with dementia. I only hear about him through his 4th wife, who sometimes will let me talk to him over the phone, where he can barely hear or speak due to deafness and loss of all of his teeth (his wife is trying to get him dentures). But dad is a tough old guy, and my younger brother goes to check in on him every week, though he knows dad probably won't recognize him half the time. Dads siblings, my aunts and uncles, still come around once a month to also chat with dad, and often they watch a football game with him on TV. My dad loathes being isolated as much as I do, so I find myself wishing I had the wherewithal to hop on a plane and go visit him for awhile, and then slip back out of Iowa and fly home. I wish that I could be a better daughter, and let him know how much I love and miss him. I try to keep in contact with mom each week, and I send her books and tea as often as I am able.

I tire so easily now, and I'm already worn out, exhausted from a day where I went no further than the kitchen down the hall from my bedroom, which can, at times, feel like it's miles away.  But I fight on, like Don Quixote, like Cyrano, like all the dreamers who dream of rising above the limits of their bodies and their circumstances. Blessings to you all, good night.

On Being Bigger Than Ever Before, and Ursula Le Guin's Wise Words on Beauty and Aging

I've been on Remicade for just over a year now, and during that time, I've gained about 60 pounds, taking me to being the largest I've ever been in my life. I noticed that it's harder for me to move during exercise classes now, and I get winded just taking a shower. I can't stand for more than an hour and 15 minutes without getting a back spasm, and I am unable to touch my toes while standing or tie my shoes by just bending over anymore.
That said, I am almost 55 years old, and I've had Crohns disease for 15 years, with only one operation on my intestines so far, so that's a win for my body, because most Crohns patients end up with multiple operations and a colostomy bag within the first 5-7 years after diagnosis, depending on the severity of the disease. So many fellow "Crohnies" that I read about on Crohns and Colitis websites are struggling just to stay alive and have a halfway normal life. Some can barely get out of bed, and a majority have trouble holding down a job, because they spend so much time running to the bathroom. So I feel that I am fortunate in that I can still get out of bed in the morning, I can still do some household tasks, and I can still write in my blogs and keep up with my son and husbands needs. I can also complete three exercise classes a week, though I have to modify a lot of moves to low impact.
Despite the love and acceptance of my family and friends, though, I still feel bloated and hideous sometimes, and I struggle to reconcile how I feel with how I look in the mirror.
Science fiction author and sage Ursula LeGuin has some brilliant comments on beauty and aging, which spoke to me in a way they wouldn't have just 15 years ago.

"Perfection is “lean” and “taut” and “hard” – like a boy athlete of twenty, a girl gymnast of twelve. What kind of body is that for a man of fifty or a woman of any age? “Perfect”? What’s perfect? A black cat on a white cushion, a white cat on a black one . . . A soft brown woman in a flowery dress . . . There are a whole lot of ways to be perfect, and not one of them is attained through punishment.

Beauty always has rules. It’s a game. I resent the beauty game when I see it controlled by people who grab fortunes from it and don’t care who they hurt. I hate it when I see it making people so self-dissatisfied that they starve and deform and poison themselves. Most of the time I just play the game myself in a very small way, buying a new lipstick, feeling happy about a pretty new silk shirt.

One rule of the game, in most times and places, is that it’s the young who are beautiful. The beauty ideal is always a youthful one. This is partly simple realism. The young are beautiful. The whole lot of ’em. The older I get, the more clearly I see that and enjoy it.

And yet I look at men and women my age and older, and their scalps and knuckles and spots and bulges, though various and interesting, don’t affect what I think of them. Some of these people I consider to be very beautiful, and others I don’t. For old people, beauty doesn’t come free with the hormones, the way it does for the young. It has to do with bones. It has to do with who the person is. More and more clearly it has to do with what shines through those gnarly faces and bodies.

Who I am is certainly part of how I look and vice versa. I want to know where I begin and end, what size I am, and what suits me... I am not “in” this body, I am this body. Waist or no waist.

But all the same, there’s something about me that doesn’t change, hasn’t changed, through all the remarkable, exciting, alarming, and disappointing transformations my body has gone through. There is a person there who isn’t only what she looks like, and to find her and know her I have to look through, look in, look deep. Not only in space, but in time.

That must be what the great artists see and paint. That must be why the tired, aged faces in Rembrandt’s portraits give us such delight: they show us beauty not skin-deep but life-deep."
Ursula K LeGuin, from her book "The Wave in the Mind, Talks and Essays on the Writer, the Reader and the Imagination."
I realized that I have to work harder now to accept my flawed, fat and aging body for what it is: A miracle that encases my good soul. Here's what Kate Mulgrew has to say about giving up on "vanity"
https://www.youtube.com/watch?v=zaF0--u-q6Y

Just Read This on Boston Craigslist

I lived in the Boston Cambridge area for four miserable years, (for grad school) and I was constantly made hash of by creeps, so I can identify with this, but if I could I would send an email of thanks to the woman who wrote this protest to let her know she's amazing and makes me have faith in humanity, at least the humanity of Boston, again. Thank you, anonymous woman.

To the shitstain who made a woman cry on the T - w4m

"You got up right before the Stony Brook stop and said something in a low voice to the woman next to you. You exited the train and she burst into tears. I asked her what you said---and in between sobs she goes, "he said 'Have some respect for yourself and lose some weight'".

Oh shit, you said that to a complete fucking stranger, an innocent person trying to read a book on her ride home!!! Yeah dog, you sure did, and then you turned heel and walked off like the miserable coward you are.

You publicly humiliated another human and made her cry. How truly fucking horrifying of you. She was totally stunned, and devastated. . .is that what you wanted to see happen? Are you that much of a nightmare that you are PLEASED by making people cry? Total strangers even? I don't think I can fully express to you what an absolute skidmark you are, but here goes:

You: blond, slicked hair, hipsterish. You manage to be both tasteless and sanctimonious, and something tells me you brag about loving Bukowski even though you only made it 80 pages deep into Women. You definitely think you're smarter than everyone, and you love reflective surfaces. You work in design/tech/oh wait, who cares, you don't fucking matter. You treat women like garbage, but don't worry---we hate you. You have a stank on you, and a lot of us can smell it...truly a dookiestain made flesh. You don't have an original thought under that stupid haircut. You are a straight up fucking bully, and you should be ashamed of yourself. Bullies are the absolute worst.

The thing is, part of you knows this, and you're upset that no one treats you like the special snowflake you believe yourself to be. So you say horrible things to strangers in public to make yourself feel better. Stop being such a fucking bully and shitting on other humans just because your wounded-ego feels like taking a dump. No really, just fucking stop.

Any of my fellow feminist vigilantes who might be reading this: keep an eye out for a white dude, around age 30, who looks like a wacker version of Macklemore, if that's possible. Make sure you remind him of his insignificance.

And to the woman to whom this human diarrhea pile directed his steaming ego turd: keep your head up girl, it's not even about you. I hope it didn't ruin your day. "

 

Also, a Crohn's update: I had an x-ray defcography last week to find out why it is so hard for me to deficate. Dr Mulhall's nurse called me yesterday and said that the test, which took 3 and a half hours, showed that I had multiple abnormalities in my lower bowel, including a recticele, strictures, large internal hemeroids and some kind of abcess. Unfortunately, Dr M wasn't in last week, and I couldn't get an appointment to see him until September 12, my late stepfather's birthday (RIP Lloyd). But the nurse said she'd put me at the top of the waiting list because she felt that I needed to see the doctor sooner than that to get a plan of action going to correct these problems, which said to me that I am going to need lots of surgery. I dread surgery because I am slower to heal when I am on biological drugs like Remicade. There is always the chance of complications with surgery, of infection, of dying on the table, and I have a teenager to raise, so I can't shuffle off this mortal coil yet. 

But today, as Dr Cargill was removing some anal skin tags that had become inflamed from my rump, I was reminded that the first rule of dealing with Crohns, for a Doctor, is "try to avoid surgery." Because Crohn's patients make a lot of adhesions and other problems out of scar tissue from surgery. Plus, Dr C told me that Dr M is the quarterback of my team, and that I need to wait to see what play he was going to call to help me feel better in the future. So I shouldn't worry and fret about it now.  I am trying to heed his advice, and the advice of his lovely nurse Lisa, and just take deep breaths and wait to see what Dr M and I can come up with to treat my Crohns.