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.
Sunday, September 30, 2018
Sunday, April 26, 2015
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
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
Tuesday, August 26, 2014
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.
"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.
To the shitstain who made a woman cry on the T - w4m
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. "
Monday, May 26, 2014
Remicade and Side Effects Thereof, and Menopause
First, a cute kitten video, just because...kittens! https://www.youtube.com/watch?feature=player_embedded&v=eZzn0Zi1Kc0
Now, I'm going to write an update on my Crohn's, how it's going and what is going on with the upholstered belly.
But first let me state categorically that MENOPAUSE SUCKS.
Since I began taking Remicade about 7-8 weeks ago, I have had so many hot flashes that I am surprised that I haven't melted into a puddle of grumpy fat.
The flashes come on me all of a sudden, and then I feel like a baked potato in a microwave, being cooked from the inside out, as sweat pours off of my face and chest. I also have night sweats, which, in conjunction with hot flashes, leave me feeling like I'm living in the third ring of Hades.
I also have constipation, belly bloating (more than I already had with Crohns) and I'm very emotional, often vacillating between wanting to hug everyone and cry and wanting to punch people in the face and cry. Nightmares and insomnia are also not helping me maintain my equilibrium.
I'm also gaining weight at an exponential rate, so now I am this huge, fat, grumpy, red-faced sweaty old woman with tight clothes who people would do well to avoid. So that all makes me depressed, which leads me to my other complaint, which is that my doctors seem not to know which of my symptoms are side effects of the Remicade and which are menopausal. The crazy OB/GYM that I went to see wanted to do what most male doctors want to do with women undergoing the change, which is put us on hormones and anti depressants and breathe a sigh of relief when we get cancer from the hormones so they don't have to deal with us anymore, now that we're no longer able to produce children and be all young and sexy and obsessed with pleasing men. Most of the women I know who are my age or even a few years younger find that they could care less about sex and about their demanding portly husbands and rude teenage children. (I must note two things here, first that my son Nick is not a rude teenager, exactly the opposite, actually, and he's also still quite compassionate and always gives his mom a huge hug and kiss every day. Also, my husband says that I am not fat, grumpy, sweaty and red faced to him...he still sees me as his frisky wife, just in slo-mo).
I am fortunate in that my husband, since his prostate removal, could also care less about sex, and is actually acts more like a teenage girl than I ever did. He's also got diabetes, so he's working on his diet, finally, by eating a protein rich diet and doing some exercise and only drinking one or two beers a day/night. So he's undergoing a manopause transformation by losing weight.
Meanwhile, next week is my third or fourth (I can't remember, another great menopause symptom, forgetfulness) Remicade infusion at the beautiful Day Surgery Center at St Elizabeth Hospital in Enumclaw. Seriously, I highly recommend this place if you're going to have any kind of outpatient procedure at all, because the nurses are wonderful, the DSC is small and new and appointed with nice chair-beds, regular beds with air conditioning and even lunch service. It's sort of like going to a very clean spa staffed by nurses and doctors.
But the problem is that after each infusion, I feel like I am pregnant, and while I'm nauseous, bloated, fatigued and constipated and I am more importantly unable to deficate for at least 48 hours. This is particularly frustrating because Remicade is supposed to ease my Crohns symptoms enough that going to the bathroom is easier, not harder. I have to strain and push like I am going through labor every single time I'm on the toilet. I've also got something akin to interstitial cystitis, because I get up every two hours in the night to pee, and if I try and wait to urinate, I am incontinent.
Sounds like loads of fun, doesn't it? The only good thing about the Remicade so far is that I've only had two short, mildly painful flares since going on the drug. That's a vast improvement over having three or more flares a week that were always 6-8 hours long and hella painful. My gastroenterologist, Dr Mulhall, is finally back from whatever emergency was keeping him away from his practice. So I've been to see him, and last week I called in hopes of talking to him about my symptoms on the phone. His nurse, whom I left a message with, didn't call back, but I hope to hear from them before my infusion on the 29th. Oh, and I have discovered that the Nortryptaline that I was taking before bedtime doesn't work anymore, instead it makes me constipated and anxious. So I've stopped taking it in hopes of some relief. I have to keep my spirits up, though, and not fall prey to depression and anxiety attacks, or I will end up on more anti-depressants with their nasty side effects of even more weight gain.
I am still exercising 3-4 times a week for at least an hour, and I just read a great book about going through menopause called "The Madwoman in the Volvo" that was pretty funny but somewhat unrealistic in its solutions for the average middle aged woman. (Most of us can't afford to have a maid come in to clean, or to get a divorce and remarry someone more exciting who cooks and dotes on you 24/7. Nor can I afford fancy getaway weekends, parties, spas or rehab. Considering I don't drink or do recreational drugs, I think I don't need to worry about the latter.) Still, the parts about having to care for your family and also care for your aging parents who do crazy stuff really resonated with me. Unlike Loh, the author, I don't have a fancy background and tons of freelance jobs to fall back on, nor do I have a ton of well connected friends who send work my way or a father who has a bunch of bank accounts with money saved in them for me. I don't write books, either, and I only did stand up comedy for a brief period of time in the 1990s. So I have more reasons to kvetch than Loh does, yet I would say that I am not nearly as bitter or mean as she claims to be, and I would never consider leaving my husband and son in a fit of pique.
However, I am hanging in there, and I hope that this summer will be a good one. We're taking our annual drum and bugle corps trip to Portland, Oregon, with it's annual Powells City of Books pilgrimage for me, while Nick is taking a computer coding class at a local community college. So here's to a hopefully cool summer and a few months without pain and strictures and other Crohns problems.
Now, I'm going to write an update on my Crohn's, how it's going and what is going on with the upholstered belly.
But first let me state categorically that MENOPAUSE SUCKS.
Since I began taking Remicade about 7-8 weeks ago, I have had so many hot flashes that I am surprised that I haven't melted into a puddle of grumpy fat.
The flashes come on me all of a sudden, and then I feel like a baked potato in a microwave, being cooked from the inside out, as sweat pours off of my face and chest. I also have night sweats, which, in conjunction with hot flashes, leave me feeling like I'm living in the third ring of Hades.
I also have constipation, belly bloating (more than I already had with Crohns) and I'm very emotional, often vacillating between wanting to hug everyone and cry and wanting to punch people in the face and cry. Nightmares and insomnia are also not helping me maintain my equilibrium.
I'm also gaining weight at an exponential rate, so now I am this huge, fat, grumpy, red-faced sweaty old woman with tight clothes who people would do well to avoid. So that all makes me depressed, which leads me to my other complaint, which is that my doctors seem not to know which of my symptoms are side effects of the Remicade and which are menopausal. The crazy OB/GYM that I went to see wanted to do what most male doctors want to do with women undergoing the change, which is put us on hormones and anti depressants and breathe a sigh of relief when we get cancer from the hormones so they don't have to deal with us anymore, now that we're no longer able to produce children and be all young and sexy and obsessed with pleasing men. Most of the women I know who are my age or even a few years younger find that they could care less about sex and about their demanding portly husbands and rude teenage children. (I must note two things here, first that my son Nick is not a rude teenager, exactly the opposite, actually, and he's also still quite compassionate and always gives his mom a huge hug and kiss every day. Also, my husband says that I am not fat, grumpy, sweaty and red faced to him...he still sees me as his frisky wife, just in slo-mo).
I am fortunate in that my husband, since his prostate removal, could also care less about sex, and is actually acts more like a teenage girl than I ever did. He's also got diabetes, so he's working on his diet, finally, by eating a protein rich diet and doing some exercise and only drinking one or two beers a day/night. So he's undergoing a manopause transformation by losing weight.
Meanwhile, next week is my third or fourth (I can't remember, another great menopause symptom, forgetfulness) Remicade infusion at the beautiful Day Surgery Center at St Elizabeth Hospital in Enumclaw. Seriously, I highly recommend this place if you're going to have any kind of outpatient procedure at all, because the nurses are wonderful, the DSC is small and new and appointed with nice chair-beds, regular beds with air conditioning and even lunch service. It's sort of like going to a very clean spa staffed by nurses and doctors.
But the problem is that after each infusion, I feel like I am pregnant, and while I'm nauseous, bloated, fatigued and constipated and I am more importantly unable to deficate for at least 48 hours. This is particularly frustrating because Remicade is supposed to ease my Crohns symptoms enough that going to the bathroom is easier, not harder. I have to strain and push like I am going through labor every single time I'm on the toilet. I've also got something akin to interstitial cystitis, because I get up every two hours in the night to pee, and if I try and wait to urinate, I am incontinent.
Sounds like loads of fun, doesn't it? The only good thing about the Remicade so far is that I've only had two short, mildly painful flares since going on the drug. That's a vast improvement over having three or more flares a week that were always 6-8 hours long and hella painful. My gastroenterologist, Dr Mulhall, is finally back from whatever emergency was keeping him away from his practice. So I've been to see him, and last week I called in hopes of talking to him about my symptoms on the phone. His nurse, whom I left a message with, didn't call back, but I hope to hear from them before my infusion on the 29th. Oh, and I have discovered that the Nortryptaline that I was taking before bedtime doesn't work anymore, instead it makes me constipated and anxious. So I've stopped taking it in hopes of some relief. I have to keep my spirits up, though, and not fall prey to depression and anxiety attacks, or I will end up on more anti-depressants with their nasty side effects of even more weight gain.
I am still exercising 3-4 times a week for at least an hour, and I just read a great book about going through menopause called "The Madwoman in the Volvo" that was pretty funny but somewhat unrealistic in its solutions for the average middle aged woman. (Most of us can't afford to have a maid come in to clean, or to get a divorce and remarry someone more exciting who cooks and dotes on you 24/7. Nor can I afford fancy getaway weekends, parties, spas or rehab. Considering I don't drink or do recreational drugs, I think I don't need to worry about the latter.) Still, the parts about having to care for your family and also care for your aging parents who do crazy stuff really resonated with me. Unlike Loh, the author, I don't have a fancy background and tons of freelance jobs to fall back on, nor do I have a ton of well connected friends who send work my way or a father who has a bunch of bank accounts with money saved in them for me. I don't write books, either, and I only did stand up comedy for a brief period of time in the 1990s. So I have more reasons to kvetch than Loh does, yet I would say that I am not nearly as bitter or mean as she claims to be, and I would never consider leaving my husband and son in a fit of pique.
However, I am hanging in there, and I hope that this summer will be a good one. We're taking our annual drum and bugle corps trip to Portland, Oregon, with it's annual Powells City of Books pilgrimage for me, while Nick is taking a computer coding class at a local community college. So here's to a hopefully cool summer and a few months without pain and strictures and other Crohns problems.
Monday, March 3, 2014
Where I'm At With My IBD
First of all, I have to say that I am so sorry that I've been away from this blog for so long. I have been wrestling with my Crohn's and with getting medical insurance and landing on the tables of two new doctors, Dr Brian Mulhall, who is my new gastroenterologist (and a total hottie, not that I noticed) and Dr Tanya Wilke, who is my new Primary Care Physician, or PCP. Dr Wilke is also pretty awesome, a nice young gal who doesn't throw around any BS about my weight and assume that everything "wrong" with my health is somehow related to my size.
She is aware that I don't have diabetes, or high cholesterol, or hypertension (high blood pressure) or cancer, or any of the other ills that are said to be caused by being 110 pounds overweight.
She is also aware that I work out at least 3 times a week at a local gym, that I can't have dairy, eggs, nuts, onions, garlic, green beans, strawberries or oatmeal in my diet, because they cause me to have a flare and/or an allergic reaction that makes me stop breathing. Dr Mulhall is also aware of these allergies and he and I have talked about how difficult it is to eat healthy when I have Crohns and allergies. My Crohn's goes crazy whenever I eat raw fruits or vegetables, and there are veggies that, even cooked, (broccoli and cauliflower are the two that spring to mind) make my intestines go crazy and cause me pain and suffering in the bathroom. Doc M has asked me to try being gluten-free for a week, to see if that helps any, and though I managed three days, I was sick with some kind of flu, so my gut was a mess regardless of what I ate. And I wasn't hungry, so it wasn't as much of a problem to try and find gluten free foods that don't also have dairy or eggs or nuts in them.
Anyway, Dr Mulhall had recommended that I start on a new steroid that was specifically for IBD called Uceris, but my new insurance won't pay for it, and it costs $50 per pill, so two weeks dosage would run around $1,600, which is just not affordable for a family living on one income like ours. However, when I went to see Dr M last, I had the flu and I was so ill that I could barely sit up, so he just threw a lot of things at me and then recommended that I go home, drink Nyquil and get some rest and wait until I was well to even attempt to try any new medications. Then, while I was recovering from the stomach flu and an upper respiratory infection that followed close on its heels, Dr M had a family emergency and his nurses said he would not be back for three months! And instead of leaving another gastro doc to take over his patients, he left us with a nurse practitioner.
After going to see the nurse practitioner, and expressing my deep loathing of all the side effects of steroids that I ALWAYS get when I take them, (including weight gain, which doesn't come off as easily as it did 30 years ago), she agreed that we should get started with the process of getting me on Remicade, which is where Dr M said that my "plane was eventually going to land." However, I've had to have blood tests to ensure that I don't have tuberculosis or Hepatitis B, the latter of which I was vaccinated against in 1995. Apparently, vaccines don't always last, though, so my blood showed no immunity to Hep B, and now I have to go in and get the three shots to vaccinate me, and since my bloodwork was inconclusive about TB, I have to have a chest x-ray tomorrow, too. Ugh.
But! I have hopes that I will, before the end of March, be infused with Remicade at St Elizabeth Hospital. Here's hoping that it works, and doesn't make me paralyzed, like it did my brother, or very allergic, as it did a friend of mine.
Meanwhile, I have been reading lots of size positive blogs lately, and this one came up today on Facebook, which I found fascinating. http://danceswithfat.wordpress.com/2014/03/03/sex-in-a-fat-body/
Also, this is about the kerfuffle with Target phasing out their Plus-Sized Clothing Dept (and do not get me started on Old Navy being sizest jerkwads when they opened a store in downtown Seattle, and I was turned away at the door because the clerk standing there took one look at me and said "There's nothing in here that will fit you. Move along.") http://jezebel.com/the-mysterious-disappearance-of-targets-plus-size-sect-1535188141?utm_content=buffer7e6a7&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
She is aware that I don't have diabetes, or high cholesterol, or hypertension (high blood pressure) or cancer, or any of the other ills that are said to be caused by being 110 pounds overweight.
She is also aware that I work out at least 3 times a week at a local gym, that I can't have dairy, eggs, nuts, onions, garlic, green beans, strawberries or oatmeal in my diet, because they cause me to have a flare and/or an allergic reaction that makes me stop breathing. Dr Mulhall is also aware of these allergies and he and I have talked about how difficult it is to eat healthy when I have Crohns and allergies. My Crohn's goes crazy whenever I eat raw fruits or vegetables, and there are veggies that, even cooked, (broccoli and cauliflower are the two that spring to mind) make my intestines go crazy and cause me pain and suffering in the bathroom. Doc M has asked me to try being gluten-free for a week, to see if that helps any, and though I managed three days, I was sick with some kind of flu, so my gut was a mess regardless of what I ate. And I wasn't hungry, so it wasn't as much of a problem to try and find gluten free foods that don't also have dairy or eggs or nuts in them.
Anyway, Dr Mulhall had recommended that I start on a new steroid that was specifically for IBD called Uceris, but my new insurance won't pay for it, and it costs $50 per pill, so two weeks dosage would run around $1,600, which is just not affordable for a family living on one income like ours. However, when I went to see Dr M last, I had the flu and I was so ill that I could barely sit up, so he just threw a lot of things at me and then recommended that I go home, drink Nyquil and get some rest and wait until I was well to even attempt to try any new medications. Then, while I was recovering from the stomach flu and an upper respiratory infection that followed close on its heels, Dr M had a family emergency and his nurses said he would not be back for three months! And instead of leaving another gastro doc to take over his patients, he left us with a nurse practitioner.
After going to see the nurse practitioner, and expressing my deep loathing of all the side effects of steroids that I ALWAYS get when I take them, (including weight gain, which doesn't come off as easily as it did 30 years ago), she agreed that we should get started with the process of getting me on Remicade, which is where Dr M said that my "plane was eventually going to land." However, I've had to have blood tests to ensure that I don't have tuberculosis or Hepatitis B, the latter of which I was vaccinated against in 1995. Apparently, vaccines don't always last, though, so my blood showed no immunity to Hep B, and now I have to go in and get the three shots to vaccinate me, and since my bloodwork was inconclusive about TB, I have to have a chest x-ray tomorrow, too. Ugh.
But! I have hopes that I will, before the end of March, be infused with Remicade at St Elizabeth Hospital. Here's hoping that it works, and doesn't make me paralyzed, like it did my brother, or very allergic, as it did a friend of mine.
Meanwhile, I have been reading lots of size positive blogs lately, and this one came up today on Facebook, which I found fascinating. http://danceswithfat.wordpress.com/2014/03/03/sex-in-a-fat-body/
Also, this is about the kerfuffle with Target phasing out their Plus-Sized Clothing Dept (and do not get me started on Old Navy being sizest jerkwads when they opened a store in downtown Seattle, and I was turned away at the door because the clerk standing there took one look at me and said "There's nothing in here that will fit you. Move along.") http://jezebel.com/the-mysterious-disappearance-of-targets-plus-size-sect-1535188141?utm_content=buffer7e6a7&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
Wednesday, May 15, 2013
Relief Is On It's Way in June
This past Monday, I called my latest gastroenterologist, lets call him Dr Chill, (because he is a cold fish and has no compassion at all) and let him know (or rather, his nurse/medical assistant know, because you never get to talk to the actual physician any more) that his sending me to an expensive gastro doctor at the UW Depart of Digestive Diseases (We'll call the UW gastro guy Dr Do-Nothing) only gained me a big bill and no treatment or help at all.
Dr Do Nothing had the gall to keep me waiting for 2 and a half hours after my appointment, and then breezing in, saying "sorry for the wait" as if it were nothing, and then telling me that I had 5 choices for dealing with my Crohns Disease, the first of which was to "Do nothing" as if I would waste all that time and money spent for parking, for the visit itself (I don't have insurance, so it is all out of pocket) and for the time my husband had to spend taking me down to the U District and sitting in the waiting room trying to do his job from his laptop for three hours. It just boggles the mind that Dr DN could be so condescending as to think that doing nothing was actually an option. After all, doing nothing is all that has been done for my Crohns for the last 5 months, and my disease has gotten progressively worse, to the point where my quality of life has gone down the toilet as rapidly as the contents of my colon. Being sick and in pain all the time doesn't allow you to do the things you need to get done everyday, and it hampers my ability to do even simple things, like grocery shop or go to the gym, or meet with friends for tea. My life diminishes to the 50 square feet that is the bathroom, where I watch the minutes and hours tick by when I should be sleeping, or making a meal for my family, or a dozen other things.
So initially Dr DN said that he still hadn't gotten my medical records from Virginia Mason and Dr Chill, though I'd been told that they were sent over 5 weeks before. So Dr DN glibly said that I might have to wait another 2-3 weeks for my medical records, specifically my EKGs, to come all the 2 miles across town from Virginia Mason Medical Center to the UW Dept DD. When I tried to explain that this was ridiculous, that they could FAX or email or even courier over the records, Dr DN said that I needed to call and light a fire under the VM people to get the files to him ASAP, so he could see if I would be able to be in a study of his for a new drug for Crohns. So I called VM, they sent over the information, and Dr DN wasted no time in pronouncing me unfit for any of his new drug studies, all because my heart has a slightly irregular beat sometimes, and otherwise beats slowly and is healthy, because I exercise and am not hypertensive at all, (no high blood pressure or blockages) despite my weight. So Dr DN threw me back to Dr Chill, saying that I was once again his problem, since the UW couldn't help me with any treatments or studies. Great. So now I am supposed to return to a Dr who has kept me off of medications for 5 months, not allowed me to take strong pain pills and watched me wash out of a VM study because of my heart, and then just lobbed me off to the waste of time at the UW, all while knowing that my Crohns has gotten worse and I've been in pain for months, while he does diddly squat to alleviate any of the symptoms? This is also a doctor who gave me the most painful colonoscopy I've ever had, and who has repeatedly told me that I need to move to Canada or the UK because I don't have health insurance here (no one will ensure me because of Crohns as a pre existing condition) and they have national health in Canada and the UK. Like it is just that easy to uproot your family and move to another country!
So I decided to go back to my previous gastro doc, we'll call him Dr GG, for Good Guy, because he was the only gastroenterologist I've had in the 13 years since my diagnosis who has actually cared about my health and treated my symptoms and managed my pain when in flare. Unfortunately, Dr GG is a part time physician who is only at VM Issaquah once a week, and he takes numerous vacations, so he wasn't able to see me until July 5! When I explained to the nurse/receptionist that this wasn't acceptable, and that I've gotten nothing from my 5 months with Dr Chill but bills and more bills and no treatment or relief from the symptoms of worsening Crohns, she said she would tell him about my plight and see what happens.
So in the past 48 hours, I've gotten three phone calls from Dr GG's office, where his nurse apologized for all I'd been through, and told me that Dr GG would like me to see a specialist gastro doc in Bellevue on June 7, so that I can hopefully get some relief before I go back to see Dr GG on July 5. Then she called today and said my appointment with Dr GG was moved up to June 28, so we're making progress on the relief front! Waiting three weeks is certainly better than waiting 8-12 weeks, so I am calling this a win for being the squeaky wheel that gets the appointment.
While I'm still far, far away from my goals of getting to a lighter weight, I feel like once I get my Crohns under control, I will be able to attempt an eating plan that makes sense for me, one where I can use my new juicer to get more nutrition from veggies and fruits that I can't eat raw or cooked without a flare. Keep your digits crossed for me, Upholstered Belly fans!
Dr Do Nothing had the gall to keep me waiting for 2 and a half hours after my appointment, and then breezing in, saying "sorry for the wait" as if it were nothing, and then telling me that I had 5 choices for dealing with my Crohns Disease, the first of which was to "Do nothing" as if I would waste all that time and money spent for parking, for the visit itself (I don't have insurance, so it is all out of pocket) and for the time my husband had to spend taking me down to the U District and sitting in the waiting room trying to do his job from his laptop for three hours. It just boggles the mind that Dr DN could be so condescending as to think that doing nothing was actually an option. After all, doing nothing is all that has been done for my Crohns for the last 5 months, and my disease has gotten progressively worse, to the point where my quality of life has gone down the toilet as rapidly as the contents of my colon. Being sick and in pain all the time doesn't allow you to do the things you need to get done everyday, and it hampers my ability to do even simple things, like grocery shop or go to the gym, or meet with friends for tea. My life diminishes to the 50 square feet that is the bathroom, where I watch the minutes and hours tick by when I should be sleeping, or making a meal for my family, or a dozen other things.
So initially Dr DN said that he still hadn't gotten my medical records from Virginia Mason and Dr Chill, though I'd been told that they were sent over 5 weeks before. So Dr DN glibly said that I might have to wait another 2-3 weeks for my medical records, specifically my EKGs, to come all the 2 miles across town from Virginia Mason Medical Center to the UW Dept DD. When I tried to explain that this was ridiculous, that they could FAX or email or even courier over the records, Dr DN said that I needed to call and light a fire under the VM people to get the files to him ASAP, so he could see if I would be able to be in a study of his for a new drug for Crohns. So I called VM, they sent over the information, and Dr DN wasted no time in pronouncing me unfit for any of his new drug studies, all because my heart has a slightly irregular beat sometimes, and otherwise beats slowly and is healthy, because I exercise and am not hypertensive at all, (no high blood pressure or blockages) despite my weight. So Dr DN threw me back to Dr Chill, saying that I was once again his problem, since the UW couldn't help me with any treatments or studies. Great. So now I am supposed to return to a Dr who has kept me off of medications for 5 months, not allowed me to take strong pain pills and watched me wash out of a VM study because of my heart, and then just lobbed me off to the waste of time at the UW, all while knowing that my Crohns has gotten worse and I've been in pain for months, while he does diddly squat to alleviate any of the symptoms? This is also a doctor who gave me the most painful colonoscopy I've ever had, and who has repeatedly told me that I need to move to Canada or the UK because I don't have health insurance here (no one will ensure me because of Crohns as a pre existing condition) and they have national health in Canada and the UK. Like it is just that easy to uproot your family and move to another country!
So I decided to go back to my previous gastro doc, we'll call him Dr GG, for Good Guy, because he was the only gastroenterologist I've had in the 13 years since my diagnosis who has actually cared about my health and treated my symptoms and managed my pain when in flare. Unfortunately, Dr GG is a part time physician who is only at VM Issaquah once a week, and he takes numerous vacations, so he wasn't able to see me until July 5! When I explained to the nurse/receptionist that this wasn't acceptable, and that I've gotten nothing from my 5 months with Dr Chill but bills and more bills and no treatment or relief from the symptoms of worsening Crohns, she said she would tell him about my plight and see what happens.
So in the past 48 hours, I've gotten three phone calls from Dr GG's office, where his nurse apologized for all I'd been through, and told me that Dr GG would like me to see a specialist gastro doc in Bellevue on June 7, so that I can hopefully get some relief before I go back to see Dr GG on July 5. Then she called today and said my appointment with Dr GG was moved up to June 28, so we're making progress on the relief front! Waiting three weeks is certainly better than waiting 8-12 weeks, so I am calling this a win for being the squeaky wheel that gets the appointment.
While I'm still far, far away from my goals of getting to a lighter weight, I feel like once I get my Crohns under control, I will be able to attempt an eating plan that makes sense for me, one where I can use my new juicer to get more nutrition from veggies and fruits that I can't eat raw or cooked without a flare. Keep your digits crossed for me, Upholstered Belly fans!
Thursday, April 25, 2013
Recycling This Blog With a New Name and Focus
Hello Crohnies and overweight, fluffy or fat friendly friends everywhere!
I've decided that instead of leaving this blog fallow, I will repurpose it as a blog about my struggles with Crohn's Disease, which I've had for over 13 years now, and my weight and sense of self acceptance.
Currently, I'm not taking anything but Azithioprine (and only a half-dose every other day) as treatment for my Crohns because my previous Dr, Doctor Lord at Virginia Mason, tried to get me into a Glaxo Smith Kline drug trial/study, but was unsuccessful because my heart is too healthy and I am not incapacitated by my weight.
So he's referred me, after 3 grueling months of blood tests, colonoscopies, EKGs and multiple visits to the Virginia Mason Hospital and Clinics located in downtown Seattle (which is really tough to drive in these days, because of traffic revisions and upgrades and other DOT insanity) to the University of Washington Department of Digestive Diseases and Dr Scott Lee, who is supposed to have a different drug trial that I can become a part of, hopefully.
Still, because I couldn't enter the GSK drug trial while on medication, I've been 4 months now without any substantive treatment for this painful gastroenterological disease. Which basically means I've been spending a lot of time in the bathroom for the past several months.
April has been a tough month in particular, because I haven't been without medication for this long in 13 years, so while the Crohns has spread down to my descending colon and my rectum, it hasn't been that painful since 3 years ago when I had an operation to remove a stricture from the juncture of my colon and small intestine. And the last time I was sick so often was when I was pumping breast milk for Nick after he was born and I kept having to run to the bathroom every time I used the hospital pump they sent home with me.
I honestly think I'd been having Irritable Bowel Disease symptoms for about two years prior, but I just hadn't found a doctor who knew how to diagnose IBD. From what I have heard and read, this is fairly common among the Crohns and Colitis community, and some people spend 5 or more years going from doctor to doctor trying to figure out why they are so sick with stomach/intestinal pain, diarrhea, bleeding and rectal fistulas and fissures (and hemorrhoids). I spent two or three months once in 1998 drinking some kind of stomach coating mixture because I couldn't swallow or eat anything more solid than babyfood and keep it down. Xrays revealed that my entire digestive tract, from my esophagus on down looked like it was wrapped in white cotton batting. I think that was my first true Crohn's flare.
Anyway, I'm still fighting to have a life in between running to the bathroom, and I've paid particular attention to doing the things I need to do for my husband and son, Nick. I also try to keep in contact with friends and relations via Facebook, and I try not to stress about things like the horrible terrorist bombings in Boston on April 15, last week. I try not to watch the news or read too many sad books, and I rely on my hopeful friends to keep me feeling like I can conquer anything, given enough time and determination.
I have been struggling to keep my exercise schedule, going to Thrive, a local gym (WIO closed down last June, which still makes me sad) at least 3-4 times a week. Now that there is a new Spin With Lynn class going, I try to ride the ridiculously uncomfortable stationary bikes Thrive provides, though recently my sore and aching rear end just would not cooperate, and I had to bow out of Sunday's spin class, much to my sorrow. Because Humira and Cimzia, both injectable biological drugs that I was on for Crohns, seemed to react in my body like a steroid (cortical, not anabolic), I gained back all the weight that I lost back in 2009, and now I am back to my heaviest, the weight that I was when I was pregnant with Nick and that I maintained after he was born via c-section. Then when I joined Work it Out in 2006, when Nick was 5 years old, I'd started to lose weight again and gain muscle tone and strength.
But I fight on, determined to not let my size or my IBD get the better of me, or keep me from being mobile and healthy as possible.
I hope that you will share my journey with me. You are welcome to sit down and have a nice cuppa tea and read.
I've decided that instead of leaving this blog fallow, I will repurpose it as a blog about my struggles with Crohn's Disease, which I've had for over 13 years now, and my weight and sense of self acceptance.
Currently, I'm not taking anything but Azithioprine (and only a half-dose every other day) as treatment for my Crohns because my previous Dr, Doctor Lord at Virginia Mason, tried to get me into a Glaxo Smith Kline drug trial/study, but was unsuccessful because my heart is too healthy and I am not incapacitated by my weight.
So he's referred me, after 3 grueling months of blood tests, colonoscopies, EKGs and multiple visits to the Virginia Mason Hospital and Clinics located in downtown Seattle (which is really tough to drive in these days, because of traffic revisions and upgrades and other DOT insanity) to the University of Washington Department of Digestive Diseases and Dr Scott Lee, who is supposed to have a different drug trial that I can become a part of, hopefully.
Still, because I couldn't enter the GSK drug trial while on medication, I've been 4 months now without any substantive treatment for this painful gastroenterological disease. Which basically means I've been spending a lot of time in the bathroom for the past several months.
April has been a tough month in particular, because I haven't been without medication for this long in 13 years, so while the Crohns has spread down to my descending colon and my rectum, it hasn't been that painful since 3 years ago when I had an operation to remove a stricture from the juncture of my colon and small intestine. And the last time I was sick so often was when I was pumping breast milk for Nick after he was born and I kept having to run to the bathroom every time I used the hospital pump they sent home with me.
I honestly think I'd been having Irritable Bowel Disease symptoms for about two years prior, but I just hadn't found a doctor who knew how to diagnose IBD. From what I have heard and read, this is fairly common among the Crohns and Colitis community, and some people spend 5 or more years going from doctor to doctor trying to figure out why they are so sick with stomach/intestinal pain, diarrhea, bleeding and rectal fistulas and fissures (and hemorrhoids). I spent two or three months once in 1998 drinking some kind of stomach coating mixture because I couldn't swallow or eat anything more solid than babyfood and keep it down. Xrays revealed that my entire digestive tract, from my esophagus on down looked like it was wrapped in white cotton batting. I think that was my first true Crohn's flare.
Anyway, I'm still fighting to have a life in between running to the bathroom, and I've paid particular attention to doing the things I need to do for my husband and son, Nick. I also try to keep in contact with friends and relations via Facebook, and I try not to stress about things like the horrible terrorist bombings in Boston on April 15, last week. I try not to watch the news or read too many sad books, and I rely on my hopeful friends to keep me feeling like I can conquer anything, given enough time and determination.
I have been struggling to keep my exercise schedule, going to Thrive, a local gym (WIO closed down last June, which still makes me sad) at least 3-4 times a week. Now that there is a new Spin With Lynn class going, I try to ride the ridiculously uncomfortable stationary bikes Thrive provides, though recently my sore and aching rear end just would not cooperate, and I had to bow out of Sunday's spin class, much to my sorrow. Because Humira and Cimzia, both injectable biological drugs that I was on for Crohns, seemed to react in my body like a steroid (cortical, not anabolic), I gained back all the weight that I lost back in 2009, and now I am back to my heaviest, the weight that I was when I was pregnant with Nick and that I maintained after he was born via c-section. Then when I joined Work it Out in 2006, when Nick was 5 years old, I'd started to lose weight again and gain muscle tone and strength.
But I fight on, determined to not let my size or my IBD get the better of me, or keep me from being mobile and healthy as possible.
I hope that you will share my journey with me. You are welcome to sit down and have a nice cuppa tea and read.
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