Wednesday, April 29, 2009
The incision stings, particularly at one point where the skin is not quite rejoined (at my tummy roll - see, I told the doc the roll would present trouble but he ignored me!). Now, more than ever, I wish I had flat abs. This roll is trouble with a capital T!
I'm getting around like a old man with arthritis. I stagger half-erect in Matt's robe, barking things like, "Get that damn Jello away from me!" and "Your stupid dog pooped on my carpet!" (My mother keeps making me JELLO of all things, and to make things fair, her dog DID poop on my already stain-riddled carpet. A person who spent time in a hospital on a clear liquid diet loathes Jello.)
Last night at 3 pm I started coughing. Coughing makes my insides feel like little explosions and I grabbed my abdomen, holding tightly, hoping the staples wouldn't pop out. I told Matt to please get me some water. He looks into our bathroom and says, "There are no glasses." And he's just standing there, like a goofball as my innards are bouncing around and I'm groaning in agony. So, I said what any reasonable person in pain would say: "WHERE DO YOU THINK THERE ARE GLASSES, MATT, UH, UHHH, COME ON, WHERE DO (COUGH) THINK, UHHH? GO TO THE DAMN KITCHEN (COUGH) OR I SWEAR TO GOD (COUGH COUGH)...." So the poor boy booked it downstairs for some water and came back up with a tall glass of the stuff, to which I tried to drink and promptly spilled all the contents on the mattress as I could hardly raise my body in my stapled state. "I NEED A (COUGH) DAMN STRAW YOU MONKEY!"
So that's how it pretty much is these days. I am a lovely house companion, and my mom and Matt mostly move out of the way when they see my shadow stumbling their way. Speaking of, someone get me my Percocet!
Tuesday, April 28, 2009
"It looks like a bomb went off in there!" (As he motions to my abdomen.)
"Just a couple of days ago I sliced you open like a fish! And now look how great you're doing!" (As he gives me the green light to go home.)
"Oh, yeah, it was gross in there!" (Commenting after I asked how everything looked inside.)
And now I'm home to heal!
Pictured: Not Dr. P.
Monday, April 27, 2009
I have been having bms (not a nice consistency or anything) but nonetheless things have been MOVING since late last night. The surgical team said my recovery mimics that of a laproscopic surgery and my surgeon will be visiting me tomorrow bright and early and may clear me to go home! They also took me off of my IV pain meds and I've been holding steady on pills, and are impressed that I've been handling real food well all day. (Although things have been loudly gurgling and I've been going to the bathroom often.) This is normal. My surgeon thinks my small intestine was like a bottleneck and things were getting blocked up there. Now, that it's removed, things will be traveling faster and hopefully (fingers crossed) the pain will abate. (Although I hope not too fast - I really don't want to start the Crohn's bathroom runs again!)
Of course, it's still very slow going getting up, and when I have to cough I go in full "hunker down" mode. I just reached far for my laptop and my incision is stinging, and I'm tired and can only read for so long. But...I feel great! I'm looking forward to a few weeks on the couch enjoying some pain-free reading, Oprah and Ellen watching, and, of course, blogging!
Thank you to Leigh Ann and Kate for visiting me in my luxe hospital suite and bringing the type of high-brow reading I adore (e.g. "Are you there, Vodka? It's Me, Chelsea.")!
Sunday, April 26, 2009
Friday, April 24, 2009
he's even cleaning the stove!!!
(Which is more than I can say I've ever done.)
(And shudders at the thought, obviously.)
(Click on the photo for full facial effect.)
Thursday, April 23, 2009
The CEO of a large HMO dies and goes to heaven. St. Peter shows him to a lovely villa, wonderful music, great views, full staff of servants, gourmet meals, etc.
The CEO says, "This is terrific!"
"Don't get too comfortable," says St. Peter. "You're only approved for a three-day stay."
Tuesday, April 21, 2009
"Psst! Yo, photograher, quit standin' there gawkin' and SAVE US!"
Bonding With Their Downward-Facing Humans
Published: April 9, 2009, NYT
Bright Side, of The Bright Side of Crohn's, facilitated a friendly and informative chat with us Crohnsies yesterday evening. (Thank you Bright Side!) I, for one, asked a lot of questions regarding surgery, and found the chat therapeutic and uplifting. (I also mentioned Wet Ones, which deserve credit in their own right.) Bright Side will be scheduling these periodically, so please check back for the opportunity to speak to those who critique their poo as much as you do!
Sunday, April 19, 2009
The abdominal pain had resurfaced this weekend after breakfast on Saturday. It was a gorgeous day -- our cherry tree had erupted in charming white flowers in a matter of hours, and after the pain medication soothed my belly, I was up, doing errands, and helping my father-in-law with yard work, who was visiting for the weekend and helping Matt finish our laundry room. But by the evening, the pain had returned. As I waited for the pain medication to kick in, I realized it hurt to laugh, or even to take a deep breath. I thought, this is what it's going to be like after surgery (but worse).
Two friends on Friday commented on my strength. Although I am flattered they said this (and I boasted to Matt, maybe, five times about this), I do not feel strong. Today I am a ball of self-pity. There is nothing strong, or eloquent, about it. It's ugly and infantile. The women on Matt's side of the family have an annual "Ladies Weekend", which has taken us to D.C. and New York in past years. This weekend was Ladies Weekend, but I chose to not go, due to my health.
They visited Matt's cousin, Julia, who is a freshman at Penn State, and at the Nittany Lion Inn, met Penn State head coach Joe Paterno and had a group photo taken with him. They looked lovely and excited. If you're from Pennsylvania, or a fan of college football, you know Joe Paterno. And although I don't enjoy football, and don't get this whole "JoePA" thing, I was jealous! Although it was a wise decision not to go, I wanted to be there! I was mad at my disease for making me cancel. Instead I was lying in bed, nursing a sore torso.
When I woke up this morning, feeling more ill, I was testy, even to the dog. And I cried to Matt, snot running down my nose, and spouted ugly things like, "You have no idea what it's like!" and "Do you know how hard this is for me?!" Matt deviated from comforting me, to getting impatient and irritated. He has heard this all before. I realize this is hard for him, too, and it's not his fault he doesn't want to spend all day up in bed with me. Just because I reach for the pause button when I'm not feeling well, doesn't mean he needs to stop living, too.
So, I am ready for this surgery. I am scared shitless, and it might not make me better, but I am more scared of further isolated those around me. It's time to be strong, and I'm finally getting ready for Friday.
Saturday, April 18, 2009
Friday, April 17, 2009
- Hot showers
- Lounging in bed after a long day (after a hot shower, of course)
- Coming home to my dog, Penny (who, for some reason, is always more happy to see Matt than me...It is my belief that he's training her on the sly to do this!)
- Blogging! (But of course!)
- Taking 3 minutes to read an article and 2 hours to mull over all the reader's comments (Does anyone else have this particular trait?)
- When Matt cooks and takes a lead on household duties (This week's frittata was pretty darn good!)
- Dessert (Sorry I ate that whole hazelnut chocolate bar and 1/2 of your Lindt bunny, Matt.)
- This weekend's weather (Finally I can open our windows and get some fresh air!)
- Spring (By the time I'm out of the hospital, the buds on our maple tree will be leaves!)
- A clean house (Which I'll be doing this weekend in anticipation of my mom arriving and staying with me, and who, every time I talk to her says, "You better have your house clean for me! I don't want dust bunnies everywhere!" Don't worry, mom. I'll put extra dog fur and dust bunnies in the guest bedroom!)
- Silly tv and their silly magazine counterparts (refer to Gossip Girl, a few posts back)
- Having the where-with-all to realize -- even with having Crohn's -- how fortunate I am (even though I get a little self-pitying and zany at times).
What are the little, everyday things that get your through the day? I'd love to hear them!
That lovely drawing is courtesy of Mary Peterson Illustration.
Thursday, April 16, 2009
Wednesday, April 15, 2009
"You look scared," she said. I am. None of this is new, but when I spoke about surgery before it was just that - surgery. I had a lot of jitters, mostly about my future battle with Crohn's and more immediately, the pain involved. But now I'm just...shallow breath nervous. The countdown is here. I'm already not taking anything that can cause blood to thin, as dictated by the surgeon. I will have surgery in nine days.
When it comes down to it on the day of the surgery, you are alone. It's just you, your body, and the medical team in the OR. And when they put you to sleep and make that first incision, I'm not Kathryn, who asks neurotic questions and writes a silly blog, but Patient X who has fluid-filled intestines, a stringy fistula and a stubborn abscess.
Sunday, April 12, 2009
It's moments like this when my disease seems insignificant. Yesterday I enjoyed good food and loving company, and my pain was minimal. I am in a bit of discomfort now, but something about the surroundings makes it nothing more than a slight inconvenience. (On the flip side, when I have days like this, I also reconsider surgery - sometimes the intense pain is just the push I need.)
Still, this is no way to enjoy life - it's the perfect morning for a brisk walk with Penny on the adjoining gravel roads (and I can tell she's thinking the same thing), but I think my abdomen would cry out in pain just as I got to the end of my in-laws' long and winding driveway.
So I'm sitting and enjoying what good I have now - which is a lot. I have very little to complain about outside of my Crohn's, and it's these peaceful moments that just seem to say: "You'll be fine."
Saturday, April 11, 2009
Friday, April 10, 2009
So, of course being the neurotic freak I am (and because I'm having MAJOR SURGERY!) I called him on Thursday to have some questions answered. The first, of course, being: "So, doc, how are we going to, like, reinforce this incision because I want to have a baby soon and as my stomach gets huge I don't want that incision opening up and the baby crawling out!!" I really said it like that. (That's sort of the relationship we have; I think he finds me relatively amusing, or he's just being super patient and nice, which I also have respect for.) Anyway, he said I have nothing to worry about (doi). Okay. Next question: "What can I do to prep for surgery now?" He told me to be active and in good shape. I responded with the following: "Woah, woah, woah! That is a tall order for two weeks!!! Have you SEEN my stomach rolls?!" (Again, I really said that.)
And basically, the upshot of our fabulous phone conversation is the following: he's going to try not to take more than two feet of intestine out (I was a little miffed at this as I thought I was getting like eight inches out), the surgery is going to take up to about three hours (WHAT?! What the heck is he going to be doing in there for three hours?!), he promised to be properly caffeinated because my surgery is in the afternoon, and he told me I was going to hate him the day after surgery when the nursing staff was going to make me get up and walk because it will be "extraordinarly painful". At least the man is honest.
Oh, and he also said the following, which anyone who has come in contact with me for the last day has heard: "I'm not going to lie; this is not going to be a simple, easy surgery - you have a lot going on in there." I took this as: "You might die on the operating table, so divy up your belongings now." So I told my co-worker Leigh Ann she can have my bobbly head turtle and dinosaurs, Courtney in benefits can have my pretty wrap and the banana sitting on my desk (she's way healthy), and my neat alien-like mirror was up for grabs (Kate, if you're reading this, I betrove that lamp to you!). I also IMed Matt and told him he can of course have our dog, Penny, and he just replied with "Well, what about the house?" HELLO! I just told you I may die on the operating table! No one is taking me seriously!
I also asked about the dreaded poop bag. Well, I call it a poop bag, but the technical term is an ileostomy, and it's when the intestines are in such bad shape they really can't sew them together, so they bring the intestine to the surface of the skin (on your abdomen) and you escrete waste through there into a pouch. They can be reversed when your intestines are in better shape and can be re-joined. When I was in the hospital back in November I was told I may have an ileostomy, to which I replied, "I do NOT condone this!!!" The doctors didn't care and ignored my protests. So, of course I had to ask my surgeon about my poop bag prospects this time around. I said, "I am not going to have a POOP BAG, right??!!!!" I am very blunt. He said, "It would take you having a heart attack on the table for me to do that." I am not really sure what that meant, but I took that as a "no" so I was pleased. He said my CT scan last week showed a vast improvement in my intestines since November (back then he said it looked like a bomb went off in my abdomen, so I'm guessing anything is an improvement).
And that is that. I'm still crying about it, but apparantly I'm also making lame jokes, so I think I'm getting a little bit better, day by day...
Wednesday, April 8, 2009
Please let me preface this by saying my mom is a well-educated, well-read individual. But, today she started forwarding me articles with titles like "Why Hospitals Are So Risky"! So I called her - and there she was, on the computer - to tell her to quit it, or else. Here is an excerpt from our conversation (I swear this is not doctored and took place):
Mom: Does Dr. _____ where a tie?
Me: I don't know, why?
Mom: Does he wear a tie? You have to make sure he tucks his tie in.
Mom: Just make sure! I was just reading about that!!!
Me: Um, are you serious? He will wear scrubs and scrub in.
Mom: Well, House wears suits sometimes.
Me: Oh my god, you mean, House on TV?!!! As in, House the TV SHOW?!
Me: (incredulous) House is a tv character! He doesn't even play a surgeon! I can't talk about this anymore. I have to go.
I swear this woman has a master's and gets most of the Jeopardy answers correct, but....MY GOD.
(Mom, if you are reading this, I mean this all in good fun and love. But....still!!!)
Photo: Look at that tie! Trying to be innocent!
Tuesday, April 7, 2009
I'm absolutely terrified. I'm not even going to try to be funny, or witty, or irreverent in this post: I am tired, scared, and mad. I wish there was a better way. I wish that half of my doctors didn't disagree with the other half! I wish there was a solution. I don't consider an 8-10 inch bodily incision and the hacking off of parts of your intestine an agreeable "solution".
But I'm done; my hands are up - I surrender! Not to say I won't be fighting this disease, but something has got to give. I acknowledge that.
My abscess is still there. My terminal ileum is still greatly inflamed. And, above all, I'm just hurtin'. (When a narcotic drug isn't doing it for you anymore, you know something is wrong.)
More about all of this later, you know, when I can compose a more thoughtful post. But above all, thank you for listening to me rant and rave (I know it's not always fun listening to a girl complain).
Sunday, April 5, 2009
I was healthier then. So healthy (and foolish, in fact) that I was not taking my maintenance medication, Pentasa, regularly. In the fall I suffered for a month from abdomen pain and night sweats until I was admitted to the hospital in mid-November with a baseball-sized abscess in my pelvic region. This was my first serious bout with Crohn's disease, and for those who read the blog, you know the disease is still very much active.
Since the fall and the beginning of my flare-up, I have become much less active and much more emotionally fragile. After my hospitalization, my mother stayed with me for a week as nurses came to the house showing me how to property administer my IV antibiotics and TPN (total parenteral nutrition) into my PICC (peripherally inserted central catheter) line. She learned with me and prepared my jello and broths (I now abhor both). After spending his days in the hospital, Matt returned to work.
Although no longer in that situation, having Crohn's is an emotionally scarring experience, and not just for the patient. Every evening after work is a touch-and-go experience. Many days I am fine and we laugh and watch television in the evenings down on our over-sized couch. We'll walk our dog, Penny, around the neighborhood and discuss our days (although they're never really that interesting). Penny will wait patiently for fallen food scraps as Matt or I make dinner, and then around 11 I'll retreat to bed as he stays up late into the night coding or playing his video game of the moment.
Some days after work I retreat right to bed, and only come down for a belly-friendly dinner (breakfast foods are often good for this). I lay in bed reading or on the computer, and Matt spends a lot of his evening with me in bed. He hates it up there. He finds the bed uncomfortable and likes his big-screen tv in the living room, complete with a Nintendo Wii, Playstation, and XBox (boys will be boys!). He'll complain sometimes, but despite his protests, he often still lays with me and I can regularly trick him into giving me back rubs, too (although he swears he's "developing arthritis in his fingers" due to this).
Matt has been very much involved in my Crohn's treatment. He knows as much about Crohn's as I do, accompanies me whenever I ask to appointments, and above all, has acted as my personal caregiver in the last several months. When in bed, and in pain, he retrieves my medications. And water. Or a book. Or the laptop. It is never-ending. I was diagnosed with Crohn's early in our relationship and he never once thought it "gross" or made any sideways comments about the condition (and I would of booted him out the door if he did!).
When I'm in pain, he's there. When I'm happy and making medical strides, he takes just as much joy in those small steps. Just this week he layed in bed with me and watched Gossip Girl. Yes, he bitched and complained endlessly, and teased me about my choice in entertainment (this is coming from a guy who spends his free time playing Grand Theft Auto, though), but he stayed at my side through that "tedious" hour.
And maybe it goes without saying our relationship has been particularly chaste lately. When you're chronically tired and in discomfort "I'm not in the mood" takes on dizzying new heights, and when the title of this post -- "When partner becomes caregiver" -- becomes a reality. Loss off physical intimacy is just another victim of the disease, and gosh darnit, we're newlyweds! But of course, he never complains.
This post is dedicated to Matt and all our significant others who go through the emotional ups and downs of this disease as well, and still have the love and compassion to make us laugh even when we're mad at the world, self-pitying, and in pain. Thank you.
Friday, April 3, 2009
Please enjoy this essay by NYT Editor, Dana Jennings, on his ailing friend, partner, and member of the family, Bijou.
Thursday, April 2, 2009
At its best, American health care can be very good. For Microsoft employee Mark Murray and his wife, Melinda, their employee health plan paid for eight years of fertility treatments and covered all the costs of a very complicated pregnancy. "If it wasn't for our health insurance," Murray says, "we wouldn't have a baby boy right now." The Murrays' medical bills totaled between $500,000 and $1 million, and their plan covered every penny.
But beyond large, high-wage employers like Microsoft, FRONTLINE learns that available, affordable, adequate insurance is becoming hard to find. Small businesses face a very bleak outlook for finding and keeping coverage. Coverage is becoming more expensive and less comprehensive, with high deductibles, co-pays and coverage limits. Georgetown University Research Professor Karen Pollitz explains that for many people, the current system is "like having an airbag in your car that's made out of tissue paper: I'm so glad that it's there, but if I ever get in a crash, it's not going to protect me."
Outside of employer-based health care plans, matters are even worse. Americans seeking insurance in the individual market must submit to "medical underwriting," and if they have a pre-existing condition, they will likely be denied. Kaiser Permanente Chairman and CEO George Halverson says frankly: "I could not get insurance. I've had heart surgery, and so I am completely uninsurable in the private market. So it's important that I keep my job."
Across the U.S., FRONTLINE finds people making life decisions based on health insurance, stuck in jobs because of so-called job lock. One such person is 23-year-old Twin Cities, Minn., resident Matt Johnson, who put his career dreams on hold to get a job at Menards home improvement store because its benefits package covers his ulcerative colitis. Americans even stay in bad marriages, says Professor Pollitz, "because they just can't afford to divorce their health insurance."
For those Americans who find health coverage in the private market, there's no guarantee it will protect them. In 2007, Palm Desert, Calif., realtor Jennifer Thompson received a letter from Blue Cross accepting her for coverage that read: "Congratulations! You have been approved for coverage with Blue Cross of California. ... The immediate value of your coverage is peace of mind." But then Thompson discovered she had a cancer that required surgery, and three days after leaving the hospital, she received a letter from Blue Cross saying that her insurance was "rescinded," leaving her uninsured and owing more than $160,000 in medical bills. Blue Cross cited Thompson's previous history of cancer and results from a recent doctor's visit as the reasons for the rescission. "Our system is not working," says Professor Pollitz. "It's designed to cut out on you right when you need it the most." When questioned about Thompson's case, Sam Nussbaum, chief medical officer of WellPoint, which owns Blue Cross of California, told FRONTLINE that because of legal considerations, "I can't speak to that circumstance ... but no one likes to see a situation like this. People are buying health security."
In the past, some states required insurance companies to cover everyone but found that many people waited to buy insurance until they fell ill, causing "adverse selection," or a higher ratio of unhealthy to healthy people in the insurance pool. As a result, insurance companies stopped doing business in those states. Today, only five states—New York, New Jersey, Massachusetts, Maine and Vermont—guarantee everyone insurance, a "privilege" reflected in premiums. "If we look at the average premium of those states," says WellPoint's Nussbaum, "that premium is three times higher on average—maybe $600 to $700 versus a [state] where the insurance market has allowed medical underwriting."
For some Americans, life becomes a quest to find and keep health insurance. In 1994, Nikki White, a Bristol, Tenn., native with dreams of becoming a doctor, was diagnosed with lupus, a serious but treatable autoimmune disorder. Too ill to work, she lost her health insurance for several years, but then received coverage from the state's Medicaid program. Soon, budget cuts made her ineligible for the state program. A few months later, White was rushed to the ER with severe lupus complications and racked up nearly $1 million in medical bills. She finally secured insurance under the government HIPPA law, but her condition was too advanced, and in 2006, at the age of 32, she died. White's primary care physician, Amylyn Crawford, tells FRONTLINE: "Nikki didn't die from lupus. Nikki died secondary to the complications of a failing health care system."
Around the world, other developed democracies offer universal health care, requiring insurance companies to cover everyone. People are mandated to buy it; insurance for the poor is subsidized; and governments control prices by setting the cost of everything from doctors' salaries and hospital rooms to drugs and MRIs. But efforts to implement similar policies in the U.S. have proven unsuccessful. In 2006, Massachusetts implemented reforms mandating everyone be covered by health insurance, but there are still problems of affordability. FRONTLINE profiles the Abramses, a Massachusetts family of four earning $63,000 annually, who found that although they were too prosperous to receive a health care subsidy, they could not afford to buy a health care insurance policy at around $12,000 a year. "What we're finding out in Massachusetts," says veteran insurance industry executive and consultant Robert Laszewski, "you can mandate that people have health insurance, but if it costs more than they can afford, it doesn't matter."
As President Obama launches his plan for reforming health care, Kaiser Family Foundation President Drew Altman tells FRONTLINE: "This is the first big opportunity for health reform since ... [the] early 1990s. And a question is again, pointedly, whether we will blow the opportunity again this time or [whether] we will actually get it all done or get something significant done." But consultant Laszewski wonders if Americans have the will to make it happen. "Every doctor I meet says he's underpaid. I've yet to meet a hospital executive who thinks he or she can operate on less. I have yet to meet a patient who is willing to sacrifice care. So we have this $2.2 trillion system, and I haven't met anybody in any of the stakeholders that's willing to take less. And until we're willing to have that conversation, we're just sort of nibbling around the edges."
Yesterday was one of those such days. I worked in the morning, had a last minute CT Scan in the afternoon and missed several hours of work, and then drove an hour away for a night event that ended at 10 pm.
I had my CT Scan scheduled for this week at the same facility that conducted all my other CT Scans, and which my surgeon (well, one of them, ha ha) is affiliated. We wanted the same team of radiologists to look at this CT Scan, and of course have access to all my past records. Then my insurance company called yesterday morning and dictated I go to another facility (a cheaper facility) and have it done. It would take at least 48 hours for them to send the results to my doctor. So I had to move my surgical consult to next week (and thank god there was an opening – the next one was the last week of April!) and book it home to gather all of my past medical records and CT Scan CDs so I can make it to the facility in time to drink the barium, have the CT Scan done that day, and then book it 40 miles away to the work event.
I know I am complaining, and it’s awfully unbecoming. But that work event was tediously awful; my body was not responding well to the barium and my stomach was loudly gurgling during speakers’ presentations. Although not ladylike, I had gas like you couldn’t believe. My clothes were stretched tight and I spent 15 minutes in my car prior to walking in just trying to fart as much as possible. (Yes, I said fart.) These weren’t baby farts, either. They were eight second long ditties, I tell ya. Where did all of this air come from?! Throughout the night I sat squirming in my chair and at one point just had to escape to a private area to “relieve” myself (empty stairwells are very good for this).
When I climbed into my car to drive home, I removed my hosiery and undid my skirt so my big belly could breathe. I drove tilted on one butt cheek so the air could escape without restriction (this is not a fabrication).
Now, you may think this gross, but I’ve gotten over bodily anything over the past few years. Or you may think I’m embarrassing myself. Whatever. Everyone farts, everyone poops, and everyone has an anus! So there.
I didn’t mean for this post to be a diatribe on flatulence. I actually wanted to speak about this week’s Frontline, which detailed the vast shortcomings of America’s healthcare system. That’s why I started out about my (unnamed) health insurance company.
I am terrified if I lose my health coverage through work. I – like so many Americans – am not insurable through the private market. And I know, with my tests and doctor visits, I am raising my colleague’s insurance premiums for next year. Lovely.
Affordable healthcare for all Americans shouldn’t be a privilege, but a right.
My next post will have the link, and information, regarding “Sick Around America”, which aired Tuesday evening on PBS’s Frontline.
I would not say it’s an “enjoyable” program, but one that is essential to watch.