Why Round IV was grand:
1. They started me on a fancy new protocol last night for the super cool patients who have gone three infusions with no "problems". Instead of coming in every 15 minutes to increase my rate, they're starting me off at full throttle and letting me run the 2.5 hours. Apparently, this makes almost no difference to me in terms of time consumption, but saves the nurses the hassle of coming into my room every 15 minutes. I am an awesome patient.
2. No Benadryl or Tylenol. This is also the first time I've appeared for my appointment without being high on painkillers or in raging pain. Awesome. Next time I'll be able to drive myself and spare H.B. the wasted four hours of his life (which he insists he does not consider as such, but who wants to spend Saturday evening sitting in a hospital bed entertaining their girlfriend?).
3. Seinfeld was on for a bit.
4. There was leftover stuffing for supper when we got home.
Sunday, November 29, 2009
Saturday, November 28, 2009
this impotence will not stand, man
I don't think it's that doctors are lacking in diagnostic intelligence, I think it's that they're lacking in communication skills. No doubt they have reasons for taking certain steps before others (i.e. putting me on an elimination series of antibiotics and requesting five negative urinalyses and letting me rot for over two weeks before sending me to a urologist). They are, however, TERRIBLE at explaining why. Why they are unconcerned about the nervous spasms accompanying my loss of bladder control. Why they have not gotten culture results back to me after five days. Why they are not recommending me to a urologist after antibiotics, AZO and various other over-the-counter UTI treatments have done nothing (or exacerbated the symptoms).
Thanks to Moon Face, I was inspired to do some more research into interstitial cystitis, about which I asked the Dr during both my urgent care visits, and which they both brushed off like it was an impossibility (which I allowed because I was all but delirious on both occasions). What they should have told me was that it was important to rule out infection because interstitial cystitis has so few direct markers that elimination of UTI by urinalysis and antibiotic regimens is part of diagnosing IC. They also should have told me that if symptoms persisted despite the antibiotics, to tell them so that they could refer me to a urologist. Additionally, they should have told me that since the first portion of my cultures were also negative, it suggests that -- in agreement with my urinalyses and lack of antibiotic response -- I may actually not have an infection of any kind after all. Doctors, I have noticed, depending on their specialty, have very limited next-step projection skills.
There is a great deal of overlap between occurrence of IC and IBS which gives me hope that my GI will bring IC up as a possibility when he responds to my questions on Monday. However, being a GI he may decide to attribute what's been going on entirely to Remicade or PPR (because that is what I suggested to his nurse last week).
The short time that this has been going on (two+ weeks) relative to the typical time span that it takes IC to be correctly diagnosed (weeks to months) suggests that this still may be neither infection nor IC, but I would appreciate medical input from any of the three Drs who are now involved in this diagnosis. Really, any communication would be helpful, guys. Responding to last Monday's calls would be a super start (yes, I have taken into account that Drs deserve a Thanksgiving break, too).
Thanks to Moon Face, I was inspired to do some more research into interstitial cystitis, about which I asked the Dr during both my urgent care visits, and which they both brushed off like it was an impossibility (which I allowed because I was all but delirious on both occasions). What they should have told me was that it was important to rule out infection because interstitial cystitis has so few direct markers that elimination of UTI by urinalysis and antibiotic regimens is part of diagnosing IC. They also should have told me that if symptoms persisted despite the antibiotics, to tell them so that they could refer me to a urologist. Additionally, they should have told me that since the first portion of my cultures were also negative, it suggests that -- in agreement with my urinalyses and lack of antibiotic response -- I may actually not have an infection of any kind after all. Doctors, I have noticed, depending on their specialty, have very limited next-step projection skills.
There is a great deal of overlap between occurrence of IC and IBS which gives me hope that my GI will bring IC up as a possibility when he responds to my questions on Monday. However, being a GI he may decide to attribute what's been going on entirely to Remicade or PPR (because that is what I suggested to his nurse last week).
The short time that this has been going on (two+ weeks) relative to the typical time span that it takes IC to be correctly diagnosed (weeks to months) suggests that this still may be neither infection nor IC, but I would appreciate medical input from any of the three Drs who are now involved in this diagnosis. Really, any communication would be helpful, guys. Responding to last Monday's calls would be a super start (yes, I have taken into account that Drs deserve a Thanksgiving break, too).
Friday, November 27, 2009
Epic Thanksgiving, 2009
Perfect.
I could not have asked for a more wonderful day. Finally fell asleep around midnight, and then sporadically woke up a few times because Doxy seems to prefer to work -- or give the illusion of working -- during daylight hours only. Felt relief around 7am and laid in bed until 9 soaking up the comfort.
Having baked two different pumpkin pies last night between H.B. and myself, and an experimental cranberry tart bar dessert, there was no work to be done today before heading over to my family's house around 3pm. So we were lazy. And I did some Chanukkah/Christmas/Birthday gift brainstorming. Serious business.
Upon arriving at The House, there was the soup course followed by one of the most enjoyable board game conventions of my family's history. The main meal followed, and was the single most rewarding meal of my life; turkey, my dad made me special stuffing without celery or sausage, cranberry sauce and mom's magical yam stuffed oranges (I could not indulge in the asparagus dish). Ordinarily, I look forward to these dishes all year and stuff myself to beyond limits knowing full well that I will finish the evening with a Crohn's attack (and I usually do).
This year, I trained for a week beforehand expecting that my current flare would ruin my favorite holiday (above Rosh Hashana only because of the stuffing!). I came armed with on-the-spot interventional drugs of all varieties. I purposefully encouraged gaming between soup and main meal, and music/pool between main meal and dessert so as to allow maximal space to be made and used.
It worked. No Crohn's pain. Even during years when I'm doing well in general, Thanksgiving never fails to assert its domination over my intestines via pwning my self-restraint. My first Thanksgiving on record with no Crohn's pain.
My mother arranged a three part harmony of Mood Indigo and some other songs, and convinced my brother to compliment her unparalleled jazz piano on his acoustic. There were at least three hours of singing and playing between dinner and finally breaking out the Four Desserts, over which time my voice warbled out of its comfortable hibernation and finally relaxed into familiar bossa nova and even operatic ambitions. This was the first H.B. has heard me sing.
Unfortunately, as the music-making ensued, Doxycycline turned in its time card for the day; the dreaded and presently unidentified nervous spasms began to resurface. I made it through the music session and dessert, but was forced to take H.B. and some leftovers and leave thereafter. So unfortunate; the gaming and music-making could have gone on all night.
The bitter end has had not the slightest taint on today's sweetness, however. I am totally satisfied -- enamored, even -- and looking so fervently forward to the next family gathering that it is a good thing I can't sleep, because I have no interest in doing so :)
I could not have asked for a more wonderful day. Finally fell asleep around midnight, and then sporadically woke up a few times because Doxy seems to prefer to work -- or give the illusion of working -- during daylight hours only. Felt relief around 7am and laid in bed until 9 soaking up the comfort.
Having baked two different pumpkin pies last night between H.B. and myself, and an experimental cranberry tart bar dessert, there was no work to be done today before heading over to my family's house around 3pm. So we were lazy. And I did some Chanukkah/Christmas/Birthday gift brainstorming. Serious business.
Upon arriving at The House, there was the soup course followed by one of the most enjoyable board game conventions of my family's history. The main meal followed, and was the single most rewarding meal of my life; turkey, my dad made me special stuffing without celery or sausage, cranberry sauce and mom's magical yam stuffed oranges (I could not indulge in the asparagus dish). Ordinarily, I look forward to these dishes all year and stuff myself to beyond limits knowing full well that I will finish the evening with a Crohn's attack (and I usually do).
This year, I trained for a week beforehand expecting that my current flare would ruin my favorite holiday (above Rosh Hashana only because of the stuffing!). I came armed with on-the-spot interventional drugs of all varieties. I purposefully encouraged gaming between soup and main meal, and music/pool between main meal and dessert so as to allow maximal space to be made and used.
It worked. No Crohn's pain. Even during years when I'm doing well in general, Thanksgiving never fails to assert its domination over my intestines via pwning my self-restraint. My first Thanksgiving on record with no Crohn's pain.
My mother arranged a three part harmony of Mood Indigo and some other songs, and convinced my brother to compliment her unparalleled jazz piano on his acoustic. There were at least three hours of singing and playing between dinner and finally breaking out the Four Desserts, over which time my voice warbled out of its comfortable hibernation and finally relaxed into familiar bossa nova and even operatic ambitions. This was the first H.B. has heard me sing.
Unfortunately, as the music-making ensued, Doxycycline turned in its time card for the day; the dreaded and presently unidentified nervous spasms began to resurface. I made it through the music session and dessert, but was forced to take H.B. and some leftovers and leave thereafter. So unfortunate; the gaming and music-making could have gone on all night.
The bitter end has had not the slightest taint on today's sweetness, however. I am totally satisfied -- enamored, even -- and looking so fervently forward to the next family gathering that it is a good thing I can't sleep, because I have no interest in doing so :)
I adore my mother's squash soup.
And the wine that I could not drink.
... And the wine that I could not drink...
The turkey.
I love my mother's hands on the piano.
And I love my siblings.
Wednesday, November 25, 2009
beam of sunlight
I fell asleep at 830pm last night. There was no aggitated squirming, and no hot pad. Between 830pm and 545am, I was only woken up three times. Three. In 9 hours. Hoorah for Doxycycline. This is cause for a tremendous celebration. I think I will demand that it involve a turkey and lots of squash dishes.
I did wake up with a throbbing left leg this morning, because, well, if it's not one thing... However, gone by the time I made it to work this morning, it proved to be harmless.
I have been training this week for Thanksgiving. That's right, triathalon style training. I ate dried cranberries on Sunday and cooked salmon and zuchini on Monday, more dried cranberries and garlic bread on Tuesday. Although the garlic bread brought a bit of upset, I am otherwise six days Crohn's pain free.
Take a minute to absorb that one. Like sunlight.
Bring on the turkey.
I did wake up with a throbbing left leg this morning, because, well, if it's not one thing... However, gone by the time I made it to work this morning, it proved to be harmless.
I have been training this week for Thanksgiving. That's right, triathalon style training. I ate dried cranberries on Sunday and cooked salmon and zuchini on Monday, more dried cranberries and garlic bread on Tuesday. Although the garlic bread brought a bit of upset, I am otherwise six days Crohn's pain free.
Take a minute to absorb that one. Like sunlight.
Bring on the turkey.
Sunday, November 22, 2009
sick day 4: the final report (because i had better be well enough to go to work tomorrow)
The urgent care venture was interesting. Mostly because the mystery was somewhat resolved in only a matter of... four hours (shock and awe!).
Apparently, I don't respond to Cipro even though I've never taken any other fluoroquinolone antibiotics and could hardly have developed a resistance. So I've upgraded to Doxycycline, of the tetracycline family, with which my body is very familiar. Additionally, I was asked to take not one, but two more HCG tests along with a CBC and a tissue culture. The woman I saw today told me that my original HCG on Wednesday was positive, not negative as I was told by my goddess PCP. Today's both came out definitively negative. So, as you might imagine, I'm perplexed. If my HCG were in fact originally positive and today's is in fact negative, it is implied that the Cipro did its job and the infection is obliterated. However, the symptoms having gotten worse instead of better does not jive with this conclusion. Therefore, as we press forward with bigger and better antibiotics, I am skeptical as to their capacity for success.
However, with the combination of Azo and Doxycycline I am feeling slightly better already. Nausea and headaches subsiding. Perhaps I really had a bad reaction to Cipro... dizziness, headache, loss of appetite, nausea and weakness of limbs are all adverse effects of fluoroquinolones.
Apparently, I don't respond to Cipro even though I've never taken any other fluoroquinolone antibiotics and could hardly have developed a resistance. So I've upgraded to Doxycycline, of the tetracycline family, with which my body is very familiar. Additionally, I was asked to take not one, but two more HCG tests along with a CBC and a tissue culture. The woman I saw today told me that my original HCG on Wednesday was positive, not negative as I was told by my goddess PCP. Today's both came out definitively negative. So, as you might imagine, I'm perplexed. If my HCG were in fact originally positive and today's is in fact negative, it is implied that the Cipro did its job and the infection is obliterated. However, the symptoms having gotten worse instead of better does not jive with this conclusion. Therefore, as we press forward with bigger and better antibiotics, I am skeptical as to their capacity for success.
However, with the combination of Azo and Doxycycline I am feeling slightly better already. Nausea and headaches subsiding. Perhaps I really had a bad reaction to Cipro... dizziness, headache, loss of appetite, nausea and weakness of limbs are all adverse effects of fluoroquinolones.
sick day 3: sit rep
I can't really tell if the nausea is due to revitalized pre-flare Crohn's, or from the absurd amount of drugs I'm taking for all the other symptoms that have suddenly arisen. The pharmacists assure me that they check my file every time they prescribe me something new to make sure nothing clashes, but they are just as full of BS as anyone else, I find. Just because the cross-referencing of two (or thirteen) drugs doesn't pop up a glaringly flashy warning sign does not mean they are safe to take together. Did the pharmacist count the number of prescriptions I'm on that are 1-3x daily? Probably not. So I really have no idea what's going on, except that I feel like a zombie. A very nauseated zombie who hasn't slept in 2 days.
Since I last posted (at 230am yesterday), I have slept about four hours, which is to say that I have slept roughly four hours of the last 48. This would be totally tolerable except that I'm ill. And since I know that lack of sleep is working against me in terms of healing whatever is wrong, I am particularly irritated about it. I have accomplished, however, an excessive amount of movie-watching. My heating pad has contributed more to the electricity bill over the past three days than during any other time during this current Crohn's flare (also impressive... I'm very impressed with the artifacts of this medical enigma in general, it seems).
Good news: In the eb and flo of nausea, aching and other effects of what we will temporarily call "kidney infection" (even though that is clearly not what is going on), it escaped my attention that I have not had Crohn's pain for nearly five days. Unheard of -- absurd! And very, very encouraging.
As for the inauguration of Sick Day 4, I am off to urgent care shortly.
Since I last posted (at 230am yesterday), I have slept about four hours, which is to say that I have slept roughly four hours of the last 48. This would be totally tolerable except that I'm ill. And since I know that lack of sleep is working against me in terms of healing whatever is wrong, I am particularly irritated about it. I have accomplished, however, an excessive amount of movie-watching. My heating pad has contributed more to the electricity bill over the past three days than during any other time during this current Crohn's flare (also impressive... I'm very impressed with the artifacts of this medical enigma in general, it seems).
Good news: In the eb and flo of nausea, aching and other effects of what we will temporarily call "kidney infection" (even though that is clearly not what is going on), it escaped my attention that I have not had Crohn's pain for nearly five days. Unheard of -- absurd! And very, very encouraging.
As for the inauguration of Sick Day 4, I am off to urgent care shortly.
Saturday, November 21, 2009
sick day 2; sit rep
I should, perhaps, not make documentations during the wee hours (no pun this time) when I am particularly irritated by the fact that I am not sleeping.
I jinxed myself, it appears, by bragging that I slept an almost healthy cycle last night. The Gods of Pharmacy are having their sweet revenge (they are easily embittered). Let it be known that throbbing is not always classified as "pain", and is therefore not always defeated by painkiller, a lesson that I am learning through practice at 2:30am. Let it also be known that it is, in fact, possible for throbbing irritation to override the sedative effects of oxycodone -- a particularly impressive demonstration. I am now semi-convinced that my negative urinalysis may not have been a screw-up, and I may be taking extra antibiotics for no reason.
Second unexpected report: Boost sent me to dust off the promethazine bottle after several weeks of successfully fended-off nausea. Perhaps sugar was the culprit. I also learned that although I typically do not react poorly to cooked carrots, dried carrot chips do initiate an allergic reaction. Toast has once again won-out in allure, today. And an egg.
On the other hand, I'm plenty awake enough to do some reading without falling asleep five pages in (as has been my habit the last several days/weeks).
On that same, auspicious hand, I finished a draft of the textbook chapter today, which reminds me: my boss and coworkers are incredible, very few are so lucky. I am plenty happy with it; the weekend will be for fine tuning and healing only.
Finally, the very same proverbial hand seems to have facilitated -- after painfully ridiculous and prolonged chasing down of various graduate admissions personnel -- the confirmed reception of all of my letters of recommendation! You'd think a graduate school that promotes online applications but also accepts/requires portions in hard copy would have an efficient system of making sure the combined records eventually met in the same system. Apparently, this is not a safe assumption. Those universities which offer stubborn old-school professors the option of snail-mailing letters of recommendation do not necessarily have a system of marking that record in the online system (which, for the last few weeks, has listed my application as "unfinished" because admissions had not entered that particular letter of recommendation into the system). All four of my schools are guilty of this, by the way.
I jinxed myself, it appears, by bragging that I slept an almost healthy cycle last night. The Gods of Pharmacy are having their sweet revenge (they are easily embittered). Let it be known that throbbing is not always classified as "pain", and is therefore not always defeated by painkiller, a lesson that I am learning through practice at 2:30am. Let it also be known that it is, in fact, possible for throbbing irritation to override the sedative effects of oxycodone -- a particularly impressive demonstration. I am now semi-convinced that my negative urinalysis may not have been a screw-up, and I may be taking extra antibiotics for no reason.
Second unexpected report: Boost sent me to dust off the promethazine bottle after several weeks of successfully fended-off nausea. Perhaps sugar was the culprit. I also learned that although I typically do not react poorly to cooked carrots, dried carrot chips do initiate an allergic reaction. Toast has once again won-out in allure, today. And an egg.
On the other hand, I'm plenty awake enough to do some reading without falling asleep five pages in (as has been my habit the last several days/weeks).
On that same, auspicious hand, I finished a draft of the textbook chapter today, which reminds me: my boss and coworkers are incredible, very few are so lucky. I am plenty happy with it; the weekend will be for fine tuning and healing only.
Finally, the very same proverbial hand seems to have facilitated -- after painfully ridiculous and prolonged chasing down of various graduate admissions personnel -- the confirmed reception of all of my letters of recommendation! You'd think a graduate school that promotes online applications but also accepts/requires portions in hard copy would have an efficient system of making sure the combined records eventually met in the same system. Apparently, this is not a safe assumption. Those universities which offer stubborn old-school professors the option of snail-mailing letters of recommendation do not necessarily have a system of marking that record in the online system (which, for the last few weeks, has listed my application as "unfinished" because admissions had not entered that particular letter of recommendation into the system). All four of my schools are guilty of this, by the way.
Friday, November 20, 2009
sick day 1; sit rep
After my 3-6am outburst of energy yesterday, during which I worked on some graphs even though I said I wouldn't, I slept on and off for the entire rest of the day. In 1-3 hr increments. And got through nine pages of reading and Shrek the Third in between.
Slumber was interrupted only about four times last night -- only twice in cold sweats (score!) -- for bladder relief, which suggests that at least the antibiotics are helping even though my urinalysis was negative (?!). The kidney infection debate is still open; however, I am considering it ridiculous and am ascribing the symptoms to the flu and its collision with my Crohn's treatment battery. Nevertheless, my PCP (who, for the record, is a goddess and I almost asked her if she'd mind branching out and treating my Crohn's disease) requests another urinalysis when I'm done with the antibiotics. I have no interest in resisting her.
Toast has never been so... ... much more appealing than any other food, including chicken soup.
Slumber was interrupted only about four times last night -- only twice in cold sweats (score!) -- for bladder relief, which suggests that at least the antibiotics are helping even though my urinalysis was negative (?!). The kidney infection debate is still open; however, I am considering it ridiculous and am ascribing the symptoms to the flu and its collision with my Crohn's treatment battery. Nevertheless, my PCP (who, for the record, is a goddess and I almost asked her if she'd mind branching out and treating my Crohn's disease) requests another urinalysis when I'm done with the antibiotics. I have no interest in resisting her.
Toast has never been so... ... much more appealing than any other food, including chicken soup.
Thursday, November 19, 2009
if it's not one thing, it's at least three or four others
Right, then. I am staying home from work today (gasp!), and tomorrow (come again?).
That's right, Mama's got the pig bug (which is to say I'm being treated for H1N1 although CDC reg's now restrict the conformational test to inpatients)... and a possible kidney infection. 1) Good thing the VA did not get their next shipment of vaccine in last week when I was scheduled to get mine with the other high risk employees with chronic illness; the government is handling this distribution so well... 2) Funny thing how every single one of my symptoms is also a potential side effect of Remicade and/or Prednisone withdrawal.
Admittedly, I'm not entirely upset about this whole "stay at home sick" thing. What better opportunity to get some actual rest (she says, ignoring the blazing 3:49am that reads in the far corner of the monitor)? I don't think it's my fault that I'm 100% awake and alert right now -- I blame the triumphantly rebounding P.M. and my hyperactive bladder.
In all seriousness, I plan to spend today reading my book and allowing myself to pass out whenever my bladder will allow. Cue Adagio e piano sempre. I'll write the damn textbook chapter tomorrow.
I am pretty miffed, however, that I have to postpone my Remicade appointment which I just successfully rescheduled for this weekend so I could get that extra boost before Thanksgiving. Never fear: I will be eating stuffing; end of discussion.
In other news: ANDY CAME! Two whole nights of food, friend and board games galore*. When Andy visits, good food is created. For your viewing pleasure, the progression of Ginger Chicken with Beets and Mushrooms...
That's right, Mama's got the pig bug (which is to say I'm being treated for H1N1 although CDC reg's now restrict the conformational test to inpatients)... and a possible kidney infection. 1) Good thing the VA did not get their next shipment of vaccine in last week when I was scheduled to get mine with the other high risk employees with chronic illness; the government is handling this distribution so well... 2) Funny thing how every single one of my symptoms is also a potential side effect of Remicade and/or Prednisone withdrawal.
Admittedly, I'm not entirely upset about this whole "stay at home sick" thing. What better opportunity to get some actual rest (she says, ignoring the blazing 3:49am that reads in the far corner of the monitor)? I don't think it's my fault that I'm 100% awake and alert right now -- I blame the triumphantly rebounding P.M. and my hyperactive bladder.
In all seriousness, I plan to spend today reading my book and allowing myself to pass out whenever my bladder will allow. Cue Adagio e piano sempre. I'll write the damn textbook chapter tomorrow.
I am pretty miffed, however, that I have to postpone my Remicade appointment which I just successfully rescheduled for this weekend so I could get that extra boost before Thanksgiving. Never fear: I will be eating stuffing; end of discussion.
In other news: ANDY CAME! Two whole nights of food, friend and board games galore*. When Andy visits, good food is created. For your viewing pleasure, the progression of Ginger Chicken with Beets and Mushrooms...
Butt Mushroom.
Butt Mushroom on Legs.
*Andy had the pig bug back in April, so we're in the clear.
Thursday, November 12, 2009
Food of the Day: Turnip
Last night, I made modified garlic mashed potatoes. With turnips. [Picture to follow]
I like turnips as mashed potato substitutes because when pureed with a little garlic, they retain enough of their own flavor after boiling (or roasting) that it isn't necessary to add any butter (yay!).
Turnips are nutritionally very similar to beets: high folic acid, vitamin C and soluble fiber content.
I may have to break out the dehydrator and make some beet and turnip chips soon...
I like turnips as mashed potato substitutes because when pureed with a little garlic, they retain enough of their own flavor after boiling (or roasting) that it isn't necessary to add any butter (yay!).
Turnips are nutritionally very similar to beets: high folic acid, vitamin C and soluble fiber content.
I may have to break out the dehydrator and make some beet and turnip chips soon...
Wednesday, November 11, 2009
application submitter's remorse, and other stories
Having officially applied to graduate school, I have slipped naturally into that realm of pessimism that often accompanies the "finalization" of any piece of work. As of the moment my last application slid begrudginly into the priority bin at the post office, my stomach has been doing proverbial acrobatics (as opposed to Crohn's acrobatics... which are equally demanding of attention, but far less entertaining).
Don't get me wrong, I'm thrilled that the preparation is over until interviews. I celebrated with roasted carrots and mushrooms (notice how my reward system revolves almost entirely around "forbidden" foods), and spending my paycheck on boardgames (!!!) (I said almost entirely).
I'm just simultaneously mortified that I wont even make the interview cut. I have this lingering fear that my GRE scores will somehow emerge as the primary deciding factor in my academic fate and the admissions committee will not even get to reading my epic statement of purpose before discarding me. For this fear, I blame The Compulsion, and having declared so, henceforth dissolve the concern as it is [hopefully] not grounded in reality.
In other news, I've woken up with throbbing knees and brains the past two mornings -- a symptom of Prednisone withdrawal that I have never experienced in all my steroid dabblings. I informed my doctor that I would be holding my taper at 20mg for another week and then decreasing my weaning to 5 mg increments. Sad face; I've always been fairly stable tapering by 10mg at a time. This is a sign of old age, yes? Incidentally, I would love for someone to conduct a longitudinal study of aging in Crohnies; I have this feeling we look more like a saturation curve (the sickos, at least) beside our age- and treatment-matched slow exponential controls. Maybe CCFA will fund that one...
Another side effect of tapering the Prednisone is that P.M. is wearing off. Either that, or my body is just too tired to pay attention to it anymore. Point being, I'm exhausted. Consequently, work days are elongating. I totally and completely do not mind this... in fact, I look forward to spending more time in the lab during the winter season... I'm not sure why, but this has proven to be its own independent pattern.
For the record; I am entirely, unequivocally and unexplainably happy.
Don't get me wrong, I'm thrilled that the preparation is over until interviews. I celebrated with roasted carrots and mushrooms (notice how my reward system revolves almost entirely around "forbidden" foods), and spending my paycheck on boardgames (!!!) (I said almost entirely).
I'm just simultaneously mortified that I wont even make the interview cut. I have this lingering fear that my GRE scores will somehow emerge as the primary deciding factor in my academic fate and the admissions committee will not even get to reading my epic statement of purpose before discarding me. For this fear, I blame The Compulsion, and having declared so, henceforth dissolve the concern as it is [hopefully] not grounded in reality.
In other news, I've woken up with throbbing knees and brains the past two mornings -- a symptom of Prednisone withdrawal that I have never experienced in all my steroid dabblings. I informed my doctor that I would be holding my taper at 20mg for another week and then decreasing my weaning to 5 mg increments. Sad face; I've always been fairly stable tapering by 10mg at a time. This is a sign of old age, yes? Incidentally, I would love for someone to conduct a longitudinal study of aging in Crohnies; I have this feeling we look more like a saturation curve (the sickos, at least) beside our age- and treatment-matched slow exponential controls. Maybe CCFA will fund that one...
Another side effect of tapering the Prednisone is that P.M. is wearing off. Either that, or my body is just too tired to pay attention to it anymore. Point being, I'm exhausted. Consequently, work days are elongating. I totally and completely do not mind this... in fact, I look forward to spending more time in the lab during the winter season... I'm not sure why, but this has proven to be its own independent pattern.
For the record; I am entirely, unequivocally and unexplainably happy.
Preface, Part II
For the record:
1. I am totally, profoundly and undeservedly happy.
2. This blog is an unapologetic record of both research, and personal progression.
1. I am totally, profoundly and undeservedly happy.
2. This blog is an unapologetic record of both research, and personal progression.
Saturday, November 7, 2009
the "no more pain until this remicade shit kicks in" diet
No matter how much research I do, my mother will always be smarter than me.
She will always be better at taking care of me when I'm sick than I am. H.B. is new at all this, but someday he will be better at it than I am, too. Mom is close enough to it to know the personal urgency, and far enough removed from it to consider what I have moved on from and forgotten is important.
The Short Term, for instance. I've been so enthused about finding new ways to make vegetables more benign that I've forgotten that if I'm still having pain, they're probably not a good idea at all, even cooked and pureed. In the long term, the SCD-esque diet will probably be quite helpful in maintaining whatever level of pain-free I can achieve with the Remicade. But I have not gotten there yet -- clearly. In the short term, I have to allow myself to eat grains and starches: although they're probably feeding whatever gut flora are overgrown and causing problems, they remain the only food stuff that (unless consumed in large quantities) goes down with little to no pain. At this point in time, the goal is to avoid pain. Balancing diet to maintain that state has to come later. Horse before the cart, etc.
I've always had trouble with fresh fruits and vegetables; whether it's Oral Allergy Syndrome or Crohn's, it's an inflammatory reaction, which, if it's happening in my mouth and esophagus is probably also happening in my intestine. Since I don't have a spy down there, and my doctors seem to think my scans are "clean", I can't know for sure, but I would postulate that since my left large intestine and mid-lower small bowel throw temper tantrums whenever meals reach them, there has to be either a bigger stricture problem than Dr. P and Dr. S could see, or an inflammatory reaction to the food itself. Deductive reasoning says one of these things must be occurring. Good thing I have an amazing doctor to help me figure out which so I can make it go away faster... oh, wait...
My mom and dad are also the only people other than myself who have been doing this as long as I have. Granted, they haven't lived with me for some time, but they remain my health care consultants and medical advocates in times of need (which lately is fairly often, especially if I'm in drug-delusion mode). They remember details from the Original flares from over a decade ago... I'll be damned if I can remember flares that accurately from when I was that young. Pain has a unique way of making my brain cease to function. I also have a sneaking suspicion that details stick in your mind better when you're trying to keep your child from suffering.
Veggies are too new yet -- even cooked -- to strain in my belly, it seems. Given the ridiculous flares of the past three days, it was too soon to kick out so many carbohydrates from my diet; I need them to cushion whatever else I'm putting in (which at the moment is some variation of Boost, applesauce and sushi -- yeah, small quantities of raw fish are also harmless, go figure). So, in my mother's honor, I'm admitting defeat and stepping back to the "no pain until this Remicade shit kicks in" diet.
She will always be better at taking care of me when I'm sick than I am. H.B. is new at all this, but someday he will be better at it than I am, too. Mom is close enough to it to know the personal urgency, and far enough removed from it to consider what I have moved on from and forgotten is important.
The Short Term, for instance. I've been so enthused about finding new ways to make vegetables more benign that I've forgotten that if I'm still having pain, they're probably not a good idea at all, even cooked and pureed. In the long term, the SCD-esque diet will probably be quite helpful in maintaining whatever level of pain-free I can achieve with the Remicade. But I have not gotten there yet -- clearly. In the short term, I have to allow myself to eat grains and starches: although they're probably feeding whatever gut flora are overgrown and causing problems, they remain the only food stuff that (unless consumed in large quantities) goes down with little to no pain. At this point in time, the goal is to avoid pain. Balancing diet to maintain that state has to come later. Horse before the cart, etc.
I've always had trouble with fresh fruits and vegetables; whether it's Oral Allergy Syndrome or Crohn's, it's an inflammatory reaction, which, if it's happening in my mouth and esophagus is probably also happening in my intestine. Since I don't have a spy down there, and my doctors seem to think my scans are "clean", I can't know for sure, but I would postulate that since my left large intestine and mid-lower small bowel throw temper tantrums whenever meals reach them, there has to be either a bigger stricture problem than Dr. P and Dr. S could see, or an inflammatory reaction to the food itself. Deductive reasoning says one of these things must be occurring. Good thing I have an amazing doctor to help me figure out which so I can make it go away faster... oh, wait...
My mom and dad are also the only people other than myself who have been doing this as long as I have. Granted, they haven't lived with me for some time, but they remain my health care consultants and medical advocates in times of need (which lately is fairly often, especially if I'm in drug-delusion mode). They remember details from the Original flares from over a decade ago... I'll be damned if I can remember flares that accurately from when I was that young. Pain has a unique way of making my brain cease to function. I also have a sneaking suspicion that details stick in your mind better when you're trying to keep your child from suffering.
Veggies are too new yet -- even cooked -- to strain in my belly, it seems. Given the ridiculous flares of the past three days, it was too soon to kick out so many carbohydrates from my diet; I need them to cushion whatever else I'm putting in (which at the moment is some variation of Boost, applesauce and sushi -- yeah, small quantities of raw fish are also harmless, go figure). So, in my mother's honor, I'm admitting defeat and stepping back to the "no pain until this Remicade shit kicks in" diet.
Thursday, November 5, 2009
why driving during a Crohn's attack is not a great idea
As soon as I stepped onto the bus this evening after an awesome sushi date with my ex-post-doc, last night's record mysteriously began to play itself again. Only this time, it was dark and rainy and I was twenty minutes further from home. Can you feel the suspense building already?
Well I must disappoint you, here; the pain was not quite so spine-stiffening as last night. In fact, I read a full eight pages of my book, and absorbed roughly three (compare to last night's 2:0). Once again, I requested H.B.'s assistance in preparing my hot pad, and as I stepped into my car I realized that I was about to embark on a unique four-minute journey. It is a bad idea to drive during a Crohn's attack because when applying the brakes and/or turning the vehicle, you make more use your lower stomach muscles than you probably realize. I've never induced a muscle cramp in my stomach from driving before, but one of the turns I made tonight mid-pain-wave was made tight enough by the rainy road. I subsequently sat up straight to try to relieve it and, in so doing, released the spasms of my left large intestine and lower middle small bowel. So I hunched over again. This back-and-forth continued until I got home, had to park at the other end of the complex (on the solitary night that I would have preferred not to be caught in the rain), and had to shuffle-sprint (this must have been utterly hilarious to behold) an eighth-mile to my dominion.
Do not drive during a Crohn's attack. It will give you muscle spasms.
What I forgot to mention yesterday was the resurfacing of heartburn. It emerged a month ago when I began reintroducing solid/mush foods. That was completely understandable as my esophageal sphincter was likely reacting to the transition from pure liquid to slightly solid -- an increase in pressure, provoking reflux. This time, however, there is no new food. I ate cauliflower soup, egg, chicken and rice yesterday. I ate a bagel and a bit of sushi today. There is no excuse for heartburn, yet here it is. It is noteworthy that in eleven years of Crohn's disease I have only ever had heartburn when reintroducing solid food following a liquid diet stint. Another new (or at least newly placed) symptom! Hoorah!
Once again, I am thoroughly enjoying watching Mythbusters and tea whilst high (on oxycodone).
Well I must disappoint you, here; the pain was not quite so spine-stiffening as last night. In fact, I read a full eight pages of my book, and absorbed roughly three (compare to last night's 2:0). Once again, I requested H.B.'s assistance in preparing my hot pad, and as I stepped into my car I realized that I was about to embark on a unique four-minute journey. It is a bad idea to drive during a Crohn's attack because when applying the brakes and/or turning the vehicle, you make more use your lower stomach muscles than you probably realize. I've never induced a muscle cramp in my stomach from driving before, but one of the turns I made tonight mid-pain-wave was made tight enough by the rainy road. I subsequently sat up straight to try to relieve it and, in so doing, released the spasms of my left large intestine and lower middle small bowel. So I hunched over again. This back-and-forth continued until I got home, had to park at the other end of the complex (on the solitary night that I would have preferred not to be caught in the rain), and had to shuffle-sprint (this must have been utterly hilarious to behold) an eighth-mile to my dominion.
Do not drive during a Crohn's attack. It will give you muscle spasms.
What I forgot to mention yesterday was the resurfacing of heartburn. It emerged a month ago when I began reintroducing solid/mush foods. That was completely understandable as my esophageal sphincter was likely reacting to the transition from pure liquid to slightly solid -- an increase in pressure, provoking reflux. This time, however, there is no new food. I ate cauliflower soup, egg, chicken and rice yesterday. I ate a bagel and a bit of sushi today. There is no excuse for heartburn, yet here it is. It is noteworthy that in eleven years of Crohn's disease I have only ever had heartburn when reintroducing solid food following a liquid diet stint. Another new (or at least newly placed) symptom! Hoorah!
Once again, I am thoroughly enjoying watching Mythbusters and tea whilst high (on oxycodone).
Wednesday, November 4, 2009
on waiting it out
No sooner had I convinced my poor parents that waiting it out was the best plan of action than I had another major attack.
I have had a somewhat intense past two days at work, but I don't presume that to be the cause. I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset. Leftover cauliflower soup, tuna/crab sushi, egg, toast. These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower. I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...
This was a fairly sudden attack, as they go. I was fine the whole day until a few minutes before I stepped onto the bus home. I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end). I think I turned two pages for the sake of appearance, and read none. This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each. The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen.
So I did it: I road the bus all the way home in peak rush hour traffic with an attack. I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door. He also served me a bit of prune juice with some oxycodone (my first dose in three weeks). I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.
The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode. The reason is this: I want to know what Remicade's potential is for me. I want to get off the prednisone and see what Remicade can do for me without the aide of steroids. I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself). After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve." These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action). If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.
With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight. I'll be alright.
I have had a somewhat intense past two days at work, but I don't presume that to be the cause. I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset. Leftover cauliflower soup, tuna/crab sushi, egg, toast. These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower. I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...
This was a fairly sudden attack, as they go. I was fine the whole day until a few minutes before I stepped onto the bus home. I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end). I think I turned two pages for the sake of appearance, and read none. This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each. The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen.
So I did it: I road the bus all the way home in peak rush hour traffic with an attack. I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door. He also served me a bit of prune juice with some oxycodone (my first dose in three weeks). I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.
The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode. The reason is this: I want to know what Remicade's potential is for me. I want to get off the prednisone and see what Remicade can do for me without the aide of steroids. I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself). After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve." These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action). If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.
With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight. I'll be alright.
Tuesday, November 3, 2009
the reluctant forfeiting of my faith in medical appraisal
Alright, I'm done. I will keep weaning off the prednisone, as laid out in the original "plan"; I will keep taking the purinethol until after my fifth remicade infusion, as dictated; and I will continue on the remicade infusions until my body has a negative reaction. After that, I'm done. I'm shifting therapeutic intervention to the shoulders of diet and supplements... and I'll use my doctor for more dire incidents... such as a referral to a nutritionist that my insurance will cover.
If you have not already supposed, tonight's sardonic ramble is in honor of finally hearing from Dr. S after his month-long hiatus. I had left a message requesting that Dr. S look over my now-two-week-old SBFT and interpret the next appropriate treatment steps for himself, knowing so well as he does my history (refresher). The point of this request, my friends, was to hone in on taking steps forward in figuring out what exactly the intestinal obstacle is here, and how to work through/around it. I thought this was fairly reasonable to ask. Apparently, I am gravely mistaken about the directives of palliative medicine. Apparently, it is much more efficient to take steps backward, as long as so doing is sure not to increase medical malpractice premiums.
Dr. S's nurse called. He wants to know what my current symptoms are. Oh good, so he's going to make the connection that I made two weeks ago (see refresher) and assure me that this is clearly not a job for prednisone anymore, that remicade should kick in in seven more weeks and that until then it is important to stay on the purinethol which is still doing at least something helpful? (it is). Apparently, he is not.
The most pressing component to the last five weeks of my condition's development, in my renowned doctor's eye, was actually not the new stricture in my small bowel (which he didn't seem to think was there, btw), nor the constipation (which could easily be explained by the PPR cocktail), nor the continued abdominal pain (although significantly less frequent than four weeks ago... I did an ANOVA...). No, no -- in fact, the silver bullet onto which my doctor has latched his clearly very personal ambitions for my recovery... is prune juice. Indeed, the very prune juice I informed him that I have been drinking for the last two weeks despite the overwhelming sugar content, which causes problems of its own.
And so, you see, I'm done. Certainly not with Western medicine, because it gives me the tools to interpret my condition. I'm just done taking my doctor seriously.
By the by, the Gastroenterology and Hematology department doesn't know of any nutritionists within the System who specialize in IBDs... but they suspect there are several who have IBDs patients all the time. ... Is there a reason they can't look into this for me? I'm not sure I can think of one.
In all fairness, I am showing continual improvement in the pain and food-variety departments, it's just somewhat masked by all the other effects, some of which I can explain away and others I can't because, well, I'm not a gastroenterologist.
If you have not already supposed, tonight's sardonic ramble is in honor of finally hearing from Dr. S after his month-long hiatus. I had left a message requesting that Dr. S look over my now-two-week-old SBFT and interpret the next appropriate treatment steps for himself, knowing so well as he does my history (refresher). The point of this request, my friends, was to hone in on taking steps forward in figuring out what exactly the intestinal obstacle is here, and how to work through/around it. I thought this was fairly reasonable to ask. Apparently, I am gravely mistaken about the directives of palliative medicine. Apparently, it is much more efficient to take steps backward, as long as so doing is sure not to increase medical malpractice premiums.
Dr. S's nurse called. He wants to know what my current symptoms are. Oh good, so he's going to make the connection that I made two weeks ago (see refresher) and assure me that this is clearly not a job for prednisone anymore, that remicade should kick in in seven more weeks and that until then it is important to stay on the purinethol which is still doing at least something helpful? (it is). Apparently, he is not.
The most pressing component to the last five weeks of my condition's development, in my renowned doctor's eye, was actually not the new stricture in my small bowel (which he didn't seem to think was there, btw), nor the constipation (which could easily be explained by the PPR cocktail), nor the continued abdominal pain (although significantly less frequent than four weeks ago... I did an ANOVA...). No, no -- in fact, the silver bullet onto which my doctor has latched his clearly very personal ambitions for my recovery... is prune juice. Indeed, the very prune juice I informed him that I have been drinking for the last two weeks despite the overwhelming sugar content, which causes problems of its own.
"Dr. S recommends that you increase the number of times a day you take the prune juice. Maybe try it 2-3 times a day and see what happens?" The poor, tired voice on the other end of the line tries to redeem some thread of medical integrity from the doctor's message.I would have been totally cool with this discussion had it included any pharmacologically relevant reassurances such as those posited in the preceding paragraphs. It really doesn't take much to please me -- he didn't even need to give a correct diagnosis; all I needed to hear was some kind of medical reasoning or postulation and I would have been on cloud nine because he turned a scientific(esque) phrase.
"Well, what happens when I drink 12oz a day instead of 6oz is that I induce a Throughput episode on a pain-scale rivaling the one that put me in the ER when this began 3.5 months ago."
"Ah... well, let's keep it at 6oz, then."
"Right-ee-o."
And so, you see, I'm done. Certainly not with Western medicine, because it gives me the tools to interpret my condition. I'm just done taking my doctor seriously.
By the by, the Gastroenterology and Hematology department doesn't know of any nutritionists within the System who specialize in IBDs... but they suspect there are several who have IBDs patients all the time. ... Is there a reason they can't look into this for me? I'm not sure I can think of one.
In all fairness, I am showing continual improvement in the pain and food-variety departments, it's just somewhat masked by all the other effects, some of which I can explain away and others I can't because, well, I'm not a gastroenterologist.
Sunday, November 1, 2009
Food of the Day: Cauliflower
Cauliflower is part of the cabbage family, so admittedly, it does have the potential to make one somewhat gassy. I don't know about my compatriots, but my Crohn's Baby is adamantly convinced that all food is from the cabbage family.
It is, however, also an excellent source of ascorbic acid, which aides the absorption of iron (Hallberg & Rossander 1984); vitamin C, an antioxidant and immune booster; folic acid, preventing anemia and promoting healthy cell growth; and choline, with anti-inflammatory activity. The high indole-3-carbinol and sulforaphane content of cauliflower are also cell division regulators, and implicated in the prevention of certain cancers (Ambrosone et al 2004). Cell division, also being part of epithelial turnover in the intestines, is important to moderate in autoimmune diseases such as Crohn's/Coeliac, etc. Perhaps most importantly, indole-3-carbinol has been shown to inhibit NF-kB (a cohort of TNF-alpha) as well as its gene expression, an anti-inflammatory property (Yoon & Baek 2005).
In honor of this benign, SCD-approved vegetable, I conducted a food experiment today. After trekking (more appropriately, shuffling on H.B.'s arm) to the grocery store to buy a food processor -- which I cannot affectionately dub Ninja on account of that being its actual name -- I made cauliflower soup.
Yesterday's post being such a profound downer, I felt it opportune to renew my own vigor by diving into the potential benefit of pureed vegetables. The beatific solution to maximizing veggie goodness while minimizing the incidence of internecine Throughput: make it mush. Yes? We'll have results in two days.
Steamed cauliflower pureed with sun dried tomatoes (less acidic than oranges, pears or olives, by the way, at pH ~4.6) and green onion, then boiled in low-sodium chicken broth with some basil and garlic (this is me asking for trouble).
It is, however, also an excellent source of ascorbic acid, which aides the absorption of iron (Hallberg & Rossander 1984); vitamin C, an antioxidant and immune booster; folic acid, preventing anemia and promoting healthy cell growth; and choline, with anti-inflammatory activity. The high indole-3-carbinol and sulforaphane content of cauliflower are also cell division regulators, and implicated in the prevention of certain cancers (Ambrosone et al 2004). Cell division, also being part of epithelial turnover in the intestines, is important to moderate in autoimmune diseases such as Crohn's/Coeliac, etc. Perhaps most importantly, indole-3-carbinol has been shown to inhibit NF-kB (a cohort of TNF-alpha) as well as its gene expression, an anti-inflammatory property (Yoon & Baek 2005).
In honor of this benign, SCD-approved vegetable, I conducted a food experiment today. After trekking (more appropriately, shuffling on H.B.'s arm) to the grocery store to buy a food processor -- which I cannot affectionately dub Ninja on account of that being its actual name -- I made cauliflower soup.
Yesterday's post being such a profound downer, I felt it opportune to renew my own vigor by diving into the potential benefit of pureed vegetables. The beatific solution to maximizing veggie goodness while minimizing the incidence of internecine Throughput: make it mush. Yes? We'll have results in two days.
Steamed cauliflower pureed with sun dried tomatoes (less acidic than oranges, pears or olives, by the way, at pH ~4.6) and green onion, then boiled in low-sodium chicken broth with some basil and garlic (this is me asking for trouble).
'twas really, really good.
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