I've always appreciated the opportunity to be a big fish in a small pond. My undergraduate studies were formative because in a liberal arts environment I was able to build what I wanted to exist if it was not already at my disposal. I am able to flourish in my work environment because I work in a small lab, and am proficient in almost all of the many techniques we employ -- an opportunity devoid in most research technician experiences in major labs. Why in the world I thought I wanted to become a water strider in a small pond, I... well, I was naively drunk on ambition and high on painkillers at the time. It happens.
It has taken me longer than I expected to come to terms with what I am finally admitting was, in fact, not a major failure or condemnation of my prospective life. Explaining this requires an extrapolation of the last two years.
In 2008 when I graduated, my plan was to stay in Portland working in my newly salaried lab position, get a grant funded, get a paper published, and apply to medical school. However, having met H.B. and had a heart to heart with my boss, I relented to the reality that medical school would probably be my physiological undoing. That was June of 2009.
So mid-June, I put away my MCAT books and invested in the GRE (which is much cheaper, much simpler, and much much less inspiring). That was a Friday.
On Saturday, I was writhing on the bathroom floor unnerving H.B. with labor pains such as I hadn't felt in ten years.
In August, I finally met with Dr GI who was content to see me after staving me off with oxycodone for two weeks. Glossing over the finest details, I took the GRE at the end of the month on painkillers, nausea medication and having eaten only fake broth, baby food and crackers for several weeks. Not one of my best performances.
Nonetheless, I applied in November to four of the most prestigious PhD programs in Neuroscience that I could find. In my defense, it's not my fault that the only places who offered my ideal program-PI combo were the hardest to get into in the country. It is my fault, however, that I was so fool-heartedly naive as to think I might be competitive in those programs (as a non-resident), and to discard any opportunity that wasn't up to par with my quixotic dreams.
Since November, the condition of my guts has improved astronomically. That being said, I am not yet what I would call "physically well". But it's getting there.
And here, my dear readers, is the kicker: I'm not crushed by this failure.
I am nothing if not obdurately and nonsensically ambitious. Making the drastic changes of heart and career direction that I did in June should have been, of themselves, enough to convince me to take another year to get it all put together the right way. A healthy me might have been sufficiently adjusted and prepared applications by November. Having been in pain, starved and on drugs, however, I am willing to make the concession that I was hasty and would have fared better from having given myself a year to stabilize. That wise thought did not occur to me at the time. The things a deadline can do to one's soul...
I now have another year to make myself invaluable, to heal and to get it right the next time around. And I can survive this set-back. Things may actually get accomplished this year, too; I have three papers and two conferences in the works, and will be moving toward disability accommodation so as to avoid another tragic event as that which usurped my intentions last August.
Needless to say, I'll be looking into smaller ponds next year.
Currently, I have had six Remicade infusions, have dropped 6MP, and have finally tapered successfully (or so it seems) off of Prednisone after six turbulent months. I am eating 4-6 small snack/meals a day and avoiding pain 70% of the time by having eliminated quite a few foods entirely. Nausea is usually quelled by the late afternoons, and fatigue has been mild and tolerable.
Another year to spend in my beloved lab, in my beloved Portland, near my beloved family and with my beloved H.B.. Things could be worse.
Showing posts with label purinethol. Show all posts
Showing posts with label purinethol. Show all posts
Thursday, March 11, 2010
Summary
Labels:
accommodation,
crohn's,
disability,
fatigue,
flare,
food,
graduate school,
GRE,
nausea,
oxycodone,
prednisone,
purinethol,
recovery,
remicade,
science,
work
Wednesday, February 17, 2010
slow and steady
I don't notice how many times I wake up in the middle of the night anymore, only that I'm nauseous and unenthused when my alarm goes off, and I'm wearing different sweaty layers of pajamas than I began with.
I'm noticing for the first time how much of my day is spent cleaning up after the trail of hair I leave wherever I move -- off of my clothes, off of the floor, off of my office chair, off of the sink after I lean over it to wash my hands, off of my head to prevent it from falling in larger quantities. There is a reason I'm letting h.b. (hungry brother) do most of the cooking while he is here, and it's not soley because he is a master chef. And I marvel at the ill apparent betrayals of balding... thank you, M&D.
And I'm noticing that often when H.B. and h.b. want to play games or cook feasts, all I want to do is sit on the couch and work on my paper or watch the Olympics. It's not the wipe-out kind of fatigue from hormone deficiency, it's more the kind of fatigue that follows an evening of sitting on the toilet in pain (or waking up myriad times each night). Only, I'm not in pain. Not that kind of pain; my baseline irritation level is just more intense than it once was.
Here is the good news.
I convinced my doctor that despite the small degree to which my RBC count is low and my MCV/MCH are high, it would still behoove me to get off of one of my PPR team players. I suggested getting rid of the 6MP -- which is what failed me this summer after 8 years -- while I still had a small regimen of Prednisone as a back-up. He agreed. One more down, only one more to go.
I am down to 3mg/d Prednisone. Things seem to be going more smoothly this time. I still have episodes of P.M., but they are infrequent as compared to past weeks.
More good news to come, I promise. With graphs, no less...
I'm noticing for the first time how much of my day is spent cleaning up after the trail of hair I leave wherever I move -- off of my clothes, off of the floor, off of my office chair, off of the sink after I lean over it to wash my hands, off of my head to prevent it from falling in larger quantities. There is a reason I'm letting h.b. (hungry brother) do most of the cooking while he is here, and it's not soley because he is a master chef. And I marvel at the ill apparent betrayals of balding... thank you, M&D.
And I'm noticing that often when H.B. and h.b. want to play games or cook feasts, all I want to do is sit on the couch and work on my paper or watch the Olympics. It's not the wipe-out kind of fatigue from hormone deficiency, it's more the kind of fatigue that follows an evening of sitting on the toilet in pain (or waking up myriad times each night). Only, I'm not in pain. Not that kind of pain; my baseline irritation level is just more intense than it once was.
Here is the good news.
I convinced my doctor that despite the small degree to which my RBC count is low and my MCV/MCH are high, it would still behoove me to get off of one of my PPR team players. I suggested getting rid of the 6MP -- which is what failed me this summer after 8 years -- while I still had a small regimen of Prednisone as a back-up. He agreed. One more down, only one more to go.
I am down to 3mg/d Prednisone. Things seem to be going more smoothly this time. I still have episodes of P.M., but they are infrequent as compared to past weeks.
More good news to come, I promise. With graphs, no less...
Labels:
crohn's,
fatigue,
nausea,
prednisone,
purinethol,
recovery
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).
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.
Labels:
flare,
food,
oxycodone,
prednisone,
purinethol,
recovery,
remicade,
SBFT
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.
Labels:
crohn's,
ER,
food,
prednisone,
purinethol,
recovery,
remicade,
SBFT,
science
Tuesday, October 27, 2009
Curtailing Monday
It appears that I have lied again. The Weekly Throughput has arrived... on Tuesday? I attribute the 48h delay to PPR/food, and the significant decline of accompanying pain to the 6oz of prune juice which I have endowed my guts every day for the last week.
I supposed it is only fitting, since today is the 27th.
I supposed it is only fitting, since today is the 27th.
Labels:
food,
prednisone,
purinethol,
recovery,
remicade
Friday, October 23, 2009
Tofu, Squash and the Microbial Squadron
In the quest to ween off of the short-term friendly diet base of breads and rice, I am finding two things:
1) My allergies dictate that a myriad of exceptions from the rules be formulated, and
2) These diets -- particularly the ones that are based on moving away from modern food-preservation and agricultural technology -- are far too nit-picky for my stress level. That is fantastic for people who can and/or need to be that scrupulous with what they put into their bodies (often Coeliacs and Rheumatoid Arthritics, both malabsorption-centric), but not for me.Current quests:
1) to replace most rice noodles with various stringed squashes, and
2) replace most breads with tofu.Current obstacles:
1) If my SBFT results come back rampant with strictures, I will not be able to eat stringed squash, and
2) tofu is "illegal" on the SCD diet (my guiding reference).Current absurdities:
1) Spaghetti squash is high in complex carbohydrates. Why is it on the SCD diet if this is so? Because these complex carbohydrates are not starches (2), the favorite sustenance of the microbial squadron. Therefore, spaghetti squash is excellent for the SCD diet, but not so excellent for me... in terms of making it through my system, rice noodles are better. Sacrifice the carbohydrate eradication or risk intestinal rupture? This is going to involve a very slow process of replacing carbs with fiber one food at a time; elsewise, my poor brain will not be able to suppress the hormonal onslaught of PPR-bred anxiety.
2) The reason that tofu is illegal on the SCD diet is because of the ambivalence of its carbohydrate content. Apparently, no one has bothered to figure out what carbohydrate prevalence results from the fermentation and processing of the genetically manipulated soy beans that beget tofu. My condition at the moment is more defined by "solid substance sensitivity" than by my concern for entirely starving out the microbial forces in my gut (see above). Therefore, the carbohydrate content of tofu being so minimal as compared to its protein and fiber content -- even as its carbohydrate chain specificities are unknown -- I will allow it. I simply can't afford to eliminate everything by-the-molecule, only to reduce. Baby steps.
Additionally, screw complete elimination of rice because if I cannot eat sushi once in a while life is just not worth the hassle.
Labels:
food,
Food of the Day,
gut flora,
Paleolithic,
prednisone,
purinethol,
remicade,
SBFT,
SCD,
science,
tips
Sunday, October 11, 2009
Food of the Day: Pumpkin Cheesecake
"To live in a creative way requires extreme and sensitive perception of the orders and structures of relationship to individuals, society and nature. In this case, creativity can flower. It is only when creativity is made subservient to external goals, which are implied by the seeking of rewards, that the whole activity begins to whither and degenerate" -- David Bohm & F. David Peat; Science, Order and CreativityYesterday's adventure to the South Park Blocks Farmers Market with my parents resulted in the acquisition of some very tasty treats. Among them; chanterelles, orange anise sugared buns and a particularly eminent Sun Spot pumpkin. A little inspiration from Mom lead to the conclusion that since everything I eat, no matter how mild, seems to feed this flare, there is no reason to so conservatively restrict myself. Why not use the tools at hand to do some more creatively aggressive tracing of causal relationships?
The quote above from David Bohm and F. David Peat's book is an homage to our conversation in the bustling Market: I have decided that my GI's current adherence to "external goals", aka palliative diagnosis, is impeding on my recovery. Deferring the goal of quelled symptoms to a more subordinate one, I can explore (carefully) the next steps in terms of testing my tummeh. This quote -- and this book -- mean many other things to me, but as does most incite from these great physicists, it applies to the manifestation of every infinitely small constituent of existence... especially food.
In other words, my remaining October adventure will be directed at distilling a more comprehensive food-pain pattern. The more closely I watch the 30hr digestion mark, the more easily I can isolate which episodes are Crohn's, which are IBS, which are from what food and which are/are not clinically improving from the Prednisone-Purinethol-Remicade (PPR). We'll get into which medication is solving what problem later down the line... right now they are just superfluous variables, and that is bad science.
Therefore (!), avocado, beans, broth and bread; you're lovely, you're truly spectacular foods, but I need to feed my poor immune system some substantial nutrients...
Tonight I made chicken and chanterelles in a white wine reduction and coconut milk sauce. Rotini bed not shown.
This Sunday afternoon, however, was devoted to the Dairy-Free Pumpkin Cheesecake Experiment. Using my Eminent Market pumpkin, I augmented this awesome recipe from Elana's Pantry. Instead of using whole milk yogurt (which would unequivocally be my undoing), I used a 4oz tub of Tofutti Better Than Cream Cheese (which was proportionally perfect). I also reduced the amount of Agave nectar, went light on the vanilla extract and added some nutmeg.
Sidenote: Yes, I do have a squash, pumpkin and general October obsession. You are so lucky that I have refrained from posting about Candycorn and my glow-in-the-dark skeleton oven mit...
Labels:
avocado,
crohn's,
food,
Food of the Day,
prednisone,
pumpkin,
purinethol,
recovery,
remicade,
science
Thursday, October 8, 2009
Remicade Round III, and Other Stories
Epic events of the week of October 5th 2009:
1) My boss brought up that he finally noticed that my face had become a planet. He had been watching for it, apparently.
2) I lifted an older woman off of the concrete at the entrance to the Hospital, where she had face-planted after tripping over that obnoxious yellow striped curb. Approaching the scene, I was about six feet away from her when she fell, headed speedily toward my bus. Seeing her mid-flight, I surveyed the number of samaritans around that might save weak, immuno-suppressed me from having to be the one to lift her off the ground; a hospital guard, the Veterans' bus driver who delivered her, and three other Veterans were present. Nonetheless, none of them moved toward her... they just kind of peeked over at her without wanting to get any closer -- yes, the Veterans Hospital GUARD and the Veterans Hospital ESCORT -- and so I was forced to diverge from my path. Crouching in front of her, I did as I was trained to do as a physical therapy assistant back in yesteryear, blah blah, a crazed and delusional encouter occurred. I got her to a stable upright position, and glared mercilessly at the guard and escort who had stood by and watched a fellow employee of half their stature do their job for them. "Is she okay", the guard shimmies toward me with his arms crossed to ascertain the liability of the situation to the hospital. All she was able to coherently report was that she was fine and that she had fallen over the curb, which is what I relayed to His Daintiness. Little does he know -- if he didn't deduce from my glare of death -- that he almost got his face punched in. I may still have the compact build of a gymnast and walk like I'm six feet tall and own the turf beneath my feet, but it just doesn't strike me as logical to let a little girl pick up an older woman twice her build (indeed) when that kind of thing is in your job description for the express purpose of hospital liability. Hopefully this woman was just crazy, and not carrying any diseases for me to contract.
3) Monday's Bus Attack was mimicked yesterday. The pattern of the Weekly Episode has been aggitated: this fourth "weekend" attack which I currently attribute (perhaps erroneously) to the shortening in Bisquik, has officially been three-days prolonged (possibly by the beets, for they were first ingested following Monday's original attack). We're still looking at three days negative Throughput. [What this means, I couldn't say. Neither could my GI, because he is incommunicado. Neither could his nurse, for she is not allowed to make medical speculations, apparently.] Fortunately, I got home before the worst set in. Unfortunately, I had to tank up on oxycodone before heading to my third Remicade infusion, which was delayed by an hour and a half because Wednesday nights are apparently peak traffic time for the Infusion Center. No Tylenol because the oxycodone was based in Tylenol. No Benedryl because Benadryl + Percocet = exaggerated sedation and constipation. No poor reaction because, well, I'm a rock star.
4) Today, I learned to inject rats. My coworker is on vacation beginning tomorrow, my boss is in New York until Monday, and I -- the Mouse Lady -- have been commissioned to do some palliative sucrose care for some rats who are not recovering ideally from past weeks' surgeries. Coworker is the Queen of Rat Handling, among other things, and has prepared me well. The only thing that can stop me from cosseting these sicklings is if my allergy to them activates, which, with the help of Remicade-Prednisone-Purinethol, will not be a problem! Pretty sweet luck, eh?
5) My new favorite part of the weekday is Breakfast. In attempt to develop a habitual food-drug ingestion pattern, I've begun frying an egg with a piece of toast every morning, accompanied by the first of the day's drugs, and a few rounds of board game with H.B. before meandering off to the transit center. The food is rather crucial to the Prednisone not causing nausea (and thus the additional ingestion of Promethazine). The board game is essential to getting face time with H.B., which is minimal these days, and for pacing what would otherwise be an unnecessarily rushed morning (id est, I wake up at 530am and leave at 7am instead of 6). Huge. Fan.
6) The Pharmacy has me disgruntled. They did not think that it was necessary to notify me that my GI being incommunicado, they did not successfully get him to renew my Prednisone prescription, which was, consequently, not prepared for me. At all. They thought it would be opportune to wait to tell me this until I confronted them. Fortunately, I had some expired pills from last year's bout, for whatever good they did. Unfortunately, the pharmacy only gave me three days worth of hold-over pills until such time as they could... do not a damn thing to move the instigation process forward with my GI.
"Ma'am, I can see there is a record that Dr. S has been notified," says the kind pharmacy technician.
"Yes, I understand that, but he is out of town until the end of October and hasn't responded to the notice. Since I need this prescription within the next two days, would it be possible to forward the renewal notice to my PC?"
"No, there is a notice for Dr. S so he should respond to it within two days."
"... <dumbfounded pause> Alright, but if he were going to respond, it seems like he would have done so already since I initially called in the renewal ten days ago. Is there no way to renew the prescription through someone else since it is critical that I pick it up within two days?"
"No, the notice is in the box so he will respond. If he doesn't respond within two days we will send a notice to someone else," she's quite on-the-ball, this one.
"... Is there a reason we can't just do that now given the time-sensitive nature of the situation?"
There wasn't a reason. But there was also no going-around said non-existent reason... so I'll be calling again tomorrow.I don't understand why they don't understand how to pick up a phone, but I know enough about the language and intertwinings of medical services to beat them at their own game of Feigned Idiocy... so I'm on them.
Labels:
crohn's,
flare,
food,
nausea,
oxycodone,
prednisone,
promethazine,
purinethol,
recovery,
remicade,
work
Sunday, October 4, 2009
another step backward...
Tonight I made roasted chicken breast with beets (my adventure food of the week!) and onion (which I had to discard). As soon as I put the dish in the oven, on came an attack quite similar to the one I had last weekend at Family Grill Night... only longer lasting, and more painful.
One major episode a week is fine.
One major episode a week when I'm eating as little as I'm eating while on three different kinds of intense medication is not okay.
What I love about roasting chicken is that it tastes perfect without any additional seasoning, which is great for me; the less rococo the better. Even the safe seasonings like paprika and turmeric have their short-term risks, sadly. Fortunately, oxycodone kicked in during the time my supper was roasting, and I was able to enjoy a small portion of it. I can't explain how incredible roasted beet tasted after so long...
One major episode a week is fine.
One major episode a week when I'm eating as little as I'm eating while on three different kinds of intense medication is not okay.
What I love about roasting chicken is that it tastes perfect without any additional seasoning, which is great for me; the less rococo the better. Even the safe seasonings like paprika and turmeric have their short-term risks, sadly. Fortunately, oxycodone kicked in during the time my supper was roasting, and I was able to enjoy a small portion of it. I can't explain how incredible roasted beet tasted after so long...
Labels:
flare,
food,
oxycodone,
prednisone,
purinethol,
remicade
Wednesday, September 30, 2009
Prednisone Mania II: Public Transit & Stripetti Squash
For those who were apprehensively awaiting the report on my wearing a face mask during each of the five flights taken on the California adventure, the venture was successful. I was quick to smother this small victory, however. No sooner did I get back to riding public transit to/from work every day than did the urgency to protect myself become inchoate... for whatever reason -- likely familiarity of the daily ebb and flo. Because the person sitting next to you on the bus when you are at your most vulnerable is always the singular person coughing, and because I got my flu shot last week, I now have a Cold.
This means three things:
Anxiety + Hypomania = Less Than Exalted Nattie. I am upholding aplomb with vitamin C and stripetti squash hash browns! No echinacea, because it specifically induces synthesis of TNF-alpha mRNA (Raduner et al 2006; Gertsch et al 2004). And possibly with the scrapping of late-night work tonight, to be replaced with some much-needed Battlestar Gallactica.
This means three things:
1) despite the hypomania of the prednisone I am becoming utterly burnt out by 10-12 hour work days,
2) my concern over catching the flu is exacerbating the hypomania which I am otherwise trying to combat, and
3) I am going to have to push back my third Remicade infusion because it, as an immune system smasher, can't be administered while ill (go figure).These three things mean three more things:
1) anxiety over maintaining my momentum to see this work week through; the tissue processing, the number crunching, the mice prep for next week's experiments, the drug prep for next week's experiments, the behavioral training for next week's experiments, and the poster that needs to be printed on Friday... they're all very time-dependent and have crucial deadlines which I can't meet unless I continue to work 10-12hr days.
2) anxiety over having to wear a mask on the bus versus nabbing a spot by the back window where I can let airflow through even in the cold/damp without disturbing anyone else, and over not being able to avoid the mask at all in the mornings when the bus is most crowded, and over lacking the chutzpah to ask H.B. to drive me to work every day until I bypass this thing. Yes, you may laugh at the asinine superfluity of this one; I blame the drugs for obstructing my usual paths of logic. The mask on the airplane is one thing, but on the bus to work? With the same people I see every day of my life??...
3) and, last but not least, anxiety over interrupting my Remicade schedule at the third infusion (3-5 are the critical stages in terms of crossing a threshold into having an actual effect). The sooner the Remicade starts to stand on its own, the sooner I can taper off of prednisone, the sooner I can taper off of Purinethol. One immune system smasher is better than three.
Stripetti hash browns with cayenne pepper and paprika.
Labels:
echinacea,
food,
prednisone,
purinethol,
remicade
Saturday, August 22, 2009
Remicade plus 1
I walked out of the hospital last night without stumbling. No nausea, no fever, itching or any other indication of allergic reaction. They didn't prep me with the standard Benadryl mix either because I had so much painkiller in me already. This old post I found was very helpful in last-minute preparation.
H.B. survived his second procedure at my side; I have a hunch that as this continues he's going to experience an eventual inuring toward needles and IVs. My parents initiated him into the world of being my advocate. Poor thing has no idea how much this may interrupt his lifestyle. Maybe I'll be able to go alone to these infusions eventually. Until then, I am insuperably lucky.
This morning, I'm sucking down prune juice and amylase-heavy boluses of cracker. Oxycodone is sitting untouched on the dresser and all the pain left in my colon is masked by the discomfort of 6 days bloating.
Still shoveling 40mg/d prednisone accompanied by 100mg/d 6mp until the Captain indicates otherwise. I want a teriyaki chicken burger.
H.B. survived his second procedure at my side; I have a hunch that as this continues he's going to experience an eventual inuring toward needles and IVs. My parents initiated him into the world of being my advocate. Poor thing has no idea how much this may interrupt his lifestyle. Maybe I'll be able to go alone to these infusions eventually. Until then, I am insuperably lucky.
This morning, I'm sucking down prune juice and amylase-heavy boluses of cracker. Oxycodone is sitting untouched on the dresser and all the pain left in my colon is masked by the discomfort of 6 days bloating.
Still shoveling 40mg/d prednisone accompanied by 100mg/d 6mp until the Captain indicates otherwise. I want a teriyaki chicken burger.
Labels:
oxycodone,
prednisone,
purinethol,
recovery,
remicade
Tuesday, August 11, 2009
18d to the GRE
Tuesday morning: Boost, 6mp, levisin, peppermint pill, probiotic.
Tuesday afternoon: Boost, ginger pill, levisin.
Tuesday evening: baked potato, peppermint pill, minus a cup of blood.
Symptoms: nausea (the kind that you get high in the stomach when you vomit nothing but bile for hours on end), fatigue, pain (stomach and intestinal), diahrrea, blurred vision, and an insane craving for Chinese food.
Well, I haven't studied for two days and I'm feeling anxious. But not enough to try to study between running to the restroom every ten minutes. I think I'm still on the right track, though. It can be done. I keep having to remind myself that the reason my scores aren't improving on the practice tests is because I'm not focusing and my attitude is, "I'll do better when I'm more alert"... as if magically I'm going to be more alert and less nauseas 18 days from now.
I plan on taking the practice exams in sections from now on (still timed) instead of all together. This should help the maintain focus. Should. I have no interest in masking this - it's fucking hard. The material is simple, but the task of focusing and blocking out the pain and the malaise and exhaustion is... well, exhausting. Honestly, my motivation to do well at this point is so that once it's overwith I can meet with my prospective mentors in California the following week with pride and purpose.
I'm finding the confabulatory prognostication of failure and defeat to be more harmful than helpful, as usual. Therefore, my goal for the next three weeks is to concentrate on what I'm doing now, and agree with myself that if I study assiduously, the outcome of the test will be indicative of that. Baring in mind that I am not a genius, and, in fact, have other qualities that trump that quality, I can be content with an above-average score... which is usually where I fall academically.
Speaking of research experience (which is my second most attractive scientific asset), I'm actually writing this at work. Truth be told, when my boss is out of town and my coworkers don't even see fit to come in, I have no quams about sitting here writing for the bulk of my time. I feel no obligation to perform above and beyond when my boss is not here. So I'll write, I'll get the critical parts of protocol done, I'll read some journal articles, I'll run to the restroom about twelve times, then I'll catch a bus home and hopefully be able to study a bit during the ride... and not have to get off the bus and waddle to the nearest public restroom and finally find one only seconds before... you get the idea.
This is a bit how my internal pep-rally goes:
I am not an academic prodigy, but... I have intelligent creativity, tremendous work ethic, astronomical ambition, indestructible curiosity, a history of begetting and carrying-out great things, and a unique ability to write and communicate that almost zero scientists that I have met can challenge.
Tuesday afternoon: Boost, ginger pill, levisin.
Tuesday evening: baked potato, peppermint pill, minus a cup of blood.
Symptoms: nausea (the kind that you get high in the stomach when you vomit nothing but bile for hours on end), fatigue, pain (stomach and intestinal), diahrrea, blurred vision, and an insane craving for Chinese food.
Well, I haven't studied for two days and I'm feeling anxious. But not enough to try to study between running to the restroom every ten minutes. I think I'm still on the right track, though. It can be done. I keep having to remind myself that the reason my scores aren't improving on the practice tests is because I'm not focusing and my attitude is, "I'll do better when I'm more alert"... as if magically I'm going to be more alert and less nauseas 18 days from now.
I plan on taking the practice exams in sections from now on (still timed) instead of all together. This should help the maintain focus. Should. I have no interest in masking this - it's fucking hard. The material is simple, but the task of focusing and blocking out the pain and the malaise and exhaustion is... well, exhausting. Honestly, my motivation to do well at this point is so that once it's overwith I can meet with my prospective mentors in California the following week with pride and purpose.
I'm finding the confabulatory prognostication of failure and defeat to be more harmful than helpful, as usual. Therefore, my goal for the next three weeks is to concentrate on what I'm doing now, and agree with myself that if I study assiduously, the outcome of the test will be indicative of that. Baring in mind that I am not a genius, and, in fact, have other qualities that trump that quality, I can be content with an above-average score... which is usually where I fall academically.
Speaking of research experience (which is my second most attractive scientific asset), I'm actually writing this at work. Truth be told, when my boss is out of town and my coworkers don't even see fit to come in, I have no quams about sitting here writing for the bulk of my time. I feel no obligation to perform above and beyond when my boss is not here. So I'll write, I'll get the critical parts of protocol done, I'll read some journal articles, I'll run to the restroom about twelve times, then I'll catch a bus home and hopefully be able to study a bit during the ride... and not have to get off the bus and waddle to the nearest public restroom and finally find one only seconds before... you get the idea.
This is a bit how my internal pep-rally goes:
I am not an academic prodigy, but... I have intelligent creativity, tremendous work ethic, astronomical ambition, indestructible curiosity, a history of begetting and carrying-out great things, and a unique ability to write and communicate that almost zero scientists that I have met can challenge.
Labels:
fatigue,
flare,
food,
ginger,
graduate school,
GRE,
levisin,
nausea,
peppermint,
probiotics,
purinethol,
studying,
tips
Sunday, August 9, 2009
crohn's and coeliac
Sunday morning: 6mp, levisin, peppermint pill, ginger tea, probiotic and oatmeal.
Sunday afternoon: split pea soup.
Sunday evening: levisin, promethazine, peppermint pill, ginger tea... baked potato and spinach.
Now then. Way the hell back in 1984, the two most prevalent instigators of Crohn's were dairy and wheat (Workman et al). However, most Crohnies are told that wheat is the lesser of the two evils and end up embarking on a primarily bread-packed diet, especially when ill. A decade later, there is a notably high prevalence of Coeliac disease in Crohn's patients (Tursi et al 2005). Huh... I wonder how in the world this might have happened.
[note: I reserve the right to use the scientific spelling of coeliac disease, since celiac is meant to be called the disease of the coelem...]
I have two working theories.
1) Crohnies seek out the most mild diet possible, including wheat breads to try to give some kind of nutritional value to the meager gustatory regimen and subsequently develop Coeliac or gluten-sensitivity due to the overload of gliadin and transglutaminases that are the trademarks of gluten/wheat intolerance.
2) Coeliac and Crohn's are actually cohorts.
I like the Tursi study because, unlike many medical case studies, it actually has a pretty thorough methods protocol (yes, I am particularly scrupulous about scientific protocol). When they conclude that all patients should begin a gluten-free diet upon CD diagnosis, this recommendation is sound. Namely, all of their case study patients were diagnosed with CD for the first time immediately prior to being subject to this correlative Coeliac study.
What I would have liked to see is the prevalence of actual villous damage in CD patients with antibody markers of Coeliac. This study, however, looked only at biomarkers of Coeliac, and not at histological damage. If most CD patients with Coeliac disease do not have villous atrophy, it suggests that Coeliac evolved after the onset of Crohn's inflammation, is in early or benign stages, and is the result of an elevated wheat intake (likely inadvertent) in the quest for a "Crohn's friendly" diet.
I would also like to see a study in veterans of CD to see what symptoms of Coeliac they exhibit, which would confirm or reject my working theories. A girl can dream, eh?
--
The point of this post is that I'm now trying to modulate (but not eliminate) my gluten intake... just for the hell of it. Coeliac disease has been discarded from my list of contributing ailments by several blood tests, so I'm not really concerned, but it is interesting.
Labels:
coeliac,
crohn's,
food,
ginger,
gluten,
levisin,
peppermint,
probiotics,
promethazine,
purinethol
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