1. Apparently, I am still capable of working occasional 12 hour days.
2. Apparently, I am still capable of occasionally stopping at the store on the way home from said 12 hour work days.
3. Apparently, I am still capable of occasionally using said groceries after said 12 hour work days to cook delicious dinner.
4. I am not, however, anywhere near inclined to spend my 2 left over hours of awakeness on the aforementioned days to either work on the abstracts for my two papers, or to write a post in Hungry blog on the exquisite discussion that occurred during the morning's Journal Club.
5. It is 830 on a Friday night and I am planning to crash on my pillow. So. Maybe I'm not quite back yet... But I'm really, really happy.
For those who were not aware, JFK was on shots of steroids (among other things... like amphetamine) for Addison's disease and hypothyroidism throughout his presidency.
Therefore, the sexy face that is John F. Kennedy is not actually sexy John F. Kennedy's face; it is John F. Kennedy's sexy moon face.
The other night I watched that new House episode about Cuddy's busy day made of hell and it actually made me notably upset. I know. I promise, it's not just that I'm susceptible to television... it's that I'm susceptible to certain television when in certain states of panic/depression.
I used to be able to do that. My mornings used to begin with writing at least ten emails to my CCN volunteers/co-coordinators/affiliate organizations, I used to fight with insurance companies between classes, organize city-wide activism events during lunch (when I took it), make calls to senators while waiting for PCR runs to amplify my DNA segments, go home to tiptoe around my bipolar ex-boyfriend in the trash dump that was the "home" I shared with five filthy boys, and write grant proposals after I'd finished studying.
And yes, I did cry when that House episode reminded me of the person I can never be again much less improve upon. Granted, I do not miss all of those things, but I do miss being able to say I negotiated them almost flawlessly... with some minor debasing of my GPA.
I also miss the balance and happiness I achieved when I left my neurotic college years behind. Since this flare began, the successfully stifled negative and broken pieces of my being have resurfaced in a vengeful tumult. They are pissed off that I gave passion the reins and buried fear under the floor boards.
I held off on reporting the results of last year's graduate school expedition so as to bundle all the news into one giant bouquet of corpse flowers: rejections from Stanford, UCSF and UCLA (residency makes competition ten times greater in such a broken system). Still waiting for USC but assuming another denial. **If you're thinking of apologizing or consoling, please don't.
When the House episode concluded, H.B., seeing my red eyes immediately began damage control (partly quoted and partly paraphrased, with permission, of course):
"I can't ever be the person I want to be! [whine] I've never been the smartest, but I used to be one of the most capable people I know and now I'm failing at everything I attempt and all my dreams are shattered![bawl]" A little exaggerated, but I do like to put a dramatic spin on my despair.
"You may not be jumping through the hoops as quickly or in the same order as the people you compare yourself to, but I've never seen anyone more passionate than you are about what they do. Look at my friend X.; he's in his third year of medical school and he likes to brag about how much he works, but never about what he does or learns. And Y. has a graduate degree from [exceedingly prestigious school] -- you heard the way he talked about his job, your questions about his work were more enthusiastic than his answers. These are the people who went through the motions with the highest grades, the best numbers, the most time and energy to get through grunt work. They are academically successful, but they're not crazy about what they do or how they got there. You are crazy about what you do, and you're crazy about the way you're doing it even if it's not happening as quickly as you'd like. You need a hobby other than self loathing."
And he was right. So I started writing again this weekend.
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 attempted to make cookies a few nights ago that were both Me Friendly, and not insulting to my guest,h.b. (i.e., in my recipe 1/2 of the butter is actually applesauce, and the other half is half-non-existent). They were delicious, but, as you might imagine, are always somewhat cakey.
Incidentally, both H.B. and h.b. have iron stomachs and the superhuman skill of being able to, without flinching, eat combinations of unhealthy food that I couldn't even think about without getting nauseous. I, therefore, made a second batch with 2 whole freaking sticks of butter to satisfy my two house companions.
You might notice they came out a bit flat.
This is what happens when you adjust the amount of butter in your recipe, but neglect to account for the fact that to keep the recipe balanced you must also adjust butter's rivaling ingredient (i.e., flour). When you neglect Le Chatelier's principle when baking cookies, my friends, you get a mouse. Sprinkled, no less. It helps if the rack in your oven is a bit crooked.
The third batch was perfect, btw. And contained copious amounts of oatmeal and raisin.
In honor of Lindsey's comment and Kathryn's latest recipe recommendation, today's Food of the Day is the mushroom!
Mushroom's are pretty Me Friendly because my particular brand of Crohn's is not usually obstruction. The only reason anyone ever tells you to avoid mushrooms is because of the high fiber content, but in that regard they are friendlier than many leafy vegetables, and so, grief-stricken by the absence of kale and Brussels sprouts from my diet, I console myself with mushroomy magic.
One of the least known traits of mushrooms is that they are rich in vitamin D, whose important role in preventing/ameliorating Crohn's has been discussed on many venues of late (specifically in reference to a Canadian study just released in J Biol Chem, and aFrench theory published in Medical Hypotheses).
Shitake extract has been patented as protective in inflammatory bowel diseases (both Colitis and Crohn's). It has been known that mushroom extracts generally have an immunomodulatory effect, activating cytokines (including TNF-alpha). The Shuvy group demonstrated in 2008 that the Shitake extract Lentinan increased concentrations of TNF-alpha in the spleen and liver of mouse models of Colitis. They also showed that this increase was correlated with improvement in Colitis severity (as measured by mini-resections and immunohistochemistry, which is an impressive measure that many studies of digestion in IBDs lack, but I digress...). Like many other treatment therapies for IBDs, Lentinan was previously shown to be effective against tumors (Kidd 2000). As a member of the Crohn's club but not the Colitis coterie, I would have preferred that Shuvy et al also looked at TNF-alpha levels in the intestine; alas, some other time and place.
But, of course, medicating by patented herbal supplement is quite different than through diet. You will not see the grandiose effects of Shitake extract from just eating mushrooms a few times a week. In the long term, however, exposing your intestines to the B-glucan in Shitake mushrooms may prove equally beneficial. This is why we need longitudinal nutritional studies that augment experiments on petri dish cell colonies.
And with that, we ascend from the mouse studies of Colitis, and move up to the clinical studies specifically on Crohn's in humans.
A large study by Petermann et al suggested that more people in NZ report intolerance to mushrooms (and corn) than beneficial effects. Among those people reporting adverse effects from mushrooms, there was a higher frequency of the gene OCTN1 than in the general OR mushroom-friendly Crohn's public, suggesting that the gene had more to do with the mushroom adversity than did the Crohn's.
The occurrence of the OCTN1 gene variant among the Crohn's population is not consistent between European and NZ studies, and has yet to be performed in the United States. I do not find this surprising as even between individual Crohnies of the same community there are variations in food tolerance: the same diet than improves one person's condition may exacerbate it in another (Jowett et al 2004; Riordan et al 1993).
However, the subjects in the Petermann et al study who had the variant OCTN1 gene showed a bias toward intolerance of mushrooms. It is the first I have read of a gene-diet interaction specific to Crohn's disease, and it is awesome. Additionally, it does not exclude mushrooms as a healthy food in a Crohn's diet -- that is to say, if said Crohnie seems to be able to tolerate them. Rather, it explains why some Cronhies can handle mushrooms (ostensibly without OCTN1 vatiation) and some cannot (ostensibly with OCTN1 variation).
The only other Crohn's-mushroom study I can dig up is a 1989 report that, unless chewed with great care, mushrooms maintain their shape and size and can cause obstruction in Crohn's patients (Tschundi and Schmid).
As a final thought, most diet books say that Shitake mushrooms are the easiest to digest, but that fiber can be a harmful factor (homage to obstructions, again) and to eat cooked with other vegetables or gains to reduce an adverse reaction (Raven, The Definitive Guide to Foods & Herbs for Crohn's, Colitis and IBD).
