Welcome to AutoImmusings!
I’ve been puzzling over how to start this blog and decided while cooking dinner this evening that this might be a good way. I was cooking Romaine lettuce. I’m not able to eat raw vegetables because I have Crohn’s Disease. (Every now and then I break the rule in a stupid attempt to see if it’s really valid. It is.) However, I still need to eat green, leafy vegetables and I like them, besides. So, I cook them. (Hat tip to Chef Gordon Ramsay’s TV shows!)
Tonight, I cooked the tender leaves in olive oil with a tiny bit of butter added, in which I had already sauteed some chopped Anaheim peppers and green onion, and some assorted spices. Cooked Romaine can be quite delicious if you employ some creativity and take care with the process. Under-cooked is pointless and overcooked is inedible. Moderation and creativity are important. (Sense a transition?)
Those of us who belong to the Auto-Immune family have to navigate life with a lot of care and creativity. I think that we need to reach out to each other, share what we’ve learned and brain-storm what befuddles us. AutoImmusings is my attempt to do just that, with some thoroughly off-topic musings thrown in for good measure. My passions are food, literature, travel, and education, which serve me well both within and without the auto-immune spectrum.
And, speaking of a spectrum, auto-immune manifestations run the breadth of it. From the day on which my internist first told me that the flu which seemed to recur with increasing frequency was actually Lupus, he suspected, mydiagnosis has changed, been refined, or added onto several times. My first rheumatologist initially thought I had Rheumatoid Arthritis and then moved toward Systemic Lupus later. When the SCL-70 antibody showed up positive repeatedly but I remained asymptomatic, he told me not to worry. But the gastro-intestinal manifestations did emerge and are now prominent. Crohn’s Disease was also discovered in my small intestine. The best I can describe it now is a Lupus-Sclero overlap or mixed connective tissue disease with Crohn’s. It’s a lot to manage.
Indeed, it seems as though most of us do have more than one auto-immune disease or syndrome to manage. Lots of folks are stuck in a state of flux, too. As I’ve seen, it can take several years to understand and identify everything that is going on. The process can take a physical, emotional, financial, spiritual, and psycho-social toll. I’m blessed to have a wonderful internal medicine doctor in a place where the rheumatologists come and go and haven’t been all that impressive, besides. As I prepare to consult with another new one, I confided to my internist how disgusted I was with the last one. He took the fact that I looked good, wore jewelry and makeup and dressed nicely to my appointment as some sort of indication that I wasn’t really sick. “Didn’t he understand that I have to do that to keep my spirits up, that I do it for ME and not for anyone else?” I blurted out, rhetorically.
That’s one facet of living with “but you look so good!” diseases. There are many more. I generally try to see the funny side of it all but sometimes I give in to a lamentation or two. Not often, I promise. Oh, and shortly after my “rhetorical blurt,” I vowed to look like hell for my upcoming first visit with the new rheumy so she can get the full dramatic effect so expected from these diseases, hahahaha. We shouldn’t fail to disappoint! Would rags indicating my financial distress be over-the-top? 😉
I’m glad you’re here. Let’s cook our Romaine together!