Have you ever had one of those days, where life comes to an abrupt stop, even if just for a second, a minute, an hour? The little dose of reality rearing its ugly head? As my GI kindly pointed out today, I am a ticking time bomb. Luckily, I have managed to maintain, but as was evident today, I'm carefully toeing a very dangerous line with my health. Part of the difficulty, is that, for the most part, I feel and look "fine". Granted some days my 86 year old grandmother has more energy than I do, but for the most part, I am doing pretty well.

My lab work, and scans, show quite the opposite. Inflammation markers at an all time high, and severe bone loss from a combo of long term steroid use, and inflammatory bowel disease, were today's sticking points. Next plan of attack is to measure my trough levels/antibodies against Humira since I am no longer responding, give the azathioprine another month to kick in, get my routine LFTs, and meet with my GI and hepatologist in another month. Also adding in high doses of daily calcium and vitamin D to try to combat some of the bone loss. I am, unfortunately, highly steroid dependent. If I had simple, and I use this term lightly, Crohn's disease, without any complications, I would be a candidate for a resection. Unfortunately with having severe liver disease, my body cannot handle surgery at this time. My GI is pushing my hepatologist to act a bit more dramatically, and now that I've had six months of trials and tribulations trying to control the AIH, I think it's time as well.

I feel like it's only these intermittent doctors appointments that bring me back to the reality of having chronic disease. I do not try to hide or forget about my diseases, I just simply refuse to let them define who I am. Besides taking pills daily, I sometimes forget what is truly going on. I have gotten used to my body misbehaving, GI issues, bone aches, it's all apart of my normal day to day life. These appointments serve as a friendly, if not stark, reminder, that I am human, and that my health is not to be taken for granted.

Just finished up my third full week on Bactrim DS, along with the quartet of immunosuppressing meds. I've learned that my regimen is close to that of transplant recipients. Spent the better part of this past week with a viral respiratory illness, with swollen glands, wicked sore throat, coughing and being just gross. I hope that this isn't foreshadowing the winter to come. I just feel so run down. I also have been experiencing the lovely nausea associated with azathioprine all over again, and also the hair loss has restarted.

I know I've said this numerous times before, but I feel like I'm stuck in limbo. Can't really move forward until things get under control, and doing anything humanly possible to keep from rolling back. There have been some really positive things in my life though recently, which has helped keep me above water. Some semi-famous person with Crohn's (totally blanking on whom exactly) used an analogy to describe the disease... Something along the lines of comparing the disease to a duck floating on a pond. Above the surface, everything looks fantastic, peaceful, calm, serene, but underneath the water, the duck is paddling like hell to stay afloat, to survive.