So in a lovely turn of events in the past two weeks, I am now prepping for an upcoming surgery. My gallbladder, thanks to chronic inflammation, is no longer functioning and must come out. I ended up in the emergency room 2 weeks ago, with a slightly abnormal ultrasound. I was then discharged and released and told to follow up with a HIDA scan to see how well my gallbladder was functioning. Lucky for me, I had no stones, but after the HIDA scan found out that my ejection fraction was under 10%. My doctor prefers surgery for anyone with a scan under 38% so... Yeah I definitely make the cut for that one.


I'm meeting with a surgeon tomorrow. One of the things my GI doc is concerned about is taking multiple liver biopsies as well as doing a biopsy of the tumor on my liver while in there. He also gave me a fair warning that I may be forced to do an open surgery rather then laparoscopically due to severity of my Crohn's and the close proximity of the diseased intestine to the gallbladder, which increases the risk of complications.

Fingers crossed tomorrow will go well, and it can get in quickly for surgery. I'm at my wits end and can't deal with the lack of sleep much longer.

march

March is always a special month to me. March is Brain Injury Awareness Month. This past December, I celebrated the ten year anniversary of my TBI. Why would I celebrate that type of event?! To me, it is like celebrating a birth date. Most people are only lucky enough to have one birthday, a brand new beginning. In my case, I had a second beginning at life. I know I'm taking an extremely terrible event and just molding it into something semi-positive, but that is how I have been able to cope with it.

I've gotten to the point, where the only times I mention my TBI, is if I'm having an off day, or have medical visits related to it. I feel that without experiencing a brain injury, I would not be able to cope so well with my Crohn's. I have been living with an un-curable, "silent" illness for so long before my Crohn's diagnosis that once it was added into the mix, nothing substantially changed. Maybe that is why I have so much acceptance to my diagnosis. I have learned that asking "Why me?" is not going to change the illness, or the diagnosis.

It is also difficult to be active in both causes. Working in public health, I have a passion for advocacy. Crohn's is supported by the wonderful Crohn's and Colitis Foundation of America. Traumatic Brain Injuries are supported by both the Brain Injury Alliance of NJ (where I reside) and the Brain Injury Association of America. I feel pulled to be apart of both, yet time-wise it has been difficult. I am going to try the best I can to advocate, to raise awareness, to fundraise, and to speak of both. I can't, and won't choose between the two illnesses, since they both play equally important roles in my life.

Round Two

Took the second part of my loading dose of Humira, this past weekend, a couple of days early. I was at my mom's for an overnight visit, and wanted to inject with someone at home, in case I screwed up. I know this means I also majorly screwed up my schedule, but also wanted to change my injection day. The first injection was done on a Wednesday. The next two days at work (Thurs. and Fri.) I felt like death, and so run down. This time, I injected on Saturday, and felt like death Sunday and Monday. I'm hoping to adjust to Fridays, so I have the weekend to recoup. It's a tough decision... Do I really want to waste my weekend feeling like crap, or do I want to barely be able to function two days at work?

So far in two and a half weeks, I've lost ten pounds. Humira has yet to catch up with this flare. As my lovely GI once stated, I rather you live consistently a little chubby, so that during flares, you don't get deathly ill. I've been thankfully? Holding onto an extra 20 pounds from prednisone/Entocort, so I have something to lose.

The irony of the disease is never lost on me. The disease eats away at your core, your body literally fighting to survive. Then the steroids, which help your body, go above and beyond their duty and produce side effects that are worse then disease. Damned if you do, damned if you don't.

Coworkers, friends and family constantly complimenting on how great you look, how much weight you lost, yet you barely have enough energy to stand up. "Wouldn't it be nice to lose weight that fast" or "I wish I had Crohn's to lose weight". WTF.

I will fight this. I will try harder, not to let this disease consume me, neither my body nor brain.