It felt strange not to acknowledge what happened on the day of the Boston Marathon here. I kept feeling like, “I blog about running…I should have an opinion. I should have feelings. And I should share them…right?”
But every time I tried to find the words, I was at a loss.
I didn’t have anything to say or add to the discussion, so I didn’t want to force it. I just wanted to be quiet and take it all in.
I didn’t have personal accounts about my Boston Marathon memories. I’ve never been to the race — either to run it (ha) or to spectate — and I don’t have a memory-filled picture of myself posing by the finish line. Although I have friends and family in the area, they were all immediately reachable and perfectly safe following the bombings.
My loved ones were so lucky, and for that, I am so lucky.
And on Friday night, I, along with the rest of the world, cheered as the courageously heroic — and seemingly fearless — members of the Boston Police Department, SWAT teams, FBI and more embarked on a successful manhunt.
I can’t believe we live in a world where “manhunts” are something we watch on TV…as in the news.
That was my big takeaway all last week: “I can’t believe it.” I think that’s why I had such a hard time writing and putting my thoughts together. I was in disbelief and I kept — and keep — asking, “Why?” I just don’t understand.
During a week of so much trauma around the world, I was also facing a battle at home. A battle I continue to fight after four long months.
I am getting sicker by the day.
When we last talked, I was about to wrap up my 10-day juice regimen and I was so excited at the prospect of sprouted wheat toast and some hummus. That first bite was as amazing as I had imagined.
But as soon as I started eating again, the fevers came back. The chills, the night sweats, the countless pajama changes, the 2 AM showers…none of it has ceased.
I saw my doctor last Wednesday, and I sat in his office sobbing, begging him to do something. He didn’t want to start me on new medicine without doing more tests — of course — so I spent Friday fasting and then prepping for a colonoscopy. Funnest ever!
On Saturday morning, I made my way to Mount Sinai for a colonoscopy and upper endoscopy. Everything went fine, and it was actually nice to get knocked out for a bit and get a little nap. I haven’t slept for more than an hour at a time in at least a week, so I appreciated the drug-induced rest.
The tests revealed that, as suspected, my disease has gotten much worse. I have an official diagnosis of Crohn’s-Colitis, as determined by where the disease is located in my body. Dr. Has Seen Too Much Of Me Now said things look worst in my sigmoid colon, where I have several ulcers and severe inflammation. The disease has also spread to the transverse colon.
So that explains the pain.
I can’t sleep at night in part because of the chills, sweats and 102-degree-plus fevers, but I also can’t get comfortable. I’m OK for a bit if I lay flat on my back, but if I so much as rotate an inch to the side, I’m into the fetal position in pain and running for the bathroom.
Needless to say I haven’t been handling this very well.
I’m not able to leave the apartment, let alone go to work, and I’m an emotional wreck. I have been sitting on my couch for a month now watching more crap TV than I ever hoped to see. Ryan Lochte has a reality show. So do the Jonas brothers. One of them at least.
I miss my friends. I miss my life. I feel like the rest of the world has kept turning and moving along just fine while I’m in this little prison, watching from the outside (or, you know, Twitter…).
I also feel like this is a constant waiting game. As it turns out, I’m not exactly a qualified “medical emergency,” so things are happening at a painfully slow pace. Even though Dr. Happy To Scope Me On A Saturday said my disease went “from a 4 last summer to an 8 now,” that doesn’t mean I can get a follow-up appointment any sooner.
So now I wait until he can see me in his office and we talk about treatment plans. My two options are Humira, which is an immunosuppresant that requires a mega-fun regular self-injection, or enrolling in a clinical trial and agreeing to be a guinea pig.
Neither option is particularly tempting.
Neither option provides the immediate relief I am so desperate for.
I’m in a bit of disbelief that this is still going on. I am now being incredibly diligent about my diet in hopes that that will help while I wait for medicinal relief. Beyond that, I’m at a loss, I’m in pain and, frankly, I’m in a bit of a dark place. I haven’t felt like myself for so long, and the only reason I know it’s springtime is from the pretty cherry blossom pictures people have posted on Facebook. I am missing out on life, and that makes me so sad.
The one upside (yes, I’m absolutely forcing myself to find an upside amidst all this) is that I have incredible friends and they have been there for me more than ever. So for that I’m deeply thankful, grateful and appreciative. I think I would have given up on me a long time ago, and I love my friends for sticking around and offering puppy visits.
I never thought this disease would really affect my life. I’ve never been sick like this or been in such constant pain, discomfort and emotional distress like this. I always thought, “I have Crohn’s, I get flare-ups sometimes, but it’s no big deal because I’m a really positive person and my excitement for life makes things better!”
Here’s hoping that girl comes back soon. I remember her being really super fun.