Follow Me - AliOnTheRun1
- You need someone older and wiser, telling you what to dooooooo. #chivalry about 22 minutes ago
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- July 9, 2013 by AliEmbrace The Sweat (An "I Heart Sweat" Shirt Giveaway!)
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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.
The food’ll come out…tomorrow!!! Thank goodness. Yes, I made it to Day 10 of the juice cleanse. On that note alone, I think we can jump right into the recently-neglected Thankful Things Thursday. I’m thankful I get to chew food [...]
I hate juice. I hate fruit juice. I hate vegetable juice. I hate freshly-made juice and I hate Cooler Cleanse juice. So yeah, The Great Juice Cleanse of 2013 is going supremely well! Clearly. To refresh your potentially short-term memory: [...]
Hi. I’m alive. And I’m doing OK. The Remicade, as suspected, never worked. The hospital visit was worth it for the fluid IV alone — my fever has been down since Monday and I’m not as deathly exhausted as I [...]
Let’s get the cheesy stuff out of the way first… From the very bottom of my diseased little heart, thank you all so much for your kind comments, your sweet thoughts and your nice Tweets. Being ill sucks, but every [...]
Things are not so good around here. Things are, unfortunately, getting progressively worse around here. It’s been a really bad past week or so. I was optimistic before I left for L.A. Even though the trip was going to involve [...]
Well if that’s not the whiniest little post title of all time… One thing people tend to tell me when I’m Crohn’s flaring is that I “manage to stay so positive and optimistic.” Maybe online it seems that way. It’s [...]
Ohh I am not feeling thankful today. Sucks, right? Instead I am feeling pretty awful. Minus the “pretty” part. Physically I’m deteriorating. Mentally I’m not far behind. The other day, when I first started feeling really sick, I remember thinking [...]
The scene: A bustling Central Park on Saturday morning. The sun is shining and temperatures are hovering in the 40s. Runners are flooding the paths (and taking over the bike lanes — come on runners, wise up and move in [...]
Oh, Crohn’s. You just don’t want to let up, do you? Fortunately, I can put up a pretty strong fight. So I may be slightly sidelined from life today, but tomorrow’s a new one, and I’m here to make the [...]