Ladies and gentlemen, Jessie Spano.
So today’s the big day.
In just a few hours, I’ll be at the doctor’s office, getting what is either a drug that may heal me and give me the relief I’ve waited for for two years — or I won’t. Or I’ll get the placebo, which won’t heal me and won’t give me relief, and will keep me waiting for the relief I really really need.
The good news is that after my appointment was delayed for two weeks, those days actually went quicker than I expected. I can’t believe “the big day” is finally here. Between being busy at work and then having to travel to Minnesota for a photo shoot (how I survived the cab rides, the flights and the actual day-long shoot, I am not so sure), I managed to stay mostly occupied and now it’s February 10.
And now that it’s February 10, I wish I could say I’m filled with optimism and positivity and I’m so sure I’m going to get the drug and in no time I’ll be feeling better and running and spinning and yoga-ing my little heart out.
The reality, though, is that I am terrified.
Like the kind of terrified that had me in hysterical tears alone in my apartment last night.
You picked a good time to be traveling for work, Brian. You wouldn’t have wanted to witness this. I was also watching “Glee” when the breakdown began, so you would have been extra thrilled with all of the emotions and the singing and the general excitement going down. P.S. I charged, um, I’m not sure how much money to your iTunes account while you were away. It was an emergency because I ran out of free “Scandal” episodes on Netflix. Love you!
So yeah, I am scared.
Because here’s the thing: Last spring, I had been pretty sick for a while and I was super frustrated, and my doctor at the time decided to start me on Humira. We had really high hopes for the Humira, and I was sure it was going to be my miracle drug. I put a lot of faith and energy into convincing myself that with those first four injections (ouch), I was going to feel better right away.
Well, it’s been a year, and we know the Humira never worked. And neither did the 6 MP. Or the prednisone. Or the budesonide. Or the lovely Canasa (meh, go ahead and Google that one if you’re so inclined). Or the methotrexate.
Now, as much as I want to be so optimistic and so hopeful that this clinical trial is going to be what finally gets me better, I also don’t want to set myself up for disappointment and disaster.
I cannot bring myself to think about being sick any longer.
I can’t think about watching another season change from my couch.
I can’t think about what the hell I’m supposed to do next if this doesn’t work.
I can’t think about keeping my entire life on hold while my health continues to deteriorate.
I can’t think about the toll this has all had on my relationships already, and I can’t think about putting my loved ones through this anymore. They go through this as much as I do, and that sucks and it’s unfair. Sorry, mom, dad and Brian. You’re the real troopers here.
So I will just think about getting better. Because that’s better than the other options.
I’ve mentioned before, I’m sure, that I tend to look at life cyclically. With each month, I find myself looking back at where I was during that month the previous year. Not to compare; I just always sort of instinctually (that’s not a word? really red squiggle line?) take note.
On February 10 last year, I was in Colorado skiing with Brian and two of our friends. That trip was my Christmas present from Brian and it was awesome…except for the fact that I was super sick and Crohnsing up a storm the whole time.
February 10, 2012, was mostly unmemorable. I was fine, I was running, I was happy I’m sure.
And that brings us to February 2011. It was very memorable. I was going through some major life changes — an unexpected breakup that led to a very unplanned apartment move, namely.
February 11, 2011, was in many ways the “first day of the rest of my life.” That was the day I had my “audition” for the Run for the Rabbit campaign and it was the day I met Brian. Aw. It was two days before that big breakup and it was the day my life made a big left-hand turn and everything changed, but kept moving forward.
So maybe today is the day I get to make another left-hand turn. Maybe today, February 10, is the day I’ll get the drugs that will make me feel better, and maybe on February 11, I’ll wake up feeling like a new, healthy, happy person, and I’ll keep moving forward.
My parents sent me a new outfit to wear to my appointment today. It’s my “Get Well ASAP” outfit and it’s a tracksuit and just putting it on makes me feel better instantly.
I’m not sure exactly what the appointment today entails. I know it’s called a “Randomization Appointment,” so it’s basically the day I become a number in the study and not a name (how sad!). I was told to plan to be there for at least six hours, which is how long the infusion will take (the medicine — or placebo, but hopefully not — is administered via IV).
I hope my next update is about how I am starting to feel better, and my fevers are gone, and my hair isn’t falling out, and the night sweats have stopped, and I’m visiting the bathroom far less frequently and I’m not in pain anymore.
If that’s not the case, I’m gonna need another tracksuit.
And some more money in my iTunes account.
See you on the other side!
No, that sounds scary, like I’m dying, which I’m not, even though it feels that way sometimes. I don’t plan to die at this appointment. Try again?
The sun’ll come out tomorrow! See you sometime after that!
49 Responses
How are you doing?! I have been thinking about you and hope that you are 1) enjoying your adorable track suit and 2) feeling better (or at least feeling like you might start feeling better)! Hugs from Oregon!
Good luck Ali, thinking of you. I saw your instagram picture – I feel bad you have to sit in one of those chairs. I used to have those as well but I switched hospitals and now I get a large bed with heated blankets and lots of other nice things. I’m sure you don’t care and you just want to get better. I’d like you to get better, too. But wouldn’t warm blankets be nice? (actually, you get hot so maybe not…)
And I agree with you, people who complain often never realize the full range of their audience. If they did, they’d probably keep their mouths shut. But snow is the best thing about being sick because you only have to look at it 😉
Good luck, feel better, enjoy the snow.
I love the track suit; it’s very on point with the Olympics right now so I think we should view it as a grand Olympic symbol that you’ll be running, spinning and snow chuting down the mountain in no time. Okay fine, maybe you don’t want to snow chute down a mountain at 100 miles per hour. The point is you’ll be able to. I’m rooting for you. All my fingers and toes are crossed. I won’t even mention how difficult it is to walk right now…except I sort of just did.
I often like to reflect on my life in that way too. What was I doing on this date last year? the year before? the year before that? Sometimes it’s depressing but sometimes it’s kind of awesome, depending on what I chose to focus on. I hope that this time of fear and certainty only lives on as a distant memory for you.
Just saw your tweet.
I love your puppy shirt and also, you have very nice handwriting.
I’ve never met you, but just wanted to say I’m wishing you the very very best of luck for this clinical trial. I hope you get the drug and it works well. You will run again!!! You are an amazingly strong person, with the most amazing support from family and friends. Best wishes Ali!
Good luck! Good luck, Ali! Fingers and toes crossed (heck, the dog even has her paws crossed, at least for a small moment). Big jolt of good Alaska energy your way so that you get the “real” stuff and you’ll feel better soon and get off the couch and out running soon. This WILL happen. Big, big hugs,
AAAaaahhh! So bummed for you about the snafu today 🙁 Hoping it all gets worked out SOON and that you get some feel-goods!
Feeling hopeful for you! And sending you positive non-placebo vibes of awesomeness.
Also, that tracksuit! Awesome.
Good luck with the drug trial. I hope you get the drug and I hope it works for you.
Feeling really hopeful for you!!!! Looking forward to your update 🙂
I really really hope you find relief and soon. It is so hard to go through any kind of sickness, and years of sickness are unimaginable for most people. Have you considered eliminating wheat? So many Crohn’s patients have found almost immediate relief…I’m sure you’ve looked into different aspects of your diet as being the culprit, considering the intimate associate of the gut with the food we ingest. I wish you a speedy solution and I send you much love!!
I eliminated wheat and dairy for a long time last year and it didn’t help. I actually do OK with it. Vegetables are a much bigger problem for me. All that fiber, ouchhh.
you made both Jessie Spano AND Annie references – obviously this indicates good things to come!! rooting for you!
Sending positive vibes your way, gf!
I hope this brings good things for you and the hope that you’ve been looking for!
Best of luck Ali!! Happy, positive thoughts coming your way:)
good luck! thinking of you. also, your parents are so cute. 🙂
Ah! This is it! Sending happy, Stelara-choosing thoughts your way!!
P.S. Nothing starts my Monday off right like a classic Saved By The Bell reference!
Good luck!! Sending happy and healing thoughts your way!
Keeping you in my thoughts today!
Your tracksuit is pretty fly!! You and Tyler are track suit twins now 🙂
Crossing my fingers and toes for you…hope you can return to Lyons Den ASAP!!! 🙂
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good luck Ali!!! As a mom, your parent’s gift made me tear up!
Oh Ali! I am SO SO SO excited for you and I will be praying that you get the right medicine because you deserve it! You are one lucky gal to have a great support system 🙂
<3 ya!
Good luck to you!!! I’ve been enjoying the VT snow from my couch or from my office, certainly not from running in it. Great track suit.
and i heart jesse spano too!
That is a really sweet gift from your parents. Thinking of you today.
GOOD LUCK!!! You’re definitely going to get the real drugs. I can feel it. 🙂
You are gonna get the good stff…the real drugs! I can feel it!
Good Luck Ali! I am thinking so many positive thoughts for your and they better not give you any placebo!!!!!!!
Just said a prayer for you. You have been through so much and paid your dues. I pray this is it for you!
sending you good vibes and the best of luck!
You got this! Sending a prayer over your way from one Crohnie to the next 😀
I’m rooting for you Ali! Good luck and sending good vibes!
Wishing you all the best today! I so love that your parents sent you a track suit. The most awesome!
Good luck today! I hope so much that this is what helps you. And your parents are adorable – love the tracksuit! Also, you are a crazy lady with your calendars. I love you for it.
Sending super positive randomization vibes your way!!!!
YAY excited for you, I feel hopeful!
Sending hopeful thoughts your way, the sun is shining so let’s hope this is the start of the road to recovery!!!
GOOD LUCK!!!!!! I can’t compare to what you are going through – I only had to struggle through four different types of Crohn’s drugs to find the one that worked for me, but when I did it was such a huge relief. I know it won’t work forever, but it’s working now, so that’s all that matters really, just taking things one day at a time. I know it’s a huge struggle right now, but you will get there, trust me (a random person you’ve never met in your life…but trust me anyway, haha!!) I had a year and a half out of running cos of my Crohn’s, but yesterday, thanks to my new drugs (which, granted, have taken freaking ages to kick in properly) I ran (jogged…slowly) 10km! So stick in there, today could be that big turning point you’ve been waiting for. 😀 x
Sending so much positive energy your way! Great things happen on Feb. 11 but I am biased because that is my birthday. Here is hoping that you get the drug and get healthy!
Thinking of you, crossing my fingers, and sending you puppy hugs!
My fingers and toes are crossed for you!!!
Crossing my fingers you get put in the experimental drug group! And who knows, maybe even the placebo can trick your body into straightening itself out?
Good luck today. I have my fingers crossed that you don’t get the sugar pills.
Is it wrong that I cracked up at the dance team pic? It’s like sweater, sweater, shirt, LOOK AT MY ABS, shirt. I guess that chick was having a hot flash? 🙂
Very dense post. Wish you all the best for the appointment. Hopefully next year, February 10th 2014 will be remembered as very, very, very good day. Hugs from Italy! (and I love the tracksuit!!)