After last weekend (as in June 8 — I know it’s been a while here, but you’re smart, you follow along), I was all set to jump in here and write that “I feel signs of improvement!” post we’ve all been waiting for.
Clearly that didn’t happen. Instead I just disappeared for a while.
But that weekend, something wonderful happened: After spending five straight days on the couch with a bum ankle, breathing the sweet, stale air conditioned air of my apartment, I finally went out.
I went for a walk.
And it was a huge deal. To me, at least.
The day — Saturday — was beautiful. I felt crappy all morning — nothing new there — but the intense pain and swelling in my right ankle had finally subsided enough that I could maneuver my way around our little one-bedroom with minimal tragedy. Around noon my coworker came to visit bearing gluten- and dairy-free treats from a nearby bakery. She’s the cutest ever and also she’s pregnant. And she had just gone for a walk around the Reservoir.
That was the little motivation I needed. I, too, could go for a little walk around the Reservoir.
So after she left, I put on my sneakers, popped a few Imodium and mentally psyched myself up to venture into the great outdoors.
What happened next was, at least at the time, life-changing. I walked to Central Park, staying on the busiest streets so my mind was occupied by people watching and I was at ease knowing I could run into any of the open restaurants or nail salons should I need an emergency bathroom stop.
I made it to the park stop-free, and as I rounded the corner and faced my long-lost love, Engineers’ Gate, I was admittedly overcome with emotions. I was so happy to have made it there and so eager to step foot into the park.
I knew there was someone who would be even more excited than I was, though: my mom. So I called her up as I began walking south on East Drive. She was positively giddy hearing that I’d left the apartment and was out for a walk, but as soon as I told her where I was, I started to cry.
As happy as I was to be out walking, I was also sad that I was surrounded by runners and cyclists who seemed so healthy, so at ease and so carefree. I don’t remember the last time I felt “carefree.”
I walked south for a little while before heading up to the Reservoir. I couldn’t believe how green the park was and how in bloom everything was. I walked a full loop of the Reservoir, and when I say “walked” I really mean strollllllled. There was no “power” to my walking. I truly am taking baby steps here.
At times I’d feel frustrated by how tired I felt. After I rounded the Reservoir, I took a seat with my old friend Bernie.
My legs were already sore, my shins a bit achy. I needed to sit and regroup, and while I did I reminded myself that being out was a great thing, even if just walking was ridiculously difficult and energy-sapping. I have to start somewhere, and that somewhere is not going to be with a six-mile run.
I people-watched for a while and then headed back to the apartment where I immediately threw myself onto the floor in a fit of happy exhaustion.
I had done it!
I had left the apartment. I had gone to Central Park. And I hadn’t needed any of the public restrooms along the way.
For the first time in my life, I had a major walker’s high.
So the next day, despite feeling like I had just run a marathon, I wanted to go for a walk again. The fresh air had done wonders for my mental state and I needed more. So that’s what I did, and it was successful again. I didn’t walk around the Reservoir because my legs, especially my shins and hamstrings, were so sore, but it was nice to be out again. The weekend was a success.
In spite of months of letdowns and discouragements, I went to bed Sunday night thinking maybe this was the start of my upswing.
Silly Ali. Naive Ali. Dumb Ali.
I didn’t leave the couch that next Monday, in part because it was pouring all day but also because I felt sick as ever. That walker’s high didn’t last long, unfortunately.
Since then, things have failed to improve at all. People have asked, “Have you noticed any change?” and the answer is a sad, simple “no.” Here’s a little look at how the past few days have been:
Tuesday, June 11: I email my doctor’s P.A. because I need a refill of my 6MP. We’re doubling the dose to 100 mg/day so I need a lot more pills. Two minutes after hitting send, my phone rings. It’s Dr. Kate The P.A. They got my bloodwork results back from the week before and they were “really concerning,” she said. That’s awesome. “I can see why you say you’re feeling so awful!” she told me. (In case my hysterical tears in the office didn’t make it clear, the numbers attached to my blood speak volumes. Oh, doctors.) She asked if I could come in “as soon as possible” to get an IV of iron and another of Albumin (protein).
Evidently, my iron had reached a “dangerously low” level — a beautifully-anemic 8. When your iron dips below a 10, you’re in rough shape (this would explain why walking up that hill made me pant and cry just a few days before). When you get to a 7, Kate told me, that’s when we have to do a blood transfusion. So that’s something to look forward to. My Albumin levels were a 2.3, and apparently you should never be lower than a 3. Damnit. My levels suuuuck.
I took a shower, actually put on a bra (OK, a sports bra) and was off to the doctor’s office where they “loaded me up” with a scarily-dark iron IV (you can taste it in your mouth as it goes in — it tastes like metallic burnt caramel, which isn’t yummy at all) and the Albumin. The process was quick and easy and I did not feel any improvement in the days following. Nice try, Dr. Kate.
Tuesday night, I got a special visit from the Dance Spirit staff. Remember when I used to work there and have a job and a paycheck? Those were the days…
The girls came bearing gifts!
But my favorite part of the delivery was a card that the entire company had signed. It was very sweet, even if most of the messages happened to mention the fact that the office is “quieter” without my presence. There’s love in that sentiment, I know it.
Wednesday, June 12: Another day on the couch. But the highlight came at night, when the best thing ever happened. You know how I haven’t been able to work out or do any physical activity (besides my two big walks) since February? Well, my favorite SoulCycle instructor, Bethany (take her classes now, because once I’m back I’m booking all the bikes), happened to noticed my sweaty absence. And since I couldn’t go to Soul, she decided to “bring SoulCycle to me.”
She came to my apartment that night with my Twitter-turned-real-life friend GB and my good friend Sara and they ambushed me with presents and surprises. Bethany made a playlist for me and set up my apartment with a SoulCycle candle, speakers and a sweet new outfit. It was the nicest, coolest thing ever and again I felt very loved (and a bit embarrassed, since I was back and forth to the bathroom the entire time they were over).
Thursday, June 13: Still sick. Still on the couch. No adventures. When I wake up, I notice my left ankle is swollen and very painful. Oh yay! The other ankle this time! It feels exactly the way my right ankle felt the day before I became immobile. I am pissed.
Friday, June 14: My left ankle is, as predicted, a mess. I can barely walk on it. I email Dr. Kate The P.A. asking what I should do. She says she can put me on a high dose of prednisone (steroids) and I’m not at all interested in this. More drugs. I’m already on so many drugs. Do not want.
So that brings us to the weekend: A weekend I was able to spend outside NYC.
My friend from back home — we’ve known each other since second grade — was getting married up in Stowe, VT. All week I had debated whether or not going was a good idea. I knew I’d probably feel like crap all weekend, but wouldn’t I also feel like crap here in NYC?
Brian and I rented a car and made the very loooong drive up to Stowe on Friday.
I survived the car ride without needing emergency pit stops, which was miraculous, and the entire weekend was mostly stomach-drama-free. I didn’t feel great, but I survived, and that’s pretty much the best I can do at this point.
Also miraculous: My left ankle healed itself. I never took the prednisone and eventually it just stopped hurting.
The wedding was beautiful, but the reception was hard. I was back and forth to the bathroom the entire time. I missed half of the bride and groom’s first dance, I didn’t get to take advantage of the open bar and I didn’t dance to even one song. I was tired, I was in pain and while I was so happy to see all the girls I grew up with, I was pissed I couldn’t be a better wedding guest.
Brian and I drove back to the city on Sunday and now here I am, in the apartment, desperately wanting to leave but feeling chained to the bathroom. Last night I was up every half hour. I wish that were an exaggeration. It was not a good night.
I’ve also got a few fun side effects currently plaguing my body, and while I consider us all to be best friends, these are things even I’m not willing to share with the entire internet.
I’m heading to the doctor this afternoon for another round of IV infusions.
I don’t know what happens next. I don’t know how long I keep doing the Humira + 6MP and hoping it will work. I know the 6MP takes a long time to become effective, but I’m running low on patience here.
Rachel Green said it best: “The nights are the hardest. But then the day comes…and that’s every bit as hard as the night. And then the night comes again.”
So this wasn’t quite the happy “I’m back in the land of the living” post I had hoped and planned for. Sorry.
Maybe next time.
48 Responses
I just wanted to say hi, new here obviously.. look forward to contributing to the community
Living with chronic illness/chronic pain is the pits. Not a whole lot else to say 🙁 I wish it were different. I just try to make it through the worst and cherish the not-worst. (((hugs))) and understanding.
Ali, I just found your blog through a different one, though I can’t recall which right now.. I was reading through some of your old posts and loved it. It is so sad to see you suffering; just know that I am praying for you and hope you improve even the slightest. I believe you will find something that helps and that you will improve. I hope you can see that, too. Hope to see a new (good) post soon!
Ali, I just found your blog through a different one, though I can’t recall which right now.. I was reading through some of your old posts and loved it. It is so sad to see you suffering; just know that I am praying for you and hope you improve even the slightest. I believe you will find something that helps and that you will improve. I hope you can see that, too. Hope to see a new (good) post soon!
Wow, that was incredibly nice of Bethany and GB. It’s amazing how far the Soul Community can extend sometimes. I follow your blog religiously, always hoping and praying there will come a day when you will write the uphill entry. Stay strong <3
If it makes you feel any better at all, I recently tore my ACL and meniscus and was SUPER depressed about it at first. I was so mad/upset that while driving, I yelled at someone running. I think it was along the lines of “Must be nice, being able to run and all! You enjoy that run…” So I think crying is way better than yelling at someone. And a whole lot less mean.
Hi Ali,
I’ve been a reader for awhile but I don’t comment often. I love your blog and used to see you every so often running in the park. I always wanted to say hi but I thought it would be weird to be all like “hey! you! i read your blog!”. I once even saw Brian in an I <3 Sweat shirt but didn't say hi to him either because that would be creepy 🙂
Anyway, I have been following your most recent flare and I am so, so sorry that you are still feeling so sick. Even though I don't know you, I think of you often and look forward to the happy post. I hope it will come soon. Like other commenters said, you did have some bright moments this week. Maybe (hopefully!) there will be more next week.
In the meantime, I'll be running my reservoir laps for you. Good luck and take care!! We are all rooting for you!
CONGRATS on the walks and going to the wedding! Those are huge accomplishments and I’m seriously impressed. Sorry nothings working yet, waiting for everything to kick in is the worst. I never had to get iron, they went straight to the blood transfusion, but it sounds like no fun. Hopefully it will help you get some strength back though! Sending lots of positive healing thoughts your way!
This sounds like my original UC flare up, bed-ridden in the fetal position (when not in the bathroom), with every jolt to my body causing my colon to go into a spasm. I literally didn’t step outside for weeks, and i remember it being so weird to be outside again and feel fresh air and sunlight on my face.
I, fortunately, have never had a flare up anywhere near as bad as that first one. It was absolutely miserable, and I can’t imaging going through that again or going through what you are right now.
It’s certainly no cure for CD, but have you ever considered surgery?
I just stumbled across your blog today. Thank you for sharing your journey. I’m looking forward to seeing more “good day” posts soon.
My Crohn’s is starting to flare up, and I’m sitting here having a pity party for myself with my laptop in between naps and thought I’d check on you. I’m so bummed for what you’ve been going through, but I am also so inspired by how you are hanging in there and trying to see the positive. I really hope Humira works soon – like today! Or better yet – yesterday! Hang in there, Ali. Thinking of you and wishing you the best.
Stay strong, kid.
These posts make me want to cry Ali. One because I hate to see anyone suffer and two because i love that you have such wonderful support. i wish i had something better for you. it totally sucks. being sick sucks hardcore. i will happily blog more baby and doggie pics for you…
I’m so sorry to hear you’re not feeling better yet. Hang in there – I will keep checking in and hoping for the best. Sounds like you have the most amazing love and support, and I’m sure that will be a huge factor in getting you healthy 🙂
So glad to hear you were able to take a lil walk around your beloved park. I hope that is a sign of good things to come! 🙂
Thinking of you, Ali! I can’t begin to imagine the pain and frustration you’ve been feeling for months now. I’m so impressed you got yourself outdoors (and up to a wedding! SMILING!). I hope that “things are on the upswing” post can be written pronto. Sending tons of well wishes your way!
Just keep going out for walks whenever you can. Baby steps Ali. Happy to hear that you walked CP. I remembered my first “walk” around Lake Gardens after my stress fracture – 2.3km in 50 min! Oh but the fact I was actually walking outside erased all that. Let’s hope you can or be able to get out more.
I’m glad there have been a few bright spots lately even though you still feel like hell.
You (and the bride) looked beautiful at the wedding.
I have been thinking about you and was hoping your lack of writing was due to you our frolicking in the sunlight. I hope the frolicking comes soon.
Thinking of you Ali! Like so many others said, I’m happy you took a walk and had a weekend away. I know you’re still feeling awful though, and I hope you turn the corner soon. You have a lot of Internet pals sending you good vibes and looking forward to your updates. Take care xoxo
I am so sorry that you are still feeling so badly. I hope many more walks (and soon runs!) are in your future 🙂
All I can offer is to keep a vigil for you through this. So, that’s what I’m doing.
I do like all the colorful pens in that note from work. I do not like hearing that things are still rough for you. I do like hearing that you are getting out some. I don’t like hearing you can’t do it more often. I do appreciate the updates you do even though you feel so awful. I have no words of wisdom. Just know people care.
I’m so glad you got out. So NOT glad that things still suck. Thinking of you and though the news hasn’t been great lately, I still look forward to reading your blog.
And. . .that dress is gorgeous, as a previous commenter said.
GIving iron to people always creeps me out because of it’s color. Which is only a little weird since I give people yellow colored stuff too.
Anyway. We always get super excited at work when we see someone who has been super sick for months get out of bed and take their first steps. And even more excited when they walk down the hallway. I feel like that’s your walk in Central Park was…even though you’re not really better, it’s something! And every little something is exciting.
I really hope something works out for you! Let me know if you need to discuss bodily functions or if you need a nurse!
baby steps! your blog is my favorite and i’m glad to hear that you got to go for a walk. and your dress for the wedding was gorgeous. sending you lots of good vibes!
i think you’re a pretty great wedding date. well at least a hot one. i’d take you to a wedding anytime.
You can always send me any not-suitable-for-public-consumption emails about your symptoms and side effects. Also, so nice of Bethany to bring you all that! I have a great playlist I can send you too – email me your address! We have leftover wedding CDs and the songs are fantastic if I do say so myself!
Oh ali, this post made me so HAPPY about the walking and what it did for your mental state, but as I read, I got so much sadder as I read about how badly things are still going for you and how much you are physically struggling. I am sending you all the strength I possibly can and pray that these doctors truly find a way to fix this. you don’t deserve it. you did look beautiful at the wedding though, love your dress. XO
While I do wish you were able to write a happy-improvements post, there was a lot more happiness in this post than I think you intended. I’m so glad you’ve been able to see people and at the very least get off your couch! Rooting for you everyday.
Ali, it may not seem it, but there is some hope here and I hope you see it too. So happy you were able to get a couple of walks in and attended the wedding. I always viewed my UC as 2 steps forward, 1 step back… although it usually felt like 2 steps backwards, 1 step forward… but none the less, I got to the finish. Good luck Ali. Thinking of you!
I have been reading your blog for awhile and keep logging back in, hoping to see you feeling better. I’m so sorry you are still battling this and struggling so much. Just know that, even though you are not running right now, your running continues to be an inspiration to so many of us!! I’ll never run half as fast or far as you, but your running has always inspired me to keep at it!
I don’t know you, Ali… just another reader from the blogosphere… but wanted to say that I’m thinking of you in that non-stalker-ish way and sending prayers and wishes for your patience, peace, energy & wellness as you go through all this.
K:)
I’m so sorry you’re not better yet Ali. But you look beautiful and your dress is fabulous. Praying for recovery for you. Your blog is as much of an inspiration as ever—maybe even more so—just wanted you to know that. Keep it up with the small walks and outings. Know your readers are all pulling for you!
Small victories Ali. The walk, the walk again, and the wedding. They may have been hard, and not what you want, but they are victories.
Sending you lots of love from way down in Texas. I know this sucks so bad, and I have no clue what type of pain you are in, but keep fighting. You WILL get better, I am sure of it.
I’m glad to hear you got out and went to Vermont to the wedding. I can only imagine that being out of your apartment and in the country air did you some good, even if it wasn’t the ideal weekend you had in your head.
You Got Out! You
Walked Around! baby steps….baby steps. Here’s hoping for more improvement
Ali, Please hang in there. There are alot of people out here in internet-land rooting for you……
I’m so glad you got out for a walk and to your friend’s wedding. I’m also glad you have some amazing friends to support you during all this. I’m holding out hope that you’ll be getting all better soon and posting about your amazing run around the reservoir.
The fact that you went for TWO walks and managed to go to a wedding is amazing. I have a feeling that happy post is coming. Until then, I’ll still be sending you good vibes.
i love that grapefruit candle. also, in case you don’t know – old greys anatomy episodes are on Lifetime from 2-4pm.
Praying for relief! Here’s to hoping things look up very, very soon. Hoping you experience more and more better days.
I’m so happy that you got to take a walk! I’m sorry things aren’t getting back to normal as quickly as you thought they would, but hopefully you’ll feel better soon. And even before you’re back to 100%, I foresee many more walks in your future. 🙂
I’m happy for you — getting out and strolling through Central Park. I wish I could suggest other things to make you feel better, but I’m not sure what those things are. I hope the meds work!! Sending you good vibes. My thoughts are with you.
Oh Ali. There are glimmers of hope here…your walk and the wedding (even sick, you look beautiful, what a great dress). The happy post is coming!
BTW…I was wearing my I heart Sweat tshirt yesterday (to get ice-cream, being honest) and someone stopped me to ask if I knew someone called Sweat or if I just liked working out. Couldn’t stop laughing.
still sending good thoughts your way ali.
I think about you a lot when I’m struggling with runs. Kind of a “what would ali do?” Ali would keep running if she was in my body (this is getting a little weird), because my body lets me run.
and when that ‘happy back in the land of the living post comes’ its going to be a BFD party. 🙂
Please send any and all “most personal” emails as I think of you every day and hope you are better!
I’m exclusively taking Bethany now. I like her before. LOVED her now.
And, do tell, how is the grapefruit candle?
Anyways, sincerely hope you feel better ASAP and I’d like to sometime accompany you on two laps of the reservoir and you’re going to get a medal at the end (whether you like it or not) because you’re a champ.