Short-Lived Happy Tears

Date: April 28, 2013 at 2:32 pm- by Ali- Comment(s): 73

Last week — like so many of the ones that came before it — was something of a disaster for me.

No seriously...this isn't worth watching.

No seriously…this isn’t worth watching.

But between the rage-filled phone calls with angry nurses, the sleepless nights and the increasingly-high fevers, there were a few moments of unbridled optimism.

They eventually went away and proved hopeless, but they were there, and I basked in them.

An example of something amazing that happened this week: I finally earned 1,000,000 coins in Bejeweled Blitz. BEAT THAT. No, please don't. Let me feel victorious.

An example of something amazing that happened this week: I finally earned 1,000,000 coins in Bejeweled Blitz. BEAT THAT. No, please don’t. Let me feel victorious.

After I got the results of last week’s colonoscopy and upper endoscopy, I told my doctor I no longer had any interest in joining a clinical trial. I was on board to begin the Humira injections and I was willing to start ASAP. (“Willing to start” translates exactly to “begging with every fiber of my decaying body to start.”)

So despite my decision being made, I couldn’t seem to get in with my doctor…until Thursday. Going “from a 4 to an 8” (like Ross on “Friends”) still doesn’t qualify you as an urgent case in this confusing medical world. I sent emails, I made phone calls and I remained as polite as possible, but I still couldn’t get in any sooner.

And I continued to get sicker, however possible.

Operation Beautiful.

Operation Beautiful.

I continued sweating through four outfits each night, I continued having fevers and the pain and discomfort in my stomach just wouldn’t let up. I was in the bathroom probably 30 times a day. I had also abandoned even going to sleep in the bed and instead went straight for the couch each night. You’re welcome, Brian.

Meanwhile, my will to “just keep fighting” was at an all-time low. I hadn’t been to work all week, my social life had completely dissipated and I dreaded being awake as much as I loathed trying to get through the nights.

Finally, on Tuesday, I got my doctor on the phone and said that if he couldn’t see me in his office, we needed to get everything done over the phone. He explained the multi-step Humira process to me:

  1. He had to write a letter to my insurance company asking them to approve the drug.
  2. When the insurance company felt like responding, it would.
  3. The nurse would get a call or a letter (who writes letters???) saying the Humira had been approved.
  4. The nurse would call in my “loading doses” for the initial injection of the drug directly to the Humira company.
  5. The drug would get shipped to my apartment.
  6. When I received the medicine, I would have to make an appointment to come into the doctor’s office to receive training on how to do the injection.

Speedy-sounding process, right? Oh yes, this perked me right up!

At many points last week, this just seemed like a taunting joke.

At many points last week, this just seemed like a taunting joke.

I dove back into meltdown and frustration mode, feeling so defeated because everything was taking so long. Each day has been a fight and a struggle, and each day that I had to continue waiting for something immediately became “the worst day of my life” (yes, I do hope I’ll look back on this someday and see it as dramatic, but for now it feels pretty darn accurate).

Fortunately, the process didn’t take quite as long as I had hoped, and I got a little visitor to keep me entertained in the meantime.

PUPPY!!!

PUPPY!!!

Being a therapy puppy is EXHAUSTING. Sincerest thanks to my most wonderful friend Sara for bringing this 11-week-old pooch all the way uptown to make me feel better.

Being a therapy puppy is EXHAUSTING. Sincerest thanks to my most wonderful friend Sara for bringing this 11-week-old pooch all the way uptown to make me feel better.

I received a call from the insurance company on Wednesday saying the drug had been approved, and then got a call Thursday around 3 PM that elicited my first happy tears in a long time: It was a nurse from Mount Sinai saying she had received my Humira.

I screeched into the phone, I was so excited. “Can I come get it now?!?!” I begged.

Apparently, no. I needed to come in for bloodwork first, to get tested for Tuberculosis and Hepatitis B.

Now, if the doctors and nurses knew I would need these tests, why hadn’t they asked me to come in for them earlier in the week so we’d be ready as soon as the Humira arrived?

Right. Because the medical world is smart and efficient and amazing and it makes total sense.

But the nurse insisted that if I came in right away, which I did, I could get the tests in the lab and they’d have my results by 6:30 Thursday night.

I did that, they took seven vials of my blood, and I was on my way home, finally feeling excited. I was going to get my Humira in a few hours! I was going to feel better within, as people insisted, a day or two! I was going to run on Saturday morning like everyone else! I was going to be able to leave the apartment without having a panic attack!

A puppy (his name is Bokchoy), some flowers and painkillers. Thanks, LBC, for providing two of these crucial things.

A puppy (his name is Bokchoy), some flowers and painkillers. Thanks, LBC, for providing two of these crucial things.

My change in mental state was astounding.

I tried telling myself not to get too excited, though. I let myself get excited about the antibiotics in February, and then the Remicade, neither of which had any positive effect on my disease. Then, in March, I got all hyper-positive about the steroids, which were a failure, and then I was even optimistic about going to the hospital for the double-dose of Remicade, which also failed me.

So I’ve had my letdowns, but I refused to believe this would lead to another one.

I practically pounced off the couch Friday morning. For the first time in…don’t worry about it…I showered and put makeup on. I called the doctor’s office right at 9 AM, expecting the nurse to tell me to come on down!

Instead, she said she still didn’t have my lab results.

The lab results that were “guaranteed” by 6:30 the night before.

She told me she’d call me when she got them.

By 12:30, I still hadn’t heard from her, so I called back.

She said she’d “check.”

At 2:30, I’d heard nothing from the nurse and I was losing my mind. I called her again. Maybe the lab lost all seven of my samples. Maybe there was a problem. I’d come back in if they needed me to!

The nurse said she still “hadn’t heard anything” and I finally blew up at her. I told her I felt like no one was fighting for me, and no one was telling me anything and I knew that as soon as it hit 4 PM, she’d be going home, with my drugs being held hostage, and I’d have to wait until Monday to finally get the injections. That was unacceptable.

Not as fun as glitter pens.

Not as fun as glitter pens.

She told me she “couldn’t talk to me while I was that upset.” That totally made me feel better. What a sweetheart.

So we hung up having resolved nothing, but an hour later she called and said I could come in.

It was finally time.

I was going to feel better.

Unsurprisingly, the nurse did not want to be my best friend when I arrived. I explained my frustration to her, but she gave me a lecture on how I ruined her day because all she does at her job is fight for me, but OK. Agree to disagree I guess. I don’t know what she does all day and I’m a bitch.

Then she explained Humira to me a bit more and we got started.

THINGS ARE GETTING SERIOUS.

THINGS ARE GETTING SERIOUS.

The initial dose — the “loading dose” — contains four shots.

I had watched a ton of YouTube videos of people giving themselves the injections to prepare myself. I’d heard that the shot itself doesn’t hurt (the needle is teeny tiny and it’s inside a pen, so you don’t even see it), but that the medicine burns as it goes into your body.

I’ll take a 10-second burn over everything else I’ve been dealing with. Bring it, Humira pen.

Pause: I should have named this post “Hit Me With Your Best Shot.” Hindsight…

The nurse did the first injection in my stomach with me standing up. She said some people prefer to be standing and it turns out, I am not one of those people. I immediately felt a bit sweaty and light headed. I asked for water, sat down for a bit and was ready to move on. She did the second injection with me comfortably seated.

Yes, the medicine burns. Yes, the shot is slightly uncomfortable. But it’s over fast, and I just kept telling myself, “This is how I’m going to feel better.”

I did the next two shots myself. The first one went well, and on the second one I managed to suck my skin up into the needle with a little suction action. My bad.

And then it was all done.

You can see the one on the far left where I screwed it up a little. The nurse assured me it was "fine." We were friends by this point.

You can see the one on the far left where I screwed it up a little. The nurse assured me it was “fine.” We were friends by this point. Sorry this picture is a little gross but I think it’s effective. And a man on the street outside the doctor’s office told me he loved my “stripey pants.”

The first time I got Remicade, I felt better within a few hours, so I expected this to be the same way.

But by the time I went “to bed” Friday night, I felt no improvement. As I tossed and turned and ran for the bathroom all night, I still didn’t feel any change.

And on Saturday morning, as I sat in my fourth pair of pajamas instead of my shorts and sports bra, I again basked in my disappointment that my “miracle drug” might take a little longer than I’d hoped.

I did make it out of the apartment on Saturday, which is a pretty big deal. Brian and I got brunch and then sat in Central Park for a long time. My happy tears at this point had turned back to sad tears as I watched people run and bike by from my perch on Bernie’s Bench at Engineers’ Gate.

I made it through a movie without any drama — Brian wanted to see Jurassic Park in 3D and since he’s been so painfully nice to me throughout this ordeal I agreed to go. Also, he kind of demanded that I go because I had never seen Jurassic Park and therefore I had “been denied a childhood.” Admittedly I thought the movie was pretty good, albeit terrifying. WTF, Velociraptors?

Now it’s Sunday. Everyone is running a marathon or a half marathon. And I’m still on this damn couch.

My family sent flowers from their vacation in Florida wishing me a happy first day of the rest of my healthy life. I'll just hang onto the card for when it's a little more accurate I suppose...

My family sent flowers from their vacation in Florida wishing me a happy first day of the rest of my healthy life. I’ll just hang onto the card for when it’s a little more accurate I suppose…

I know I should be optimistic now more than ever. I have four shots of immunosuppressing juice flowing through me, and it’s going to work at some point, right?

And I shouldn’t be worried about this, right?

LOL. Remember when I signed up for the Brooklyn Half thinking I'd actually be able to train for it and maybe PR? My optimism is adorable, right?

LOL. Remember when I signed up for the Brooklyn Half thinking I’d actually be able to train for it and maybe PR? My optimism is adorable, right?

Or this?

"You've been robbed of all your money."

“You’ve been robbed of all your money.”

I’ll probably run again. I just have to work on making my way around the block first…

IF YOU’RE A HUMIRA-USER AND WANT TO TELL ME ABOUT HOW WONDERFULLY FAST IT KICKED IN FOR YOU, I’D LOVE TO HEAR IT! If you are someone who tried Humira and it didn’t work, best to keep quiet for a little while.

73 Responses to "Short-Lived Happy Tears"

I had a patient that used it. It was little teeny-tiny boy who was so malnourished and on IV nutrition because everything he ate passed right through him. He started Humira and the results were amazing! Wishing you the same!!!

Hugs to you!!! Feel better!!!

I am not a Humira user … but I am sending all the happy, fast, miracle working thoughts to your new shiny pens.
That said, I have used those little pens before and the injections get a lot easier and less painful.
Oh yes and I may just talk down that nurse and give her a piece of my mind #unacceptable
GET WELL!

I’m crying right now because I hate what you are going through. I hate that health care PROFESSIONALS have failed you. As a pharmacist, I have several patients on Humira and they have told me repeatedly that it has changed their lives. Yes, there are hoops to jump through to get on it, but I’m praying that you will turn a corner soon. Hugs.

Oh gosh, I hope this is your miracle drug and you wake up tomorrow morning feeling GOOD!! I know your story about the nurse is completely one-sided, but she sounds like a total bitch. And you sound like a sick patient who just needs answers, so she can shove it. I cannot believe you have not seen Jurassic Park until now! It is really scary and I have no clue why my parents let me watch it when I was little.

I am really praying this is the answer for you. I want you to get better

happymom says: May 1, 2013 at 2:45 pm

I’m so excited to come into this blog. I am GRATEFUL for Diarsoothe. It’s new on the market. I’ve seen it at some healthfood stores in TX, and it’s on Amazon. It is so soothing, and really re-aligns the bacterias in the bowel. A friend who is a celiac loves it, says it’s calming to her stomach. So happy for relief.

I’m so sorry Ali. I really hope that you start feeling better soon from the Humira. I look forward to a post where your happy tears come back. It looks like the people above me suggest that it works wonders, and I hope it does for you too!

Ugh–I hate what an annoying slow process it is to get the drugs that you need. I used Humira and it was a wonder drug. I did the shots in my thighs instead of my stomach though (since I was having so much stomach pain I couldn’t bear the thought of injecting myself in the stomach). I think I began to feel better after the 2nd round of shots.

As a nurse, I apologize but please know the lab was probably the hold up. It sucks because most times we’re promised something, we then tell the patient and they (in this case the lab) don’t follow through on their promise. I’m glad you expressed your frustration as I’m betting you stayed on this nurses mind and she pushed to get those results! 🙂 Hoping that Humira kicks in really fast!!!

Haha you don’t have to apologize on behalf of nurses everywhere. The lab WAS the hold-up, I was just frustrated getting misinformation and then NO information. She kept saying she was going to go check with the lab, but every time I called back she said she hadn’t done it yet. They actually never got the results of my TB test but went ahead with the Humira anyway. Soooo hopefully I’m all good…

If your coughs stain your handkerchief with spots of blood, like Nicole Kidman’s did in Moulin Rouge, stop taking the Humira, you have TB. 🙂

Just bums me out!! Nurses are supposed to be patient advocates not patient irritants!! 🙂 And yes, I’m sure your TB is fine!!

i have never even heard of humira until now, but i hope it makes you feel 1000% better!

New to your blog & looking forward to following along. Wanted to comment to say feel better and get well soon. Happy for you that you’re getting the medication you need.

All the best,
Eileen

Hi, Ali! Humira user here. I wouldn’t call it a “miracle drug” but it’s the best darned medicine I have ever had for my Crohn’s. It really has helped me greatly. I don’t necessarily remember how quickly it worked (I’ve been on it for 5 years). I hope it starts working very quickly for you. I can tell when I’m at the end of my 2 weeks and ready for another dose. Just an FYI- if you ever get to where you just can’t stand those pens anymore, I’ve found that the syringes hurt less and I tend to screw it up less. I hate watching my precious medicine dribble down my stomach b/c I didn’t do it right! Best of luck to you!!

I agree I had the syringe when I did cimzia and I had the pen for humira and I liked the syringe better and your right the med leaking down your stomach is sad. I like humira better then Remi a quick shot and your done rather then sitting for a 4 hour infusion. Unfortunately for me I am one of the rare ones who got a lupus reaction to all those meds, I even tried tysabri the scarest one of them all but got hives twice and if you get any reaction then your done. I wanna say the humira took a month for me some people 2 weeks some it takes 2 months everyone’s different of course it’s never easy with crohn’s. it worked good till I got lupus which we knew I had a 50% chance of since Remi gave it to me. I hope it works for you, I get to do the fun clinicals and I’m in mass so hopefully medical pot soon as they get it set up. My doctors on board as they proved it does keep us from running to the bathroom as well as with the nausea.

Elizabeth says: April 28, 2013 at 6:15 pm

Just wanted you to know a stranger from Texas is thinking about you and hoping that you feel normal again soon.

I have Celiac disease and while I’ve been diagnosed and GF for over 7 years, I still get sick occasionally, usually at the worst possible time, and the bad periods last a long time. I just wanted you to know that you are not alone and that you will get though this. Keep your head up and know that there is something out there that WILL help.

Best wishes from Dallas.

I started using Humira after Remicade stopped working and after I didn’t do well on a medicine called Cimzia. It took a while for the Humira to start working for me (at least a month), but I’ve been on it for almost two years now and I’m still doing really well with it. I even started running a few months ago 🙂 Hopefully Humira will work for you too and quickly! Also, not sure if your nurse told you this, but icing the injection site before you give yourself the shot (15-20 minutes for me) helps with the burning from the medicine. Ask your nurse/doctor before you do it, but it definitely helps for me!

I know it’s hard to stay positive at a time like this so I’m sending all the positive vibes I can your way!

Thinking about you and hoping you get back to your normal self as soon as possible!

Hope the miracle is happening and you are feeling much better.

I hope these injections work for you! I probably would not have been so nice to that nurse either. She should’ve never guaranteed anything, especially since they probably know the reliability of the lab they use. I just started reading your blog as I was looking for new fitness blogs to read and my sister just found out she may have Crohn’s. She’s also had many problems with doctor and health professionals so far. She had a colonoscopy done and that day the doctor said he was pretty certain it was Crohn’s. he said he wanted to look everything over before making an official diagnosis. His office called her back a week later saying they needed more tests for her Colitis, but when she asked which she actually had the woman couldn’t answer.
Anyways, I hope you start to feel better soon!

I don’t know anything about Humira, but I do know about doctors, nurses and waiting for results. Also I have to give myself a shot daily in the stomach of blood thinner, sometimes I leave huge bruises, sometimes it really hurts and sometimes I don’t feel it.
Good luck! You’ll be back running soon. I had to stop for 3 months because of fluid in my lungs this winter and I’m still so slow and get winded easily…

Samantha says: April 28, 2013 at 9:09 pm

I’ve been using Humira since January and it helps me so much. I had a lot of nausea and it was gone on the second or third day. Felt tons better after 2 weeks, but also very tired. I now take it once a week because it was starting to wear off, but I feel like I have my life back. I hope you find relief soon!

I go to my student health services center and it’s so frustrating how little they seem to care or listen to me. I can only imagine how frustrating that kind of activity would be if you were dealing with a serious illness. Hang in there, Ali! I hope the humira works!!

Rooting for you Ali!!!

AWWWWW Sh*t. I’m so sorry things are not progressing in a manner better suited to your awesomeness. Good luck. Y’know that little squeazable (apparently that is not a word) stress monster with the bulge-out eyes? Use it. If not to relieve stress, but just shove it in the face of the next person who treats you like a stat or a symptom instead of a person. It will not make you feel better, but it should weird the person out and we all know if you act crazy, the muggers will leave you alone. Or something.

Ali, I have been following your blog for a while now and keep checking in on you throughout this process as well as being inspired by you as a runner. I am so sorry to hear how terrible you’re feeling…its awful, but not a time you won’t bounce back from! My boyfriend just got two (yes, two) Jack Russell puppies and I would love to send you some photos to cheer you up!! Let me know the best place to send them 🙂

Christ…I will admit that I’d taken a few months off of blog reading, and I am truly sad to see that you are still going through this, and even worse. Hang in there…I have no advice but I am rooting for you!

Oh Ali, this is horrible. I’m glad you have the drug at last and soon you’ll be able to see if it works for you. Which it has to! This time next week, you’ll be on the up! Hang in there. You could get some tshirts made up…’I heart Humira’!

Oh Ali! I am so sorry you are going through all this. Our situation sounds so similar. The night sweats, frustration, and the desire to be “normal” and to run of course.

I AM on humira and have been for a couple of years now. The Remicade worked in helping with the UC but it caused too many other symptoms (migraines, ER visits, etc). So I was already feeling “okay” before starting it. I take 125mg of immuran though too and I convinced my doctor that I didn’t need the immuran and so he “let me try my experiment” and within 6 weeks I was on the verge of a hospital stay. So I wouldn’t say the humira is the only thing keeping me “in a better place” I have to take the other meds too. And I have to have Mark give me the injections, those things HURT!!!!!
Please let me know if you have any questions or if I can help in any way!

xoxo

Be patient Ali; it’ll work out

Mallory says: May 7, 2013 at 8:07 pm

Wow, really? Have you been following her blog at all? What an ignorant and highly insensitive comment.

Good luck with your new course of treatment, Ali. Maybe I’ll see you at the finish for the Brooklyn Half.

Fingers crossed that you and Humira are busy throat punching Crohn’s right now….
Hope you feel better 🙂

Aw I hope you feel better soon, that all sounds terrible =/ I’d be just as frustrated as you and would have had the same reaction as the nurse.
I’m also running the brooklyn half! Maybe I will see you there!

I’m so sorry you are having such a difficult time.

Former RN here though. Former because it got to be too exhausting taking the brunt of patient’s frustrations when 99% of the time nurses don’t have the power or authority to do anything about it. I worked in several hospitals in Manhattan and they were all fantastically understaffed. She was probably running her ass off all day and hadn’t eaten anything since she left the house and was working on getting you your results back, but frankly her calling the lab probably wouldn’t have made much of a difference anyway. But because nurses are on the front line, they take the brunt of patient’s frustrations and aggressions. It’s very difficult.

Just had to throw out the point of view that the person taking your rage has very little control. But again, I am very very sorry that you are feeling so terrible and going through such a difficult time.

My brother has Crohn’s and about a year and a half ago, he flared up worse than he ever had before. Seriously bad stuff. He’d been on remicade for a few years before that point. He started humira at that time. It took a little while to kick in (definitely within a month), but it did. And he feels so so good now. Don’t lose hope.

Oh, Ali. I don’t think I have any word that I can even pretend to think of that might make you feel any better. This sucks. Really does suck.

The only thing I can say is what I’ve said in the past, “It’s not what happens to you, but how you handle it.” Keep your head up.

Sending <3

Praying this works for you, Ali! You handled your first injections better than I did. I had to take a break between each one and was crying the whole time. Now, though, it’s like “whatever, Humira” and is no big deal. Not sure if your nurse mentioned this, but I have found that it burns less if I leave the pen out for an hour or so and let it get to room temperature before injecting.

My heart breaks for you every time I read about your struggles with this and I keep hoping for you that these drugs work! Fingers crossed from Florida that you get some relief (and a good run) soon!

Hang in there ali- you are in like mile 20 of your medical marathon. You know how to do this. Actually, it’s kind of too bad you’re such a great runner, maybe you haven’t wanted to die while racing quite as much as I have…but still, I’m sure all runners have been in their own pain cave, right? I think about what running has taught me whenever I go thru some grueling, unfair, unending life thing, and it helps me remember: all I have to do is survive. Keep going. Left, right, no matter how slow, how miserable, how convinced I am I’m going to die nonstop forever…if I just keep going, things will change because that’s what things do. you are getting somewhere, even if you’re totally miserable. You’re still moving forward! Just keep going 😉

Hoping this works for you, hang in there!

Lauren W. says: April 29, 2013 at 12:20 pm

Hoping you’ve turned a corner and are feeling better, Ali!!! I’m sending all my positive thoughts your way for your healthy return to running and life.

p.s. I’m in the NYC Marathon too!! Heart skipped a beat when I saw that “Accepted”…and again when I saw my bank statement. Ouch.

Wishing you all the best with Humira!! It probably would’ve worked for me if I had taken it correctly. I suddenly became a rule-breaking, 13 year-old in a 24 year-old body and thought that I knew everything and that my disease was non-existent and required no medication and that I could frolic forever, Crohn’s-free. Yeah, that didn’t happen. But I don’t blame Humira at all – I blame the suddenly defiant patient in me… oops. It’ll work for you, I’m sending all kinds of optimism and positive vibes your way! I’ve heard great things from so many Crohn’s patients about it 🙂 Also, sounds like that nurse is in the wrong profession… telling a patient she ruined her day?! WTF?! I feel like I got the online equivalent of road rage reading that. Hope everything starts looking up very soon, Ali!! 🙂

The online equivalent of road rage – very VERY apt description for how I felt as well.

Hi Ali,
I am a nurse and work with people who have Multiple Sclerosis. I just wanted to let you know I was appalled to read about the nurse who gave you a lecture about how you “ruined her day.” That is horrible! Many of my MS patients are in similar positions to you..waiting on lab results, waiting on insurance, and waiting to learn how to use their meds. As tough as it is sometimes, as a nurse, I remind myself constantly that my worst day is probably nothing compared to my patients, who are dealing with a chronic illness. I’m so sorry you’re not feeling supported! Please know that there are certainly nurses and other healthcare providers who care!
On that note, I hope you start feeling better soon! I hate being sick/injured in any form, so I really can only imagine the position you’re in. Keep your head up and stay strong. I await the entry where you start off with “TODAY I WENT RUNNING,”! I hope it’s in all caps too 🙂

Sending hugs and good wishes to you! Hope you feel better soon!

– Heather

sarcasmandstilettos.com

Hi Ali…I hope this new medicine brings you new hope and you can carry on with your life…And if you want to come and spend a little rest time here in Costa Rica, you´re more than welcome!

Grrrrrrrrrrrrrrr.

I am so sorry you had to go through the wringer. I have been on Humira for 4 years now. Was on Remicade for 6 before that. I wasn’t in as bad a spot as you are now when I switched though. I will say that i find Humira gives me a more even quality of life. Both were a huge improvement over where I was! I’d say full effect for Humira was about a month for me though I was improving the whole time. I do one pen every two weeks after the loading dose.

Bests!

hoping that we all read another post from you really soon that you’re feeling at least a little better! when I started Humira I think (if I remember correctly) that it wasn’t an “instant” fix – but very quickly I could at least keep food down. as someone else also posted, after the 2nd set of shots (2 for the 2nd loading dose) I also was feeling much better. it wasn’t an overnight thing – but a slow, steady progression. 🙂 be sure to let the pens warm up for about 20-30 minutes before injection & it helps the stinging (most of the time). here’s hoping that each day is a little bit better than the last! 🙂

I also love your “stripey pants”! I’m a long time reader and I’m sending lots of hugs and well wishes your way! 🙂

Terri R. says: April 29, 2013 at 3:22 pm

Hi Ali! I’ve been following your blog for the past few months and I think you’re awesome and an inspiration. I’m so sorry to hear about what’s been going on lately and sincerely hope you start feeling better soon. I’m a Nurse Practitioner and I’ve had patients do great on Humira. Also, I feel the need to apologize for that nurse. She has NO excuse to be rude to you or say you ruined her day. Yes, the delay with the labs was the lab’s fault, but she should have done a better job at following up with you or put more pressure on the lab to hurry up. As other commenters have said, I look forward to reading a happy “I just ran!” blog post. Hugs and well wishes!

What kind of painkillers are those? They look different than what I take for my Crohn’s.

Do you mean the pens? It is not a pain killer – its a biologic immune suppressor meant to control flares before they happen.

No, Ali said she had Bok Choy, Flowers, and pain killers in one picture. I know what Humira is.

Gotcha!

Seriously hoping that you are feeling some relief by tonight!!!! Fingers crossed, Ali!

I know nothing about Humira, but I’m hoping it works for you and you’re back running in no time. I can only imagine how horrible this must be, but keep trying to smile through it all, even if it sans shower and make up free.

FINGERS, TOES, SHOELACES, and EYES crossed!

Carrie M says: April 30, 2013 at 4:26 pm

Hoping there’s an update soon telling us how much better you feel!

nicole s says: May 1, 2013 at 1:22 am

I was on Humira for a long time. It started working a little bit immediately, although it took 2 weeks for me to get all the way better. Hope it works well for you!

Thinking of you, Ali! Hope the Humira kicks in soon and you start to feel better. Sending love and healing your way!

I’m so sorry to hear about all of this Ali! Thinking of you and hoping for the best. Hang in there.

I’m so sorry to hear about your health! It can be just so frustrating, I totally understand your frustration. I have been on Humira myself, and find that putting them in the upper thighs while sitting down is the best (for me obvs) cause there is more meat on your thighs than stomach. Also they have them in regular shots if you want, but need to/should have a nurse inject them. A few of my friends are RN’s so I just have them do it, and I think it burns a lot less. Good luck! Sending happy thoughts your way.

Have heard good things from a few CCFA buddies about Humira. Thinking about you tons and wishing you some rest and that H kicks in and does its job! You will get through this!!!

Karen@RunnerGirlEats says: May 2, 2013 at 12:23 pm

I hope you are feeling better soon! You seem to have some good people taking care of you and hopefully the drugs will kick in soon. Also, as someone that works in a hospital, that nurse sounds like a B. there is never a reason to lecture a patient about how they ruined her day.

I stumbled onto your blog today as I searched for some first marathon stories.
I am so sorry for your pain. I am sorry for your sadness that comes from a chronic disease. I wish I had better words.
I know what it is like to surf those waves of debilitation and relative health. I was diagnosed with rheumatoid arthritis when I was 20 months old. From what I have read, chrones and RA are somewhat similar in their origins, they just attack different parts of the body? I don’t know.
Anyway, I truly understand the depression and vulnerability that comes from not being in control of your own body. I understand what it is like to be on the couch for days, weeks, months at a time. I know what it is like to have my friends go surf, run, bike, hike and me offer (again) to watch their kids because my big physical effort was getting the mail and the pain is too consuming to do anything else. I know what it is like waiting for meds to kick in and feeling like a lab rat. My most recent and most successful medication (a combo of methotrexate and plaquinil with a side order of gluten and corn free diet) took the longest (almost 8 months) to kick in. I also know that if you maintain just enough energy and just enough hope to remain your own medical advocate, you can find progress. I am proof. Keep trying. Keep researching. Your blog is inspiring to me and speaks to my soul. I know we will never meet but your story of your first marathon and then reading this most recent post put me to tears. “she gets it” I thought. “She gets how big a deal it is to run”. I run my first marathon in 2 weeks. I have only told a handful of people that I have been training because 1. I don’t want to jinx it and 2. I think they might just think I am lying! Some of them remember me walking with a stroller around town. . .with no kid in it. . .it seemed better than a walker or a cane for a 25 year old. This may just be the longest comment ever, but I want you to know that I get it too. I am very familiar with the “you stupid body just get it together!” tears. I know how isolating an auto-immune disorder can be and I know how low it can bring me. I am sorry. It may be longer than you like, but it will pass. You will be stronger later but for now, focus on your mind. Your body can catch up later.

Oh Meg…I read your comment while I was at work today and had to hide my face in my hands for a while. What you wrote really got to me and I just want to hug you through the computer. My fingers, toes, arms, eyes and braids are all crossed for you and your marathon in two weeks. Keep taking good care of yourself and stay strong (easier said than done, I know, trust me). I’m thinking of you…

Bethany says: May 2, 2013 at 10:40 pm

Hey Girl, Sorry you feel so bad. I hate it for you, and for all us crohnies. But I have to say THANK YOU for your blog. Thank you for your honesty and for being willing to share your crumminess. You make me feel normal. I hate being sick, and you know the whole “AM I CRAZY OR LAZY?” because you feel like there’s no way your really this sick. or at least that’s how I feel sometimes ( a lot of times) so thank you for this blog. because when I read it I feel like I’m not crazy, that Crohns really does suck and its OK to hate it and recognize the suckiness of it. You’re doing something with this. I’m grateful for the difference you make.

Kellen says: May 3, 2013 at 1:22 am

Humira started working for me within a month! I would like to say it kicked in a couple weeks after I started, and it may have, but I know I felt completely in remission a month after the first loading dose!!! It has given me my life back COMPLETELY! I am a runner so I understand! Just be patient!

Sorry about all your news I feel your pain not been able to run because of a health issue. All the best for a good recovery