life: super powers not included

When Things Get Hard

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This post was really hard to write, and I almost didn’t publish it. Being real on the blog is difficult, and I do my best to stay positive. But I also believe in openness. So here it goes.

True confession time.

I’m in a funk. I love writing this blog and I love all of you, but I’ve lost a lot of readers since I was diagnosed with EM. (Which, by the way, is totally understandable considering my life is not nearly as exciting as it used to be.)

I’d like to say that it hasn’t affected me, but it has. As much as I write this blog for myself, I also write it for others, too. I write it to connect with others. So when people leave, it’s not fun.

I think it’s affected me to the point where I don’t enjoy blogging as much as I used to. And that’s not right.

That’s why I’m taking a vacation. I think I need a week or two to remember why I loved this blog in the first place. Thanks to all of you for reading. Each and every comment makes my day. I really hope you’ll be here when I come back.

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61 comments

1 Becca { 06.10.11 at 7:06 am }

I’ll definitely be here. Your honesty and warmth make this blog such an engaging read. Enjoy your time off. xx

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2 Amy B @ Second City Randomness { 06.10.11 at 7:16 am }

Take all the time you need. I’ve gone through funks of “why am I bothering with this?” all the time. And you have to figure it out for yourself.

I do hope you come back! :)

Have a great weekend, my dear!

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3 Mary in Richmond { 06.10.11 at 7:33 am }

I get it. And I’ll be here, for what it’s worth, if you decide to blog again. It’s very interesting to me to hear about how EM affects you (can so relate!), the challenge of eating in way to feel better (again, I so can relate), “the man” (relate) and your observations and interests in general. Makes me feel more human somehow rather than just an EM-er. And your writing style and sense of humor are lovely.

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4 Mary in Richmond { 06.10.11 at 7:35 am }

I get it. And I’ll be here, for what it’s worth, if you decide to blog again. It’s very interesting to me to hear about how EM affects you (can so relate!), the challenge of eating in way to feel better (again, I can relate), “the man” (relate) and your observations and interests in general. Makes me feel more human somehow rather than just an EM-er. And your writing style and sense of humor are lovely.

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5 gionance { 06.10.11 at 7:39 am }

enjoy it, giving your brain some time off is a must. read the kind of book you would never think to read. it is always good to refresh. i will be here.

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6 seegirlsmile { 06.10.11 at 7:47 am }

I never comment, but I read your blog everyday. I’m not really into the “big” blogs so much anymore. I prefer blogs like yours with wit and charm.
Plus, I’m dealing with a physically bad spot in life now also (nothing beyond a short walk) and dealing with doctors and being terrified about the whole process. I’ve always admired you for how you take your serious condition and put a sarcastic, witty, and genuinely funny spin on it. I strive to do that…instead it comes across as miserable and confused. Maybe time will heal all wounds.
Anyway, I read. I don’t think anyone reads my blog (but my current blog is more just for me anyway), but I know what you mean — sometimes I wishI had more readers (for different perspectives, etc).
But its cool to know that a blog is NOT necessary either. You can be successful without this crazy, and sometimes frustrating medium.

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7 Maren { 06.10.11 at 8:42 am }

You are so beautiful! I really love that picture of you. Take as long of a break as you want! It’s YOUR blog! I will definitely be here when you get back :)

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8 Lia { 06.10.11 at 8:42 am }

I really enjoy reading your log. I actually found it after your blog changed I guess; I just spent the last few minutes looking through your archives and see what you’re talking about. I do enjoy your blog and I’ll still be here when you return, but no stress, I understand why you would take a bit of a break.

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9 Nicole, RD { 06.10.11 at 8:48 am }

I really can’t imagine what you’re going through. But through it all, you’ve remainded witty and wise, and that will never, ever change. That’s why I read your blog – it makes me laugh. Whether it’s a funny photo, or just the way you can take any old sentence and turn it into one that makes me laugh. Loyal reader, right here! Take all the time you need, I’ll still be here…and so will many others :)

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10 Heather B { 06.10.11 at 9:47 am }

Ugh. I’m so sorry you feel that way. That really sucks. I may not comment very often because I am terrible at comments, but I always read. (I’m a feed subscriber.) I hope you’re not gone too long, because I’ll miss your posts. But regardless of how long you’re gone, I personally will still be reading when you come back.

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11 Kelly { 06.10.11 at 10:26 am }

I’m sorry Tracey!! Hang in there. I think taking a vacation is smart…it will help you evaluate what is important. I personally hope you don’t stop blogging. You are such a kind person and reached out to me when I had my infamous finger incident. My heart goes out to you all the time. I know living with EM is difficult and the fact that you do remain so positive throughout is humbling. Hang in there…email me if you need to. I will always listen. Always.

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12 Heather C { 06.10.11 at 10:38 am }

I really enjoy reading your blog and for me, with my broken down spine and not being able to run anymore or do certain things I used to enjoy, I find inspiration here and a sense that I am not alone in my struggles with pain and with things going on in my body that I don’t want. Plus, I also really enjoy the food ideas and pictures, hearing about the “man” and just your wit and perspective in general. For purely selfish reasons, I hope that you can continue to find some fulfillment in expressing yourself here but if not, I totally understand that too.

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13 Clarissa { 06.10.11 at 10:40 am }

Sorry lady! I admire your honesty though. I found you after you’d be diagnosed and I’ll be a fan for life! You gotta write what’s deep inside you, not what you think others want to hear. That’s when my best writing comes out. You are the most humorous and insightful blogger that I follow, and I follow a lot of blogs. It’s always good to take a vacation though, so please take all the time you need! I will still be here when you return :)

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14 Suzy { 06.10.11 at 11:36 am }

I’ll be here. I’m in a blog funk myself.
Oh..and I got my stickers in the mail! You rock!! :)

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15 Joy { 06.10.11 at 12:43 pm }

Hey miss. Maren is right about the photo. Even with a pained expression, you are gorgeous. Not that that is any consolation. I’m sure you’d rather be very healthy than very pretty. I also read your blog everyday no matter how busy I am. I know I’m lucky to not have any major health challenges right now and often your blog makes me notice and be thankful for all the little things my body can do that I would certainly otherwise take for granted. While you pause, think about why you blog outside of the metric of pageviews and subscriptions. What do you get out of it for yourself? If it’s draining you more than it’s giving you, then maybe it’s time to move on to another project though I would certainly miss your blog. Feel better. I will be thinking about you.

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16 Ann { 06.10.11 at 1:06 pm }

I read every post too Tracey. I feel so bad for this crap you are going through. I certainly understand being in a funk too! Take all the time you need, I will be here to read on when you are ready to get back to it. . . . and if you choose to do something different, that’s OK too. We all need to do our own soul searching from time to time. Sending a cyber hug to you! : )

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17 Ché @ Knight at the Restaurant { 06.10.11 at 1:10 pm }

I read your blog every Mon/Wed/Fri, and it’s my FAVORITE. Take time but know you’ll be missed while you’re away!!!

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18 Andie @ CanYouStayForDinner { 06.10.11 at 2:07 pm }

You are so beautiful- that photo, the way you share yourself, the effortless way your writing comes across, your hilarity (word- yes/no?)….I really do admire you.

Wishing you all the goodness I can :)

Andie

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19 Megan (Braise The Roof) { 06.10.11 at 2:10 pm }

You have every right to take time off from the blog! You definitely have to live your real life before your internet life. :)

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20 Carly { 06.10.11 at 3:44 pm }

Big hugs! I hope the break does you well, and I will anxiously await your return!!

(P.S. I have not been commenting lately since I don’t have internet, I’ll never leave! ;) )

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21 nance { 06.10.11 at 8:19 pm }

I will really miss your clever commentary on life. I hope you’ll be back to it soon. But in the meantime…rest …relax…and please finish your book so I can read it.

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22 Jill { 06.10.11 at 9:01 pm }

I will certainly be here when you get back. In fact, I might check it just to be sure you’re not back early :)

I’ll miss it.

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23 Sheri { 06.10.11 at 9:40 pm }

We all need breaks. I am in one now, you have to work on you that is most important.

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24 Wei Wei { 06.11.11 at 12:02 am }

Tracy – just wanted to let you know that I’m here, and always will be. I don’t normally comment because sometimes I just don’t now what to say, because I don’t know what you’re going through with EM. Take a good break, and I’ll be looking forward to your next post :)

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25 Cassie @ A Very Busy Mind { 06.11.11 at 6:22 am }

So, I discovered this place AFTER you were diagnosed with EM. And I loved it. This was fourish months ago.

I’ve since gone through a blog identity crisis, have done a major overhaul, and went on an unsubscribe spree in my Google Reader. (Ever realize you SO do not identify with the bloggers/blogging community you’ve been trying to align yourself with? That’s what happened to me.).

The first round, I kept six or so of my old subscriptions – yours was one. Then, I weeded out even more, keeping only two – yours was one.

Now, I have a whole new list of blogs I subscribe to that I truly respect – yours is one.

Tracey, your undeniable talent, and your unbelievably strong will (How the eff do you stay positive?) have made me a long-time reader. Take all the time you need, but just so you know, I’ll be here when you get back.

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26 Katie @ PEACEBEME { 06.11.11 at 10:31 am }

Noooo! :( I hope you come back soon, your blog is honestly one of my absolute favorites out there!

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27 Katie @ PEACEBEME { 06.11.11 at 10:32 am }

Just had to add that I find your blog so inspirational and will definitely miss your posts. Thinking of ya!

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28 Deb (SmoothieGirlEatsToo) { 06.11.11 at 12:00 pm }

Hi Tracey- I just got back from a trip and saw what has happened with your diagnosis- I’m so sorry and I do hope that you find another doctor who has more compassion and can give you a bit of hope.

I know that you don’t care so much about physical beauty vs. health, but that photo of you is really stunning. For what it’s worth.

I totally support you taking a break. I’m certain that if I was diagnosed with EM, I’d fall into a deep depression, so kudos to you for keeping your head above water. Recharge, regroup and come back to the blog- or not. I’d miss you for sure- but it’s your life and you need to live it as happily as possible.

Hugs to you.

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29 Bick { 06.11.11 at 7:37 pm }

Weighing in to say that your photo is gorgeous, you are stunning, your writing is all those things that your more articulate readers have said, you will be missed, and that I will be here whenever you choose to return.

In the meantime, I wish you a restorative break with R&R and some fun. Forever I wish for you All the Best.

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30 Leslie Q. { 06.11.11 at 8:57 pm }

Tracey, you’re amazing. You’re gifted. And yes, pretty, too. :) I really love your blog. Your honesty and POV is refreshing, and you’re such a good writer, no matter the day. I wish I could give you a hug, but since I can’t, hope you can feel my support in this comment. I’ll be here (and on your other blog) if you come back. (And if you don’t, I know I’d miss you, but I’d definitely understand.) Take care of you. :)

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31 Ameena { 06.12.11 at 1:20 am }

Oh Tracey…I’m so sorry you’ve lost readers. The truth is that I haven’t been able to read daily and not because of your EM but because of life and work and home life being too busy for me to keep up with my favorite blogs. And when I do get a chance to read I don’t always get a chance to comment.

I hope that you take a much needed break and find your love for blogging again. I’d miss your clever humor too much if you disappeared for good.

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32 Jenn L @ Peas and Crayons { 06.13.11 at 5:16 pm }

ummmm can we still chat mucho on twitter? b/c i’m afraid if you take a break i’ll miss you too too much! Your posts and writing make me laugh/smile/want to hug you and I don’t ever want you to stop! <3

I lost a ton of readers and "followers" (starting to hate that word!) when I started posting house related stuff instead of just recipes and artsy fartsy things and it made me want to SCAH-REAM but Its our blog… we do what we want right? haters need not apply <3

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33 Alina { 06.14.11 at 12:51 pm }

I actually discovered your blog shortly before your diagnosis and while I love you blog – you are smart and witty and beautiful and strong and, yes, inspiring.

When it comes to readership and comments, I think there is a difference between quality and quantity. Both your blog and your community have stayed high quality, no matter what happened to the quantity portion of your readership.

I hope you come back after your time off and I’ll miss your blog in the meantime! And please email me any time if you feel like it!

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34 Clarissa { 06.16.11 at 9:31 am }

COME BACK LOVE!!!

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35 Susan (Oliepants) { 06.16.11 at 11:04 am }

I think your blog is great but you take whatever time you need. Regroup – come back – and we’ll be here! :)

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36 charlotte { 06.16.11 at 7:28 pm }

Glad you are taking a break – my 1-month hiatus from blogging was the best thing I ever did! And while it takes me a while to catch up sometimes (obv) – you have a permanent place in my reader!

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37 FoodFitnessFreshAir { 06.20.11 at 11:59 am }

Keeping up with a blog can definitely be challenging, especially with all else that goes on in life. But you do really have a knack for writing, and I know you make all of your readers laugh, me included! Refresh yourself and take a little time off, and I’m sure you’ll be re-inspired. You have tons of followers who will stick with you either way!

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38 Christina Carabini { 06.26.11 at 10:51 am }

Certainly Ive seen over the years and I have even been lucky enough to have more than my share of blog posts that . I have news for you though a blog post does not have to go viral on some in order to be the perfect blog post.

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39 Alex @ IEatAsphalt { 07.01.11 at 9:33 am }

Hope that you’re doing well! Let’s meet for a smoothie? Komucha? Whole Foods? sometime soon. We are neighbors after all.

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40 Wren { 07.01.11 at 10:15 pm }

Hey, Tracey,
I miss the smile in your “voice.” I hope you’ll come back when you’ve rested.

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41 Lu Ann { 07.02.11 at 8:07 pm }

My reader is patiently awaiting your return! Hope you’re doing well and just know—-None of us are Superhuman!!! Do whatever is best for you!

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42 Alina @ Duty Free Foodie { 07.03.11 at 5:42 pm }

Just saying hi and hoping to hear an update from you soon!

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43 William { 07.04.11 at 8:27 pm }

Tracey:
I must have drifted here, toward your blog, from someone else’s. And like everyone else here I believe you are a gorgeous, fragile little thing.
But you are also in pain; holding with your hands the burdensome grief of severe illness. How then can you blame them (us?) in our somewhat pathologically American need to abandon ship, to “un-flock” in the face of compromised idyllic beauty when you as well seek a measure of separation from this (though I’m afraid, given your position in this as Center ’tis an impossible task; have you read S. Sontag’s wonderful “Regarding the Pain of Others”; or watched A. Kurosawa’s “Ran”?)?
Yet while a stern concern is that the digital divide will move us all wholly out of empathy, dare I suggest that for the time being (before the world descends into a madness absurd and unconditional, or ascends to it, who among us can tell anymore?) you take notice not of who or what has in this chorus of your life been lost but rather, where at all possible (and even then to what feasible extent) rejoice with whom- and what- is and will through it be gained.
For if two bed-ridden years within the austere confines of a hospital room taught this fellow (budding) author anything it is the certainty of the latter, and never the former, as that which matters most. When it matters most.
Alors courage a toi, petite!

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Tracey Reply:

Thanks, William. I’ve since realized that it was less of a reader thing and more of a me thing. When you’re sick with a chronic illness life can get overwhelming. Trying to deal with and accept my EM has been hard, and I think keeping this blog, desperately trying to hold onto who I was before EM, was one more thing on top of losing most of what made me, well, me. I believe blogging should be a fun task that you look forward to, not something that adds an extra burden. And that’s why this vacation has been so essential for me.

I completely agree with needing to look at what I’ve gained instead of what I’ve lost. That, of course, is a work in progress.

I appreciate your comment, William.

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44 Megan @ MAID in AK { 07.12.11 at 4:03 am }

I’m sitting here on the couch, not able to sleep because my feet are burning like MAD. It made me think of you (I really need something a bit more positive to remember you by…) and I thought I’d come by and say hi. Since moving my website to another platform I don’t check my google dashboard often, so I miss posts from all of my favorite blogs all the time. :( BOO! Hope you enjoy your break… you deserve it! You work hard!
HUGS!

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45 Nicole, RD { 07.13.11 at 11:11 am }

Miss you! Hope you’re doing well, Tracey!

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46 courtney (pancakes and postcards) { 07.17.11 at 10:52 pm }

i really hope you are enjoying your time off. real life is always, always going to be more important. good luck and sending happy thoughts!

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47 Bunker { 07.20.11 at 3:09 pm }

Look at all your readers and fans! You definitely deserve a break, but if you feel like returning to the blog, know that we are here reading / thinking about you :-)

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48 Patrick { 08.01.11 at 1:57 pm }

It’s August now. You’ve had your break. Get busy. We’re waiting. ;-)

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49 Kala { 08.02.11 at 10:19 pm }

Hi there, I’m so sorry to hear about your symptoms and I completely understand, im 22 and I too have EM. but mine is a little different as I don’t get the extreme pain, there’s pain but mostly tingling numbness swelling and over all horrible discomfort. The heat intolerance is insane and I sleep as you do. Cold room. Cold fan. Cold blankets. I hope they discover more about EM and find a cure or even a more managable treatment. It’s comforting to see other people suffer like I do, bittersweet also because it’s horrible and debilitating.

You’re in my prayers, Kala.

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Tracey Reply:

I know what you mean, Kala. It’s nice to see there are others like me out there (technically young but with a body that functions worse than my grandmother’s) and at the same time I’m sad to hear about anyone else’s EM. It’s a terrible disease and I wouldn’t wish it on my worst enemy.

Even without the pain, EM majorly sucks. So I know what you mean when you say it’s still horrible and discomforting. Feel free to email me if you want to chat about EM or swap stories/tips. I’m at tracey(dot)neithercott@gmail.com.

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50 Gio { 08.03.11 at 1:21 am }

I want to be one of your friends so count me in.. in your everyday life..

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51 Wren { 08.05.11 at 12:07 am }

Thinking of you, Tracy, and hoping you’re doing all right. Miss your words here, too. Take care…

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52 Liz Sheppard { 08.10.11 at 1:06 am }

I started following your blog BECAUSE of your EM, which I also have. Hope you’ll be back soon.

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Tracey Reply:

Sorry to hear you also have EM. I didn’t realize so many people with EM were reading! As much as I wish you didn’t have EM, I’m glad to find out I’m not alone. I’ll be back, I promise!

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53 Dan { 08.31.11 at 7:09 pm }

Hi Tracey,

I just happened upon your site, because I was searching for information related to EM. I started having severe pain in my left knee in 2009, which progressively got worse over the next few months. By last summer, I had to keep ice on my knee almost constantly because of the pain. Suddenly, one day while icing, I felt this intense pressure in my foot, looked down, and saw that it was turning dark purple. Over the next few days, the situation stabilized, but my foot didn’t completely return to normal. Then, the problem spread to the other foot.

I tried doing some research to find out what it could be, but came up short. All I knew is that my foot was reddish whenever it was in a prone position, or when exposed to hot water in the shower. Eventually, I discovered EM and was surprised by how well it fit me. I brought it up with my GP, and he didn’t disagree after looking at the diagnostic criteria (he had never heard of it prior to that). My only good fortune is that it appears to be a relatively mild case, and I can still wear shoes and socks. Still, I very frequently have burning pain in my feet that significantly impacts my quality of life, to say the least.

I still don’t know what is wrong with my knee after more than a year. I am getting a bone scan and MRI this week so I am hoping that I can finally get some answers. As it is, I’ve had to use crutches to get around for the past year.

Like you, I’m something of a nutrition and health nut, and was before all of this happened. I’m actually a vegan. Unfortunately, all of these things still happened anyway! I was fully expecting to live a healthy and active lifestyle into my old age (I am 26), as I had no reason to think things would be otherwise. Unfortunately, life doesn’t always turn out as we expect. My heart goes out to you, and I hope that you can find a solution to this harrowing puzzle that is EM. I’ve been considering going to Mass General Hospital (I live in Massachusetts), because there is a specialist there (Dr. Anne Oaklander) who has familiarity with the condition and has actually cured at least some of her patients. If I ever get any answers, I’ll be sure to let you know.

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Tracey Reply:

Hi Dan, thanks for your comment. It’s funny you mention your knee. I’ve had knee pain for years (way before EM) and could never heal it. X-rays and MRIs showed no damage and yet I was constantly icing it after walking a few blocks. What seemed strange to me at the time was that people with arthritis whose X-rays show substantial cartilage degeneration can still walk without pain. And yet I couldn’t despite what looked on film to be healthy knees. I wonder if that was EM. Who knows.

I thought about going to Mass General, too. I grew up in Mass. and my parents still live there, so I’ve considered heading there for a visit. If you do see Dr. Oaklander, let me know how it goes. I’d love to reverse time and be in my twenties. As it is, I’m upwards of 80 right now. (And without the possibility of retirement!)

Oh, and I’ve also turned to a vegan diet. I find that it helps with managing the EM. Dairy in particular seems to cause flares.

Good luck finding a treatment (and cure) and be in touch if you find anything that works. You can always email me at tracey(dot)neithercott(at)gmail.com if you want to swap stories or tips.

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54 Sagan { 09.08.11 at 10:38 pm }

Hugs, Tracey. I haven’t been around much at all in the blogging world – life tends to get in the way! But I’m sorry you’re having such a difficult time (and I know this comment is VERY late in coming, and I’m sorry for that too).

My dear friend and co-founder of The Food Label Movement was diagnosed with Lyme disease earlier this summer, and she’s only recently been able to connect with me (and by “recently” I mean today), because she was just too tired to do much at all. Illnesses do that to a person – they make everything very overwhelming. So it’s understandable why you haven’t been blogging.

I really hope that you’re doing well.

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55 Crabby McSlacker { 09.30.11 at 1:23 pm }

If it’s any consolation, I think blog audiences are down all over the web… too many other options like facebook, twitter, etc. And I know I’m guilty of not stopping by many of my beloved favorite blogs very often…. there just aren’t enough hours in the day!

Hope the EM improves–sounds horrible, but you’re truly a fighter and I know you’ll somehow find solutions that will get things back more to “normal.” So unfair though!

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56 Nichole { 10.18.11 at 5:55 pm }

I can speak from experience, I just took a break and feel so much better for it. You come back when you’re ready, and say as much or as little as you want. I completely respect this decision. All the best:)

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57 Yum Yucky { 06.19.12 at 12:29 pm }

Hi Tracey! I’m so sorry to hear about your diagnosis.
Enjoy your break and get refreshed. I hope you find clarity and move in the direction that’s right for YOU. xo

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