A Break…Please

My health had spiraled downward in the past few months, and needless to say we’ve been a bit scared around here. It has been a humiliating round of trauma for me, personally, as I attempt to pull myself up from new lows.

No, really…new lows.

Think I’m kidding? It started a few months ago with uncontrollable diarrhea. Emphasis on uncontrollable. Cue colonoscopy where I had the fun of getting knocked out fully (thank you) and we await biopsy results that still have us on edge.

Then there is the increased prednisone. That equals increased weight gain to new highs! Or lows, depending on how you see it. I now have two chins. And folds where I didn’t realize people could have folds. I can’t lay down anymore without new weight shifting and falling, very uncomfortably, into me. I’ve taken to sleeping while pushing my boobs down towards my stomach, trying to be comfy. I’ve also started putting deodorant under my huge boobs.

Don’t say I never give you the really good tidbits. Honestly, more people should talk about this. Prednisone weight gain isn’t normal. So it isn’t proportional. Which means I can’t possibly be comfortable, because that would be too much to ask…no, I’m freaking miserable with a very disproportional weight gain that just seems to hang on me like 40lbs of weight pulling me down in all directions.

Once we weathered the colon fun, I suffered an episode that had me in the hospital. I’ve already talked about it briefly but we did just get word from the neurologist that everything is ok. I’m thankful, if not still a bit freaked out and wishing there was a nurse around me at all times.

Then the kids got Influenza A…and despite my having the shot, guess who got it next? I type to you from bed, where it remains hard to lift my head…I’m not kidding. In fact I have to keep taking breaks between sentences because it’s hard to hold my arms up to type. My muscles hurt that much. With pain reliever.

They tell you all these things will happen with Lupus but they don’t really explain what it means for you, for those around you, for those taking care of you. It’s hard. Beyond hard. I have horrible guilt…I’m working on it. I have horrible regret…I’m working on it. I have concern for my overall health…I’m working on it. Doctors have said ‘we need to make you sicker to make you better’ which makes me horribly angry, because I don’t feel like I can get any ‘sicker.’ My family can not take me getting any sicker.

I say that but they keep taking it…and I keep getting sicker. Scaring me. It’s very scary when you think you can’t take anymore and it just keeps coming…harder.

My body needs relief, badly. I’m begging my doctor for relief today, and am begging the universe for a break. We’ve taken more than we can handle, and while reinforcements come soon, it’s not soon enough. My brother doesn’t need to be changing my sheets and trying to carry me into an ER all in a span of a few weeks. My husband deserves to train for his race. The kids deserve a Mom that can be present mind, body, and soul…not in bed hoping to lift her head off the pillow.

I don’t think that is too much to ask.



  1. You are such a fighter and and an amazing inspiration. Sending prayers for relief and some kind of normalcy through it all for you. Hang in there girlfriend. ((hugs))

  2. Yep, prednisone weight gain sucks. (thus why I am refusing to go to the doctor right now because I know that will be first choice and the weight gain plus the crazies won’t do me any good right now) It isn’t in the right places and shifts and blah. And, no the flu shot won’t always work with people with suppressed immune systems. Fair warning: Flu is better than getting the chicken pox multiple times in adulthood. Maybe. I don’t know. They both can kill. (not that I am saying it will or anything like that–you know that)
    #suckit to it all

  3. It is not too much to ask. You deserve a break and I hope it comes soon.

  4. Oh, you know we are here wishing it gets better like yesterday. Relief is not too much to ask. Me not making a little funny about you “bedding” your doctor is too much to ask too though.

    Big, soft, gentle, fiercely authentic hugs to you.

    Don’t be mad I made the joke, please say it made you laugh…

  5. Oh Erin, big hugs to you. I am asking the universe to give you a break too.

    hope that you get a break soon.

    lots of love and hugs and cute pictures of puppies.

  6. and also, I too have to put deodorant under my boobs. big boobs are a nightmare!!

    but on a serious note. i really hope you get a break soon. we’re all here for you night and day.


  7. If there is anyone more deserving of a break, it’s the lot of you who are affected daily by the ricochet of effects by Lupus: The Asshole.

    Although I can sit here and say that I know it has been really hard for you, I don’t know. I can only imagine, and from what I gather, what I imagine pales in comparison to the reality. But…BUT…the thing that I do know, without a shadow of a doubt, is that your ability and continuity in weathering this dastardly storm, warrants you, nay, ENTITLES you to a break. A big, honkin’ break. With a unicorn involved. Maybe naked? Yes, naked unicorns make the world spin round. Columbus said so. Or was that Jesus. Erroneous.

    What I’m trying to say is that I love you, the kids, that husband guy of yours, and everyone who has played a part in directly supporting you whether emotionally, mentally, or physically. Damn that distance character! It can choke on an elbow for all I care!


  8. _you did make me laugh, and catch my typos 😉

  9. Thanks all. Just when I think their love for me can’t be tested more…it is. It”s unreal.

  10. Sending you strength and love Erin – and hoping that very soon you’ll get a break. You and your family certainly deserve it. Hang in and fight, even when you don’t think you can any more.

  11. I keep waiting for you to get a break, too. From this distance, I see the assault on your body and your spirit, and I want it to stop, get better. I hate that neither I nor you nor even all those medical professionals have control over how you feel from one day to the next. You have my best wishes, my love, and all the strength vibes I can send via the Internets.

  12. We know how hard this is for you and your family. Yes, you more than deserve a break! We appreciate it that you make the effort do what what you can every day. It may seem like small things at times, but we know for you it like moving a mountain. We are glad that even if you don’t feel like yourself and it takes 200% more effort to do “normal” things, we still have the benefit of your voice and your opinions online. Hang in there! XOXOXOXO

  13. There are a dozen or so platitudes that you’ve heard from family, friends and even some enemies, so I won’t go there. Instead, I will ask a question that someone asked me once when I was at a low point…why not you?

  14. I hope you get that break soon. It is unbelievable what you’ve had to endure. You are stronger than I could ever be.

  15. Of anyone I’ve come to *know* in my life, I swear you and your family deserve a break more than anyone right now. It makes me truly angry that you are all being challenged so horribly by Lupus and that it’s robbing you of so much as a wife, mom, and woman, but what I’m sure of is that you are possibly the toughest broad I know and that family of yours isn’t going anywhere. We here on our computers aren’t going anywhere either. I’m so glad you take the time and all of the energy it takes to write every now and then. Shaing your story so openly and honestly is a gift to everyone who reads your blog. Of course it also makes me want to hop a plane and come help somehow……I’m not even kidding. If I could, I would. xoxo

  16. I’m just here reading, and thinking of you.

  17. I wish there were something, anything, other than words of encouragement, listening, reading…I wish there were something I could do.

  18. #SUCKITLupus

  19. They have to make you sicker to make you better ? If that isn’t a total bitch than I don’t know what is. You deserve a break the size of…well the size of the largest break ever.



  20. Editdebs says:

    Sending prayers and good vibes for a break–and better health.

  21. Mercy, I’ve heard of dark night of the soul but I think you are on the month to month plan.
    I get worried when I don’t see a tweet.

    Hold on, prepare expectantly for your resurgence.

    You have come too far to turn back now.

  22. Hang in there Erin! I know the comfort of your family’s love helps a bit. Rest and feel better soon.


  23. Man, that sucks. I wish you could get a break. It’s so unfair. I wish I had better words, but I don’t. 🙁
    On the boob note: Baby powder actually works pretty well too. It feels less slippery (as body heat + DO tends to feel), and keeps moisture at bay longer. Me and my ginormous boobs know these things.

  24. nothinbettah2do aka Laura says:

    Hang in there Erin!! I’m sending a message to the “Universe” to take it down a notch!! Lots of hugs and kisses!! #suckitlupus

  25. txvoodoo says:

    Sending best thoughts. & btw, if you ever need to talk to someone about the diarrhea, even just to bitch. I am a tmi poop queen/resource! #BadColonsUnite.

    Seconding the baby powder vs deodorant thing. Deodorant under the boobs will irritate after a while.

  26. <3

    H H U U G S
    H H U U G G S

    for all of you babe…

  27. HEY! That was supposed to look like ascii art! oh well…

  28. Meg @sleepynewmommy says:

    I feel like I can’t say anything to make it better because…well…I can’t.

    What I CAN say is that you are an inspiration. Even though you don’t feel like one. You keep fighting when most anyone else would have given up. Hell, I know you’ve felt like giving up, but you keep going.

    Sending you lots of love and hoping that you get a break…a glimmer of some relief in your near future.

  29. and I totally forgot to tell you all how the doctor measured my prednisone hump on my neck #sexy

  30. Laura @nothinbettah2do says:

    YIKES!! They do that??

  31. I love you, Erin.

  32. Erin, I so wish we were closer and could help ease some of this for you and Aaron and the kids. And we so wish you could have a break from all of it. Hugs to you all. Love, Jenn

  33. Erin I know how frustrated, sick and uncomfortable you are! I am so proud of you though for trying to keep the pain and suffering away from the children. Your allowing them to be children as long as they can ! You’ve gone through so much for a lovely, young woman with many aspirations and dreams–those dreams will come maybe just at a later time. Right know your main objection is for you to put all your efforts into yourself! It is not selfish its called surviving! When that special caregiver comes let her take care of you! We all love you, moon face or not–those are things you will laugh about one day ! Right now it’s about getting your strength back, smile even when it’s not funny and remember we all have you in our hearts, minds, and prayers! I LOVE YOU ERIN KEEP FIGHTING!

  34. Rebecca says:

    Hi Erin, My name is Rebecca and I am co-chairing the DC Lupus Walk this year. My mother battled with Lupus for twenty years before she passed away, so I am involved in the Walk in her honor. I’m really moved by what you said here, I remember my mom being on prednisone and one of my big goals is to have a world where that horrible drug is no longer needed to treat people with Lupus. I’m following the tweets from your very supportive friends, and am so impressed by their fundraising. I look forward to seeing you at the Walk. -Rebecca

  35. Erin,

    This totally sucks. You deserve a break and I hope the universe hears you and grants you a huge one.

    Keeping you in my thoughts and prayers. And sending the most positive thoughts I can muster to your family.

    Feel better.

  36. Ginger Kenney says:

    Erin my heart aches for you and your family. Continuing prayers and good thoughts, for most certainly you all deserve a huge break.

  37. It sucks and that’s all there is to it. Saying it has to get worse before it gets better is like the fireman who tells you your burning house has to burn down to the ground before it will be safe to rebuild, except you ARE THE FREAKING HOUSE!

  38. If there was something to picket, I would be making a sign right now.

  39. Sitting here feeling angry for you, heartbroken, sad and so many more emotions that are hard to put into words… wishing I could make the damn lupus go away… sending you all the healing vibes I can muster… you are amazing… your babies are amazing… your hubby is amazing… Lupus is goddamn evil and needs to be obliterated… I am so, SO sorry sweet Erin.

    I love you and, in spite of the new lows, KNOW you will beat this… it HAS to get better!

  40. So sorry to hear this. Sending you love and healing prayers.

  41. Sending strength and love your way Erin. XOXOXO

  42. Just catching up after a 4 day bender (on med-surg textbooks, not anything else, sadly.) I wish I lived closer so I could hang out with you while you rest up. I spend most of my life in my jammies anyway. Love you! *smooch*

  43. I am so sorry that you are at the breaking point. It just isn’t fair. You deserve better. I am keeping you in my thoughts and prayers for things to get less uncomfortable, for laughter, and for answers that don’t require more medicine.

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