A Set Back

I’m thankful to be writing this blog post, because just a few days ago I was struggling to speak.

On Saturday morning I asked my parents to come home early from my brother’s house, because I felt ‘woozy.’ Something wasn’t right, and I was home alone with the kids. They came home right away, and my Mom took me to get medication. I went into the store and picked up my prescription and she went into the adjacent grocery store to get some things for dinner.

I made it back to the car before her, and sat down and waited. Something strange began to happen. I got that woozy feeling again, but this time I felt like I was going to pass out. And then my left arm began to go numb. My left fingers tingling, along with my lips and tongue. I dialed my Mom’s cell phone and did my best to tell her to get back to the car, I couldn’t breathe right. Something was really, really wrong.

I remember her getting in the car. I remember directing her to the ER. I remember nurses taking off my clothes and asking me questions. I remember talking to a doctor who said I might be having an anxiety attack. I remember telling my Mom to call my husband. I remember waking up no longer in the ER, but in a hospital room.

Everything in between all of those events is blurry. I know at times I was trying to talk, I could hear the words in my head, but I was unable to speak them. I know at times I knew I was in the hospital, and that my iv was burning, but I was unable to tell the nurse she missed my vein. I know at times I wanted to tell my Mom and husband how sorry I was this was happening, how tired of was of my body breaking down. How I felt, at one point, I was going to die.

Doctors came in and our over the course of the next 48 hours. The MRI showed an old stroke, but no new stroke. However other tests showed a new mini-stroke, or transient ischemic attack (TIA). Something that can be common with Lupus. Something that can mean a bigger, badder stroke to come.

It might have been my hormone patch, my lack of taking aspirin for the past few weeks, my CIDP, or any host of other ailments and reasons. We’ll probably never know.

I just know I remain scared. Confused. And angry this is happening to me. To my family. I felt like I was finally getting back on track. Like my health was finally getting better and I was closer to returning to work and normal life. Boy was I wrong.

Tomorrow I start physical therapy. An evaluation in the hospital showed the mini-stroke knocked me off-balance, and left the right side of my face drooping. So we will work to get me back on balance and each side of my face working properly.

I feel like we’re starting again from square one, and I fear another set-back. Mentally we’re all burnt out, and this was like a kick in the gut. I really hard kick in the gut.

I know I am supposed to be thankful I am alive, and I am. I really am. I felt, at one moment somewhere between the hospital room and the frantic car ride to the ER, like death was closer than it had ever been. I wasn’t scared. I just wanted peace.

Today I got in the car with my Mom and the kids to head to the store. I thought I felt well enough to help them grab a few things for lunch. But we didn’t make it out of the subdivision before I got scared, and asked to be taken back home. It was too soon.

I need to gain back my confidence. I need to gain back strength and believing I can get back to where I was. But being that close to death was beyond anything I can explain. I just want my husband, my children, my family close.

It was all I could do not to beg my husband to stay home from work this morning. And I spent the day hugging and kissing my kids. I don’t want to be apart from them again. Ever. Yet I know that with this disability I face the possibility of many more hospitalizations. Many more days getting treatment, undergoing therapy, and doing all the things I need to do to stay alive.

I will do it for my husband. I will do it for my children. They are worth every medication, every treatment session, and every single hospital stay.

Thank you for supporting my tiny family through this latest set back. And for encouraging me to keep going.

I can do it.


  1. Becca_Masters says:

    Massive hugs and love to you Erin. I know you can do this and I know that sometimes it’s hard but you are strong and full of so much life.
    My grandma had a TIA in March and it was touch and go. At one point so bad that my parents flew 7500 miles to say their goodbyes. She pulled through and is fine now, so fine that just 2 weeks Ago she flew 7500 miles to see us and attend a garden party with the Queen at Buckingham palace. She is a strong woman just like you who had lots of setbacks. I believe in you. I KNOW that you can do this. x

  2. Chantel says:

    Thinking of you daily Erin. You may get knocked down but you don’t stay down! You’re a fighter and one of the strongest people I know. You can do this! xo

  3. Tami from the block (thought that was slightly funny). says:

    Your fears are normal.
    Myself & my kitty Nya just had a talk/prayer with God. Well Nya only did bc she was laying on my chest when the conversation/prayer happened. Many hugs, true genuine concern and prayers focused on you and your family are coming your way.
    I almost forgot I’m going to be in LA. Would you like to show the littles how to really play Star Wars in the suburbs with no licensed guns? I hope you laughed a little 🙂 That was my intent. But, we do have some pretty mean light sabers over here.

  4. Just sending love to you all.

  5. Carolyn Lawson Low says:

    I’m taking this medicine that gets phrases or such stuck in my head on a endless, recurrring loop. Very bizarre. But, last night, while I was trying to fall asleep, I actually reprogrammed the phrases from a Katy Perry song to “Erin Can Do It/Lupus Can Suck It”. Over and over and over again. I woke up thinking it – and spent the day with that thought in my head. The entire day that thought was beamed into the universe and I believe it with all my heart.
    But please allow yourself to rest and heal… you need to be restored…. hugs.

  6. I hope you soon kick that kick in the gut right back. And continue to get better and stronger. Your kids are learning about perseverance and love and strength from you. With every one of those hugs and kisses you’re giving them. Warm, fuzzy restful and peaceful wishes to your restored health. xoxo

  7. Sarah Granger says:

    Erin, thank you as always for sharing what you’re going through. We’re all here for you. I know physical therapy is hard. My experiences with it have been really hard, but it’s so worth it. My dad, knocked down and paralyzed by polio never could have gotten back up again without physical therapy, and I know so many people who have improved dramatically after strokes of all types. Hang in there! I know you will, I know you’re strong, and you’ll do all you can. Each session can seem like it’s making so little progress, but if anyone can do it, you can! And maybe the kids can help you with some exercises, making silly faces, making it fun. Much love to you and your family.

  8. Sending good thoughts your way.

  9. QOS – and yes you are still the QOS- thanks for sharing.
    You’re an inspiration to your husband, your kids, your family and all of us.

    Keep fighting but also honor the fear and frustration.

  10. Erin- I am thinking of you and thinking good healing thoughts. xo

  11. I wish there was more I could do to help you through this. I hope this outpouring of love from so many friends adds to your considerable strength. xoxo

  12. I just think you are amazing and you are all in my thoughts. Stay strong, Erin. You can dooooo it! xo

  13. Laura (Nothinbettah2do) says:

    Wow Erin, I just found out!! Hang in there & follow the doctor’s orders!! You and your family are in our prayers~ : )

  14. Samantha says:

    Your feelings are completely understandable, Erin. You are such a fighter and I have so much admiration for you.

  15. You’re not “supposed” to be anything but Erin.

    Look, I almost died once, and sure I was SUPER grateful to have not. But I was also pretty pissed off at my body for failing me in such spectacular fashion. And I was also shaken and weird for not a little a while afterward. And frankly what happened to me doesn’t even begin to compare to what you have suffered so bravely through during the course of your illness.

    So fuck supposed to be. Just be whatever you need to be.


  16. oh, honey. this isn’t your fault. i hope you know that. thinking of you all.

  17. Julie Garbarino says:

    You are so brave and strong. I have a friend who has gone through what you are going through (with Lupus) here in San Francisco. I can’t tell you how many times she had mini strokes and seizures and was hospitalized. She did eventually get better through some treatment at UCSF. It may have even been chemo or radiation. She now has her life back. There is hope. Also, there are 2 other doctors, separate from UCSF, that I can’t recommend highly enough who work with Lupus (off the grid). One is in Santa Rosa, CA and the other is in NY, NY. Please let me know if you would like their information.

    Sending you healing energy and strength,

  18. Every time you feel like you might not be able to do this, don’t worry. We all have enough strength, love, sass, confidence and determination for you to borrow whenever you feel like your running low. And there is plenty for your whole family to tap into a well. You can do it Erin. You can. xoxoxo

  19. Sending healing thoughts your way. You are an amazingly strong woman.

  20. Alana Joy says:

    I love you so much that there are no words to accurately depict… I wish I could absorb some of the pain, the fear… but you have a bottomless source of strength and bravery. Chutzpah. You’re one of the best humans I know.

    Hugs, love, and cuddles from Portland.

  21. Hi beautiful!

    I just read Julie Garbarino’s comment and I can tell you she is legit in her recommendations! She is helping out a number of our wives who are currently battling Lyme disease and she has been completely cured of Lyme via these doctors…

    There is ALWAYS hope and if anyone can beat this it is YOU!!!! If ever there is anything I can do for you, anyone I can try to get you in contact with, DO let me know! I HIGHLY recommend connecting with Julie!

    Love you oh so very much!


  22. My heart goes out to you, Erin. If anyone can, it’s you. You are feisty and fierce.
    Make Lupus your bitch.
    love you.

  23. Thinking of you, Erin. I’ve followed your journey for a while (via @ericabz, on my personal twitter account) and I greatly admire your determination and spirit. (And your political views, too.)

  24. I wish you the best of luck. Thanks for posting.

  25. Yes, you can do it.
    And you have to.
    Not just for the extremely important reaons you listed, but also so that those damned women at the checkout always have to worry if the coupon hottie’s wife is going to come back and scare them some more.

    (I really hope that’s appropriate. It’s intended to make you laugh, so I hope that’s what it acheives.)

  26. Christina G says:

    Erin, I was so upset when I heard. Get well soon. Lupus can suck it!

  27. I will say to you what one of my friends said to me when he found out I was going from LA to India to have surgery. By myself.

    You’re very brave.

    (saw your story via Twitter)

  28. New reader here just wanting to send you good vibes and heal quickly wishes. Really hoping you never have another ER visit/hospital stay so you can enjoy your time with family. Will be cheering you on in D.C.!


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