Living la vida lupus

Living la vida lupus

I don’t know how to say this so I am going to say this as if I am just talking to a group of my friends. Okay?

So many of you have followed me through this journey of trying to discover why I have been suffering for years with chronic daily (as in every single damn day of my life) headaches and migraines. Back in April  of 2014, I was hospitalized for 9 days while they ran tests and tried to get the pain under control. I started to find relief around day six. (Wouldn’t you know it?)

While I was in the hospital they ran many, many tests. Some of those test results came back not so very encouraging.  My focus was on finding relief from my headache pain and that was basically all I cared about. I finally found an amazing new neurologist with a new game plan to kick these headaches back to hell where they came from. Long story short, my new neuro was going over my test results and called me to go over other, non-headache realated symptoms. She then sent me straight to my former rheumatologist who them put 2 +2+ 6 +7  together and came up with Lupus.

A couple of weeks ago I was diagnosed with Lupus.

I hate that sentence. I really, really hate that sentence.

A couple of weeks ago I was diagnosed with Lupus.

I can’t even cry about it. I want to. I want to rage. I want to break things and scream. And cry. But the urge is stronger to just lie on the floor and just be. Just lie there until the whole damn world makes sense again. Or I can make sense of it. I don’t do any of that. What does that even mean? I’m pretty sure it means I’m in massive denial. Or I’ve finally snapped.

Right now we don’t know what the connection is between the daily headaches/migraines and the lupus. I’m sure we’ll be digging that up and trying to connect the dots now. All I really know is that I am in pain. I hurt. I mean, I really hurt. Every day. And, yeah, I’ll say it: This sucks. I’ve also heard that lupus doesn’t travel alone but likes to bring along other autoimmune friends. I know they see inflamation in my thyroid, so let’s hope that is the only friend invited to this party.

I don’t know what else to say.

Apparently (according to the doctor and even if I am in denial) I have Lupus.

I am scared.

I am mad.

I am still so very, very much in denial.

I am in pain.

I am lonely.

I am alone.

I am angry.

I am tired.

Did I mention…. I am so scared.

And we’re back to me not knowing what to say.

Oh, I have one more:



19 thoughts on “Living la vida lupus

  1. I’m glad you know what’s causing your pain – but I’m not glad you have such a horrific diagnosis. Take care, my friend. I’m out here in the blogoverse wishing I could give you a (light, not painful) hug.

  2. I just happened to stumble upon your article about Lupus. I have had Lupus since at 17 and I am now 44. I’ve been through a lot and I mean a lot. I now even have Scleroderma too! yippee! NOT! Anyhow, if you want to talk Lupus and headaches and such after you are out of denial, shoot me an e-mail. I also get migraines with my Lupus so I know how bad those can be and I sure know what it feels like to hurt all over almost every day. Good news is, I’m still here and fighting! God Bless you and I will be praying for you to feel better. Jennifer

  3. Well, that is super sucky. And yet…there must be a teeny bit of relief in having a reason for the pain? Praying for effective lupus treatments that keep your symptoms under control. And something to make you laugh every day, ‘cuz it really does make life bearable!

  4. I’m sorry this is happening, but glad you’ve got it out there, now because we care about you! It’s great that your providers are on it and it’s because you’ve been persistent. I hope they can get down to the detailed business of managing your symptoms to help you feel better soon!

  5. Hi, just wanted to leave a note to wish you energy and patience and peace. My father had lupus. It took them so long to figure it out, and then it was hard for us to understand. You are very brave to share your journey and spread awareness of the disease. Keep fighting!

  6. Bless Lupus’ heart. It doesn’t know whose body it’s messing with.

    I hope you will use us – this online network of friends who love and care about you – and reach out when you need us. Anytime. Any day. Or night. We are here to listen and hold your virtual hand. Complain, vent, cry, scream, whatever. We’re here.

  7. You are not alone. And you can whip it into remission. My mom has been living with the lupus diagnosis for the last 30 years. She is doing really well. There were some very rough years but there have been many awesome ones too. She is 70 and going strong. I too have many symptoms of lupus but no diagnosis yet. I found that my constant pain was decreased significantly when I gave up gluten. Enough so that I’ve been gluten free for 3 years. Anyway, ever want to talk about it, I’m here.

  8. I wish I could say I was surprised. I wish I could say I was hoarding a fast cure. I am not on either count. But, of course, I have lots of love for you.

  9. I am sorry you are going through this. You are not alone. I am praying for you and sending lots of love and hugs you way. xoxo

  10. I am so sorry for this news. I can’t imagine. I can tell you that an ex neighbor of mine had lived with lupus and it was in remission for 9 years when I knew her. Drugs are miracle workers. WIshing you this, that the Dr’s find something that will work. Prayers to you, friend. xo

  11. Lupus doesn’t know who it’s freaking with. I’m glad you’re able to get the words out and call it Lupus for what it is: a bitch in need of a throat punch. You are not alone. Love you, my friend.

  12. I’ve had lupus since 2007. Yes, it’s really scary. Yes, you feel al those things you feel. But all those things your reading on line, doesn’t mean it will be you. I take my meds and I’m honestly okay. The dr just cut back my meds and thinks in five years I might be med free.

    Hang in there, find a doc you trust. It might not be as bad as you think.

  13. Noooooooooooooooooooooo…. 🙁

    Jenn, I’m so sorry. Glad that you have a diagnosis… gutted that *that’s* the diagnosis. Here for you.

  14. Lupus is a horrible, awful condition and I think it is way more common than people think, because you are not the only friend of mine who lives with it. But the diagnosis does not automatically mean that all the scary things that could happen will happen. I have friends whose lupus has been whipped into remission and has remained that way for years. I pray that the diagnosis means your doctors will find a way to end your pain so you can manage your lupus as well.

  15. Well, that stinks. I’m so sorry you are suffering and that you got such a sucky diagnosis.

    I’m sure you know that Erin, Queen of Spain, has lupus as well. Maybe she can help you with advice and a shoulder from the perspective of someone who has been dealing with this for a few years.

  16. I still love you, and you’re still number one. And I’m only a phone call away. I’m so sorry you are going through this, my friend. XOXOXOXOXO

    1. Thank you, my friend. YOU are still number one and I still love you. I’m going to have to start phone stalking you. xoxo

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