Thursday, July 2, 2009

Talk about a bad way to start a day...

You shouldn't even really call it the start of a day when a headache awakes you at 4am should you? This used to be something that happened to me quite often just a few months back, but until this morning it hadn't happened in a quite a while. I guess I was overdue?

It's 11:30 now & I am finally able to slightly concentrate enough to write this. It felt like my entire skull was covered in a web of extremely painful frayed nerves. Digging my fingers in & massaging until I found the trigger points that hurt so badly & taking pain medication until I could finally fall back to sleep could only put a dent in the pain. Sleep is elusive & much desired when I get these headaches as it's the only thing that helps. I have to sleep away the pain. That's just how it goes.

Then I'm left with a foggy brain & half my day is gone before I've even started it. Nobody ever said having Lupus was fun, but does it really have to include these terrible headaches? Not to mention when they happen I get scared. It's scary that you are never really "in the clear" with Lupus. It's always lurking.

Six months ago I had a period of "irretractable headaches" occur (meaning they didn't go away for days @ a time). It was literally using up every last ounce of strength I had. A few doctors diagnosed me as having "pseudo tumor cerebri". Which means you have all the signs & symptoms of a brain tumor, but no brain tumor. I mean obviously I was glad to find out I didn't have one after all, but that whole ordeal is a scare I'll never forget.

I was @ the eye doctor because I thought I needed glasses because of all the weird things going on with my vision (that I had mentioned to all the doctors I had @ this point & they had done nothing about mind you - so I didn't think it was anything to worry about right?) . Well, during my appointment I came to realize very fast that seeing double was NOT normal. And that my vision going out in the shower like it had the other day was DEFINITELY not normal.

Well, DUH! You think?

But nobody had listened to me - the patient. I mean, why would you want to listen to the patient? They don't know anything about their own bodies! The way I was treated made me feel CRAZY & I even started doubting myself. This is not a good feeling to have when the next thing you know the optomotrist is calling the hospital and telling them they are sending you straight there to get a brain scan. Apparantly both of my optic nerves were very swollen (they actually still are - but it decreases & increases every time they take new pictures of the inside of my eye) & that this was cause for alarm.

That was scary. I've never been so scared in my life honesty. And my eyes were dilated as we left the eye doctor so the entire experience of being rushed back through the ER & into the freezing cold room where they did the scans was literally a blur. It all seems like a bad dream now honestly. The only thing I remember semi-clearly is being wheeled into the CT scan room & there being a huge rainbow sticker on the front of the machine. Before too long the ER doc on duty came in & said "Well, it's not a brain tumor!" I swear I had to stifle the urge not to say it like Swartzeneger.

I mean, where can you go but up from there, though???

And the positive thing to come out of all of that was having doctors finally take me seriously & realize SOMETHING was TRUELY wrong. It's sad that had to happen for me to be taken seriously, though.

Over the next month I was shuffled in & out of every type of doctor's office you can imagine, recommended for surgeries I chose not to have (more on that later), had more vials of blood drawn than should be legal & was stamped with a Lupus diagnosis.

It wasn't all that simple, but I'll save more for later. My hands are growing tired & achy & my mind is getting foggy. It's time to rest them both for a while.


  1. hey Erin
    I know about those damn headaches. i used to get them where i couldn't see straight- zig zags in my eyes, blurring, and at one point, my eyes just started crossing for about 3 days. i took a headband and put it over one eye so i wouldn't see double. (sexy huh?!)
    the one thing that has helped a lot with headaches for me is acupuncture.
    i also quit drinking/ eating nutrasweet around the same time as getting lots of acupuncture. i'm sure both helped, as i was really addicted to diet soda.
    wish i'd known you before - i'd have loved to have had you do my wedding hair and makeup. i'm lucky enough to now have an awesome hubby, too. but i was solo with lupus for 12 years. blech!

  2. I might have some information that may help you with the headaches; there's some of the details in my blog but it's fairly new developments that I haven't had a chance to post yet. You can email me if you like... best of luck