I was on the elliptical at the gym on Friday when the phone rang, and even though the gym has a no cell phone policy I answered it because I knew who it was. The woman next to me hissed, "you can't have phones in here" just when I heard, "Jodi, it's Dr. _____. Your tests results are back." I heard her inhale and before she even said it I knew what is coming. I left the gym and stood outside, waiting for the words.
"It's not Lyme, it's Lupus." Lupus, a chronic, auto immune, life long condition. And I knew. I knew when it was first suggested to me, even when I was walking around like I don't have Lupus, you people are crazy.
Too many things just made sense, and explained things about me doctors had never been able to explain. The anemia, the migraines that never responded to any medication, the fact that my hands and feet got tingly and fell asleep even if I was using them, and the oddest of all, Lupus pregnancies tend to end in pre-eclampsia which mine did with no explanation. And, we can't forget the incredibly swollen hands and feet and the weird rash that started me down this road in the first place.
So, Lupus. And everyone around me is expecting me to freak out. Cry, throw things, maybe just react, but I'm remarkably calm. This does not change anything, just gives a name to how I feel. Doug thinks I'm in a deep, deep denial.
I promise you right now, this will not become a sickness blog. Not that there is anything wrong with that, but I will not wallow in this. I will not be sick for the rest of my life. I'm 33, a wife, a mother, an attorney, and active. I will be healthy. I will have a life. I believe the mind is powerful. I believe I can refuse to be sick.
And hey, people with Lupus tend to have unexplained weight loss. I'm waiting for that. I better get something out of this.
Monday, October 20, 2008
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41 comments:
Oh dammit.
You're right. You will be busy and active and a mom and a lawyer and damn cool blogger and friend. This is also the attitude of people for whom these things become true so you are way far there already.
You're right. You will be busy and active and a mom and a lawyer and damn cool blogger and friend. This is also the attitude of people for whom these things become true so you are way far there already.
I'm with Beth. Dammit. Please let us know if you need anything!
Crap. I know we talked about that last week. But I know you and you won't let this slow you down.
xoxo
This is frustrating and sad news, no doubt. But in the brief time I have known you I feel assured that you will kick its sorry ass. Suck it, lupus.
You know, it totally sucks but I agree with you. It just gives a name to the way you have been feeling all along. As much as it stinks it must be somewhat of a relief just to know why you've been feeling so shitty for such a long time.
oh, I'm sorry.
Well damn. But at least now you know. Hang in there.
I am so sorry. Your attitude is kick ass though! Is it systemic or non-systemic? My assistant has non-systemic lupus.
oh honey ... that's a bummer for sure. i know you are being all stoic now but it must be a tough thing to grasp. i'm sure you're glad to have an answer at least.
let me know if you need to talk or need help with anything. i'm good with medical stuff and wine drinking if you just wanna chat sometime over dinner.
also: weight loss?! honey! you look amazing. don't worry about it so much, you are fit (hello 2 hours of exercise!), attractive and energetic, your personality is electric, did you see how many people wanted to be around you at BlogHer? you're an amazing gal, what's a few extra lbs?
I'm sorry about this, Jodi, but it sounds like you really have the right attitude to fight back!
Jodi,
I'm sorry! You have (and have had) a great attitude about this, a fighting attitude. I will definitely keep you in my thoughts.
You are right-you can refuse to be sick. Just stay positive. Just don't be so hard on yourself that you feel worse, ya know?
You don't have to cry when you get bad news. It doesn't mean you are denial. You are being calm b/c you are an adult, and you expected it in a way.
Thank you for sharing. And by all means, please blog about it. We need more education about it.
That sucks! But I'm sure there is a part of you that is relieved that you have a name.
But good for you not wallowing in it. There is no need. Now you are just awesome, plus Lupus. Like orange juice plus calcium. :)
I'm really proud of how you're handling this. I totally understand though, the symptoms you've already come to terms with, having a name for it is actually relieving. Sounds like you have a good doctor, though? That's important.
Also, I want to punch that woman at the gym. Can't people give other people the benefit of the doubt sometimes?
Ugh. I'm still sorry, but I know what you mean about a diagnosis sort of gives you some answers. And it gives you tools for where to go from here. You strike me as a strong woman. You'll be okay.
And even if it is denial? Denial can be a very happy place.
You're a fighter, no doubt, so I have faith that you will be well and happy. :-)
I have a friend with Lupus, and she says mostly it doesn't affect her life. She only has flare-ups a couple of times a year, at the most. There shouldn't be any exercise restrictions with this though, right?
Maybe you're so calm about it because subconsiously you already knew.
Here's to hoping you get the unexplained weight loss!
Jodi,
You are strong and will stay that way, I'm sure. But there will be times where your body wins out over your mind*, especially if you push too hard. So keep your spirit, summon all your energy, but respect that little voice inside you when it asks you to slow down or take a nap--it will keep you going stronger in the long run. And really, now you have an legitmate excuse for a nap whenever you need one. In fact, maybe that unexplained weight loss if just a few naps away!
*I say this as an active mom with a chronic illness of 5+ years.
I just met you via twitter during BlogHerDC (which I couldn't attend). It is good to have a name for a health condition. That's all it is, a condition of health, and you are well on your way to defining it, not letting it define you - you go lady!
Finding a healthy balance is key, remembering to slow down and breathe, if things come at you. And keeping that positive attitude is so important. It lowers stress hormones in your body which wreak all sorts of havoc in your body. Much of the mental stress we put ourselves thru is just mental gymnastics and ties us up in knots, but does nothing Good for us. Taking action and replacing negative stuff with positive thoughts actually has power, though it sounds fru fru.
I would suggest a tiny shift in your mantra, not "I will be", but
"I AM a strong, vibrant woman, with a great life!"
I know it to be true - it comes through in your writing.
Cathy Larkin
http://twitter.com/CathyWebSavvyPR
I like what Kristabella said, just awesome, plus Lupus. I've got this vision in my head of this great 60's era ad, done in that dot print: "JODI: Effervescent and Ebullient" and see you all sparkly, with a yellow star and "Now with Lupus!" up at the top. New blog design, perhaps?
Seriously, you're still you. And you're a fighter. So it's not as bad as it could be. But all the same, make sure you tell me if you need anything, and we'll make it happen.
Jodi - I'm so sorry to hear the news. You're in my thoughts!
I think you have a great attitude and hope you kick its ass! One of my good friends from college was diagnosed with Lupus and is doing really well. I can put you in touch with her if you'd like. Big hugs!!!!
This really sucks. I'm with the others, though -- your attitude is great, and it will help you get through whatever gets thrown at you. Hugs....
Chronic illness suck. But you're strong and have lots support. And you're right - the label isn't necesarily bad - it gives a name to something you knew wasn't right. And now with that name, you can treat it better.
well at least they found out what it is.
you now know what it is.
and now you can stop all the medical mystery circus.
you're a strong woman.
just hang in there, baby!
You've got a great attitude, Jodi.
Did Lupus not get the memo that none of my Mamapop Betches were to be harmed....EVER!?
babe - you know i got your back cuz you've always had mine - much mush and stay strong!
You've got such an amazing attitude - I do think that makes all the difference in the world, when things like this happen. Now you don't have the unknown to worry about - and you have lots of support. I'm here for you!!
Hugs.
Wow. I am sorry that you are facing this, but I am SO impressed with your attitude.
You CAN do this. And we'll be right here, behind you and beside you while you do it, cheering you on.
If there is anything we (I) can do to help you, please don't hesitate to ask.
Great title to the post and so true how fast things can change. Hang in there, your doing great so far just so you know :)
Oh I'm sorry, Jodi. I am glad though that you know what it is.
My great-aunt with lupus just celebrated her 77th birthday. She's always been skinny too....
Don't the test results watch House? It's never lupus! But as everyone said, you have a great attitude and lupus can suck it.
That sucks. I had to catch my breath when I started reading. That just really sucks. You seem to be keeping a positive attitude. I can totally understand being somewhat relieved to at least have a definite answers to all you've been feeling. What happens next?
I'm sorry, that sucks doesn't really cut it, but I am sorry and that really sucks. You are in my thoughts.
My life changed that quickly about 7 years ago, when the dr. said "multiple sclerosis," instead of "lupus." Also auto immune, chronic. Luckily I had one "episode" then and nothing sense. Which has added to my denial over the year, and me searching for a dr. who will contradict the diagnosis. But I'm starting to accept. Taking my medicine, as much as I hate it. I am crazy vigilant about my kids' and husband's health, grilling doctors, etc. But I want to ignore my own health! It's tough, but you sound like you've got the right attitude. You're stronger than any sickness, it seems!
*Also, I say all this as a full time working mom to 2 beautiful girls, who rarely has time to sit around and fret about MS. I'm guessing you're the same way.
That sentence should read, "Luckily I had one "episode" then and nothing since." Sorry.
Demmom-I really wished you left an email b/c I so wanted to respond to your comment. Thank you so much, and much health and happiness to you.
Jodifur: sorry I didn't leave my email. I'm still figuring out how to do this. demmom74@yahoo.com
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