I almost wish I had cancer instead of Lupus.

It’s one of the many reasons my family is going to Washington DC in June. Because unlike Angelina Jolie I can’t make a brave decision (which I applaud wholeheartedly) and then simply have only scars and memories left to show my children.

I know it’s a terrible thing to say…to wish I had a disease that kills the people I love and that kills so many. But it also can be defeated. It can be prevented. It has billions in research and deserves billions more. And yes, there is a sick part of me that wishes I had to fight cancer and were given that fighting chance so I could kick its ass and then move on with my life, or lose my battle with dignity.

Instead I have a chronic illness. Like cancer it has no cure. Unlike cancer, it can not be defeated…it can only be ‘controlled.’

1.5 million Americans suffers as I do…and those are just the ones who are diagnosed. Because Lupus affects a majority of women of color there is tremendous fear that many go undiagnosed and go without medication to help them function.

Without the pills and shots I take daily, and the infusions I get bi-weekly, there is no way I could function. So in a way, you can add ‘double mastectomy’ to the list of things on my Angelina Jolie jealousy list. What I wouldn’t give to go through several surgeries to be rid of this fear and pain and ache and disorder. I’m jealous I had no choice in losing my colon, gall bladder, ovaries, uterus, cervix, or in the stroke I had thanks to Lupus. I’m jealous I can’t just have a surgery and a few rounds of chemo and radiation instead of my bi-weekly rounds and the constant fear of another organ in danger just around the corner.

I know it’s not fair to compare diseases. Or to play the ‘who has it worse’ game. I know, compared to so many, I would lose hands down. But I can’t help wishing I could knock the crap out of the ‘chronic’ part of auto-immune disorders and fight a brave fight and then move ON. Just let me win or lose already. Just let there be a finish line.

Lawmakers need to know Lupus isn’t like many of the illnesses people lobby for when they come to the Hill. Sure, we need research money like any other. However, what I want Congress and the Administration to know is our fight never ends. The children always are in fear of when Mommy will go back to the hospital. The story Angelina Jolie told of her partner, Brad Pitt, being by her side and there even being jokes…believe me, after hospital stay #50000000 you are lucky if your hand is held between arrangements being made on who will take the kids to school and what can be made for dinner between doses of hard-core drugs from the nurse.

Marriages have crumbled under the strain of Lupus. Children require therapy because they have to learn to incorporate ‘Mom is always sick’ into their everyday lives. So much so that I hesitate to turn on the news tomorrow morning, knowing Ms. Jolie will be on every station here in Los Angeles and it will inevitably lead to my kids asking ‘can’t they just cut the Lupus out of you, Mom?’

And I will have to hide in the shower, again, to cry. And I will explain, again, that no… no… they can’t just get rid of Mom’s Lupus but they can keep it under control and no, no, it can’t just be cut out, but maybe someday they will come up with a drug or a vaccine or even a cure.

If we are lucky, they will come up with a cure for Lupus and cancer, then maybe no more children will have to ask their Mommies about scars and partners will always laugh while we patients can finally rest, knowing the fight is over.

I think that is the sort of Hollywood happy ending we can all get behind.

Friday is Put on Purple for Lupus Day. Do me a favor and wear purple. And thank you to everyone who donated to help get us to DC. I’m happy to report we’ve purchased our plane tickets. We will do all we can to represent you proudly.

It was just after BlogHer ’09 when I had to stay in my room and invite people over because going out was too hard, and I landed in the hospital for the first time due to Lupus.

It was scary. We didn’t know what was wrong. And it took three surgeries, the loss of most of my colon, my entire gall bladder, my uterus, both ovaries, my cervix, and a stroke before we realized we were dealing with an auto-immune disorder. A really nasty auto-immune disorder called Lupus.

I weighed about 119lbs back then. The doctors piled on the medication. My children were so scared. My husband is still scared. I remain on steroids to keep the inflammation from attacking my organs and every few months I battle something new. Not too long ago it was vasculitis. Just a few weeks ago it was a kidney infection. Lupus does not give up, but as luck would have it…I don’t give up either.

Which is why I need your help. Chronic illness (Lupus is one of many) changes your life forever. It means your family has to adapt. It means your body takes pill after pill after pill. It means the UBER-dose of steroids my first doctor put me on now has me in plus sized clothing and I am much more uncomfortable carrying extra weight and all the pain that comes with this disease.

But I am just ONE of the estimated 1.5 million Americans dealing with Lupus. And I have it easy. No, I can’t work (yet) but I can travel and get my kids back and forth to school. I’m well enough to drive myself to IV infusion treatment. And most of the time I can even cook dinner and do a bit of laundry. It’s not a ton, but it’s more than many with this auto-immune disorder can manage. Some of us can’t get out of bed. There have been plenty of times that someone was me. You see, you never know when it might be a good day or a bad day. And that means my husband has had to do everything around here, plus work a full day, and even clean up after I’ve been sick because I can barely lift my head off the pillow.

But now there is something I can do about it. I can help others and I can help my family, but I need you to help me get there.

I want our nation’s lawmakers, the ones with the power to divert funds for research, to know what it’s like to be someone with an auto-immune disorder. I want them to meet my family, and to hear first hand from my children what happens when Mom can’t drive carpool, or make their lunches, or go on their field trip, or volunteer in their classes, or even help them take a bath…all because she’s sick. And I especially want them to hear from my husband, my caretaker, what it’s like to shoulder the responsibility of an entire household and then some when normal families just worry about getting back and forth to work and asking ‘what’s for dinner’ when the day is done.

June 24th and 25th is Lupus Advocacy Day in Washington DC and the Vest family has some important people to talk to…but we need help getting there. We’ve got awesome friends who have opened their home so we have a place to stay, we just need a few airline tickets.

If you could find it in your heart to donate just a few dollars to help us get to DC, I promise you we’ll do you proud. I can’t tell you everything that we have planned just yet,  I can only say Aaron and the kids and I will be telling our story to some important people who really can make a difference in the lives of millions.

Help us get there. Help us make a difference. Help us give a voice to all those families who struggle day-in and day-out with this horrible disorder and all the things it does to screw up the lives of so many.

Thank you.

Erin, Aaron, Jack, and Hala

Yesterday I was sent to UCLA to be poked and prodded and peered at.

I’m a modern marvel to be studied.

I came home feeling emotionally spent, tired of my life revolving around treatment plans and drugs. But also thankful I had come far enough to be able to take myself to the appointment and to be so far removed from the threat of ‘scary’ illness no one ‘had’ to come with me to just hold my hand.

But maybe they should have, just to keep my hands off of other things. Because despite my antibacterial lotion and my constant hand washing, I picked up a stomach bug and spent the night enjoying the company of the nearby toilet.

After a few hours sleep I woke up feeling much better, but not well enough to head to my treatment. I needed some rest, some tea, and maybe a little toast. I also got some much-needed perspective.

I got a stomach bug and it didn’t land me in the hospital.

I got a stomach bug and it didn’t land me nearly comatose and in need of my husband’s help.

I got a stomach bug and it only lasted through the night, not extra hours or days which usually happens to me when I get an ordinary virus.

I got a stomach bug and like a nearly normal person I could function during and after.

With my immune system there wasn’t much I could have done to avoid getting sick. But when there is something I can do, or you can do, it’s a no brainer. In fact, in some cases I count on you to help me remain healthy. Because this time I was lucky. It was a stomach bug that my body handled. But it won’t always be so easy.

The last time the family was hit with the flu everyone had it for about 24 hours. I had it for a good 72 hours and was watched over by my brother. He held vigil by my bedside as I moaned and sweated the evil illness out of me. Even when I do my best to protect my fragile immune system, bugs get through. I then ended up admitted to the hospital as doctors managed my pain and dehydration, my labwork showing influenza A in my system.

That’s where you come in. That’s where herd immunity comes in. That’s where vaccinations matter. Every type- from a simple flu shot to chicken pox to whopping cough and measles, mumps and rubella.

Liz over at Mom101 has a great reminder as to why we need immunizations and why, here in the states, we take them for granted. You can also contact your Congressperson to ask them to make global vaccinations a priority. No, they wouldn’t have stopped me from getting that stomach bug yesterday, but they do save the lives of millions worldwide who contract many different diseases that can be easily contained if only everyone participated or could be immunized.

As someone with a suppressed immune system I am begging you to take vaccines seriously and to join the effort. Do not take modern science for granted. Remember why we need them and why people like me need you to get them.

I get asked A LOT what it is like to live with Lupus.

How does it feel? What does it mean when I can’t fly or I can’t walk an amusement park or a mall (why not?) – or why it hurts so much more in the morning or why some drugs seem to work and others don’t. Why some weeks seem great and you are near remission and then suddenly you are back in the hospital…you get the idea.

So I thought every so often I would do my best to walk you through one little special something* I am dealing with physically.  Teach you, show you, do what I can to share my own unique experience in the hopes it might help someone else. Or, at the very least, help others know they are not the only ones out there suffering and dealing with this crap.

Today I thought I’d tackle the reason we couldn’t have Christmas in North Carolina as planned. It’s a well-known ‘thing’ that auto-immune diseases tend to flare up at the worst possible moments. No really. It’s some odd, scientific, auto-immune fact. As you can imagine, our Christmas party was a bit ruined. Cousins were let down and everyone had to just shrug and say things like ‘well, that’s just how it goes.’

So how DID it go THIS time around (because trust me, this is just one of a thousand scenarios)?

Vasculitis.

One of the many reasons I couldn’t (and still can not) get on a plane is because both of my legs are suffering from this ailment along with a host of a million other things Vasculitis brings.

So what happens? With me my feet and legs basically swell up so badly I get bruises, red stretch marks, and my skin actually breaks and I bleed. Yes, it’s THAT bad. Here, let me show you:

Keep in mind I took this photo this week, well after the really nasty part had subsided around Christmas Day.

My particular auto-immune issues cause inflammation ALL OVER my body. It’s been in my gut, on my brain, my spine, that whole reproductive area that is now gone…anywhere and everywhere. Kidneys, liver, and of course the biggest organ of all… my skin.

My doctor has never told me I ‘couldn’t’ go anywhere due to my disability because he firmly believes the emotional and mental lift from being able to occasionally see family or friends helps me more than any drug and outweighs the risk. That is until now.

He said if I were to get on a plane with these issues, he would be basically writing me a prescription for a blood clot.

Those are bad.

I was told to put my feet up, stay off my feet, and to basically ‘rest’ as best I could (I’m sorry but I really hate that…I mean ALL I DO IS REST DAMMIT) while making sure Santa and his elves had fun.

We’re now into January and my ankles and legs are better, but not entirely recovered. Ok so they look like tree stumps with bruises and red splotches. I’m such a sexy beast.

But hey, I can walk on them now…where as before it HURT to go up and down stairs, make myself  a cup of tea, shower, you know…move. Yes, things are much better. But I would recommend you steer clear of Vasculitis if you can.

That being said, it just sort of comes along with the auto-immune menu of love…and now you know a bit more about my daily life.

*that special something could be ANYTHING related to auto-immune information. I am not a doctor, I do not claim to know a damn thing about any of this other than WHAT I AM EXPERIENCING – so please, do not take anything I say as health advice, or even slightly competent advice…talk to YOUR doctor, talk to a licensed medical professional…this is just ME and if there is one thing I have learned with my illness, it’s that I am not normal.