The Vest Family Needs Your Help- As Do 1.5 Million Others

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

Comments

  1. andrea byrski says:

    Erin, Aaron,Jack and Hala,

    I cant donate much.but would love to give something, as you are also.speaking on my and my families behalf. I am a fighter of a duel diagnosed auto immune diesease. I have graves and lupus. With this i have flares of underlying symptoms RA, raynauds, just to name a few. I also am uninsured so most of my treatments come in the form of clinical trials or out of pocket. This disease has caused hardship.of my children, parents and is one of reasons for the breakup of my marriage. Again i cant do.much but would like to.give some, just tell me where!

  2. There is a widget at the end of this blog post. If it doesn’t load, you can send directly via paypal – http://paypal.com and you send it to queenofspainblog@yahoo.com – I hope to tell stories like yours Andrea! That’s the whole idea!

  3. andrea byrski says:

    Thank yoy and ill send it out tommorow….. I draw my stength from you!

  4. You continue to inspire me everyday…I sent you what I could…your friend in Montreal, Canada xx

  5. FYI I updated our goal. Ticket prices went up :(

  6. I expect #kfpkicksshots. xx

  7. You are amazing. Thank you for doing this. My mom was finally diagnosed after years of illness when my sisters an I were still very young. It was so scary then – and still is now. Thank you a million times for speaking on behalf of all of the families affected by this scary disease.

  8. Very good info. Lucky me I found your site by accident (stumbleupon).
    I’ve book-marked it for later!

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