We Have Work To Do: National Lupus Advocacy Summit 2013

My hands are a bit swollen tonight. Might be the heat. Probably is the arthritis. More than likely it’s a combination of the heat and Reynaud’s and the steroids reacting to the total nerve of my doing one load of laundry- WITH the children’s and my husband’s help.

They carried. I stuffed in the clothes. Emptied the clothes. They carried. I sat and folded. They carried.

For this I get swollen hands.

Thanks Lupus!

It’s just one of the little things. One of the tiny, little things I deal with daily and try my damnedest not to complain about because I can sit and fold. And as most people would say…I don’t look that sick.

It is for that reason, exactly, that I’m doing the laundry. So it can be packed into a suitcase and my family and I can fly to Washington, DC on Friday.

Why Friday? Because on Monday and Tuesday we hope to talk to some important people about our life. About how I don’t really look all that sick, but how life isn’t exactly normal around here. How I need help with the laundry, the dishes, and even need help raising my arms to brush my hair when days are bad.

Why Friday again you say? Because I can’t leave the day before, like most people. If I am going to fly somewhere I need several days to recover before being strong enough or comfortable enough to take on another task, like meeting with those very important people. So even though we may not tell our story until Tuesday, we have to leave the Friday beforehand.

These are small things though. So small. They are nothing compared to what we’ve been through and they are nothing compared to what others go through.

I’m lucky. My family is lucky.

Way to go @detroitredwings!!!!

You see, when I was finally diagnosed with SLE or Systemic lupus erythematosus (along with a host of other auto-immune disorders like fibromyalgia and rheumatoid arthritis and Sjögren’s syndrome and CIDP and Reynaud and unspecified connective tissue disorder and neuropathy and so on and so forth) we had family to support us. I had benefits through my supportive employer and we had decent savings and credit to help us through.

We still ended up nearly losing our home. We still ended up in crushing medical debt. We are still battling with Social Security Disability Benefits. And my private disability benefits through my employer continue to put me through second and third and fourth opinions and tests- the latest of which will include a neuropsychological evaluation to make sure it’s not all in my head or that I’m not too smart or too stupid or insane or sane, it’s not very clear why they are putting me through this all day, sit down test. Mind you this is on top of the stack of lab work they already have in their possession documenting my colon resection, my gall bladder removal, my stroke, my total hysterectomy, and of course the continued treatment that includes weekly inflammation tests, bi-weekly IV infusions (three days a week, 4-6 hours per day) and the BIG infusion that comes twice a month every four months that knocks my immune system so low I’ve even gotten a scrape INFECTED just after the IV.

Did I mention I AM ONE OF THE LUCKY ONES? We have the good insurance. We have the support. We have the roof still over our heads. I am able to charge our deductible so I can receive the treatment that so many can not afford. Not even with their insurance.

That’s why we have to go to DC. That’s why my 10-year old will wear a suit for the first time in his life, and my eight-year old will talk about Lupus to adults with more authority than any eight-year old has a right.

That’s why my husband will fidget with his top button under his tie…purple, for Lupus awareness…and try to keep it buttoned for as long as possible while also trying to explain just how shitty it is to be a caregiver to an ill wife.

That’s why I will humble myself and see people I haven’t seen in years, with my moon-face from the steroids and my weight gain from the steroids and tell them why ‘ObamaCare’ must remain in place or even the ‘lucky’ families like mine will lose it all for sure.

My doctor agreed a flight is not the best thing for my body, but so long as we are careful, the message we are bringing to DC is well worth the risk.

While we will be there, officially, for the National Lupus Advocacy Summit on June 24th-25th, you don’t have to have Lupus to have a story. I want to bring YOUR story to DC with us. We’re not just going to tell our ‘lucky’ story, because we know there are so many of you that don’t have it as well as we do. Or have it differently. We want to tell MANY stories. Ours and yours.

Share your story with me in the comments of this post. Let my family be your voice. Let us tell them of how you can’t get coverage, of how many times you have been turned down. Let us tell them about how you split pills because you still can’t afford your meds. Let us tell them about how just because you do not look sick, it doesn’t mean you are not suffering. Let us tell them about how your kids are handling it all. Your partner. Your parents, your friends, your employer.

They might even read your words directly.

This is your chance. Help us to help you. Let’s all make a difference together.

I want to type more. There is so much more I want to say. But it will have to wait because my hands remain swollen and I’m tired and I need to rest up.

We have work to do.

Comments are open. Use them. Spread this post far and wide to every one you know who struggles with chronic illness and needs someone, anyone, to tell their story.



  1. Brandy Sweeney says:

    I am at the beginning of this journey and my first thought was “How much is this going to set my family back?” Really & truly. I don’t have a story yet, and I hope that it is a boring one… I hope…

  2. From a facebook thread that had SO MUCH ON IT:


    So many stories on this thread alone! Thank you everyone!

  3. I was Dx with Lupus over 20 years ago and Rheumatoid Arthritis over 30 years ago and it has been one hell of a ride/crawl.I have never had insurance and was on medicaid and SSI at one time but after living overseas for 10 years I moved back to the USA. I have no insurance and have been turned down by 40+ insurance companies with the reason being “reason for denial is a dx of Lupus” It is so hard to know a medicine will give you some quality of life back but you cannot afford it. I need a electric scooter but how do you get those with out insurance. You don’t.
    I am lucky though my parents help me with my medical bills since I do not qualify for medicaid or SSI now even though I am in a wheelchair most of the time and have a service dog( that I bought and is being trained as I can afford it).. but I do not know how much longer they can as they are 75 and 80 years old.
    We have no one around to help since we are both only children and friends well they disappear real fast when you are sick a lot.
    We need to find a cure or a medicine that people can afford. We need people to know about what we go through.
    Thank you for going and thank you to your family for being our voice
    much love my friend

  4. In the hospital (again) and am trying to find the strength to write. I will and I will post it here, by tomorrow. Thank you for sharing our stories and for giving us a voice! You ROCK!

  5. I don’t have Lupus, but I am chronically ill with Ehlers-Danlos Syndrome and related dysautonomiae. Much of my story — including disability leave and dropped health insurance — is on my blog. Thank you for sharing our stories, Erin! You’re one brave lady!

  6. I have been with someone who has SLE and RA for almost 12 years now.
    Not being able to get the care that she needs is hard to take, sudden changes in mobility or reactions to medicine or simply not able to afford it or it has not been discovered yet.
    When one in the family has Lupus it is not just that person that looses the ability to function “the normal way” it impacts whole family. As being the spouse I can only help, when needed, but also see the pain and suffering that my spouse endures. The trips to doctors, I she can find some that #1 take non insured patient and #2 that we can afford. To get suggested medicine that then is outside our price range.

    Thank you for raising awareness about Lupus


  7. I posted to soon and some was left out.
    Not only do I not have insurance but finding a Dr to treat me because I don’t is tiring as well. I called every Dr around where we live and finally after 8 months and the wound care clinics help I got a Dr to treat me. I really hate having to spread my meds out so thin in order to be able to function. I am so thankful for my husband and children that are there for me.

  8. my God do i know this story. it’s mine. it’s so many others as well. i understand completely, as only someone who shares this story, this journey, can.

    i have sle/cns-sle that affects my heart, lungs, brain, bones, and connective tissue via the disease itself as well as the many secondary ones that accompany it, which for me are vasulitis and sjogren’s. and thanks to good ‘ole sle, i also deal with pylmonary fibrosis, and a rare form of a lymphatic cancer.

    i send you on your way with love, hope, and strength.

    princess tinybutt of the itty bitty titty committee

  9. Stephanie says:

    I have “mild” lupus — whatever that is. I was diagnosed in May 2011 after having symptoms since December 2009. I have joint pain, swelling, and weakness. When I flare, my mouth is covered in sores and it’s hard to eat, drink, or talk. I was also diagnosed with fibromyalgia, which makes it painful for my children (ages 7 and 9) to even hug me at times.

    It’s cost us monetarily in the number of nights we’ve had to have takeout, because I can’t make it to the store. If I do make it to the store, there’s no way I’m going to have the energy to cook whatever I’ve bought. It took three doctors to finally diagnose me, and although I love my rheumatologist, she doesn’t take insurance so we pay out of pocket. I am in college (although I’m a returning student in my thirties) and I have to carry my backpack on a rollator. The college didn’t take disabilities into consideration when designing a detour for on-campus construction, so it’s over a mile to walk to the library from where most of my classes are if you’re using a mobility aide. If you’re not, it’s up one hill and down another.

    Insurance does a pretty good job of covering my drugs, but I am lucky enough to be married to a government employee and have the same coverage as Congress.

  10. I don’t have a definitive diagnosis yet, but all signs point to an autoimmune disease. I’ve had Chronic Fatigue Syndrome for over 8 years, possibly tracing back to when I had mono in 1999 and getting progressively worse as time went on. After my Worst Flareup Ever started on May 7 – and still going strong – I went back to my primary care doctor to get the help I did not get when I talked to her nurse practitioner five or six years ago. She said, “This should not be happening to you. You’re too young to need assistance to walk. We’ll get to the bottom of this.”

    She ordered 20 blood tests on one lab slip. I got the explanation of benefits from my insurance company: it would have cost us over $2,200 without insurance. With their negotiated rates, it ended up costing us “only” $220. That doesn’t count the $135 for the office visit. Thankfully, my husband’s employer is also generous enough to cover the $7,500 deductible we have so that money is not out of pocket. If it was, this road to diagnosis would probably not be able to happen. It already costs about $350 a month for my psychiatrist visits to deal with my anxiety and depression. (Mentally ill since 2001 and counting!) My psychiatric meds cost about $200 a month. Without the physical illness thrown in, we’re already at a cost of treatment of $6,600 annually. Even the daily Epsom salt baths that I’ve found provide my muscles with temporary relief end up running upwards of $160 a year.

    And now all of my physical symptoms have been dialed up past 11. The soul-crushing fatigue that has been treated well enough with meds for me to function over the past few years has returned. Though I’d never been bedridden by CFS before, I’ve found myself recently so exhausted and weak that sitting in my chair at my laptop was too tiring. I had to lie in bed, unable to hold a book open to read or play Words with Friends on my phone. My skin hurts sometimes, so tender to the touch that it can hurt to lie down or hug my husband and son. My muscles and joints have hurt more than ever, and they are so weak. Mostly in my legs, but nothing is sacred. I need a cane to walk most days. People see me with the cane and they look at me like I have three heads. Drivers in parking lots glare at me as I make my way through the crosswalk at a slower pace than my 80-year-old grandma. I’ve started using my cane even when I’m not technically weak enough to need it for support, but so that other people will know at a glance that I’m not well even though I look fine otherwise. I can’t imagine what it will be like if I end up with handicap tags.

    My shoulders, neck, back, wrists, fingers, feet… they’re all fair game for agony. My so-called hives, which don’t usually itch, have started itching and burning more often, the rash that comes and goes every day. Maybe it’s a discoid lupus rash, or maybe it’s not. But my PCP doesn’t think the “chronic urticaria” diagnosis I’ve held for 25 years is accurate.

    It might be lupus. It might be RA. It might be MS. Maybe it’s more than one. I’m still waiting for my first appointment with the rheumatologist to see what my next steps are for testing. As much as I identify with the CFS community and it would be hard to “leave” it, my worst fear at this point is that they won’t find a more definitive diagnosis, and I’ll be stuck trying to treat this symptomatically.

    I hate being disabled. I hate that my husband has to come home from his full-time job to do all of the cooking, as much housework as he can manage, and take care of both our son and ME. I’m lucky enough that I can still earn my living with client work. I’m lucky enough I have a team of writers I can trust, because my cognitive symptoms allow me to be a capable editor most of the time, but not so much with creating something from scratch. If my clients left me, though, I don’t have the energy or the know-how to find new ones; everyone has come to me via referral. I would have to go on disability if I lost my current sources of income. And we’d lose money we need to pay bills. My income would be effectively halved. (I checked my Social Security statement.) We couldn’t live on that. Not here.

    And if Tom ever lost his job? We’d need the guarantee that I couldn’t be denied insurance coverage for a pre-existing condition.

    It’s funny though. Now that I’m trying to get a new diagnosis, people who thought I was exaggerating my state of health when it was “just” CFS are like OMG when I tell them what the doctors have suggested as potential culprits. Lupus, MS, and RA are SERIOUS. Apparently CFS wasn’t, at least not to them.

    All I want is to feel better. I want the tools to get there. I want to not be such a burden on my family. It’s hard with the resources we have, with insurance coverage… it would be impossible without that.

  11. Oh, and I left out my brother’s story! He’s had Type 1 diabetes since he was 9. They’ll give free needles to drug users at a clinic, but diabetics have to pay through the nose for syringes for their life-saving insulin injections. Plus the exorbitant cost of test strips for the glucometers, the insulin itself, etc. His diabetes was very poorly managed for years because he couldn’t get insurance coverage at any of his jobs.

    A few years ago, what he had passed off as a hangover turned out to be ketoacidosis. His blood sugar level was well over 1,000 by the time my mom drove him to the ER. (Thank God he and his wife were living with my parents at the time, or else he would have died home alone in Georgia when his wife went to work that day.) The ER doc said he was an hour away from slipping into a diabetic coma and probably never waking again.

    The hospital bills ran tens of thousands of dollars. They didn’t have the money to pay it. They had to set up payment plans.

    They eventually moved back down to Georgia for a job. They bought a house. They were slowly paying off the crushing medical debt. Then his job tanked. He was working for a realty agency when the housing market crashed. He worked on commission, and though he worked full time for months, he wasn’t getting paid for any of it when deal after deal fell through because the buyers couldn’t get financed. Debt collectors started calling. Now he had all the medical debt plus the debt for all of the other bills he couldn’t pay. The bank illegally foreclosed on their house after sending back his check for $4,500 the same week they promised they wouldn’t foreclose if they got the money. Somehow the $1,600 settlement check they just got doesn’t make up for that.

    They had to move back up here, and they have been living with my parents since their daughter was a baby. He’s still paying off his medical debt from years ago. Oh, and Ford Credit lost him his job as a financial advisor when, again, they’d promised they wouldn’t post a judgment against him over the money they claim he owed on a vehicle he hadn’t been driving for years after he’d paid the purchase price off but not all the interest. They cost him the job that would have helped him pay them the money they were trying to extort from him. (Never buy Ford.)

    He only recently got health insurance again. He almost died from poorly managed diabetes, but he was uninsured for years, with a young child as a dependent, because he could not get coverage as a diabetic.


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