Lupus Warrior


knight-4I’ve been preparing for a battle.  And I’m now ready to charge full speed into the messy underbelly of the healthcare industry.  I haven’t posted much this month but I’ve been very busy dealing with new health issues.

I’m in the process of writing directly to my insurance carrier, requesting an appeal of their decision that denied treatment for systemic lupus with intravenous immoglobulin (IVIG).  Last year, I had 3 rounds of IVIG with total remission.   This stuff is expensive (about $15,000.00 per infusion), so obviously they don’t want to shell out that kind of money on a regular basis.  Unfortunately for me, this is the only treatment option left.  All other medications have failed.

I’m sick of their bullshit denials.  This means war!

I saw my doctor a few weeks ago.  A new rash  developed on my arms, legs and chest.  It’s red, raised and bumpy on my torso, and flat on my extremities.  It’s actually layered on top of the recurrent SCLE rash that flared up in January.  The January rash was fading somewhat and then this new one took its place.  My doctor told me this new rash is small vessel vasculitis.  Currently it’s affecting my skin but he said it can progress to the kidneys, eyes and brain. I have to watch out for areas of the skin that may ulcerate.  Left untreated the skin could become gangrenous.

Fortunately it’s not summertime … yet.  Hot and humid weather makes this stuff worse.  My clothes cover most of it and even though it’s on my forearms and neck, it’s not so bad.  Makeup covers the hives on my face.  Then again, maybe I’m just used to looking at it.

The rash is everywhere on my body, but this photo pf my leg shows both types of lesions.  Some are red, flat and carpet-like.  It feels like a sunburn and is hot to the touch.

img_03912The vasculitis is small, round and dark … about the size of an eraser head.  It hurts but does not feel like a sunburn.

That’s why I’m fighting.

I’m beginning by writing the insurance company a letter.  I’m sending them photos of my skin like the one you see here, as well as others that are too gross to post.  I’m gathering published data from the National Institute of Health with evidence of  clinical trials of IVIG on patients that have systemic lupus and small vessel vasculitis and have gone into remission.  I’m also contacting the US manufacturers of IVIG.  Parmaceutical companies are interested in working with people who seek unconventional treatment (like one of their products) that has been denied by insurance carriers.  To some people, Michael Moore is a total crackpot.  When it comes to health insurance, you should watch his movie, Sicko.  His illustration of the health industry in the United States is spot on.

I’m not waiting for my kidneys to be destroyed.  I’m not waiting to go blind.  I’m not waiting to have seizures.  Nobody at the insurance company is going to cave in and give me the medical treatment I need.  I’ll have to fight for it.

Bring it on.  I’m ready.

8 responses »

  1. I think the health care system in this country is horrible and you are such a good example of “health care gone bad”. I really hope you keep up the good fight. You deserve to be well and not suffering especially if their is a remedy for your problem. You pay all this money for insurance and then the insurance company doesn’t help you. I just don’t get it. I’ll be praying for you.

  2. Ohhh, poor baby! I remember all too well how it felt having giant hives and Duhring’s Disease lesions at the same time so I feel your pain.

    Best of luck on your fight with the insurance company. Those bastids should at least see what they do to people like you. I am so sorry you have to go through all this pain and agony and then be told they won’t help.

    ((Huge HUGS!))

  3. That a girl! Keep on fighting. Their denials are pure bullshit and you deserve to be treated regardless of the cost to them. Isn’t that what insurance is about?

    My thoughts and prayers for remission are with you.

  4. I am so infuriated for you! I’m glad you are gathering yourself together for a fight but it just pisses me off because you shouldn’t have to deal with this crap – this kind of stress is exactly what can exacerbate Lupus and other autoimmune diseases. Why, oh, why can’t health care/insurance be easier to deal with? Grrrr! I’m keeping you in my thoughts and prayers. Go girl!

  5. WOW!!! I can’t believe we have to go through this to get better. I know we all have been through this and feel (literally) your pain. Take a deep breath, don’t let them beat you and i really hope things work out. FIGHT THEM and KICK their asses in the process — you deserve to have whatever medicine you need to get better. i wish we all did not have similar stories, but we do 😦 you are in my thoughts!

    Thanks Gina for the good wishes. And thanks for dropping by!

  6. I have the same rash on my legs. One leg was really bad the other just starting. The dr put me on prednasone. This is my first rash from the Lupus. I don’t know what I am in store for now. The rash itched, hurt, burnt, inflamed and swelled!

    Wow! I hope prednisone helps your rash. It didn’t help me at all. But I do know what you’re going through! Will keep you in my prayers. Stay strong!

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