I think one of the more frustrating things about having a “disease” is having to deal with insurance companies.  Now, I know that anyone who ever gets sick with any thing, especially moms with kids, know how frustrating insurance issues can be.  But just imagine with me for a moment, that you are someone, really ill, I mean ill enough that doctors and medications are crucial to your life.  You have insurance, or at least you think you do, and then one day, because the insurance company makes a mistake, that they don’t want to take “credit” for, you lose that insurance.  All of your access to medications and doctors, at least semi affordable access, is denied to you.

That’s where I am right now.  I am in that chasm between no insurance and needing things refilled, doctors wondering why I haven’t been to the office more frequently to see them, and feeling very well…alone…and unsure how to handle it.

Let’s be honest here.  One woman can not take on a huge insurance company and win.  There’s just no way.  And I am sure I am not the only one going through this stuff.  I am very sure that many of you out there have had the same problem.  

So, how am I handling it you might ask????  Good question.  I am taking advantage of all those cheap generic prescription programs that you can get at places like Walmart and Safeway.  Which helps a lot with the medication part.  The doctor part is another story.  There is just no quick fix for that.  So, I am going to have to just suck it up…pay the big money…and go see my doctors.  If I want to live, at least live a productive and half way normal life, I have to have my team around me.  That team definately includes my medical proffessionals.  Without them, I wouldn’t be here.

One other little frustration, which in the scheme of things is really quite trivial.  As some of you know Lupus is affected (for a lot of us) by exposure to the sun. For me, as I have mentioned in other posts, the sun truly is my enemy.  Where I live it gets very hot.  I mean really hot.  We have had heat advisories the last 4 days and I’m sure it won’t let up till October. 

When I am in the sun, riding in the car, anywhere close to the sun….even sitting in my home by a mirror, I turn red…blotchy red.  It’s not a sun burn.  It’s a rash from the sun.  It is unattractive, and painful and just not fun.  Well, the last two days I have had people, people I don’t know, point out  this rash to me, acting as if I have been  “uncarefully” in the sun harming my skin.  The truth is that no sun screen, no amount of self tanner, or whatever, covers up this rash.  It also appears when I am stressed, when I feel ill, when I am upset, or when I missed medication.  It’s plain ugly and, dare I say it…embarrassing to me.  It may seem like nothing to a lot of people, in the whole scheme of what this illness could do to me.  But it is one of those frustrations, especially this time of year, that annoys me.  I hate explaining my illness to people.  I hate sounding like a baby or a wimp.  So, I laugh it off as a sunburn and leave it at that.  Somedays, however, I want to just yell at the heavens and ask ‘why me?” 

Okay, I am done complaining for today…seriously…I’m done.  Nope,not gonna say anymore.  Finished!  well….at least for right this moment!

5 thoughts on “Frustration

  1. Chris says:

    I’ve never understood when complete strangers think they get to have a say in your life. You’re going thru your day, doing your thing and they think they get to just butt in and ‘advise’ you on what you should be doing. In my experience, it happened a lot when I was a smoker and when I was pregnant. I don’t tolerate rudeness well (maybe worse back then) and so I would give them advice back in whatever catagory I could see they were lacking. That normally shut them up and hopefully clued them in on how offensive they were. Don’t let morons steal your joy 😉

    As far as the insurance company goes, I’m not sure if it will help at all, but each state has a sector that governs insurance companies and what they do. I had a big fight with a health insurance company last summer because they were trying to pull some shady business. But after I let them know that I would be filing an official complaint with the overseer, the insurance company decided to reverse their ‘policy’ this one time. I was pleasantly surprised that my persistance paid off. Like I said, I don’t know if that will help at all but I found the name of the governing agency in my contract from the insurance company. Might be worth a shot.

  2. Joey Profit says:

    Every time I hear stories like this it just boggles my mind. I am Canadian and could never imagine the horror of this sort of thing. Uninsured because of human error. There are flaws in our system but at least something like this can not happen.

  3. Carla says:

    i remember reading in Money magazine i believe, that you may be able to negotiate a cash price with your doctors. it is saving them staff time, not having to process your insurance claim, and they’re getting the money now instead of 2-3-4 months from now.
    so, give it a shot, try and negotiate. can’t hurt right?

    i don’t know what happened with your insurance or whether you’ll get coverage again, but do know that if you hit rock bottom (no assets, no money, sick, no insurance) there is medicaid. i was on that for 2 years (I have lupus, with kidney involvement, and had a stroke in 2002). the rules were harsh, like you could not have more than $2000 in assets including your house (I had no house) and car (my car was old) and savings, which i ran out of pretty fast.

    just know that if it gets that bad there is a safety net. you won’t get to pick your doctor, and you may have very long waits for your “appointment” (like 2 hours past your scheduled time), but it was there when I had absolutely nothing else to lean on.
    as to the sun, i’m finding the heat bugs me just as much as sun rays. our condo pool doesn’t open til june 23 (new jersey. everything is weird here). i have some 50 SPF clothes i can wear in the water (surf clothes), but i usually just go at 6pm in a regular bathing suit. really helps me cool off.

  4. lwayswright says:

    I am already on disability and medicare. But, here in AZ you have to have supplemental insurance to help pay for your bills. So, that is what has been interrupted for me is the supplemental. I don’t make much money, I don’t have assets, so pretty much I am paying most of what I make on medicine. So, I guess until november and open enrollment I will just suck it up and hope for the best.

    You said you had a stroke…do you have blood clotting disorders with your lupus? I have three of them. They scare me almost more then some of the other stuff. The heat does bother me but the sun actually gives me blinding migraines.
    thanks for commenting on my blog!

  5. Grace says:

    Hi there 🙂 Thanks for visiting my blog earlier….

    My heart really goes out to you and I hope you have a better day today!

    I’m not sure if you’re into such things (this is the only post I’ve read so far), but EarthClinic is a wonderful source of information for holistic treatments. I found their page on Lupus here:

    Also, I am a HUGE fan of organic Apple Cider Vinegar and/or Tea Tree Oil -it’s literally been a miracle cure for my own contact dermatis. If you search under “dermatitis” on Earth Clinic, they have some information on how we can use these inexpensive, healthy products to bring healing to ourselves.
    I even drink ACV and honey 🙂

    May your healing come quickly!

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