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Tuesday, October 20, 2015

$100,000 Worth of Sick?

I've been wrestling with where to put this blog post. Here, my anonymous blog aimed at foster care and adoption or my public one aimed at my health. For two reasons I've decided here. 1) This one has more readers. 2) I think that ultimately it falls under the fertility issue and reason we went into foster care.

I have a chronic illness. An immune disorder called Sarcoidosis. Sarcoidosis can affect any organ and there is no known cause and no known cure. There are treatments that can make the disease go into remission but I will always have it. For some people it flares up over and over. This is true for me. Most people get it in their lungs-which I have had. Other people get it in their eyes, skin, liver, and heart. About 10% get it in their brain. I'm the lucky 10%. 

Sarcoidosis causes granulomas (hard cells) that, over time, can cause scarring. My sarcoid or Neurosarcoid (since its in my brain) is on the trigeminal nerve. It's a bad place to have it since that's the most painful nerve branch to aggrivate. Right now if I have active Neurosarcoid or permanent scarring is up for grabs.

This disease is what lead us to foster. Like most autoimmune diseases the medications to treat have harmful side effects and patients are counseled to use birth control while on them. 

I went to see my specialist after waiting 2 months for an appointment and she again counseled me that the treatment of my symptoms mean that I need to be on birth control.

My heart sank. I felt really, really tired when she said it. I'm tired of fighting with everyone for everything. I fight for my kids and my family and my job and my relationships. And then I wait and I wait for those things that everyone promises with their "you're such a good person good things will come your way" speeches. And then I wake up to my face on fire and I have to fight to be well again.

If you've never been ill or had a chronic illness it's hard to understand how exhausting it can be to be the sick person. I walked out of the office with orders for all kinds of tests so that we can do more tests based on the 1st tests' results. I have to do the testing before I can go on the medicine. 

There are some new treatment options. One of which is a $100,000 drug. The brochure says they will help you with copay assistance up to $25,000. I was blown away. Am I $100,000 worth of sick?  Could I actually inject myself with a drug that costs that much? I'm not dying. I'm in pain. Is pain prevention that necessary? It seems so extreme. Couldn't that money be used for other things? 

It's an option down the road and I guess it's good to have options but that freaked me out quite a bit. And then of course I got the "no babies for you" speech and my heart cracked just a bit. 

Meanwhile I'm surrounded by pregnant women and had to give the 2nd oldest in a sibling set of 7 a talk about puberty today.

I really just want to say f-it and go to a beach by myself for a few days where I can cry as loud and long as I want to. 

This is one of those moments where becoming an adoptive mom seems like a never ending process. And if I'm being totally honest, today I resent it. All of it.


  1. I have a chronic illness, too. Have you heard of the Spoon Theory? Also, do you have Trigeminal Neuralgia?
    ~Chaya Tovah

  2. Chaya- they suck don't they? Yes I have TN type 2 as a result of the Neurosarcoid. I have heard of the spoon theory (for those that haven't- it's a way to to measure energy. A person has a certain amount of spoons worth of energy and each activity costs them a certain amount of spoons. You have to recharge or rest or take meds to get your spoons back). For whatever reason I've never really thought the spoon theory was helpful to me. Everyone needs to find what works for them. I've also never found support forums or groups helpful which is ironic considering I write a support type blog! I'd rather pretend I'm not sick...

  3. it's funny you should say that you'd rather pretend you're not sick. actually, denial is a very useful function for me I find. if I would actually admit the amount of crazy stress in my life I would not do in the words of dori.... I just keep swimming just keep swimming.... hopefully the new meds, if you want to do them, work well!