$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.

More Time

We are on a family vacation this week and Stella was watching Hubby running around and being silly with Smiley. At 10 1/2 she feels too old to do that kind of thing. Stella and my Mom were having a conversation and my Mom said something to the effect of "you were meant to be a part of this family".

Stella replied:

"I know Grandma, I just wish I had come to you when I was younger so that I could have more memories with you."

So powerful are her words. How safe and attached she feels. The longing to have more of our family. The sense of belonging and identity. Some powerful emotions being shared easily. 

The loss and regret. And my own feelings from a few days ago reflected by my daughter. 

Listening Circle, My Foot

I received an email yesterday (10/9) with an invitation to "join the rapid response team to give valuable feedback" about how better to serve Foster Parents. The "listening circles" as they are being called are scheduled for 10/14 from 9-11 or 11-2.

I shot back an email to the person who sent me the invite- "it would be great if there were times when working foster parents could attend."

Seriously, on top of all the time off I have had to take off for court and ACRs not to mention umm mothering 4 kids who could easily eat up a week of vacation because the share all their germs with each other....now I'm supposed to take a 1/2 day to participate in "a listening circle" with 5 days notice? Seriously who has all this free time? And I need like 2 weeks notice for meetings like this- I need to dig my sit-upon I wove in girls scouts out of storage.

 I desperately want to give feed back but this is just silly. Makes me think this is one of those - we offered you a chance but made it impossible for you to attend scenarios. 

You want to help foster parents- make these meetings meaningful. Give us an actual chance at providing you with some great ideas. I have a long held believe that foster parents and their resourcefulness could solve a lot of the problems in "the system" if given a chance. But I can't do that if you schedule meetings 1) at the same time my children have to be dropped at school and I have to be at work or 2) in the middle of the day at an office nowhere near mine. Have one in the evening and when I say evening I mean like 7 PM not 4:30pm because that doesn't solve my problem. Oh and have child care there. You have all of these extra drivers and visit supervisors, pretend I'm a bio parent and give me some extra help. (A little mean spirited but the gazillion chances and the exceptionally high standard I'm held too are making me kind of salty.)

I'm going to email the organizer anyway. You know in my free time....

Right before the deadline...

You know how when a court date is coming up and a bio parent does aome stuff to make it look like they are working their plan but they really only did the stuff so that they can point and say "I'm making progress! I did x! (Because there is no y or Z. Let's be real.)

Well the Department did that to me this week. We had our Administrative Case Review or ACR which is where a 3rd person looks at the case plan and rates the progress on each action item as satisfactory or unsatisfactory. They happen every 6 months and at our last one the reviewer was like why don't you have an adoption worker yet should have been assigned 6 months ago ( I'll do the math for you- that's 12 months from today).

I've been blabbering on about no adoption case worker for a while. Everyone was like- I know? So slow. Shrugged their shoulders and promised to follow up. I believe they did follow up because following up means no more blabbering on from me....

So we had the ACR and just as I'm getting ready to tell another person about no adoption case work, I'm informed one was assigned in the last 48 hours. 

Just in the nick of time where the Department was going to have to rate themselves unsatisfactory....

We scheduled the next ACR for the end of April. The hope is it gets cancelled because the adoption should be finalized.

Who wants to take bets?