More tests, more symptoms, more randomness

I was reminded this week that Sarcoidosis is a systemic disease. I've been so focused on the lung issues, it hadn't really occured to me that anything else would be involved. Wrong there!

Sunday night I found a huge bruise and red rash on my leg. This was large enough and bruised enough that even I, in my craziest of days, should have noticed getting it. I was a little concerned, but since I had a doctor appointment the next day, I decided to just let it go and ask then. Turns out, with Sarcoid, this can happen. However, and there always has to be a however these days! The doctor wanted to run some tests to be sure it wasn't a blood clot forming in my leg. great.

So, more trips to the hospital, more time off work, more labs. After two days of tests, I got the very good news that it is not a blood clot. And it was good news for sure. But, then I thought about it. What it does mean is that my immune system is now going haywire in other places besides my lungs. I'll now start getting random rashes and bruises on my legs, and I'm sure have to have more tests in the future. Man, just when the steroids were getting my lungs better!

I talked with a friend this week who is a 3-time cancer survivor. She had to have a PET scan last week that she was first told was fine, but then got the second call from her doctor with the news that no, it wasn't clear, that some of her lymph nodes are lighting up (this usually means cancer activity). This woman is an amazing woman of faith and courage and grit. She tells it like it is, trusts God through all of it, but doesn't pull any punches. When we talked the other day, she was shaken. She'd just been feeling like she was getting past the cancer bit, and now found out she has to do it again, for the 4th time. I told her swearing is sometimes completely the right response!!

We talked again yesterday. She's met with her surgeon, who is working with her and her onco on a plan. She knows more what they are testing, and they are doing it in a way that will require minimal down time for the biopsy (always a good thing when you are trying to keep a job and fight health issues at the same time). She has turned it all over to God, with the request that He have just a little less faith in her ability to handle all things.

What we laughed most about, though, is that, when it feels like your body is just trying to undermine your life all the time, all you want to do is stop the nonsense. You know you'll beat it, whatever it is. You know you can take the treatments and the tests and the crud that goes with it. But, it's just having to do it. Having to set aside work and kids and husbands and friends to go to the doctor or the hospital and deal with this imperfect shell all the time. It's seeing your doctors more than your girlfriends. It's having a datebook filled in with appointments for tests and calling the insurance company and get getting a world-class education in reading medical statements....Enough!!!

My friend has decided to laugh at the randomness and stupidity of it all, even as she faces her 9th procedure in 9 years. She's my hero.

When I got home from talking with her there was a message from my surgeon saying I need to come in for a checkup. Of course.