My goals for 2015

Besides the obvious goal (to live another year), these are my goals for 2015:

1) To stay out of the hospital.

This is no easy task for me, but with my regular Ig therapy, maybe I have a chance. I almost made it through 2014 without a hospital stay, but I had a few pain management issues that needed to be addressed…and it was downright awful, because all of my main doctors were away on Memorial Day weekend. Me and new doctors when I’m experiencing severe pain is not a good situation for anyone involved. Me for suffering, and them for being frustrated because they have no idea what the fuck to believe. First dates when I’m in a crisis rarely end well.

2) To be diligent about taking my medications, especially the Ig.

You’d think with everything I know about medicine and the human body, I’d be an amazing patient by now, but alas I don’t follow my own good advice (and hence I end up back in the hospital). Since no one really knows what to do, I never know who to trust or believe, and often just go how I feel, and that’s kind of like driving a car with one eye patched and no hearing. Not good…but we make it. We hit a few things a long the way, but somehow by the grace of God (and Dr Sherman, dr fallas, dr Kathru, and now maybe Dr. Chapman, I make it…)

3) I need to let go of finding a doctor to champion my medical case.

Let’s face it, it’s just not going to happen. I’ve been very sick for ten years and I’m super grateful for the help I do have…the great doctor who thinks deeply about my case and cares about what’s going to happen to me clearly isn’t coming. I’ve been sick long enough to understand where they’re all coming from, and I get it, I understand. It just sucks for me, but I have to stop hoping for mr wonderful because it makes me too sad.

4) Finish my book on the U.S. medical system and get it up on Amazon.

I’ve been working on this book for over 5 years, and it’s only 15,000 words. Not exactly a masterpiece…more like an extended pamphlet. I just need to finish it.

5) Get a creative project, of some sort, finished.

I have been writing, directing (and acting) since I could walk. I used to write plays and subject my sister and all of my cousins to star in them at family gatherings. I once had a professor tell me in college I’m always going to become depressed when I’m not creating, because I’m fundamentally an artist and therefore it is my innate nature to produce projects. I’ve been so burdened down with the quest to ‘get the answer’, that I’ve neglected almost everything else in my life. It’s not that I’m a bad person, it’s just I spent 60-80 percent of my day just dealing with being a sick person (everything from doctors appointments to tests to taking mediations, not to mention all the pain involved ), so whatever time I’ve had left, I was trying to ‘get the answer’.

And now…my medical history is just a huge fucking blog of a mess, so getting the answer isn’t really possible, because it’s all too confusing. I can live with the NEMO diagnosis. It gets the idea across that David and I have a super super rare disorder that hinders our ability to fight infections. That’s good enough for now.

(Considering how disorganized all of my thousands and thousands of pages of medical records are, at this point trying to get the answer isn’t really possible, because I’ve lost track of a lot of my documents. It’s all in boxes of course, but who wants to spend hundreds of hours going through that kind of thing? It’s like revisiting images of a painful car accident. It was bad enough to live through it, I don’t really like reviewing the recaps.

Some of things doctors have said about me makes me so angry, it’s an angry that I’ve never, ever, felt. There are a few people who should be on their hands and knees with a fucking apology. Yep, see? Better to just burn those records. I get bitter just thinking about them sometimes 🙂


2015 is an ok start…I know I’ve got something very serious going on right now, I’m just hoping I can get it under control otherwise 2015 is going to be a bad year…this stomach swelling is so bad, I’m really really hoping it’s just an infection and I need my IV antibiotics, because the other alternatives are all worse…

Stupid fucking breast and uterine ultrasound a few weeks ago.

I’ll be very grateful to be alive to see 2016.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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