Waiting for test results: what is my next move?

This is the calm in the middle of the storm for any patient’s medical journey–waiting for test results to come back from the lab.

At this point, it means,

1) we’ve found a doctor who has taken the time to listen to our story (yea!) 2) this doctor clearly has some kind of plan (double yea!)
3) and bonus, it means I can now take a break from banging my head against the wall begging for someone to listen–because someone is finally helping.

Since my tests being done are very complex and rare (once test is at CHOP (part of their genetics study), and the other at Correlegan (my son’s NEMO cheek swab), waiting for the results might take weeks, and maybe even months (CHOP tests).

Do I plow through to try and get more tests done, or do I just sit back for a moment and breathe? I’ve actually decided to take a little breath 🙂

During this break, I’ve been trying to get some things accomplish from my old life..the Teddy everyone knew before she got sick…but I find it not as easy as I had hoped, because of the degree of pain I’m in every day, and general lethargy, so there ends up only being so much I can do.

Whenever something is not going right inside your body (which is almost a constant for people who are chronically ill), it’s like there are ten alarm bells going off in your mind “fix me! Fix me! Fix me”.

Some days, I just want to scream, “shut the f*** up!!!”, but evolution didn’t provide any snooze buttons. I guess that’s why some people in these situations get into drugs or alcohol, but I’ve avoided that for the most part…not because of any kind of moral nobility, but mostly out of anger because I was once so often accused of just being a drug addict when I would go to the ER for help, that I’ve avoid any kind of pain killers (unless it was extreme), just to avoid ever being labeled an addict.

Granted, the ER wasn’t the best place for me, but I didn’t know that then. No one has written the manual on how to go about things when you’re sick–you just go where you think you can find help fast.

So now…it’s an interesting time. It’s a new feeling, waiting for these tests to come back. There’s a little bit of a “I’ve been victorious” feeling, because clearly there are medical professionals out there finally validating what I’ve been trying to tell people all a long, but there’s also some fear too–what if they come back negative? What next? (or maybe even worse–come back positive?) Then what???

There’s always been a part of me that wished all of those ‘evil’ doctors I’ve seen were right–that this was just one big sadist fantasy I’ve made up in my mind. That one day I’d snap out of it—pop!–and just go back to a normal life and forget this whole thing ever happened.

Of course, my sanity reminds me every day this is not some big joke, and that people’s cruel remarks and comments are just a projection of their own frustration for not being able to fix me too…

At least that my Uncle used to say–

So now, as I lay here with my stomach and back pain, I wait. And hope.

Maybe I will slip a Vicodin (or two?) this afternoon. Goodness knows after all of these years, I’ve earned it.


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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