I just called Dr. Hanson at the N.I.H.

I basically left on his vm,

“I know I’ve been a bad girl, I was with my father in Canada while he was dying of cancer, getting whatever last minute family history I could get out of him, but now I’m back in the United States, committed to doing whatever I can to pick up where we left off.

Everything is still the same (ongoing medical problems, infections, etc), but what is interesting to note is I currently have a mouth infection, that I cultured positive for strep and actimoyces, *and* I have ultrasounds showing a problem, where usually I don’t register on an imaging study, due to my lack of an inflammatory process.

And–as usual–I don’t have a fever or an elevated wcb, but I do have some pain.

Let me know if the study is still going, if it’s been closed, I would love a referral to someone else. I am willing to fly back to Virginia and speak directly with my mother again as well.”

(Which is code for: I will get an army of attorneys and suck the blood out of her if necessary…)

I know I am hitting my head against a ten foot concrete wall, but I just woke up this morning, and decided I have to stop feeling sorry for myself and just keep pounding the pavement.

It’s not like burying my head in the sand is going to help–or having a thousand doctors refuse to help me–none of that is going to make this problem go away.

I have been living with this my entire fucking life. If someone refuses to believe it, that doesn’t make it any less real.

It just means I have to keep going…

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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