Crying and stuff…some days just hurt more than others

I try not to delve too much into self pity…goodness knows I’ve spent enough time in the hospital to have met many people who are suffering much more than I am…

it’s just that some days, everything is harder than others.

The hardest part for me, is just dealing with the day to day reality of how dependent I am on the help of others…that’s the hardest part. Here I am, eternally gratefully, but it’s scary knowing that I’m only alive because of others generosity. And I know that’s going to be very hard for my son, David to deal with too one day.

I’m still trying to digest the results of David’s NEMO test “inconclusive”. One immunologist said she thought this wasn’t it, that the source of the problem is elsewhere. I don’t know enough about science to really be able to make an informed opinion, but I think she might be wrong…I think it’s possible that the Correlegan lab may have stumbled upon a previously unidentified mutation of NEMO, and this in fact is the root of our problems…

We do have an immune response, it’s just a fraction of what a healthy person has. And I rarely get colds (same with David), but we have lots of problems with bacterial infections. I have had some bad experiences with chicken pox and HPV, but many people with normal immune systems have had those problems too…I don’t think my experiences with those virus signals an immune deficiency.

What is definitely *not* normal, is our lack of an elevated wcb and a fever…even when a documented infection has been found. And this has led to our constant need for antibiotics.

I guess time will tell. Hopefully, when I pass on, that there has been enough groundwork lid down for David’s doctors to be able to find the answer…that’s why I’m fighting so much these days. For Him.

The strange swelling in my belly isn’t going away…it’s actually getting worse. And I’m tired…even more tired than my normal tired self.

I’m supposed to be going on a trip in a few hours, yet I’m so exhausted. I’m probably just going to get to my destination and just sleep…

Kinda like I do here in Los Angeles 🙂 .

I wish this swelling in my abdomen would go away. I don’t know what’s scarier…feeling like the end is coming, or not knowing how exactly it’s all going to end. Probably my heart is just going to give out.

It’s been broken into a million pieces for a long time, anyway…

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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