What it’s like to feel like sh*t all the time

This is a difficult one to put into words…especially when I’m cursed with the ‘but you look so healthy’ gene.

It’s hard…really hard. But it’s even harder because I look so normal, so only very few people believe or understand the extent of my suffering. I haven’t had a single day in over 7 years that I haven’t felt pain to some degree. And because so many of my test results have false negatives, I don’t like to take pain killers, because the history of my pain is sometimes the only clue my doctors have to figuring out what may be wrong with me.

The doctors who will listen, of course. Most doctors are too stuck on how healthy I look, they don’t want to listen to my history of pain. Or worse, they dismiss it. “Have you taken your Prozac yet today?”

I actually once even had a psychologist (*knowing* she was being audio recorded), tell me she thought I had delusional disorder. When my symptoms alone could have been attributed to MS, a disease I’ve had countless positive brain MRIs for, or my positive ANA. Lupus.

Those diseases alone can cause horrendous ongoing problems.

Really? ‘Delusional?’ As I lay there in the hospital bed with unexplained tachacardia?

Psychology in it’s finest moment. Or medical stupidity at a new low. I’m still not sure which one yet.

As my uncle used to say, “if going to a mental institution for six months would cure me, then I would be more then happy to go”. Yep.

As I lay here tonight with this strange liquid popping sensation throughout my abdomen, I wonder what he and my father laid in bed at night feeling too.

My father keeps telling me to stop yapping about my health problems “nobody cares”.

I know there are people out there who have it worse. Much worse. But would you tell a rape victim she should be thankful she wasn’t murdered?

My health problems are severely disabling and expensive.

I think my father’s coldness is rooted from he’s so burned out from having gone through this for so long, it’s made him hard. I still have a lot of hope that it will work out. That I will be restored to full productivity.

That’s why I even started this blog–a cry out for some kind of help. There’s got to be help somewhere out there 🙂

My driving force though, is I just want to make sure David is ok…my life? I don’t even know what to make of it anymore. I just want to spend time with the people I care about.

But David? I don’t want him to get to his 30s, and become burdened by so many expensive health problems. Or worse, not make it to 30 years old at all. That’s my even bigger concern. Dying because his father didn’t take him to the ER because he looks too healthy. It almost happened to me at 17. But thankfully, I pushed my mother anyway. Though I had to listen to a lecture on how I was over-dramatizing my health problems.

(Emergency appendectomy, Nov 7, 1992. Only slightly elevated wcb, slight fever at 99.1, and mild inflammation. Surgeon almost didn’t do surgery “but she /claims/ she’s been in severe pain for a few days”. He looked white as a ghost after it was over. The situation in my abdomen was much worse than any of those results revealed. And this is a rare story of when I actually had some positive results. My gallbladder story is even better.)

My son David is extremely gifted, and I know in my heart there’s so much he’s going to be able to do to give back to society. I want him to be able to live his life completely, and not be crippled before he even gets a chance–

The possibilities, are endless for him.

We just need to find this hole and plug 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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