Learned something new

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Well, ok two things:

1: I really need to re-examine my personal threshold for what I consider "functionally" ill [sick but let's not make a big deal of it, everyone gets a little cold every once in a while, just suck it up] versus "get some damn medical attention, yesterday" ill [things that might inhibit one from making oneself meals, getting proper nutrition, buying groceries... walking up stairs, making the bed, breathing... you know, no biggie]

I say this because it leads me to the second epiphany:

2: I now have knowledge of what it feels like to have pneumonia for a long time with no treatment.

There are two sides to this, and I'm kind of confused, and kind of happy.

Confused because I have this really hard time with feeling sick. I mean generally I have difficulty validating for myself that I am actually a degree of sick that it would be worth it to go to a doctor. Much of it has to do with weird OCD stuff that is difficult to explain but is basically rooted in "I wont be believed" and kind of revolves around the theme that I want to be viewed as a genuine person. If there is no absolute definitive evidence that I am not sick- AND sick exactly as I report- my OCD tells me that I am lying and that's like, the ultimate fear. Of course the other half of my brain realizes this is ridiculous.

But then I sit in the doctor's office saying I have a dry raspy cough and have been running fevers and if I'm not coughing my brains out the entire time and I'm only running, say 99.9 I feel like i am somehow being dishonest.


So I need to work on that, all of it and I'm actively seeking help for that crap. At the same time getting the level of care and treatment I need for the OCD takes time and it's frustrating because it's hurting me more than I even realized.

Because I have penumonia and i woke up literally not able to breathe for a good thirty seconds but still wouldn't go in the very nxt day.
I understand on many levels that isn't right.

So... good part:
There's a reason I have been feeling SO physicallly ill? Like way beyond what I "normally" feel.
I have atypical/walking pneumonia which can set off inflammation and joint pain [see: aggravate rheumatoid symptoms] and create some sypmtoms that are unexpected. So it's good some of this is treatable.

I'm glad it's treatable.
But it kind of brings me back to: I have no idea how to recognize when to see a doctor.
I also just generally feel crappy and don't know how to express that "no, this is important" to myself or those around me. I've often also been given the impression that my physical stuff isn't really important also, so I have this constant doubt.

It makes me sad, because now I'm WAY sicker than if I had just gone in like a week ago, because I was having the same symptoms then? And that's really only my responsibility.

I don't know. Does anyone else get this kind of confusion where... you don't have much reference for what is too sick or not understand how to gauge your own health?

Is this even the right area? I kind of really don't want to brain storm on this crap right now though. I'm all tired and coughy.

This is all over the place I'm not braining well.

Pneumonia can be quite deceiving.

I had a form of walking pnuemonia when I was a kid and went hiking while I was sick. It took a little while before I showed that I was sick enough to see a doctor.

My son just got over strep throat. He was probably sick for a week, and we didn't even bring him to the doctor for symptoms related to strep. We brought him in for something else, and while we were there, it was discovered he had strep. No fever. He was just a little lethargic and had less of an appetite. And a rash (the rash is what we brought him in for.)

I don't think it is completely unusual to not know when you are really sick.

I have read that Aspies tend to have high thresholds of pain (I would add discomfort, because being sick is discomfort.) We may not know we are as sick as we are or in as much pain as we are. This can make it hard for us to get in to see the doctor when we need to, and it can make the doctor think we are not as bad off as we are.

I had a severe back problem a few years ago, and when it was all said and done and I had my surgery, the underlying problem should have had me in to surgery months before. But I tolerated the pain too well. If I had been a complete wreck with unbearable pain earlier, I would have gotten the surgery earlier. Instead, my ability to tolerate high pain levels made the doctor think my problem was really not that bad.

When I was in labor with my first child, I had dysfunctional labor. I was hooked up to the machine that measures the strength of contractions, and they were really strong, but a nurse actually said to me, "You can't possibly be in labor because you are not crying." Huh???

Sometimes it takes someone else who knows us to recognize that we are not right and encourage us to get checked out. We should listen if someone tells us this. In many situations, I have found it helpful to bring my husband (if I wasn't married I would bring my mom or a close friend if I had one) to the doctor's visit with me. Sometimes I cannot be firm enough with the doctor or communicate my situation well. My husband will help me communicate with the doctor by emphasizing the problem to a greater degree than I might myself. Those visits tend to go better than the ones when I go alone.

I think it's kind of hard with some of the stuff I have going on plus that I tend to diminish it also just in general.

Like... ok so people like to make a hug segregation between pnuemonia versus walking pneumonia, which I just discovered.

I was diagnosed with pneumonia, and I just assume it was walking pneumonia, because I've been... walking around I don't actually know if there is a differentiation on discharge and she just said bacterial pneumonia. I also have some unclear rheumatoid crap that is for now diagnosed undifferentiated connective tissues disorder/disease [and really? can I just say I am sick of that whole "we are going to call it something else every week thing? I was going to rant but maybe shouldnt] and have been generally sick for a long time so my body is just like "OH NO NOT SOMETHING ELSE" and my immune system is super crappy, even for the crap state it's usually in.

But I told someone yesterday I had atypical/walking pneumonia- I have been having a hard time going down to the kitchen and back upstairs- and they were like "oh, is that it?" but I stopped breathing the other night? So, none of this helps me to figure out like... what warrants medical attention ever? I get that part of it is that apparently I never present like the average person.

I do think part of it is the tendency to not experience or be aware of pain/discomfort like a lot of other people.

I have this a lot, actually. But now there is a greater tendency to take blood pressure into account, which actually is revealing with me in terms of what my pain level is. So often they will be all "oh right you are at a seven and a half [pain rating]", take my blood pressure and measure it to what my blood pressure usually is and say 'OH.'

But thanks for replying. I feel slightly less dumb.

so, a great example of the OCD crap is that... me saying I currently have the UCTD diagnosis is only kind of right because the rheumatoid issue DX is like constantly in flux and while that is the "official" diagnosis I've basically been having this huge issue with my rheumatologist lately about actual diagnosis and the way she is going about it because she has been disregarding some pretty important stuff. So she wants to change listed diagnosis because she has concluded that current diagnosis is not applicable [though symptoms fit] based on not investigating stuff like family history, complete medical history, some pretty essential symptoms- blahblahblah details not really all that important to point of discussion, but it's a problem because then I get none of the treatment that could actually help.

---
Point being?
I said undifferentiated connective tissue disorder but then started entering the OCD Vortex of DooM because my brain was like OMG YOU ARE LYING YOU LIAR OF LIES! YOU ARE A TERRIBLE PERSON.
And then I was going to write this. And didn't.
But then had to because I had to fess up to the "lie". ...and this is also part of why I don't end up seeking medical care because "OMG I'M LYING ALL THE TIME."

*headdesk*

And no. None of it makes sense. NONE OF IT.

i'm not good at it. when I get sick I just take a bunch of vitamin c and continue going to work. I am terrible at telling pain. doctors ask what kind of pain is it and how bad is it from 1-10. I'm like o.O I'll probably get mistreated if I ever go to an ER. I tend to undertell stuff too. so I have a bad pain i say its minor cause I worry about them thinking I'm just trying to get drugs.

I hardly go to the doctor. even though theres some things I probably should go for.

Yeah, when I went to the ER for my back pain, I was writhing in the wheelchair and tears were streaming down my face. I was on the verge of screaming. The nurse says "what's the number?" and I said 8. My husband said it's a 10, but the nurse said that I had to say 10 myself. The problem is that "10" on my scale is that I am so much in pain I am unconscious. Probably being unable to contain a scream would be a 9.