Okay, so here's a question for any and all, lol. How does one deal with family who live far away and JUST DON'T GET IT??? Both of my parents, who live in California (I'm in SE Texas), keep advising me to not take my diagnosis so seriously yet, as it came from a "hick e.r. doctor" (don't you love it?), and that I should wait until I can get to a neurologist/neurosurgeon for a 2nd opinion. Mind you, after reading everything I can about Chiari Malformations, I'm quite comfortable with his initial diagnosis being correct. Plus, I have the added "benefit" of being unable to get a neurologist or neurosurgeon to see me as of yet because of insurance issues. My mother has become more amenable to the diagnosis, but she keeps referring to it as "a condition": "You've only got a condition, right?", whereas my father keeps telling me I shouldn't be worrying folks on Facebook who are thousands of miles away and can do nothing with my status updates. Besides, you shouldn't put personal stuff on the internet! Oh, and I'm "embracing the symptoms... the pain is all being brought about by that."
I'm in constant pain, as I'm sure most of you have experienced/are experiencing. Some days it's so bad, I can hardly get out of bed. I'd really like to have my family behind me in this, but with them so far away, it's hard for them to understand the severity of it. I can't cough without ending up on the ground from the pain in my head! Honestly, it's so frustrating to have to be dealing with what's going on in my body as it is, let alone having to deal with them. Has anyone else had to deal with people who SHOULD be supporting you ending up making it worse by not doing so? If so, how'd you do it? I don't want to cut my parents off, I really don't. I just don't know how to deal with the 2nd guessing, and talks of how I'm malingering, instead of working and being normal the way I should be. I need my support system in place right now... the depression I feel, all by itself, is staggering enough. I feel like I've not only let myself down by having this, but that I've let everyone else down, as well. I can't stand up straight, especially when I'm tired... I "curve" to the left. I don't sleep more than 2 hrs at a stretch. There are times I feel like I walk like Frankenstein or some other fictional monster with a halting gait. Plus, I'll sometimes just go to the side when I'm walking forward for no other reason than my feet decided they'd rather visit there. My vision just suddenly "tunnels", my head gets all funny feeling, my limbs go weak, and I end up on the ground. Sometimes, my limbs just go weak. There's no rhyme or reason to it. And the pain... from my head, down my neck, into my shoulders and spine is excrutiating. I love my family, I do... I'm just at a point where I don't like them a whole lot right now. And, now that I sound like a whiny snot, I will apologize. I'm trying to be positive, but today is not a very positive day.