Trying to de-stress. I don't know if I'll blog this or not or if I'll bring this up to any of my doctors but since I'm already talking about it in my head, I might as well get it down on "paper". I've learned over the years that bottling stuff up is BAD for me, I suppose it's bad for everyone but it messes with me mentally. I got a lot "out" in my mental conversation so I hope I don't forget anything. That's one thing I do, hold "mental" conversations with people. I'm actually reasoning stuff out in my head to get it off my chest and envisioning that there is a person listening. Kind of like when you have an argument or someone insults you and hours later you think of the line that would have been PERFECT at the time and play out the conversation using that tone and line... Yea that. Only me?
Anyway, basically I'm overwhelmed. I need to get it all out. My mental partner was my primary doctor, the one who is or was on leave. About my conditions. I was looking up disability qualifications online but everything needs "proof". I understand that but the way my history has been, I don't have much by way of proof. That's what is currently annoying me. I know I have anxiety and depression but the SSA website mentions proof and severity and length of time you've had it (that's just 2 things). I can tell you when I first noticed things. But that isn't "proof" medically. I've been MOSTLY suffering in silence for 13 years. That's a LONG time, but on paper, there isn't much.
The first time I remember having an anxiety attack, I was 9. Yes I've had anxiety since at least 9, possibly longer. It wasn't formally diagnosed until 13 or 14 though. I guess you don't expect many 9 year olds to have a panic attack. I remember Mom taking me to my pediatrician and him prescribing 3 medications, including an inhaler and telling Mom "Try these, which ever works, keep doing it." Wtf right? I don't remember anything about the other 2 medicines but I remember a few more panic attacks and me trying to "treat" them with the inhaler. Looking back it's OBVIOUS what it was. I was panicked and couldn't breathe and hyperventilating. I was diagnosed in middle school only because I had MULTIPLE panic attacks in a 1 week period. I was put on paxil and saw a therapist. The paxil took away ALL emotions, not just the anxiety. I'm guessing that it wasn't the right medicine or the dosage was too high but I felt like a zombie, didn't like it so I quit taking it. And it was a bad time for me, I was rebellious and didn't trust anyone, including the therapist so I quit going.
I've had people/doctors tell me my conditions were anxiety over the years but I've never gone back to a therapist or on meds and those weren't correct. I DO have anxiety but it's not well documented by medical professionals, and even though I have anxiety, it's not why I was seeing those doctors, it's not what was wrong with me in those instances, but many Dysautonomia patients have the samen experience so I'm preaching to the choir on that one. And aside from needing proof, as I was "unloading" on my mental conversation, I realized I probably WOULD benefit from seeing a therapist. But that makes me anxious as well. I'm scared of being labeled with depression and anxiety. I'm scared people/doctors will keep brushing symptoms off as anxiety.
But I'm sick of hearing (like from Big Daddy) "Ever since you got diagnosed that's all I hear is about how you have all these conditions." He's getting better most of the time (forcing him to educate himself helps a little). What is so hard to understand about it? Just because I haven't been diagnosed or just recently diagnosed or diagnosed YEARS ago and no medical activity SINCE doesn't mean anything to ME but apparently it does to everyone else. Just because I haven't had everything diagnosed doesn't mean I'm healthy in those aspects, I'm just now getting to the point where I'm not taking "You're healthy" for am answer and am pushing for the truth. Just because I just got diagnosed with some things THIS year doesn't mean it's new! I've been passing out since I was at least 10. Everyone knows that. They can check my medical records. My relatives have witnessed it. They KNOW it's been happening for years. The only difference is NOW it has a name, NOW I know why. But the day I received that diagnosis was February 2012. It's a "new diagnosis" but I've had the condition itself for 13+ years. Then there's the anxiety, I haven't seen a doctor/therapist for it in 9-10 years same for medications. I've had 2+ doctors give me the number to a local therapist since becoming an adult but that's not the same (is it?). But just because it's been 10 years +/-, that does NOT mean I don't have it.
I kept mentally mentioning the fact that I've been mostly suffering in silence for years. That's the biggest part of my lack of "proof". Before I'd go for everything, the anxiety/therapist thing put me off, then doctors brushing me off put me off and not getting help or diagnoses made me mad so I really do suffer in silence. If I'm hospitalized, I don't ask for anything. Pain wise I take only what's offered, I don't ring the call bell unless there's no option. I'll wait in silence for the nurse to make rounds. If I'm confined to a bed and need to pee, I wait until I can't wait anymore (again, hoping it's close to time for the nurse to make rounds). I don't like bothering them, even for legitimate NEEDS, despite being told "that's what we're here for!" Though the few times I HAVE used the call bell, I was brushed off as well. Short of breath while pregnant with my first I was in the hospital after falling down steps and going into pre-term labor. I was on magnesium sulfate and confined to the bed and could NOT breathe well but the nurse ignored me because my sats were 99%, feeling short of breath or like someone is sitting on my chest is a frequent symptoms now. Once my catheter quit working (same hospital stay) and I kept telling the nurse I had to pee "You have a catheter, you just feel like that because of the irritation, you're fine". I ended up peeing myself because the stupid thing failed and they had to "make SURE my water didn't break". I've been telling you I had to pee, telling you I did pee. Why could they not believe me? Ever! Oh yea, that just adds to my frustration. Then they removed the foley but I was still confined to a bed so I had to call the nurse to help me (bed pan, ugh) and again, I wait till I HAVE to go. Did that once and again, took their time. Took an additional 30 minutes on top of me waiting. I was on saline and mag sulfate and group-b strep antibiotics as a precautionary measure since I hadn't been tested. And don't EVEN get me started on my most recent labor nurse and the residents. This post is already massive. I don't like taking pills, even for my migraines, unless it's severe/debilitating, I won't even take tylenol/ibuprofen most of the time. The insomnia/sleep issues, I don't want to be dependent on meds so I didn't bring it up until recently and that's only after years of people saying "That's just not normal, you need to see a doctor!" that I finally gave in and said FINE! The GERD, I never complained until I was pregnant with my second, I was physically sick for a week STRAIGHT, no breaks before I finally went to L&D for help. The heart palpitations, the 1st and only time I went over those, I got yelled at that it was anxiety and I needed to see a therapist and not an ER doctor. The only time I mention them now is regular doctors patient history and if directly asked. I don't go in if I'm dizzy or faint anymore unless it's really bad (like the time I couldn't talk after and I was pregnant, or the time I couldn't QUIT fainting, was grey pretty much and freezing and spent 6 hours in the ER *laying* flat trying to get my heart to slow down) just some examples. The migraines/plain headaches, I've only gone in once and that's because it wouldn't go away (got a shot of something and was sent home, slept all weekend but the one time I tried to get up and eat, I passed out twice), I don't do anything except try to control it or sleep through it because I can't go in all the time, well I could, but I don't. And it wasn't until the neurologist who read my sleep studies recommended I see a neurologist that I was able to get in. When I asked for a referral I was given one but the neurologists the referral woman called refused my insurance so I gave up.
See next post for part 2.