Fly on the wall of my life?

Hey ADHDers, take a look at this article I found online about ADHDers and puberty. I feel like I just read a transcript written by a fly on the wall of my life. Except it's written by a doc from Colorado, and I didn't grow up in Colorado. Here's the link, see if she pinned you too...

What an awesome flashback. My own awkward early teen experience was only made even MORE awkward by the fact that I was not only emotionally behind, as per the usual for most ADHDers, but I was way ahead academically. I was in advanced classes, and smoking standardized tests for dinner...and literally could not relate at all to other teenagers. At all...oh I know that every one feels awkward but I was REALLY awkward. I didn't really even know what other kids my age were talking about most of the time. I didn't act like a normal teen, really, until I was about 20, and it wasn't pretty.

What a mean trick to play on ADHD kids...we're already a little outside the box, then "just add puberty"...sheesh...can't we just give ADHDers a "get out of puberty free" card? It's a special hell, that...we don't really need any more layers!

Readers, meet A-Train...

...A-Train is my six-year-old step-son. He's the middle child in the family...and today, he put into words something I wish every ADHD kid had the words for. I should clarify that A-Train is NOT diagnosed with ADHD. He's only six after all, and while we have our suspicions, he doesn't seem to be impaired in a way that, at this point, requires "diagnosis". A common interaction however:

"Can I ride my scooter?"
"Yes, but don't go in the road."
"Okay!" He turns, jumps on scooter, rides directly into the street.
"A-TRAIN!"
"What!?" He rides around in circles.
"I said don't go in the road!"
"What?" Still riding in circles.

This evening, we're sitting at the table eating dinner and he stands up next to his chair. He wiggles a little and then exclaims, exasperated "OH GEEEEEEEEEEZ!", doubles over, smiles, grimaces, wiggles again.

"A-Train...what's wrong!"
"Ohhhhhh, my bwain is TELLING my body to go CWAAAAZYYYYYY!"
"What does that mean?"
"It means I can't stop my body from going CWAZZZYYYYY!", as he does a wild wiggle dance all over the kitchen.
"Oh man...that's rough. It's just telling you to go craaaazy like that?"
"YESSSS!".

Geez...well I let that kid wiggle all over the kitchen. Because you know why? I was absolutely delighted that 6-year old was able to use his words to explain exactly what was going on with him, and why he was being such a little weirdo during dinner. I was also TOTALLY getting what he was saying. He was saying "I have to move and I don't know why!". If this continues to be an issue for him, I'm certainly not going to give him a complex about it. If it's an issue as he gets older, I'll just help him find "acceptable fidgets" that will help him out when he's in public and just has to get cwaaaaazy. I use them myself, so I'm expertly qualified to help him problem solve THAT action!

But for now, I was just proud of him that he was able to articulate himself so well. He wiggled, he got it out of his system, and then he came back to the table and had some ice cream.

Going to bed stresses me out...

...I just posted a little about this on ADDer World, but wanted to write a little more about it here, because I'm betting I'm not the only ADHDer with this problem: I really don't like going to bed.

I generally go to bed because I have to, not because I'm "ready". My brain is just too busy most of the time. I also get very worried about bed-time, because I don't like the idea of having to go lay in the dark in a quiet room, where sleeping is the objective. Plus, if someone is already sleeping in your bed, you can't talk to them. I'm getting anxious just thinking about it while I'm writing! Ack!

Sometimes I will try to sleep on the couch, with the TV on, and trick myself into sleeping, but then I sleep badly on the couch, because of the light in the room, so it's not worth it.

I've thought about a noise machine...to give my brain something else to focus on in my bedroom. But for now, I don't have to worry about it, because the anti-depressant I've been prescribed for migraines (nortriptalyne), seduces me to sleep...ahhhh. It's a bit of a relief. One less thing for my overactive brain to process, and getting a better night's sleep should also help put the migraine issue "to bed" too.

The minute they see "treated for anxiety"...

...in your medical file, people like to write off everything that comes out of your mouth afterwards. Please excuse me for what is about to be an EPIC post, but I have some catching up to do here...

I have clearly been absent from blog-land for quite a bit for the past couple of months, which is sad because I really enjoy the outlet for processing my mental health life. However, I have been essentially temporarily disabled by a medical mystery. And the healthcare where I live, here in Northern New England, is apparently on par with that of rural "third-world" nations (<---is that even remotely politically correct these days? Have I just dated myself as a relic of the twentieth century? If anyone out there happens to know a better, and less condescending term, please feel free to enlighten me!).

Having been basically healthy for my entire adult life, and having moved around quite a bit, I haven't had a regular health care provider, ever. When I began to have mysterious symptoms (which I'll detail momentarily) I realized that I needed to put my health insurance to use at last. I called the doc's office that my insurance co had assigned me to.

It went a little like this, first I left a message. Someone called me back...when I asked if they were taking new patients, they didn't answer the question, and said "Can I get your address?". I said yes and gave it to them. They never answered the question...ooookay...and we got off the phone. A few days later I received a packet from them in the mail. It was rather sweet, it contained a deceptively warm and fuzzy "care plan" that I had to fill out, telling them all about me, and it said I needed to send them any medical records from my previous provider. Well...other than my mental health records, I don't have a previous provider, so I didn't send or request any.

I sent the forms back and called them to set up an appointment, because I wasn't feeling well. They made it clear that they were way too booked to get me in with my regular person. And then the fun began...the nurse I was speaking with noticed that I hadn't submitted any "prior records" and proceeded to literally lecture me about this issue. I explained that I didn't have any. She lectured me some more: "Well SOMEONE is PRESCRIBING YOU MEDICATION for ANXIETY AND ADHD, aren't they?". This was delivered with far more snark than was necessary when speaking to someone not feeling well. I answered yes. "Well if YOU expect US to treat you for that then you BETTER send those records," she barked.

It dawned on me that not only did I not want to just hand over my psych records to someone so obnoxious and uncaring, but I didn't want to turn them over to ANYONE that I had never even seen the actual face of. I told her that I would happily share them if she would just schedule me an appointment. She told me there was "no way" I was getting an appointment without turning over my mental health records. Wow...really? Really. I explained that I wasn't trying to be defensive, but that I felt she wasn't really hearing what I was saying, and wasn't even saying I would never turn them in...that I simply wanted to me my provider face to face before sharing very personal information.

Sounds reasonable so far? I thought so...but she started lecturing me again...this time about how "if that's they way" I was "going to be" then maybe they "wouldn't be such a great doctor's office me for me anyway". I wish I was joking. This bitch was seriously evil. At this point, I'm feeling ill, and I'm on the verge of tears as this woman I've never met is yelling at me through the phone "yeah, well I think THIS conversation with YOU is about to be OVER" and I finally defended myself with an "OH IT'S OVER" and hung up on her.

After reeling myself back in, I called and spoke with their clinical manager, who apparently had already been filled in, and confessed that she was appalled and that this person should never have handled the situation in that manner. I thought this meant that everything would be good.

It was...for a moment. As per an earlier post, I DID have great appointment that week with a great doc who really got ADHD, which was cool. However, the next day, I nearly passed out at my office and ended up in the ER. My follow up appointment with my doc's office? Oh I'm pretty sure that the NP that I saw that day was the same one that bitch-slapped me on the phone.

Not only was she aggravating in person, but she speculated that I might just be depressed and not having a medical issue at all (I've been depressed...I know depressed...I wasn't depressed...). Then tried to tell me it was just sinus congestion that was causing me cognitive malfunctioning, near fainting, and disabling vertigo (I had already been treated for this via allergy management and hard core antibiotics, with no improvement in symptoms). She also make sure to lecture me about my medical records again, and then...THEN...read my test results incorrectly. Hilariously, it worked out in my favor that she didn't have my medical records from way back because I actually have a certain test that regularly reads as abnormal, even though it doesn't cause me any problems...she had no idea, and when I asked her about that test...because it seemed like she didn't know what she was talking about...she got annoyed and brushed me off with an "uhh...well uh...everything I'm looking at here looks FINE". REALLY?!

So I'm never going back to that office, and have switched...

After three ER visits and having docs around these parts pat me on the head, try to be coy in asking me about my "anxiety issues" and then give me an ativan and send me home...after I've nearly passed out at work and in a public place, can't drive, and am disabled my fatigue and cognitive malfunctioning. I've been missing work and am just barely paying my bills...at the ripe old healthy age of 34...I was in perfect health prior to this...and they're trying to brush me off as a crazy, simply because I have been treated previously for anxiety.

I also asked them if I could be tested for Lyme disease (it's VERY common in this area) and they were absolutely stunned that I would ask such a thing and couldn't understand why, since I was having the symptoms that people usually have with the disease, that I would even fathom such a thing. I was told it would be ridiculous to test me for it...I pushed anyway.

Fuckers. You know what DID make me panic a little? Nearly passing out in a public place...which isn't stressful at all, so of course I must have been being unreasonable...er...uhhh...oh, and you know what else makes me FREAK OUT? Having doctors tell me there's nothing wrong with me when clearly, there is something wrong. Having doctors literally refuse any additional tests because they think I'm just a mental health case and I'm over-reacting to being, you know, temporarily disabled. Oh, and not being able to pay my bills because I can't work, because I can't think in my native language....even though I recently completed a Master's degree. Oh, and I also am not stoked about being treated like I'm stupid.

So fuck that. At a family member's suggestion, I moseyed over to the ER at Massachussetts General Hospital, which, for those not familiar, is an AWESOME hospital. From the minute I was admitted to the ER, I was treated like a person. Instead of thinking about whether or not I had a problem, they said "oh...you have a problem...let's figure out what it IS". They didn't write me off. They listened. They heard what I was saying. And they gave me a neurologist to evaluate me on the spot...here at home, that takes about 6 months. I could have seriously been disabled for another 6 months and the medical "professionals" I was dealing with at my local hospital couldn't be bothered to give a flying wallenda about it.

I got a neurologist, I got an MRI, I got ANOTHER neurologist, and in total three full evaluations...guess what? I wasn't inventing a disability. They're pretty sure now that I'm experiencing a strange but not unheard of migraine condition because duh...I have a history of migraines and they were able to rule out all the "bad stuff". I haven't been taking any psych meds for a couple months now so I'm a clean slate, so they recommended a medication and referred me back to my home mental health center for a prescription.

I called and my provider was on vacation...I tried to tell myself to wait but I couldn't stand it anymore...so I called and asked for a prescriber at the office, whoever is covering for my regular dude, to please call me back. When their secretary said "honey I don't think we'll be able to do anything until he comes back" I actually burst into tears. She said "OH HONEY, DON'T CRY! I'LL HAVE SOMEONE CALL YOU RIGHT AWAY!". Someone did...that someone proceeded to give me a slightly less bitchy lecture about how I was probably just having sinus problems and should just get over it...is this an epidemic around here?! But I stood my ground...I told her to check my file, and read the recommendations from my FREAKING NEUROLOGISTS, and that I'd already been treated for sinus issues with no improvement and that I have a history of migraines and...and...and...I kind of just kept going until she said "fine, as long as you aren't taking anything else, there's probably no harm in you trying it".

Within 6 hours of my first dose, I felt like me again. Two doses? Even better...I seem to be regressing a little today but these things take time to become consistent even if they're working so meh...I'll give it more time. But after nearly two months of not knowing, of thinking I had a brain tumor, of having it implied that I was a cuckoo...I got what I needed, and I think it's working.

This is why it's so important for us to educate ourselves about our medical lives, and about our medications, and what our options are, and what our mental health options are. There are a lot of great medical providers out there, but there's a lot of shitty ones too. There's people out there who get C's and still pass medical and nursing school. We have to be able to advocate for ourselves, OR as I did, find family members who can help you to do it. I would not have been able to even get to all of my appointments without my family, and when I was having difficulty thinking I needed them to ask questions for me.

Don't ever let people treat you like you are not a person because you have a "mental health history".

I really hope that this drug continues to improve my situation...and one of the great things is that because it is also an anti-depressant, it will help me with anxiety. The neurologists were pretty pleased with themselves, having come up with that clever solution, treating the migranes AND the anxiety. That IS pretty crafty. And that they acknowledged it and came up with a plan...without making me feel badly about my brain? Very classy. Very, very classy.

So HUGE thank you to Mass General's Neurology Department. And fingers crossed for a continued recovery...and more blog posting...!