To the Doctor Again!

And so today, I had another doctor's appointment!  I hadn't expected to go see the doc again so soon, but his office needed to switch the appointment, then I needed to change it, and blah blah, here we were.  Sad to say, I spent the past week working myself up again into a full-on state of permanent panic.  Just like the last ... what?  four?  five? ... times.  When I first met him, then the next appt after that, then for SURE the last two times when I wasn't doing very well (those stories you already know), and now today too.  I'm a real piece of work, I have to say so myself.  


The great thing is, today went wonderfully, just like last time, JUST LIKE LAST TIME!  My mom -- BLESS HER (and I'll come back to that in a sec) -- accompanied me again, so that was wonderful; she calms me, helps me laugh even when I'm crabby and nervous, helps me find the I-Pass (because we pay tolls here in Illinois... heard we're one of only 3 states or something ... that true?) and everything like that.  She's the best.  But we'll get to her, like I said.


Mentally, I think I can say that I am convinced that this doctor is good.  What a lame word, good!  But what I mean by it in this case is that he is GOOD at what he does (he's an expert!); he's GOOD for me (our personalities don't clash); and he strikes me as a GOOD man.  I mean, I don't think I've ever gotten to know one of my doctors well enough to sit in true judgment of him or her as a human being, like, oh what a wonderful person that doctor is, so true and loyal and wonderful and charitable and whatever!  All I can know is that he seems to be genuinely trying to help me, not rushed when he's talking to me, not pushing newest drugs on me all the time, not rude to me OR to the people I've brought in with me to appointments (have had that one happen before!), and things like that.  I guess these type of things make up that hard-to-pin-down category of "bedside manner" -- although I sure hope never to be bedridden again by a migraine (and I suppose that's another story too).


I'm feeling blessed that this doctor does not even notice the chip on my shoulder that feels so heavy to me, so obvious all the time ... Or maybe it's not that he doesn't notice, but rather that he's seen it before, that practically ALL his patients trudge in burdened by the same, having been through the same before finding him or being "sent" to him from bewildered suburban doctors ... which is how I got there.  I don't know.  And our working relationship is still fairly young, but now it's solid.  And I'm feeling better about that.  I'm thinking that possibly ... probably, even ... next appointment will not make me piss myself for a week before-hand.  Maybe just the night before?  Ha.


Stay tuned for the bit about my mum ...

someone HELP me HELP myself!!

Whew!  It's been a grueling few weeks since I've posted... I think?  I didn't even look at the date on my last post, but I think it has been quite awhile.  I have to say that I hate when my favorite bloggers begin posting less frequently, then usually follow by neglecting their blogs altogether, posting once or twice every few months, or just leaving their blog to linger in cyberspace forever.  I hate that!!!  So I am resolved not to do that.  If ever I shut this blog down and concede that I am unwilling or unable to continue it, I will for sure make a closing statement of some kind.  Perhaps no one out there really considers me her "favorite blogger" by any stretch (ha!  except my mom perhaps?).  Nevertheless, I am committed to my craft and to finishing what I start.  Besides, I love my blog, even if I were the only one who ever read it.  I've always been taught that if you're going to do something -- no matter how insignificant you might think it will be or seem to others, or even to yourself -- if you're going to put your own name on something that you created or worked on or anything like that ... well, then you should give it 100% or give it nothing.  Maybe it's a bit of a cliche, but I live by that.  And it has always served me well.


Okay, so as you can see from my blog post title today, I need your help!  YOU:  anyone who has experience dealing with doctors effectively, getting treatment effectively, anyone who IS a doctor or nurse and can advise me on the best approach, etc.... I'll be much obliged for any "wise counsel." ...


Here's the short version of my story (the long is told throughout the past posts...):  Beginning one year ago, July 2009, I was put on the first treatment plan that truly changed my life, the first time in my adult life that something just made an incredible impact!  After seeing my headache specialist several times, we had come up with a medicine-and-other-treatments-plan that was working.  I mean it was WORKING!  I was happy, I was learning for the first time that all of this mess in my life (fired twice, had to leave jobs I probably would have been fired from twice, now on Disability, due to my physical illness but also this wild disorganization and decreasing trust or understanding of my SELF... just a MESS in my personal and professional life), and things were just wonderful!  I felt for the first time in my adult life that I was living a pretty-damn-near-"normal" life.  What I wanted to live anyway, the way I wanted to live.  Then that doctor I loved disappeared (another long story, but I was told simply that he's "no longer practicing").  Okay, that sucked, but I was transferred to his boss, who is the premier expert in headache management (and co-morbid illness like Depression, Anxiety, ADD, etc) in the Midwest, some would say in the country.  So I figured that's great, treatment-wise, that can only be a good thing.  It has been ... so-so.  He's hard to talk to, hard to read... I'm still learning and building the relationship there.  


So then three months ago, I was doing pretty well in terms of both my Chronic Migraine condition and my Adult ADD (a later-in-life diagnosis, which I'm still working on the right treatment for, still learning about).   And suddenly, h

e switched my ADD meds.  I took it personally at first that he suddenly wanted me to take a new medicine with no apparent reason why, when I hadn't complained of anything being wrong with the other one... Migraines are such a tricky thing; I can't imagine why he would mess with something that was working.  BUT for whatever reason, I decided to trust him and try it his way. (I've since learned that MANY patients and parents of patients have had new ADD drugs pushed on them with no explanation when nothing was wrong with their previous regimen.  I'm not even going to get into THAT right now).  

WELL ... here we are... I'm sick.  I went back to the doc about a month ago and he was fine with switching me back to my old, original ADD medicine.  I thought the switch was the reason for a sudden decline in virtually ALL my symptoms that occurred pretty much the same week he made that change.  But in the month since we changed it BACK, I have gotten worse, rather than improved.  So I need to take all of this information to him, and NOT come at him like I want to put him on the defensive, blaming him or anything like that.  I don't BLAME him, I just need him and I to work together to figure something out!  That's all I am there to do!  I need to tell him how things have been downhill, and I really want to come out of there with a plan, either a new medicine or a different dosage or something that we are changing to attack this... It can be more than one thing, whatever!   


This is where I panic.  My mom is going to come with me for support, which is wonderful.  I don't know whether she should come with me IN to see the doctor; would that benefit me or not?  See, the root of many of my problems is this weird issue I have with always feeling I need to PROVE that I really AM as sick as I say!  I have received feedback from everyone -- friends, doctors, strangers, boyfriends -- consistently telling me that I do not come across as "sick," even when I am in the Emergency Department after vomiting all day with my most severe pain attacks.  WTF!!!!!  I have analyzed this, and tried to work on it, because, quite frankly, that just won't do!  


For one thing, I am an Adult Child of an Alcoholic, and an Oldest Child at that!  We textbook cases VERY often learn to adopt an everything-is-A-OKAY-here! attitude even in situations that would dissolve others into blubbering messes of pale-faced snot and tears!  We are the ones who take CONTROL and maintain an AURA of CALM and NORMALCY even in the face of completely ridiculous and unacceptable emotional stress, living conditions, abuse, and what-have-you.    Until I had undergone many years of therapy, I never once even questioned this behavior in myself.  Oh my God.  I never looked at it, from the outside, and saw it as different or strange or ... anything.  I learned it as though it came from my own mind, as though it was MY TRUE personality ... that no matter WHAT hell is going on inside my home or inside of ME, no matter what nightmare I have just witnessed or walked right through ... no matter!  I can stand up, brush my shoulders off, and smile at you, a big white winning smile, dimple included, to distract you or charm you or make YOU feel BETTER.  I'm wonderful at this.  I excel at this.  I OWN this trait.  


And this has KILLED me when it comes to putting on the sick, hurting, wounded face for the doctors ... and I'm saying, when it comes to putting on my SINCERE, REAL face, the TRUE feelings that I'm having, which are SICK, DESPERATE for help with this ADD, with this PAIN which is constant, all of it, which has gone on SO LONG... I need help, I am sick, and I do not know proper ways to express it.  I know the WORDS, yes.  I can say the words to the doctors, but I have almost always been met with some skepticism that things are not as extreme as I'm saying.  Frequently, I've been met with much worse, with outright disbelief, with the opinion that I'm just plain FAKING, that I must be there for the pain drugs, for the stimulant drugs, to party it up or else go and sell my prescription meds, to get an I.V. shot of some "good stuff," these are things that have been strongly suggested and even outrightly stated to my face by the medical  profession.  


I'm here to say to my doctor tomorrow that nothing could be farther from the truth.  I am so distraught, so at the end of my rope, so TIRED and SICK of fighting the pain, fighting the pain triggers, fighting the disorganization and utter unruliness of my own mind ... all I want is to learn how to treat it and for us to do that.  That's all I want.  I don't want to party, I don't want to abuse drugs, and yes, I am aware that many people get "accidentally" hooked on drugs, and so I if we use that type of medicine, I will take all precautions and use as directed.  If we can whip these disorders, these symptoms, in another way, that's wonderful too.  I have come to believe, personally, that a combination of healthy eating, moderate exercise (oh, because strenuous causes "exertion" headaches, which are among my absolute worst), prescription medicines, and therapy are the key.  I just want him to understand me, believe me, and help me.  For some reason, every time I go to the doctor, I feel like a person going before the Court to plead her case.  It shouldn't be that way, it just shouldn't.


If anyone has advice on success approaching doctors, success asking for and getting good treatment, success communicating with medical people ... well, like I said, I'm open to advice!  I'm going to write my questions and comments down on a note card, and then just give it to God, having faith that He will guide my physician and myself to wise and healthy treatment for my life.   So even if you don't have advice or experience with this stuff, prayers and good vibes are appreciated too! 

I'll be posting to let you all know how it went!

Psych Stuff

Well, what should I say?  Where to start?  I haven't been writing as much as I'd like, but I'm doing a little writing in my own journal... meaning my personal paper-and-pen one.  I work out the absolute darkest, most difficult shit there usually.  Sometimes I expand on those issues here.  Sometimes I just keep notes on stuff that I might want to explore in depth later or events in my life that I know I will want to remember just the way they are.  I really love having a journal, and writing is just IN me.  I have and always will write, whether I get paid for it or not.  It's just who I am.


So it's difficult when my "issues" (for lack of a better term) get to me and even take my writing away.  My doctors think that I have Adult ADD, but as with so many things, they haven't really said it's for sure; rather, they just try different meds and treatments for things, and if they work, they work.  My doctors never seem to label the disorder at the root of the emotional or physical pain.  Anyway, it has been suggested that I have my severe Migraine Disorder as a physical illness ... and then this ADD (only discovered / explored last year!) thing as a mental issue ... and a by-product of the suffering these two little bastards have caused is Depression...  yay.


But it's tricky, this stuff, isn't it?  They say that attention problems might be the secondary issues actually ... from medicine, from depression, from sleeping problems... all of which I have sometimes.  I swear that when I'm not in pain and when I don't have raging ADD symptoms, I am not depressed.  That suggests to me what I described in the last paragraph.  That is the right diagnosis, according to what I feel.  But the docs just seem to think that it doesn't matter so much what you ARE, what you HAVE and what it's CALLED, as long as we mess around with chemicals and everything enough to make it better.  I think this is weird.  Do they not talk to me more about diagnoses and things because they think that I, as a layperson, am too dumb to get it?  Or do they just not give a shit?  Or do they truly not focus on that stuff anymore ... like, maybe they feel it's detrimental to be teaching patients to label themselves "depressed" people or whatever.  I'm not sure.  I'm gonna press each of my docs next time I see them for more information.


I didn't do shit today, and I'm not planning to.  I mean, I get so frustrated with myself and with these disorders or whatever.  I always make a plan to wake up early and get going ... Meaning, I want to get up and maybe work out and then get in the shower and be clean and ready, ya know?  But it is more frequently the case that I wake up with a headache or just sluggish because I didn't sleep well or whatever... both sometimes.  So I drink the coffee, and I try to pump myself up a little, and I make lists of what I want to accomplish ... But then the headache will refuse to go away even with medicine, or I just can't seem to get the energy.  It's shitty.  Soon enough it's late afternoon, and nothing is done.  


I allowed myself this for awhile.  It's been just under six months since I received my disability qualification.  For me, that was a blessing and wonderful news.  Sounds crazy, but life has been crazy in the past couple of years.  If I didn't stop the rat race, the craziness that was taking hold of life for me, which I have spoken of before, I would have just shriveled.  Maybe I would have died eventually.  I don't know, but everyday was worse than the last...


So I knew that I needed to rest and just get myself together, being gentle with my sick self and just letting the healing and energy come back to my spirit.  At first, in the first three months maybe, everyone just went NUTS at the change in me... I mean, they were happy and glad to be around me and happy FOR me, you know?  People constantly were telling me how much light and energy and just a glow or something had returned to me.  And now ... Now I think that I lost some of that along the way over the past couple of months...


To Be Continued ...