Thursday, July 22, 2010

Question For You...

I just got home from a short getaway to Milwaukee, where I have family... that was a mini-vacation that I so needed!  Yesterday was wonderful; it really kicked off summer!  Yes, it might sound a little late for that, but around here, summer didn't begin until July ... June was cold, rainy, and gloomy.  However long it lasts, this is the real summer kick-off!

So we went to the beach on Lake Michigan... just across from, well, here!  We have beaches, beautiful ones actually, right here in Chicago, on- you guessed it -- Lake Michigan too.   But I couldn't help but notice the vast differences.  I thought I'd put the question to readers of this blog; because my friends in places like Facebook or Twitter are people who live here, grew up here with me, or are in some way too close to "here" to give a good answer.  I'm wondering ... what is the general impression you have of CHICAGO?  The people?  The racial atmosphere?  The crime?  The culture? Fashion?  Like, if you have ever visited, or if you imagine yourself visiting, what do you expect you'd find, in either good ways or bad?  PLEASE don't hold back or worry about offending me!!!  I definitely won't be offended on behalf of a city; I'm not that type, please believe.  I'm really curious about how what I see living here for so long matches up with what others think, based on perhaps movies, rumors, or whatever else plants an image of a distant, unvisited place in our minds... 

I started to wonder about this, because Milwaukee is a completely different world, despite being another big city, with a diverse population, on the same lake, etc.  At the beach, what stood out the most to me, immediately, was that every color of person was there, all mixing together, all in line at the snack bar, all laying out on towels, etc.  In my experience, I don't see this at the beach in Chicago or the surrounding area.  The beaches I've been to have always been predominantly white white white!  Woo!  I mean, the glare from the sun, sand, water, and all those white people will hurt your eyes!!!  Hahaha... If you live in the area of the beach, then you have upper-class money, so that might be part of it.  I have no idea.    Without delving into the differences and the divides, which are always infinitely complex, it's just an observation.  If you know me at all through my writing, then you know I prefer the Milwaukee beach.  

So I'm putting the question out there; because I'm a passionate, if amateur, anthropologist, to the end.  No matter what I'm doing or where I go, I can't help but want to know how people are interacting and why and what influences their bonds and their conflicts.  Sometimes I wish I could turn it off, but I usually can't.  If I can't go directly to the source of something I'm wondering about, then I try to get my information from as direct a source as possible.  I'm a nerd in so many ways, always in pursuit of some (pseudo)intellectual study or curiosity, despite not holding a degree in it or getting paid.   Speaking of that, I should try to find a way to parlay all of this into SOME kind of job ... hmmm...

Well, moving on ... the day at the beach was so great... I really need the sun, the activity, the exercise:  my brother and I were paddling for our lives by the last leg of our Paddle Boat tour... sweat was pouring down my neck and my temples (the sweat pattern I usually think of a MAN having, ugh!!!), my brother was saying his legs hurt ... Oh it was very sad really.  For me, it was so pathetic.  I was an athlete growing up, always keeping to a strict regimen of workouts and "right" eating, etc.  I was a 3-sport letter (wo)man, etc., you know the type.  Honestly, only a little of my decline can be owed to lack of self-discipline or "laziness" or whatever.  It has all fallen apart as my Disorder(s) have had to become my priority.  I was thinking about that even before the paddle-boat experience; how I would really like to have my symptoms controlled, or better yet, gone ... to the point where I could do things like work and exercise regularly, routinely...  Those two words have become impossibilities for me over the last few years, and it shows.  Worse almost was having to learn to accept the fact that this was so.

Ever since my last treatment plan went into effect, July 2, I've been at least 50% improved in terms of pain, concentration, fatigue, and other major symptoms.  That is wonderful, for sure!  I am hoping so much that it lasts, that I can work with the doc to really fine-tune it over the next few visits, next few months, to build a trend of improvement.    But I just never know.  Two weeks is two weeks, no more and no less.  It doesn't mean it can't back-slide, but it also doesn't mean it can't get even better.  I have to do everything I can to support my body in healing.  I am so excited for the day that I really can LIVE again.  I haven't given up on that goal.  Last fall, I lived that for about 4 months, my longest run of good health ever in my adult life.  So I hope to get that goin again... 

Thursday, July 15, 2010

Notes from My Book-Selling Days...

As I might or might not have mentioned before ... I spent a lot of years as a manager in a book store ... a couple of different locations actually, all within one large book seller that you all know well (at least in the U.S. ... I think in other countries too).  I shant mention it specifically, but you know the type:  big store, selling multi-media, usually with entire sections - if not entire floors -- dedicated to Children's Books, DVD's, Music, and some sort of cafe.  I can actually only think of two big ones that operate right now, so take your pick.

Although working in the retail business in general is, well, hell on earth- no other way to put it, I did enjoy many parts of my career in the book world.  Actually, what I really came to learn and love was all sorts of new music and all about the music industry.  I suppose I applied to the job at first thinking that maybe, just maybe, I'd be placing myself in proximity to an author or agent or some publishing person that might, just maybe, "discover" me and MY writing!  What I learned was that in reality, the "book people" hardly ever had contact with us.  Books are churned out in printing presses, warehoused, inventoried, and ordered, all without any authors or agents being personally involved at all.  HOWEVER, the music situation was quite different.

I don't know whether it's the same now (it has been about 7 years since I left the biz), but when I worked at the stores, the music labels would send local representatives to each location on a regular basis.  For example, our rep from Sony would come and bring promotional cd's from new artists, sometimes from well-known artists with new work out, etc.  He was also in charge of all displays around the store having to do with Sony artists, so he would put up different posters and ads and the like, within Sony's given allotment of space.  The thing was, being a manager and developing a friendly relationship with these reps, yielded awesome results!  

Through Sony and a few other major labels (who also repped their subsidiaries and thus exposed us to some great new music not being played anywhere else), I was allowed to request certain cd's for my store or personal use, ANYTHING under their label!  I explored so many genres of music and different artists that I otherwise never would have heard about!  It was great, a real education, a FUN education!  The record labels also gave me tickets to baseball games and invites to their record label holiday parties (more freebies to be had!).  It was the closest I had ever been to being an "insider" of some kind!  It was really, really fun!  And no, I have no loyalty to the Sony conglomerate ... I just can't remember which label was which with some of the other reps!  Sony definitely gave out the most free shit.  :)

...The thing that got me thinking about all of my happy times in book world was earlier today, when I was having a phone conversation about authors and which stores in my area seem to get the best ones to come out for signings, etc.  We got on to the subject of emerging literary "stars," and how it would behoove these stores to grab such writers just as their star is rising ... later on, they cost too much!   My friend on the phone used Alice Sebold as an example, and we recalled how when "The Lovely Bones" was released, we were able to watch that book absolutely explode onto the scene, and the author emerge from anonymity to super-stardom.  

I was reflecting on what a cool thing that is to see.  At least, to someone like me!  As a book seller, we would go from being completely unaware of an author, literally having zero books on the shelf by that person ... to five days later being in full combat mode, trying to get the most copies the fastest and keep 'em coming!  It really happened that fast.  One Monday I would go to work, and I'd get a few phone calls inquiring about a certain title... I'd order it or give other information for the callers... Then throughout the day, I'd hear my co-workers ordering it, maybe I'd see a review in a daily newspaper, etc.  Throughout that week, calls and inquiries just reached fever pitch ... oftentimes one out of every two customers who entered the store wanted to know about this book.  By the weekend, I would receive notifications from our warehouses announcing dates and quantities when I could expect shipments of the title.    Usually over that weekend I'd see more reviews or a friend would mention reading the book, I'd see that the author would be appearing on this or that tv show ... and voila!  By the next Monday, everyone knew the book, its author, and we couldn't keep it in stock.  With "The Lovely Bones" and "The DaVinci Code" and others like it ... We'd literally stack them everywhere- behind the cash tills, behind the information desk, behind themselves on the shelf, up in the rafters, everywhere!  Because customers were always asking, and then you could simply grab one for them from ... wherever!  As a manager, it was astonishing at first to realize that even with books stacked to the ceiling quite literally, every weekend would see us turning people away until the next shipment.  Crazy.

Oh, and although the aforementioned titles, along with several other Best-Sellers of the past decade, were driving insane sales, nothing in my career ever, ever approached the hysterical and non-stop demand for the Harry Potter books.  I worked in the book biz when the last book came out in hardcover ... We had the local POLICE controlling the crowds ... who incidentally camped outside our doors all night to be first in line.  That was the front lines baby!  

Sunday, July 11, 2010

Skip This One if Open Wounds Gross You Out...

I do believe the blog is back up and running!  Haha, if it is, then you're looking at my robots-and-friendly-aliens background, right?  Probably won't keep that background forever, but it made me smile and felt sort of fun and whimsical...

Ugh, what a week!  I feel like the 4th of July, and that whole weekend was FOREVER ago!  I started it off with great news about my doctor's visit and all of the happy times I was (& still am, don't worry) expecting to follow ... but it seems I had some resting and waiting to do before diving into all those things I wanted to do when my headaches got better.   

And my headaches ARE better!!!!  OH HAPPY DAY!!!  GLORIOUS, SUNSHINEY DAY!!!!  For the past week, I have been nearly headache-free!  The couple of times I had the beginnings of a migraine, I took the lowest dose of medication possible, and it went away for good.   Most of the week, I didn't even need medicine.  Already!  The new treatments seem to be working already!  

However, I got this stupid infection somehow called Oral Thrush.  It's all been so gross, I won't even go into detail.  If you know what it is, well, then you KNOW.  So I got medication for that, and it cleared up within days, ok, no problem, right?  YES, problem... because I am prone to canker sores, which are painful when you have like one of them at a time.  Weeeelll, this week I learned about something called a Complex Canker Sore attack.  Yes, it happens just like it sounds:  attack of the canker sores.  A LOT of them.  Painful.  At all different stages of coming and going.  For days and days!  At its worst, I was in so much pain that even drinking to stay hydrated was almost too difficult.  All I ate was fudgesicles and a few milkshakes.  Swollen glands.  Extreme fatigue!  I was getting scared!  I mean, I have always been one to get a mean ol' canker when I've been under stress or not getting enough sleep or something like that.   In fact, right after my LAST visit to the doctor, I got one.  It was stressful, just like going into this one was.  But for whatever reason, this time the gates of mouth hell just opened up... 

Who knew that a stupid canker sore, usually no more than an annoyance, a sensitivity for a day or two, could render one unable to properly hydrate oneself?!  Aching with swollen glands?  Unable to do everyday activities because of the physical exhaustion/fatigue?!  Tomorrow, I'm s'posed to see the dentist unless I wake up completely healed or something.  I've got to remember to ask him whether this is, like, the absolute WORST case he's ever seen or something... that is, if he doesn't just fall out with shock from it all before I can ask.  That would pretty much confirm it.

Wednesday, July 07, 2010


UPDATE @4:55 p.m. CST.... It's a frackin' nightmare!  OHHH the humanity!  I can't tinker with it anymore tonight ... at least not until I have had a) MINIMUM one more cup of coffee AND b)ice cream in some form, preferably shake form.  Bear with me please!  xo

UPDATE @3:10 p.m. CST ... I grabbed a new template, took the one named "Awesome, Inc." (fitting, yeah baby!), and made sure the colors worked (i.e. didn't blind anyone and weren't invisible) ... I THINK we have a winner!  I fiddled with the width of different parts just to make sure.  The right margins, which hold my beloved "gadgets" will be dealt with next, as they now have the sickness.  STILL don't understand why Blogger would publish this mess, with words bleedin' out past the SET margins, but what do I know?  If this works, I'll keep it until I learn a little more!  I want to WRITE, not do graphic design dammit!  :*)

Yes, I see that the blog is bleeeeeeding
into the right column... a mystery, as the body
column has "set" borders and width ... I am
trying to get Blogger expert help with
this... but if any other users have any ideas,
by all means, chime in!!!

Tuesday, July 06, 2010

First, the Update!

...Thank you to everyone in my life, on the blog as well as in "real" life, who prayed for me or left comments of hope and inspiration either here or on my "social networking" sites.  I believe deeply in the power of prayer and putting positive intention or thought or ideas (there are a lot of different theories about this, with a lot of various corresponding terms, all meaning basically the same thing ... all of which I won't delve into at this time!) out into the universe, or if you prefer, into God's ear.  I know that it works, and you all helped me this past week!

As I said in the last post, my big, frightening doctor's appointment was Friday morning.  I had worked myself up into an absolute frenzy by the time the morning came.  Going against all that I know I should do in the face of anxiety, I just gave in and became hysterical.  I felt too scared and too weak to stop it.  I had the support of my friends and family though; they offered me their undying patience when I wanted to talk and recite every fear over and over again, and have them repeat back to me why they were all unlikely to transpire the way I imagined, etc.  

As it turns out, the appointment went EXCEPTIONALLY GREAT!!!!!!  I was wonderfully stunned!  It's somewhat rare in this life that we have occasion to be stunned in that GOOD way, actually shocked into silence over the pure joy and relief of an event.  I just soaked it in, speechless afterward.  When I could speak again, later, when I could at least think words in my head, I just thanked God again and again.  And I got down to the business of thanking everyone who has helped me.  

To be a little more specific, the doctor, with whom I'd gotten off to such a shaky start, was more than willing to listen to what has been going on.  He was very patient, even when he decided that my very last "quick question," posed as he was opening the office door at the end of the appointment, required a blood test.  He didn't act like that threw him off or I was making him late or anything.   I brought my mom IN to the office with me, but the conversation went so well from the start that I didn't need her to jump in or anything.  However, when the conversation turned to my A.D.D., she did provide support for my examples of symptoms that have been worse lately, as well as things we noticed as far back in my life as kindergarten or earlier (without knowing they were "symptoms").  It was good to have my mom right there, saying yeah, that is true, I saw it... 

One of my friends reacted to my good news by saying, Wow, was this even the same doctor as before??  And I get how he feels .... maybe a little cautious after those last few times when the doc upset me.  Like, what, is this guy Jekyll - and - Hyde and we are never going to know who he'll be at any given appointment?  But I'm giving him the benefit of the doubt now, because ... well, because the first appointment was one of many that he had squeezed in during what I think was a terribly stressful time for his office, maybe even for him personally.  When my former doctor disappeared ... there are just so many strange things about that.  When you look at all the facts (another time), you can only really deduce that my former doctor must have done something really bad, really PERSONALLY bad, to his boss.  I think it was personal, and their relationship ended.  So if that was the case, I can see why my doctor (current) would be going through a hard time.  Plus, he was trying to maintain order in his business, when all hell was breaking loose in every aspect.  He was nice to me at Appointment 1 anyway, just not very personable and we didn't get into much detail about anything.  So I had no idea what to expect...

The second appointment was the really bad one, the one that broke all my trust and had me reeling, terrified that my whole life and my condition were once again just blowing in the wind, with no advocate in a doctor, no one to trust or get help from, nothing.  That was the one where he switched my medicine without explanation, and he seemed just crabby and rude overall, and he told me he needed to test my liver and some other stuff ... seeming to indicate that it was due to my taking more of certain medications than HE would recommend (even though I was doing it on the direction of my previous doctor; not like I had just taken it upon myself to take these medicines extra or anything).  He told me then that he would like me to start tapering certain medications down to lower dosages, and I just left feeling like I should be ashamed or he didn't believe I word I said no matter what.  Like I was some kid in trouble or whatever.  And I truly hadn't done anything except follow the previous doctor's ideas and directions.  Ugh!  So I was feeling like a pawn between these feuding doctors...

Third appointment, I brought the big guns along:  MOM!  She is the funnies, friendliest, kindest, most sociable, personable person you could want to meet!  She's cute too!  But my mom doesn't play when it comes to her kids and other loved ones!  This Friday when I picked her up, before we had even left the driveway, and before she had even had a sip of her morning coffee, she stated with a dead-serious gaze:  "I will come out of a box! If he starts with you or isn't listening or something, I'm so serious..."  That's my mum.  She's fun and friendly and loves to laugh, but if you eff with us ... you'll wish you hadn't even gotten out of bed that day.  Haha!  LOVE HER!  So that third appointment was alright, I left thinking maybe things would be okay.  It wasn't great, but not as bad.  It's just that the results were bad.  My whole past six weeks has been awful.  And that is how I became so out-of-sorts leading in to my recent visit to the doctor.  It was a snowball effect, a combination of being at the end of my rope after literally 6 weeks of almost non-stop head pain and also out-of-control A.D.D. symptoms.  Add to that a developing pattern of fear and confusion around my appointments with the doctor I was still getting to know, and boom!  Mayhem.

And now?  Everything is good.  Old wounds are healed.  New hope is firmly established.  And I am going into this -- into my new treatments and into my fledgling relationship with the doctor -- with restored hope and excitement about building the life that I want.  Within the past ONE week alone, I have learned a whole bunch of new stuff about my two main disorders, especially the adult A.D.D., that I never, ever knew before!  And it has just kept building my hope that I can learn and grow and learn how to build the life I want.  It's so wonderful to feel and realize that everything is not out of my control!  Finding an accurate diagnosis and then finding a successful treatment are so life-changing.  For now, I'm basking in that relief and joy!  Thanks, everyone, for helping make it happen for me!

Thursday, July 01, 2010

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!