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!
2 comments:
Keep writing because your commitment to your blog seems to reflect a commitment to yourself, your readers and to getting the normal life that you want and need and to help all those who also want that for themselves. Your struggle is epic and to keep trying is truly a tribute to who you are and someone who is worth reading and knowing, if you are willing to share you! KEEP TRYING AND SHARING, T!!!
Thank you for your words of wisdom, "Anonymous"!! It's really encouraging and inspiring for me. And I do believe I know who you are by your tone and word choices. Bah, and you sometimes wonder whether I "know" you ;)
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