Beyond Blue

Beyond Blue


The Courage to Change the Things You Can: On Becoming Your Own Best Advocate

posted by Beyond Blue

If you think about it, the Wizard of Oz is really about the Serenity Prayer. The tin man wants a heart to be able to love the things he can’t change; the lion, some courage to change the things he can; and the scarecrow, a brain with which to know the difference.
Most of my life I’ve begged the wizard for a heart … to be able to accept my hand of cards and play them gladly, no resentment whatsoever for the suicidal ideations, lovely medication side effects, and other heath conditions that make me feel as though I’d fit right in with the rowdy crowd at our local diner’s early bird special.
But this month, I’m concentrating more on acquiring and using courage … the courage to become my own best health advocate, to fight back against a corrupt and dangerously incompetent medical system in this country, to fire the doctors who could care less if my symptoms worsen or impede my recovery so that I flip the bill for the surgery required down the line.
Don’t get me wrong: I believe in medicine. I believe it is our friend and ally in the war against mood disorders and other illnesses. It’s the professionals administering the pills I’m worried about. Some of them are brilliant … like Dr. Smith, my psychiatrist. Many are not. And I’m no longer going to tolerate the ones that do not hold my hand as I do everything I possibly can to acquire good health … not just for my limbic system, but also for my endocrine system, my respiratory system, and my entire nervous system.


If you’re confused and have absolutely no idea what I’m talking about, I suggest you ask you doctor for your medical records. Gauge her response. It’s a telltale sign. When I failed to procure my mental health records from a psychiatrist I used to see after three written requests plus a few verbal ones, I knew it was time to leave. Last week I camped out in the offices of my endocrinologist because the first two efforts at obtaining my records over the phone were blown off.
“You know what,” I told the assistant, “I think I’ll just come in and hang out in your offices until I get them.” A half-hour later, photocopies were made and I went home with an ambitious assignment: to learn everything about my pituitary tumor that I could, as well as the side effects of the medication I am taking, which–surprise!–may be responsible for most of my cardiac and respiratory problems.
I began to study the endocrine system just like I did the limbic system three years ago in order to better understand my mood disorder. The results were fascinating … which I’ll share in a future blog about the mongo role of the hypothalamic-pituitary-adrenal (HPA) axis and the correlation between specific hormones and mood … think PMS and you have an idea of what I’m talking about.
For some reason I thought that my journey down the endocrine and cardiac paths would be better paved than those I’ve traveled in my mission for good mental-health information. Because, let’s face it, most doctors don’t understand mood disorders, and many stare at me as though I am speaking about my imaginary little friend when I mention that I am on a mood stabilizer and two antidepressants. “Oh … I see,” they say, waiting for me to add some other nugget of odd information, like I love to picnic at nude beaches and offer peanut-butter and jelly sandwiches to the masses.
So down the yellow brick road I go in a quest for courage. Lots of courage…. to camp out in endocrinology offices all over the world until I get my BLOODY records; to ask the necessary but unpopular questions (“If I don’t want to have surgery down the road, what can I do now to help prevent that?”); and to seek the opinions of the foremost specialists (Johns Hopkins … the Land of Oz) in a given field, i.e. cardiology and endocrinology.
A Beyond Blue reader recently shared with me this quote from Mary Anne Radmacher: “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” Maybe, just maybe, she was talking about securing her medical chart.
To read more Beyond Blue, go to http://blog.beliefnet.com/beyondblue, and to get to Group Beyond Blue, a support group at Beliefnet Community, click here.

To subscribe to “Beyond Blue” click here.

rss.gif



  • Annapurna Moffatt

    It’s the Scarecrow who wants a brain–the Tin Man wants a heart.

  • Tom

    “…and other heath conditions that make me feel as though I’d fit right in with the rowdy crowd at our local diner’s early bird special.”
    I take it that you’re not planning to be an AARP spokeswoman twenty years from now (burned down that bridge:-), though I do admire your sense of humor. I too would be hardpressed to overcome the difficulties of life without one. Now all you need is to cross paths with a scitzophrenic, a multiple personality disorder, and you’re off to see the wizard! Wouldn’t it be ironic if Jim Carey turned out to be behind the curtain, telling you you don’t need meds, just a healthy diet, some urbal tea, good yoga, and vitamin supplements?

  • Margaret

    The medical community seems to think we are all stupid and wouldn’t understand what our medical records are saying. It makes me angry and I applaud your efforts to get your records and read them for yourself.
    I like to read over my lab/blood work report. Haha, I’ve had one doctor grab it out of my hand in anger. Obviously, I no longer see him.
    My PDoc probably would let me see his notes, but I’d rather not look over them.
    All our medical records are our property. We have the right/need to read them. It always helps to more fully understand our conditions, especially when we need to make a serious decision for treatment.
    YOU GO GIRL, I’m proud of you,
    Blessings and God’s Peace in your heart -

  • Margaret

    Also, it’s very difficult to get all the time you need with our Docs. I went to my Primary Care dude, with what I knew was bronchitis. He didn’t even look at my ears and throat and didn’t check to see if any glands were swollen in my neck. I did get the antibiotic I knew would work. But, when I wanted to give him a quick summation of why my immune system had taken a crap, he looked at his watch. So much for our physicians wanting to know the complete person.

  • http://www.paintingforcharity.co.uk Raykmond Van Neste

    Hi Therese
    After reading your blog about the medical system there in the USA and your experiences and blocks placed in your path to getting some sanity and humanity, I just want to say to you well done for fighting back and well done for putting some common sense back into systems that have forgotton about common sense and normal human need.
    You won’t believe it but here in London UK the system is probly even worse. Recently, I experienced an injustice and complete incompetence and lack of care from a General practitioner here. After years of this I’d had enough when one day at the same practice and not being able to see my own GP for two months (because he was on holiday) and seeing a stand in I’d really had enough when this particular doctor was rude in the extreme, made some horendous mistakes when examining me.
    However, even after all of this I didn’t consider complaining since I’ve never complained before but one thing that this stand in doctor did was to do a procedure on me without telling me what she was doing, without asking me if it was ok for me or asking me for permission. My circumstances are different to you but my experiences with the medical authorities here are making me feel that I’m living in a developing country. In my spare time I campaign for elderly people and have a group on Beliefnet called: ‘Painting’ which uses art and crafts to raise money to help elderly people around the world who need our help the most. One of the highest level of complaints about the way the medical system here responds to older people is that the system ignores older people’s needs and expects them to accept whatever is done to them.
    I’m not old (same as you) but having a procedure done to me without my consent by an incompetent doctor made me realise what is must feel like for an elderly person to undergo the same lack of humanity and to make an older person suffer an indignity. I was also upset at the stand in doctor’s remarks to me and could not believe that she spent most of the meeting by typing on to her computer everything that I said to her. Since this time I have similar to yourself undergone a search for some sanity and normality by writing letters to the Medical council. The outcome in my case was that the doctors concerned (one of them apologised) underwent scrutiny from the medical athorities.
    I’m currently approaching further authorities to get to review my medical records after allowing incompetent doctors to write all kinds of garbage about me and to which I don’t get access. I really believe that sometimes, just sometimes it’s necessary to fight back! So, Therese, keep it up and I think you are doing a great job.
    Ray

  • Your Name

    Dear Therese, I agree completely. Courage is what we need most, and I find it wanes so quickly with the lows of depression. We need the courage to advocate for ourselves and stop letting the doctors have their say and just accept it. So hard to do. Especially for me.
    One of my best tools for survival lately has been listening to Louise Hay’s CD on affirmations entitled “You can heal your life.” It has really helped me to understand how much power we have, even when our courage dissipates.
    I am writting to you from a hospital for asthma treatment (5 days now)and you may be aware of the terrible mood swings one can get on steroids. Since I have depression and anxiety disorders and personality disorders the staff here was thinking my weepiness and depression was due to not having enough psych meds and I had to call my psych. (I am out of town) to have her explain my psych drugs are doing just fine. It’s been a daily battle and I do just what you said. Every night I say tomorrow will be better. And I continue yo say over and over, I accept perfect health now. Maybe someday I’ll believe myself.
    As always, thanks so much for what you share with us. I have always thought of you as one of the most courageous women I know.

  • Your Name

    Thank you. I only read this quickly, but chords were touched.
    Early alcohol abuse (age 12-13, treatment for depression, then misuse of antidepressant meds, led to two decades of mistreatment, various sorts of abandonment — educational, clinical, and personal. Addictive disorders thrive in such realms — not to mention that I was periodically suicidal, self destructive, isolated and very lonely.
    I needed a sober advocate when as a preteen I began to show signs of slow or abberant development — not substance use, not psychotherapy (or the chemical barrage related to such care).
    I think I’m whinning. Sorry.
    I’ll be 60 in September, sober for 28+ years, drug free (including psychopharmaceuticals), married, working (part time), and wondering what those early years of medical / psychiatric records actually said. Hmmm….

  • Your Name

    I write this about my friend Betty, she is very over weight and has recenly learned that she has diabetes. She has always had trouble with her doctors, she tells me that they don’t help her. Right now she suffers from vertigo, from a early injury, and a knee that gives out and then she falls! She does not make appointments for herself like I would, She has told me that she has wanted to have a lap band proceedor done but nothing has been done to make this real. She uses mediaid (paid by the state) when she has medical problems and must see a doctor. I am afraid for my friend.

  • Your Name

    I have finally found someone who sounds like they feel the way that I do. I do not have health ins. as we can’t afford it. We moved to Ca. a year ago, because my father-in laws wife died and he is a diabetic. I was born and raised in Ia. and that is where my whole family is. I have three grown up daughter’s and two step- daughters that live with us. I have been through alot in my life, I am 43 yrs. old. I can’t get help, I have been everywhere asking for it. After we moved here I sunk as deep in a hole as I care to. I finally decided if I was going to get anywhere I would have to do it on my own. As far as I am concerned the entire medical field don’t care about anyone anymore, only money. I bought me abook about the brain, read it, tried to explain to the medical field again what could be wrong with me, again money.. I decided the only way out of the hole was with God and myself. I am not fixing the problem because I can’t get the help that I really need, but everyday I at least feel a little better…

  • Ellen

    I enjoyed this analogy very much. I’d never though of the characters in terms of the serenity prayer before.
    One comment: Please correct your spelling: “If you’re confused and have absolutely no idea what I’m talking about, I suggest you ask you doctor for your medical records. Gage her response.” Correct spelling is “gauge”. I’m amazed that most website professionals don’t take the time to proofread before they post. The people of the US are becoming very ignorant, and they accept spellings as correct when they’re not. I know you understand what I mean!
    Thanks again for all that you do! Beyond Blue is fabulous!

  • Karen

    I very much understand what you are going through. To get doctors to listen to you and believe you about your own body is hard enough but to try and take control of your illness is unheard of. Why they do not want to share your medical records has always baffled me. They are our records and we should have access to them at anytime (without cost).

  • Your Name

    Yes, the analogy to the desire for a brain, heart and courage is
    certainly what the Serenity Prayer is all about. I have prayed the
    Serenity Prayer so many times at meetings and alone, that I feel
    like I have courage stored up. That is good, as I think something
    happened here today, though I thought I had prewarned my departure.
    Maybe prewarned the wrong people. For what ever reason, someone is
    standing on guard right now outside. It makes me uneasy.
    As far as the medical records, I have found that when I get the medical records, in the past, the doctors refuse to see me again.
    Therefore, when I get my medical records, it’s a done deal, and I
    will have to find a replacement. Around here, it would be someone perhaps even worse. Am I dying? I didn’t know I was. Someone forgot to
    tell me I am dying. Another something being held from me. Glenda the good witch.

  • Your Name

    Therese,
    What courage you already have! Being you own advocate is so important in all aspects of life I think. I love reading Beyond Blue entries. What wonderful encouragement from all who write in…even if their circumstance is not the best at the moment the idea of sharing and openning up helps all who read both the main piece and the comments.
    I can personally relate with empathy to many of these stories. My prayers for healing and wholeness and joy are being offered on all who commented. Never give up believing it will get better. Our awareness of the reality of the health system’s “imperfect” protocols, and sometimes the incompetant staff as well as some un-caring individuals can give us all the motivation to make a stand and make a difference. All comments I read here are written by people who are positive role models helping others to cope and knowing they/we are not alone. All of you being on this planet makes this world a little better. From your suffering you show others how to make it through. You matter and I thank God for you !

  • shirley

    I worked in a medical office for years in medical records. I think everyone who has ever had to obtain a record has has this problem. Most offices now have medical records electronic. This idea is fabulous for the medical professionals to share your records online but, it has not made it easier to get copies of your records. Be patient because this too will change. Pretty soon you will be able to get your records online and request them online. You will also be able to take your CD or chip with you to your appointments.
    The best advise ever…get a complete copy of your records. As many as you can. Keep these on paper until EMR is functioning properly. Once you have all your records, every time you see a Dr, get a copy of the chart note and ask for it to be mailed to you or come pick it up. Your lab work should already be mailed to you every time. If not, make it so.
    It’s YOUR JOB to keep your own medical records. After time they destroy them them anyway. Your records can also be lost. I have seen it many times.
    You would not believe the size of my records. Its about a foot wide in my file cabinet. If I ever get bored, I can always scan and back them up on a drive.

  • Pepi

    I don’t have a medical problem, but a divorce one. I am going through the divorce system for 3 years now. It is terribly
    frustrating and costly. I have heard from other women regarding
    their exs and need for controlling and continualling adding to
    your attorney fees. You are so right when you say, sometimes just
    continuing day by day is courage in itself. I truly believe that
    and that will hopefully be enough to sustain me through this
    never-ending process.
    Thank you for your insight.

  • mary margaret

    those flying monkeys are my negative thoughts… more ammunition to depression (the wicked witch)

  • mark g.

    thats what im talking about give it all to god.and what things happen..

  • MIRIAM

    BRAVO…TO SHIRLEY FOR HER ADVICE…I HAVE BEEN WORKING IN MEDICAL OFFICES FOR 20 YEARS AND YES IT IS VERY IMPORTANT TO KEEP TRACK OF YOUR RECORDS…I WILL SEEK TO FOLLOW MY OWN ADVICE!

  • Your Name

    Loved this! I’m 19 and have suffered from sever anxiety since i was a kid. I was completely better for YEARS until i hadn’t a sudden fight with it at the rip old age of 17. My doctor pushed some lovely anti-deppressants and a tranquilizer on me which, what a shock, side-effects include PANIC ATTACKS!!! hahaha…not amused. So about two weeks ago with the incredible help of my family i was taken off all these meds..went four days without sleep, screamed for no reason, had no appetite, and developed anemia. The whole experience has me saying “thanks loads doc, but I think i’ll do it on my own.

  • Your Name

    That is exactly how I try to live each day as a day as courage, as well as trying to life the Serinity Prayer. Some days it helps and other days it doesn’t. I have been in a manic state for almost 2 weeks now and it feels good to me but I am driving my family nuts and probably my friends but they won’t say anything knowing I am Bipolar. I have type 2 so I am sleeping but don’t stop and can’t carry on a conversation without messing up words, or talking on and on and on.
    Thanks Again for your messages they help me more than you know.
    God Bless
    Leeann

  • Your Name

    Part of courage is seeing the ridiculous amidst tragedy…. you cant change the cards you have been dealt, but if you as a person, have suffered or is suffering, the greatest act of courage is to laugh at the future or the unknown. as well as the past….. let the endorphins go off and enjoy the journey.—healing does come Too many people look in the rear view mirror and harp on the past…. waste of energy… you will generate a lot of heat and very little light…. Instead, I have found it is courageous to laugh at the ridiculous… like the injustice of some things… big things little things..if people are that dumb…. laugh at them, forgive them ,and move on to positive people that dont capitalize on mistakes or poor choices…..afterall–. those are the type of people, who help …. you earn a PHD in Patience 101…. Do we really need two PHDs in this Economy… how about one in Laughter101 It takes timidity-baby lion- like attitude to smile at bad situations and it takes Mature Lion King-like to laugh at and see the humor in certain situations….. results????= you will be alot happier trust me I know!!!!

  • Your Name

    Courage….so hard to get and real hard to keep. As a Bipolar and medicated for the last 22 years I can say I would not be alive to day without medication. I have many dead relatives from this disease who refused to acknowledge this disease and further refuled any help. There is no better feeling than a manice faze, however it has been a very long time since I have had one. I still have mood swings but nothing like the past. Sometimes I would like to go off the med and see if I am cured…lol Not a cure! I am about to have rotator cuff surgery in 2 weeks and my anziet is heavy…this my friend is where courage comes in…I am truely scared beyond belief….pray for me. I am so thankful for all the support from my family..I would not survive with out it.
    Laura S

  • Your Name

    The drop makes a hole in the stone not by its weight, but by constantly dropping.

  • Ydnac Silva

    I understand that i should pray on the things that i know i can change,but i put in GOD’s hands all that i cannot change and i pray for GOD to let me see and know the difference. This is what works for me! God Bless Y.S.

  • DuNn

    The title: “The Courage to Change the Things You Can: On Becoming Your Own Best Advocate”
    The title is miss leading for what I have read it is not to find courage to change the things you can by becoming your own best advocate? BUT… to be able to accept the hand of cards you were dealt and play them gladly, no resentment whatsoever!
    So far what I have read is basically telling you to endure and except the things you cannot change…for most people who have not had a very good life because of illness or just plain bad choices in life. Courage and advocates: “waking up everyday” is just part of that courage and finding your own best advocate “Is just the fact that you got up that morning”.
    Is it a question of ignorance, silence and fear that the only good that can come out of this “Is to Learn to Endure and gladly except and laugh off all the bad feelings, bad choices and/or bad health each day”?
    Is this the devine resolution? I myself I don’t know? But thru 53 years of living I have learned to endure and except with a big smile on my face. Almost comical but realistic!
    As humans our world HAS become a blank deck of cards……………. either you ENDURE or you EXPERIENCE. Selected few experience but many more endure “Why do YOU think that happens”………
    Until YOU can answer that question –
    continue to ENDURE…..

  • Mateo

    I am my own miracle– I’ve learned through everyday mental and physical pain that you have to internalize this phenomenon, realize it and put it into DAILY practice —- ADVERSITY BREEDS STRENGTH AND COURAGE .

  • Your Name

    ACCEPTANCE…
    of self,circumstances,and others.
    ACCEPTANCE without judgement….
    is the KEY to HAPPINESS!! God Bless and Happy Easter!

  • Your Name

    I am so glad I found this. I have a pituitary tumor, I don’t like taking the medication because of the side effects also, but yet sometimes I can’t stand myself. I have considered surgery but I would much rather deal with it naturally then have it removed. Please know I completely understand the moods. I have also had my thyroid radiated so therefore I feel as though I have a double dose. If you have any suggestion please let me know. I am really having a hard time with this.

  • Your Name

    3-E Therapy: Enthusiasm, Effort, Endurance
    that in itself will give you a lot of experience
    The enthusiasm you possess is your spirit.
    Without spirit effort will not be so great.
    That will determine how you endure.
    The question that was asked me: Do you just want to endure?
    My answer No. So maybe you need to be careful what you pray for.
    God is the answer. He still performs miracles. Seek to Find.

Previous Posts

Seven Ways to Get Over an Infatuation
“Bewitched, bothered, and bewildered am I” wrote US songwriter Lorenz Hart about the feeling of infatuation. It’s blissful and euphoric, as we all know. But it’s also addicting, messy and blinding. Without careful monitoring, its wild wind can rage through your life leaving you much like the

posted 12:46:43pm Feb. 19, 2014 | read full post »

When Faith Turns Neurotic
When does reciting scripture become a symptom of neurosis? Or praying the rosary an unhealthy compulsion? Not until I had the Book of Psalms practically memorized as a young girl did I learn that words and acts of faith can morph into desperate measures to control a mood disorder, that faithfulness

posted 10:37:13am Jan. 14, 2014 | read full post »

How to Handle Negative People
One of my mom’s best pieces of advice: “Hang with the winners.” This holds true in support groups (stick with the people who have the most sobriety), in college (find the peeps with good study habits), and in your workplace (stay away from the drama queen at the water cooler). Why? Because we

posted 10:32:10am Jan. 14, 2014 | read full post »

8 Coping Strategies for the Holidays
For people prone to depression and anxiety – i.e. human beings – the holidays invite countless possibility to get sucked into negative and catastrophic thinking. You take the basic stressed-out individual and you increase her to-do list by a third, stuff her full of refined sugar and processed f

posted 9:30:12am Nov. 21, 2013 | read full post »

Can I Say I’m a Son or Daughter of Christ and Suffer From Depression?
In 1 Thessalonians 5:16-18, we read: “Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” What if we aren’t glad, we aren’t capable of rejoicing, and even prayer is difficult? What if, instead, everything looks dark,

posted 10:56:04am Oct. 29, 2013 | read full post »




Report as Inappropriate

You are reporting this content because it violates the Terms of Service.

All reported content is logged for investigation.