Arm Yourself With Knowledge

 

I can’t tell you how many times I’ve thought of a great idea only to forget it five minutes later. Then I get frustrated enough to pull my hair out because I can’t remember what I was thinking about, and then five minutes after that wonder why I’m upset. The best part is when I completely forget the whole thing ever even happened just five minutes after that! Sound familiar?

Yes, luckily for me my sister hasn’t shipped me off to the psych ward since she’s been a witness to these mind mishaps of mine. She views them as free episodes of her favorite novella soap opera! “La Brain Fog Strikes Again”.

Oh the joys of lupus.

As we are taking a stroll through my memories; there is one memory in particular that comes to mind quite often….the doctor visit.  I know some of you are cringing right now revisiting your own “Days of Our Lives” worthy doctor visits, but I promise we’re not re-living these moments in vain! 

You know the drill, being shuffled into the examination chair, then being asked a checklist of “lupus criteria” symptoms. Though it seems to me that no matter how often I mention the pain in my face or the swelling of my knees, it never seems to be occurring on these visits. Every time I mentioned an ache I receive an eye roll. When I mention the possibility of pain management medication, I am given the stupidity stare. It is as if all my doctor heard me say was, “Wah Wah Wah Wah Wah…”! I felt like it was perceived that I wasn’t in pain unless I crawled into my appointment on my hands and knees.

After shuffling back home in defeat, I decided to change my tactic. If my doctor didn’t want to step up to the plate then I was going to become my own advocate. I made the pledge to take my health into my own hands and become proactive. I subscribed to Google news for all lupus articles, which is great because as soon as an article about lupus hits the web, I receive an email about it. I decided there was no way I was walking into that office and not be armed with knowledge. I started attending panel discussions where the latest scientists discussed their groundbreaking discoveries in lupus research. Most importantly, I researched the various ways lupus can affect the body along with all of its symptoms. I learned what my symptoms were and what parts of my body were experiencing high lupus activity. I made it priority to talk to other lupus patients and compare pain and possible treatment options. I was able to write down possible medications and therapies to ask my doctor about.

All this I recorded into what I like to call my “Journal of Hope”. In it, I record everything that is lupus related.  I document waking up in the morning, my emotions that day, what I am eating during meals, where I feel pain, and when I take my medicine. The next time I was due to see my rheumatologist I was armed to the teeth!

I marched into the doctor’s office (well, more like hobbled but I’d like to think it was a strong stride!) and laid my journal of hope across her desk and rambled on in vivid detail what all my aches and pains were that week, what organs she should check, what kinds of tests she should run or refer me to take and possible new treatment options. I paused occasionally to glare at her over my glasses (took me 2 weeks to get it right!) just so she got the full effect of my “I am an educated patient and will REPLACE you should you fail me stare”!  It was the first time in a very long time that I was able to actually remember details of what the previous weeks were like for me. I even made shocking discoveries and realized certain foods caused me to ache more.  This was all because I chose to be an advocate for my own health!

The good news is my rheumatologist now views me in a different light. I think she thought of me as a “make-believe pain” patient whose quest in life was to have meals of pain pills for breakfast, lunch, and dinner! These days, she listens more attentively, does some research on her own and is finally lowering my steroid dosage due to low activity readings in my blood work.

I’d like to say my Journal of Hope had magical powers, but the truth is that when we become “hands-on” patients and take charge, our doctors are forced to listen. Don’t be afraid to assert yourself with your doctor. They are paid to help you and if you feel they aren’t doing their job, it’s time to request those medical records and get yourself a new doctor.

Believe me when I say NOTHING lights a “let me do my job now” fire under your doctor like suggesting you’ve heard of a better rheumatologist elsewhere! Take charge of your health. Your life is in your hands and you truly deserve to have the best care!

 

Article written by Staff Writer, Tiffany Marie Peterson

Tiffany Marie Peterson is a 25 year old New Yorker whose goal is to go from lupus to living! She was diagnosed with lupus in January 2010 but experienced symptoms for more than six years. Now that she finally has a name for her illness she’s determined to shine a light on the bright side of lupus. She spreads lupus awareness by writing for several websites including her own personal blog where she bares all on her journey with lupus. Her favorite motto “Knowledge is Power. www.hersilverlining.blogspot.com

©2024butyoudontlooksick.com

  • Bravo Tiffany…. you have to be an e-Patient and be a partner in your health management and care plan. I am a nurse and I have Lupus and OMG I have many days of brain fog… it gets foggier with age. I am in Pain Management because I also have a blood disorder that prohibits steroids. I love your journaling and I agree that MS Outlook calendar is great, I also use Evernote web-clipper for good articles I want to remember… be well and God bless.

  • Stacey

    GREAT! Thank you so much. You inspire me. Im finding me a notebook now. May God bless you & strengthen your mind BODY & soul.

  • Shanann King

    My memory is so bad sometimes I completely forget why I was mad. My boyfriend is lucky because I cant ever remember why I was mad at him. He’s the dummy though because he will remind me. lmao.

  • Shanann King

    I have been doing a journal for about 6 months now because by the time I walk into my Dr appointment I either forget how I have been feeling specifically or I feel ok that day so my brain freezes because of excitement of feeling good finally. I hate my Dr I actually had him tell me that any Dr in the area would tell me the same thing. So I made an appointment to a Rheumy in Chapel Hill NC. I am in search for a new Rheumy more local, but I was happy to have a Dr look at me like a real person. I enjoy reading these articles so I know I am not alone.

  • Doris Blackwell

    I am so glad to have read this. I too suffer from the short term memory loss. The chronic fatigue, and aches that seem to leave me on Dr. visit day. Because I don’t know many people w/Lupus, much less any with my fame symptoms, I thought I was the only one going through this. I am starting my journal today. Fortunately my pain isn’t as bad right now as it was in the past. Is there any help for the fatigue? Some days it wears me out just thinking about activity.

  • decreases

    hopefully there are more sufferers out there that will do the journal. I too got sick of being made to feel worse by the doctors that should be trying to make me feel better………. I now makesure I have a journal when I visit the rheumatologist he certainly takes me more serious than the last one and at last I am getting more good days than bad ….touching wood……….don’t wish to curse myself xx

  • Hello lovies! Sorry I’m so late to respond.

    I want to thank each of you for encouraging me to keep on writing. Every post I’ve ever written is based on my learning experience on my journey with lupus and it’s nice to know that there are others who can relate.

    This post was especially important to me, because I remember feeling SO crummy every time I went to the doctor’s office. It’s nice to have the power of knowledge, to know whats going on with your body and be able to go head to head with a medical expert on it.

    For those of you who have become your own health advocates I am super proud of you, and for those of you who have gotten the courage to put your foot down and become health advocates I salute you! Keep on keeping on and thank you for inspiring me to keep on writing <3

  • Donna Twichell

    I did NOT know that you could have Google news Email articles to you. Am going to do that RIGHT NOW.

  • Corinne

    I am living with chronic pain due to a car accident in 1989. I was thrown from a vehicle my boss was driving. I have had several major traumatic back surgeries. I have a back of 4 rods, 9 screws, 2 false disc implants, lots of hooks and wires and bone fusions.

    My last back surgery was Sept 27th, 2010. I am doing all I can for myself physically. Ii am on the same pain medications I have been on for 4 years. I also have depression and anxiety. I need to find out how I can take control of my situation. I hurt, and push myself out the door. I am on disability (SSDI) I have lost my self esteem and am asking for someone out there to help me please.

  • Diane

    Becoming your own medical advocate is so important for chronically ill patients. I have my email set up to automatically send me any new articles on fibromyalgia and migraines straight to my email. I also follow clinical trials, and was one of the first to be prescribed Cymbalta when it was released. I have participated in clinical trials, and have done extensive research on my conditions. I had a bad experience about 11 years ago when my primary doctor sent me to a rheumatologist, a supposed specialist, who proceeded to tell me that fibromyalgia was a trashcan diagnosis and that I needed to see a shrink instead. I walked out of his office with as much dignity as possible, and spent the next year bombarding him with copies of medical studies, clinical trials, articles in medical journals, and anything else I could find. His nurse would smile whenever she saw me coming, and made sure the info ended up on his desk. I figured he was ignorant and needed educating. After waiting a year and a half for an appointment at the Stanford Pain Clinic, I was examined by two doctors who took me seriously, and I’ll never forget when one of the doctors reached over and placed his hand on my knee and said, “It’s okay. We believe you!” I promptly burst into tears. Unfortunately by the time I got the appointment with the pain clinic, it was 2 weeks before we were moving to Arizona. But they wrote up a detailed treatment plan for me to take to my next doctor, and that helped a lot. I use the calendar and journal features of Outlook to track my appointments, medications, weather changes, what I eat, etc. For important things I don’t want to forget to ask the doctor about, I use the notes feature on my cell phone to remind me.
    Anyway, I’ve learned in the 36 years I’ve been living with chronic illness that you have to become you own medical advocate if you want to get the treatment you deserve. Remember that the doctors work for YOU, and that you deserve the best care possible.

  • Stephanie Marushia

    Evernote, SpringPad, and Microsoft OneNote are great programs for becoming an advocate for yourself and just keeping track of life while dealing with brain fog! Try all three and see which makes sense to you; Evernote and SpringPad are free and can be used with a smartphone or iPad in addition to your computer all versions are automatically synced so you don’t lose your info if your computer crashes. You can even “share” selected notebooks with your medical team so they can access it when needed.

    I keep a symptom journal in one notebook, my medical history in another, medication lists, my list of doctors, dates of procedures and how effective they were, what meds I’ve tried and how they impacted my quality of life, etc. I even tracked my pain level for a couple of months on one spreadsheet and the barometric pressure on another so my doctor could see just how much it affected me.

    Evernote is also great for Brain Fog! I keep my contact list in it with notes about who I talked to and when so I don’t have to depend on my terrible memory. I also use it for my to-do lists, articles and webpages I’ve clipped from the internet, promising treatments, etc.

    Using my Android smartphone (it’s available for iPhone as well) I use Evernote to take pictures of my legs or hands when there are severe color changes or swelling since my body usually is at it’s worst 2 hours after the doctors appointment, not when the doctor can see it. It makes my disease less invisible and I add a little note below the picture about what I have done that day to see if I can find possible triggers. It can also read text from scans or smartphone pictures so if you take a picture of your doctor’s business card but can’t remember his name just search for a word you know would be on the card like Rheumatologist or the street they are on.

    It really is a great tool for those of us with a long medical history, if you have to fill out a lot of forms, etc. A few other uses are keeping pictures or scans of your kid’s are work, important papers, insurance information, home inventory, menus of favorite take out and delivery, etc.

    If you travel for business, pleasure, or medical treatment, EN saves a lot of time. When I’m planning a trip, I create a notebook with the city name. I then enter my travel itinerary, flight information, hotels, maps, directions, packing lists, links, reservations, places you want to see, confirmation numbers, etc. I use my cell phone to take pictures from the trip of things I want to remember and it comes in handy when planning another trip (to remind me of what the hotel room looked like to decide if I want to stay there again, the places I visited, menus from the restaurants if I want to go again or share them with friends, etc.).

    You can use Evernote to make audio notes, web clippings, smartphone pictures, etc. so you can save articles about medications you’ve taken, new treatments you want to discuss with your doctor, bydls.com articles, etc. When I’m at a doctor’s appointment I almost always take my phone out to access EN while filling out forms, lists of questions I want to ask, or pulling up an article I want to discuss with the doctor.

    It has saved me so much time and helped me so much in being an advocate for myself and my son with autism that I’ve become an “Evernote Evangelist!”

    I hope this helps someone make life a little easier!

  • Sandy

    My first Rheumatologist encouraged me to keep a journal and told me many times he wanted his patients to be the most knowledgable patients any doctor ever had. He told me a patient with knowledge of their condition is much more able to see the small changes that make big differences! God bless his soul, he has passed on now and I have not found one as good as him yet but I still journal just because my memory stinks and it helps me recall things I need to share with any of my doctors.

  • Vickie Foster

    Great post! Loved it…

  • Miranda Rice

    Good for you!! Here is something that has pissed me off since the pain & confusion & exhaustion began sometime between the ages of 22 – 25. Maybe it was earlier than that but I was so strong, healthy, and at the peak of my physical fitness, that I probably brushed it off.

    Let’s say you need a special hat for an occasion. You go to purveyors of hats, try on a few, maybe buy one, maybe return it tomorrow because you found a better one. Perhaps you read up on milliners’ backgrounds & education, so you could purchase the very best hat. When hat shopping, it’s called due diligence, or being an educated consumer – you’re the one spending your money, yes? And you want the very best hat you can purchase.

    But in the medical world, it’s called “doctor shopping” and there’s something shameful about it – no one calls you a “doctor shopper” because they think you’re smart. You are “doctor shopping” until you get the Dx you want, or the Rx you need. Something doctors need to remember: I am hiring you to take care of my medical needs. If you, as a doctor, are not doing an impressive job, I’m not spending anymore of my money on you – I’m firing you & looking for a BETTER DOCTOR. It’s not a hat, IT’S MY LIFE. Things have improved since I was 24 years old, when I was meeting doctors who told me that they “didn’t believe in Fibromyalgia” and made sarcastic remarks about “who’s the doctor here?” because I was an educated patient in 1989.
    Thank you, Tiffany for helping to empower the ill. I wish I knew you in 1989. And thank you to my wonderful P.A. who is far more helpful, understanding & kinder than the hundreds of medical personnel in between. Best of health to you all.

  • heather morgan

    Journaling is great, but you can use the office outlook calendar to highlight if you are too busy to journal. You know, just work up your own code. Or use a day timer with a few colors if you are low-tech. Isn’t there an app for all this?

    doctors definitely love it and will work with you more if they see that you don’t just want a handful of pills, especially nowadays when so many are prosecuted for prescribing pain meds. I think being proactive, even if you consciously decide to do nothing, or wait, or get a second opinion, really does make you feel better!

  • Great essay. Very empowering. I, too, keep a medical journal and I’ve swapped doctors in the past. But thank you for giving me the courage to stand up to my rheumy. She’s intimidating and I loose my cool around her. But I think that will be no more. I should treat her as though I treat all my other doctors. I needed to hear that it was okay to move on, I guess. Being beaten down by my illness isn’t good for me.

  • Brigid22

    I don’t do a journal, but I probably should as I’m being shuffled from specialist to specialist. I do make lists for each appointment, no matter what I’m seeing the doctor for, even if it’s just something small like a respiratory infection of what my symptoms are and how long each has been going on because my memory and recall ability are terrible (and since ihit my head they’ve been worse, improving slowly but worse) and it makes the appointment run smoother and me look not so flakey.

    And as a nurse, I can definitely back up the more you know about your condition, the better you’ll do in the doctors office. Especially when you come prepared and assert yourself.

  • Amen sister!

    I am a strong believer in self awareness and education by any and all means. Over the years, I have learned a plethora of information through various sources, and have braved on many occasions, calling out a doctor when they make a mistake! Most doctors I meet are impressed (and maybe a little threatened) by my medical knowledge. It’s amazing how much more they seem to respect and take seriously, an informed patient!

    Keep up the great work. Your writing is wonderful! Excellent article!

    I’m always looking for spoonie friends on facebook! Friend me! Miranda Stein from NY. Mention spoonie n the request so I know you aren’t a nut!

  • I believe I’ll do the same thing now that I’ve been diagnosed with an invisible chronic illness (bipolar). I have a good doc at the moment but I should stay informed and always be ready to deal with a health practitioner who knows less than I do. Thanks for writing this!

    As an aside, how do you do the Google news subscription? I would *love* to get an email every time there’s a news article about bipolar illness!

  • Janet

    I have done the journal routine. I still am, sorta. I just don’t like having to write it all down. My hands will hurt to write and lets face it, I just get too tired to even want to do it. I’m glad you found something that works for you. I’ve, many times, forgot where I put my journal so I’ve actually have a couple Journals somewhere. I really need to get organized but we’ll wait another day on that. 🙂

  • Shawna

    I just started that same thing. I’ve had a great doc for 18 yrs, but think he has finally gotten frustrated that he can’t really fix me – so I started getting the “ok, we’ll see you back in 3 months” type responses. I’ve got fibro and have noticed in the journaling that there are some trends and maybe things that will help. I can hardly wait to go back armed with my findings and articles…

    thanks for sharing!!

  • Trish Howard

    Bravo! The journal is a great idea! Thankfully, I have a fairly good rheumatologist, and he not only takes VERY DETAILED notes, but also dictates them while you are sitting there with him, and he cc’s just about every one of my other docs on the notes. That keeps all of my doctors in sync.

    I have primary APS, which unfortunately is even lesser known and understood by doctors than SLE. I’ve found the best path is to know as much as possible and be willing to ‘helpfully’ share it with your doc. Some get miffed because OF COURSE they know more than you do about anything medical, but many of my docs are the type to readily admit they don’t know everything about everything.

  • Kathy Livy

    you are so right! Doing your own research and being in control at those visits makes all the difference in how the Doctor interacts with you. The days of leaving your health in someone elses hands are gone. The good thing is we have articles like yours to remind us that knowledge is power!
    Thanks Tiffany