Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be SUCCESSFUL at getting the care I deserve.
Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?
- You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
- Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
- Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
- Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
- Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!
-Adrenal Alternatives Contributor- Jen Hudnall