Listing all of my medical conditions is like taking attendance at elementary school. As I list them, I have to mentally check them off to ensure I’ve covered them all.
Some are conditions that have been slowly developing since I was young. These include having menstrual issues, crooked toes, and one leg that is just under an inch shorter than the other. Then there are the ones that have been ganging up on me over the last 12 years. Rheumatoid arthritis was first, then came a fungal infection in my lungs called cryptococcosis, along with endometriosis, fibromyalgia, shingles, type 2 diabetes, cataracts, a pulmonary embolism (blood clot in the lung), ankylosing spondylitis, dry eyes, and spinal stenosis.
I had to consult my notes just to write that list — and I haven’t included everything. Add in the medications I take and the list of health professionals I see and even this very basic medical information fills a whole typed sheet.
My Medical Condition and Drug List Is My Lifeline
Whenever I see a new health professional, I have a quiet chuckle to myself when I see the few lines they have allocated on their medical history forms for prior conditions and medications. As if I had the time and patience to write that out by hand anymore — let alone the space to include it all. These days, I simply write “see attached list” and bring my own sheet with me.
While that may sound super organized or obsessive, for me it is simply a necessity. I can’t afford to miss important information if I arrive with brain fog or if the appointment is rushed. Forgetting to mention a medication or condition could easily mean I get the wrong treatment. Even with my pre-typed list, discussing my medical history usually takes up most of my initial consultations.
I know that there are apps and identification jewelry that can help organize this information, but I prefer hard copies that I can simply update and hand over as needed. I also keep a copy in my wallet in case of emergency.
(Australia, where I live, now has an online government medical record system called My Health Record that is meant to better organize this for patients like me, but uptake by health professionals has been slow and some privacy and legal issues are still under debate, so I can’t rely on all my health information being available there yet. I want it to be a key part of my health management when it is fully functional, though.)
Conflicting Treatments Are a Constant Concern
Even my regular doctors don’t remember my history off the top of their heads. How could they possibly? Too much information has built up over many years. It’s up to me to be constantly vigilant.
For example, there were two occasions when I was about to have outpatient surgery and the anesthesiologist chose a different drug to avoid possible contraindications after talking to me, despite being given my list beforehand.
Sometimes, I have not been able to take certain drugs that may have been beneficial because of known or potential negative interactions with my existing medication regimen. That certainly happened when I was on fluconazole, the anti-fungal tablet I was on for eight years after my lung surgery to remove the cryptococcal infection.
Being on this drug prevented me from trying TNFi biologics for rheumatoid arthritis for many years. Doctors thought at that time that my risk of the cryptococcal infection returning was too high. It also restricted my options for blood-thinning medication after the discovery of my pulmonary embolism. There simply wasn’t enough known then about how fluconazole would react with the preferred treatment.
My Multiple Health Issues Affect Even Tangential Health Appointments
At a recent eye test, the optical assistant asked me if I’d ever considered getting contact lenses. Yes, I would love to have them, but I can’t as the drugs I take for my autoimmune conditions make my risk of infection from wearing contacts too high.
A similar thing can happen at the dentist. People who take immunosuppressant drugs have a higher than normal risk of developing mouth infections. The low-dose aspirin I take to reduce the likelihood of future blood clots can also make excessive bleeding from cuts and wounds a problem.
When I chipped a tooth that started cutting my tongue I sought help through the Australian public dental system. At first, I was told I would be on a long waiting list. After I told them I was on immunosuppressants and a blood thinner, I was seen the next day.
I have to be cautious of excess bleeding when I have blood tests and injections, too.
My pathology appointments can also involve more paperwork than the average person has. I need tests for inflammation, thyroid, blood sugar, kidney function, cholesterol, and more. Then, the results need to go to several doctors, plus I always request a copy to be sent to me.
Even exercise classes can be challenging with multiple conditions. This year, I had to stop attending a Tai Chi for Arthritis class because some movements gave me severe sciatic pain from my spinal stenosis. My hatha yoga teacher is wonderful, but I constantly confuse her because different conditions can act up on different days. Some days I’m fine; other days I can’t bear weight on my hands or I need to sit in a chair to do spinal twists. I’m grateful that she understands and just lets me work within my limits each time. I won’t give up yoga, though, as it works on my core strength and helps my ankylosing spondylitis a lot.
How I Take Charge of My Appointments
Bringing my own medical history and drugs list to appointments is only one way that I manage my conditions.
I have an ‘elevator speech’
I’ve made a point of knowing enough about my conditions, symptoms, and side effects to explain them on the spot. It’s like my “elevator speech” for doctors and others.
I bring a note-taking kit
I carry a small folder with a note pad and pen plus a copy of all my doctors’ business cards and my recent blood test results to most of my medical appointments. That way I can prepare a list of any prescriptions I might need or questions I want to ask beforehand. I can also make a note of important things they tell me either during the appointment or soon after it. It saves me having to remember everything, especially when I’m tired, stressed, or in pain.
I always ask about interactions and contraindications
Anytime someone suggests a new treatment, I nearly always ask about potential interactions or contraindications because I can’t guarantee that the practitioner will always think of that for me.
But despite all this preparation, I’m not perfect. I do forget to bring things with me or to note things down. However, making an effort to do all this most of the time goes a long way toward keeping me safe and well. Which, of course, is my number-one priority.
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