Receiving a diagnosis of an autoimmune disease is overwhelming. There is so much to take in, especially if you have no knowledge about your diagnosed disease and weren’t expecting it.
While there are many resources available to educate us about our symptoms and treatment options, there aren’t many resources for patients to be made aware of the changes that will at some point or another become an issue in their personal lives.
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#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
The Importance of a Chronic Illness Health Journal
We are always asked for a list of symptoms that we are currently experiencing at every doctor’s appointment. But that is not good enough!
For doctors and patients to have a better understanding of how the disease progressing, what could be triggering symptoms/pain, and the impact it is having on the patient’s life they both need to see the full story, not just one day or week of the patient’s life.
Why I journal
I didn’t know about or begin journaling for the sake of researching the progress I was making with fibromyalgia and psoriatic arthritis until 2013. At the time I had just began my journey into natural and alternative pain relief.
Knowing that my doctor wouldn’t prescribe it, even though it was and still is legal in the state of California, I wanted to be able to provide a detailed account of my use and the results, good and bad.
Through journaling I was able to present my doctor with a timeline of improvements, the amount of cannabis needed daily, when taken, and the impact it had on my daily life.
In the end, he didn’t care. Again, although legal in the state that I reside, there are few doctors willing to discuss cannabis for medicinal use. However, he was thrilled that the pain relief I was experiencing had stopped my asking for pain medication each month.
Since then I have continued to journal for the sake of research.
Diaries aren’t just for teenage girls! Health diaries give both the patient and doctor vital information. #autoimmunearthritis #PsA #fibromyalgia #chroniclifeTweet
Oh the things you will learn!
Through this process I have learned to recognize trigger foods, activities that needed to be modified, and behaviors that needed to change. I have been able to pinpoint triggers outside of my control such as being struck with a migraine when a solar/lunar eclipse occurs. I also know how much sleep my body needs to function properly when not flaring.
The information I have gathered has made it possible for me to prevent and reduce some flares. I am obviously unable to prevent them all, but the ones that I know are triggered by food are avoidable as long as I refrain from eating those foods. As for cosmic events, I watch weather and astrological reports. I have been able to decrease the severity of flares triggered by super moons and an eclipse by increasing PEMF treatments on my spine a few days before the event.
Through journaling I have learned what forms of exercise are not for me and what are. I have discovered what time of day my body prefers to exercise and that it changes with the seasons.
Once upon a time I thought my body just randomly decided to become nocturnal for a week or two, but through journaling I was able to identify a pattern. Turns out there is nothing random about it, that instead it occurs with every change of season!
The healthcare connection
Life with an autoimmune disease differs from one patient to the next. We may share symptoms, but not all the same triggers.
There is a lot of discussion about there not being enough research on patients with fibromyalgia and psoriatic arthritis. Personally, I feel the medical community is missing out on vital information by not asking patients to take part in the research by providing journals.
Imagine if my doctor knew what I ate, how often I ate, how I exercise, my workout recovery process and time table, the products I put on and in my body, my daily fatigue and pain level, and what helped or didn’t help reduce pain. That information is the most important and is vital in regards to my treatment.
Whether your doctor requests that you journal or not, you should start doing it today. In my eBook Making Pain Your Bitch, I share how I discovered my food triggers. I don’t care if you print the sheet provided above, purchase a journal online, or make your own just start journaling for the sake of researching your body and chronic illness today.
What could help a newly diagnosed patient
- A discussion and guide on the importance of health journaling
- A guide detailing the areas that the patient should consider journaling about
- A free starter journal to get them going or a 30 day journal that they can bring back at their next appointment to discuss with their doctor.
- Doctors getting to know us, not just our lab results!
Thank you for reading part four of this nine part series covering the topics I wish my doctors would have talked to me about when I was first diagnosed with fibromyalgia and psoriatic arthritis.
- 1 Mental Health
- 2 Therapy is Important
- 3 Intimacy Issues
- 4 What is Health Journaling?
- 5 Pain Relief Options
- 6 Relationship Troubles
- 7 Need for Assistance
- 8 Importance of Self-Care
- 9 Keep Moving with a Mobility Aid
- The Cost of Living with Fibromyalgia
- Invasion of the Brain Snatcher! Tips for Dealing with Fibro Fog
- Four Wearable Pain Relief Devices for Fibromyalgia and Arthritis
- Seven Embarrassing Fibromyalgia Symptoms
- F words that describe what it is like to live with Fibromyalgia
- 5 Ways to Reduce Fibromyalgia Pain