I’ve been living and traveling full time in a motorhome with my husband and bullmastiff for the past six years. The lifestyle is full of adventures, different locations, and learning to live life by the seat of our pants. It does come with some inconveniences when health issues come into play.
I have rheumatoid disease, which is more commonly known as rheumatoid arthritis. The term ‘arthritis’ is actually misleading. It not at all similar to the creaky, painful joint issues of osteoarthritis. It is an autoimmune disorder, which means the immune system attacks a person’s own body as it would an outside virus or infection. The malfunctioning immune system randomly strikes the connective tissues surrounding an affected joint. For example, I can go to sleep perfectly fine, but wake up at 3:00 a.m. with intense pain and swelling around a random joint accompanied with a fever and flu-like symptoms. This acute illness can last twenty-four hours or several days. It can disappear for a day and return to attack the opposite side of my body. It’s an immune system gone wild and it violates the person who supports and gives it a home. This chronic illness never goes away and offends over and over again with no warning. While there are medications to silence and suppress the immune system, they only work for an unpredictable amount of time. Finding the right combination can take years, stop working in a few months, and have side effects causing permanent damage to liver, kidneys, lungs, and other vital organs. If the flares go untreated, permanent joint or organ damage can occur.
This condition, and other autoimmune disorders, is unpredictable. Having rheumatoid disease for many years, I’ve discovered patterns unique to my own body and reactions to outside stressors which can contribute to serious flares. I’ve learned to avoid certain foods, activities, and know when it’s time to retreat and rest for a while. With experience comes wisdom and power to keep myself as healthy as possible. It doesn’t mean disease activity disappears or won’t flare up when I least expect it, but it does give me the slightest bit of control. How this affects our travel depends on the physical unpredictability. I’m blessed to have a wonderful support system. Mike, my husband, tends to pick up the slack when I’m unable to function at full capacity.
It’s been years of trial and error since being diagnosed with rheumatoid disease. That’s why I created a journal for people with autoimmune disorders. It not only tracks daily progress, it also reveals disease patterns, records medication regimens and reactions, and has a section devoted solely to flares and questions for care teams. It’s a source for both the patient and the physician. It’s a perfect resource for someone newly diagnosed with an autoimmune disorder. Below is a sample of pages:
I’ll be doing a few future posts on living with an autoimmune disorder, specifically rheumatoid disease since it’s what I know first hand. In the meantime, if you’re interested in learning about the journal I’ve created, you can see via the QR link below or click here: Hoarding Spoons: My Autoimmune Journal.
What a great idea, Dawn. Learning your own body needs is so important. It is sometimes hard for me to rest when I need to.
I have a compromised immune system due to having had Chronic Shingles. I too have had to learn what my limits are and to respect them, as well as doing what I know to help my immune system, such as healthy eating, getting the amounts of sleep I need, managing my stress, as well as taking supplements to strengthen my system. It’s a constant system of balancing things out in my life to manage work and private life. Kuddos to you for doing the good work to help yourself.
Thank you so much for writing this journal. I know it will help so many people. Along with the difficulty of diagnosing auto-immune disorders, comes the fact that most of us “look fine” on the outside while no one understand the pain within. You and your journal have a very special place in my heart!
You have a special place in mine, too. Can’t wait until trees and Jacksonville are over so we can have a catch-up! HMMH!
I, too, have been dealing with an autoimmune disorder, which attacks my skin. For my conditions, treatment with a monoclonal antibody, which is intravenously infused every six months, is able to control the conditions fairly well. Thanks for sharing your experience. I hope you continue to get better, Dawn. Best wishes.
I’m sorry you have this, Keng. I was offered the infusion route, but chose weekly self-injections because of our travel style. I’m doing very well on this regimen, also. I hope it continues to work well for you!