Living a Sustainable Life: Living Life with a Chronic Illness

When I look back 10 years ago, I was in good shape. I didn’t eat the best in the world, but I was active and I worked out often. Little did I know that 10 years later, I would be dealing with a chronic illness and that the life that I now live is vastly different than the life I thought I would be living.

In April 2020, I started having this excruciating headache. I thought it was a migraine, so I went a few days trying to self medicate. You know, pills, dark rooms, warm compresses, etc. When the light sensitivity started, I was forced to go into an emergency care clinic. Amazingly, the doctor there knew what I was experiencing (Uveitis) and that most cases are rooted in an autoimmune disease. From there I was referred to a rheumatologist and after a battery of tests, I was diagnosed with Sjogren’s Syndrome and Rheumatoid Arthritis. My jaw dropped.

When I look back, I had known that something was wrong for a while. My body hurt more than normal. I was tired all the time and was using food and coffee in unhealthy ways to gain energy. I would get rashes and dryness and would even have problems breathing. But to have such a definitive diagnosis threw me for a loop. It still does. On one hand, I was relieved to know that I wasn’t crazy. On the other hand, I was still “young” and to be diagnosed with what I considered an “old person’s” disease was unfathomable. But what I’ve learned is that this life will throw you a curve ball when you least expect it. It’s how you catch those throws that determine how you survive it.

So, for those of you that don’t know, both Sjogren’s Syndrome and Rheumatoid Arthritis are autoimmune diseases. SS primarily affects the glands that produce tears and saliva. Most rheumatologists that don’t know much about the disease think that you’re lucky if that’s the one you get because they think that, at the most, you’ll have a dry throat and dry eyes. However, that's not the case. Other symptoms can include not only dry eyes and throat, but extreme fatigue, breathing issues, brain fog, stomach issues or the inability to chew and swallow foods, not to mention the inability produce saliva, tears or sweat. Plus you’re more likely to lose your teeth with this disease because saliva is part of what keeps your teeth healthy. And there’s always a chance that this disease can lead to cancer or heart disease.

Rheumatoid arthritis affects the joints. Wires get crossed and your immune system thinks it’s supposed to attack the fluid linings in between your joints. Rheumatoid arthritis not only gives you pain, but crippling pain. If left untreated, you can end up with physical deformities and a loss of mobility. And like all autoimmune diseases, it could eventually affect other organs.

So, where am I at right now? I’m not sure. I struggle. I don't like taking medicine and I barely remember to take it when I do, but I know that I need to so that things don't get worse as quick as they could. Ask me tomorrow and I might tell you something differently. I know that when I take the medicine I feel better and when I forget to take it I end up with these splitting headaches. I get tired often, but I'm learning how to push myself, and when to rest. I'm learning not to take anything lightly, but to not take it so seriously that I give myself anxiety about it. I'm still learning a lot, but I do know this: life isn't done with me yet and I refuse to give up. Let's see where this thing goes.

If I were to leave you with anything tangible today if you or someone you know is newly diagnosed, this is what I would leave you with. First, know what they put in your file. I like how we live in an electronic age, and how I can go online and look at my records any time I want. I printed out a copy of mine so that I could do my own research. Which brings me to my second point: do your own research. Know your diagnosis and look up what each one means. Third, ask questions. Keep a running list of what questions you come up with in your research and ask them. And finally, don't be afraid to ask. No question is stupid. Write down the answer you get and start keeping a file of everything.

I'll keep you posted on my journey, but if you're newly diagnosed with a chronic illness, or even if you've been going through this thing for a while, let me know how you're dealing with it. We're in this thing together!