We really didn’t go to the doctor as children. Sick or not, I hated sitting still. There appeared to be a whole lot of sitting going on the few times my mom made it clear going wasn’t a choice.
As I became an adult, I avoided doctor’s visits as much as possible. Partly because of the cost and partly because anything aside from prenatal visits usually didn’t make the top of the list when I had free time.
The signs that I was sick, more than just regular sick, were present even as a child. I grew up mostly in the country and spent time outside digging in the mud or trying to catch grasshoppers. I would get terrible leg, joint and bone pains. I was never diagnosed with anything back then but it’s clear now that I had juvenile arthritis, an autoimmune disease.
On the bad days, I would think about those grasshoppers as I lay in bed rubbing my legs together for relief. I had once heard that crickets made noises when their legs rubbed together. With a symphony of cricket music playing in my head, time would bring temporary relief from the episode. The fever would subside. My shaky legs, weak and achy would threaten to buckle as I climbed out of the bed. I’d remind my skinny limbs that I was their master and it was time to go. I had work to do. I would return back to my job of chasing grasshoppers and bossing my brothers and sister around while our parents worked.
Lupus is an autoimmune disease that turns your body on itself. Your own immune system attacks really important things. In my case, my organs and all other innards were a buffet for lupus. My lupus was a pig back then and didn’t stop on the inside. I had never thought of skin as an organ. I found out that it’s actually the largest organ in the body– well technically it would be outside the body but that doesn’t sound right. Tomatoes are technically fruit. Skin is technically an organ.
Can you catch lupus? No. It’s not contagious and even though I was treated with chemotherapy, it’s different than cancer. Chemotherapy is usually reserved for lupus that begins to invade and severely damage your organs– even if you start treatment. Untreated it can lead to death. This is why lupus and many other autoimmune diseases are scary– I was sick and had lupus all of my life. I was well into my adult life when I was diagnosed. Even though I didn’t like going to the doctor, I had been seen for everything from having a baby to bronchitis to strange hives that would cover my body in a matter of minutes and then disappear as fast as they came. Lupus can seem like so many other illnesses or come and go so quickly, many people (and their doctors) might think they are going crazy. It was not all in my head. There are hundreds of thousands of women and men, but mostly women, who have been sick all their lives and may even be dying before their time and have no idea they have lupus.
Getting diagnosed is a start– for me, the diagnosis came the day I had to make a choice. Plasmapheresis, or plasma exchange is another uncommon treatment. I had a choice between the chemotherapy and what was in essence a entire body blood filtering process. A physician I trusted recommended the chemo. It worked in my case. After the chemo treatments, which are much lower doses than what cancer patients receive, hope and prayers came true. I got better.
I had never heard of lupus before the major flare that landed me in an ER room. I researched information about the disease. I once declared that I had a 50% chance of dying of lupus after incorrectly quoting statistics about mortality in systemic lupus. At my next doctor’s visit I asked him how long he thought I had to live. Dear Dr. Newton, a now retired rheumatologist helped me understand what the study was measuring. I have a severe form of lupus. I still do. I understand how to manage it now. There are countless studies on lupus and life expectancy. It’s better odds than I thought. 80% – 90% of people with lupus have a normal life expectancy.
I had a choice then and I have a choice now. I can dwell on all the things I need to do in order to be healthy and see it as a negative. I can chose to be thankful that I have access to medical care and have been able to learn how to manage this disease. I chose the latter. I know what it is and it knows me.
The large expanse of conditions and how they present is a challenge for people with lupus. It doesn’t look the same in everyone. I know there are others not as fortunate as I am. It’s a rough and tough disease. Not everyone has support or access to care. Some of my medications would run in the hundreds of dollars. When it was tight, I remember having to choose groceries over medication.
Here I am after treatment starting to get back to normal. This was one of my favorite wigs. I was tapering off of high doses of a steroid called prednisone and I became less swollen. My outside was starting to match how I felt on the inside.
“But you don’t look sick” was bound to come up in conversations after the flares settled down. Sometimes I do look sick. Sometimes I look great. One of the challenges with lupus is that your physical appearance doesn’t always match what the inside feels like. “It’s not a real disease, it’s all in your head” was a less frequent comment but I suspect it was a statement not always said out loud. I choose life. I choose to love and allow myself to be loved. I choose be grateful. I choose to live like today was my last day. I still sing the song of the crickets on bad days. It’s a melody that rises and falls like the moon. Sing your song and get back to chasing grasshoppers as soon as possible.
Thank you for visiting my site. I appreciate all of the encouragement and never expected I would meet so many beautiful souls all across this world. The picture below sums it up. Make the best of a bad hair day or no hair day or growing back hair day. I had several mullet like days. It grew back.
There are numerous sites about lupus. Here’s a link to one of them if you are interested in learning more about lupus.