Lupus: A Personalized Disease

I’ve read many articles about lupus over the years. Some were written from a medical standpoint, others from a place of personal experience. Medical facts don’t change much from author to author, but no two anecdotal stories are alike. I’ve also never found anyone who suffers the identical course of disease as I have. Lupus is the Great Pretender, after all. It can behave like so many other diseases, making diagnosis difficult. And it affects everyone differently.

My Unique Cocktail of Disease

The array of symptoms I deal with are mostly cardiovascular. Years of inflammation have left my veins and arteries compromised, so that now I suffer from chronic peripheral venous insufficiency. In other words, my heart pumps just fine, but the other built-in body pumps designed to help return blood to the heart are not working properly. Blood pools in my feet and lower legs, my abdomen, and any part of my body that falls below the level of my heart. When this becomes particularly acute, I become dizzy, confused, and sometimes develop a cardiac dysrhythmia and even pass out. The only help for me during those times is gravity; I have to get horizontal, elevate my feet, and let blood pool back into the larger veins of my body.

In a related way, I suffer from a form of Raynaud’s Disease. My fingers and toes can become frostbitten within minutes of exposures that others don’t need gloves to protect themselves from. I have difficulty operating machinery like a weedeater. The vibration can cause extreme numbness that takes hours to resolve. My hands and feet have been known to turn all kinds of crazy colors depending on elevation and temperature.

I also have extreme skin sensitivities that require me to wear only the softest, nonrestrictive clothing and shoes that don’t chafe. My skin will erupt in large abscesses from the friction of certain materials. I can’t shave or wax because of the irritations those activities cause. I can’t wear contact lenses anymore because my corneas will ulcerate. Can’t wear makeup, either, or at least only briefly. I’m not allergic to it. I react to the tiny flakes that even hypoallergenic brands contain. Fake nails, jewelry, hair color—most cosmetic enhancements—tear my skin to pieces.

And sunlight? Forget it. The very first indicator that I’m about to become sun-sick is a feeling of cold during exposure. I literally feel chilled, and my arms will break out in gooseflesh. Then I develop spots in my field of vision, a rapid heart rate, and begin to sweat profusely. By that point, only mechanical efforts to cool me down are effective, like ice packs, or tubs of cold water.

Pain and Other Nightmares

Those are the “signs” of lupus I live with, the manifest indications that something is very wrong inside my body. But how do I feel? Well—quite horrible most of the time, if I’m being honest.

I do have the typical flare-ups that lupus is known for, which are periods of intense inflammatory activity. I usually get a lovely butterfly rash and extremely high blood pressure during these times. Not to mention that I’ll become symptomatic for rheumatoid arthritis during those periods, complete with bone changes. Not fun.

But all of the time, ruthless and unrelenting, an undertow of illness robs me of a normal life and sends me to bed more often than I’ve admitted to anyone here on Steemit outside of @gmuxx, who also suffers with auto-immune disease, albeit a different type. And believe you me—there is no reading or editing or being productive when that happens. When lupus sends me to bed, I can’t even watch silly YouTube videos. I have to lie there, in the darkness, eyes closed, and literally remember to breathe. CPAP helps with nerve damage to the muscles that control my airway, but does nothing for the central apnea caused by a brain stem that is swimming in inflammatory markers. Lupus is a whole-body disease. It affects everything. And when it flares up, there is no escape.

All this, and I haven’t even touched on the pain. Some days, it’s crippling. My joints and muscles ache like I have the flu. But it’s not quite like the flu, not really. Imagine a grueling full-body workout that leaves you sore the next day, and stiff. In that case, however, you can move around a little and work through it. In the case of inflammatory disease, however, the more you move around and try to work what hurts, the worse it hurts, and then it hurts for days because you’ve actually injured tissue trying to be a badass. The injured tissue dumps more undesirable proteins into the blood, which trigger more inflammatory response, and finally you just crash. Last time I crashed, I ended up in the hospital with sky-high D-dimers and uncontrolled A-Fib, with a heart rate fluctuating between 210 and 280, and blood pressure hovering around 260/140. So please, don’t ever tell me to just suck it up and push through. It’s not an option for people like me, unless we’re suicidal.

Other times the pain is dull and amorphous. During those times, I feel like I was standing in the blast radius of a very large explosion, and was blown clear to the edge of the construction zone. It’s like every cell has been pounded with sound waves, or percussion, or some kind of force that bruised me from the inside out. During those times, I can feel my kidneys pounding with every heartbeat. I have chest pain. Often develop pleurisy. It’s just bad. Really, really bad.

I have other symptoms, too. Some of them are far more embarrassing than the fact that I can’t shave my legs, so I’ll refrain from discussing them. But let’s just say there isn’t a single body system not affected by this disease. I do have some good days, or at least days that aren’t as bad as others. But I never feel like myself any more. I’m never able to “forget” that I’m sick. I wouldn’t wish this disease on my worst enemy. But I won’t let it stop me from living life as fully as I can. As long as my mind works, I have something to offer. Please just understand when I disappear from chat in Discord, or don’t get to an edit as quickly as it seems I should. I might not tell you I’m curled up in bed praying for the ibuprofen to kick in. Just know I’ll be back to it as soon as I can.

 

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Posted from my blog with SteemPress : http://www.authordianeryan.com/uncategorized/lupus-a-personalized-disease/

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