Lupus: A Personalized Disease

in #health6 years ago (edited)


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.







 

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

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You could try sleeping on an Inclined Bed.
(Inclined Bed Therapy)
You just raise the head about 6 inches with blocks so that you whole body is on a slight angle.
We have been doing it for a few weeks now and it makes a HUGE difference for circulation of fluids -- water and blood.
I have seen less swelling in my feet, and I have heard amazing stories of how it helps severe edema.
It's free and simple and certainly can't hurt to try.

The most comfortable bed I ever slept in was during my latest hospital stay. There was a position to incline the head, but also the feet with knees bent. I came home with ankles. Actual, real ankles where you could see the little bones and tendons. LOL I want one of those beds. Until then, I might have to do the block thing you suggested here, because I'm sure there is much merit to this.

If I could give you 20 upvotes I would. I don't think I have to say more. Believe me, I understand. Never heard anyone describe so accurately what it's like when lupus flares. I remember reading about Flannery O'Connor, who lived before much was understood about this disease. She would not let it stop her from what she wanted to do with her life. I applaud you. And I love that picture (the one on the bottom of the page :).

Thank you so much for saying these things. Invisible diseases are lonely diseases. It's rare that we find people who completely relate, so when we do, let's hang on tight! :-)

I sent you message in Discord, so maybe we can chat tomorrow? :-)

I 've got tears in my eyes...blog really affected me.

Your comments kinda got me, too. We're speaking the same language, methinks.

I'm sorry you go through this. I don't know what it's like, but I do have Myalgic Encephalomyelitis and also POTS (My heart and brain don't get enough blood while I'm standing up) . It is rough living with chronic illness I can't really say anything else. We just improvise and do what we can. Mine was all brought on by mercury poisoning which I am getting treatment for (chelation therapy) doing the Andy Cutler protocol.

You describe the way the pain feels very well, it's horrendous isn't it?

The title of this article jumped out at me, it's hard to find people that understand, usually i just say "I'm sick". But it is really hard to fathom why I even struggle to write simple posts on Steemit. So while I am sad you go through chronic illness too, it's nice to meet someone who understands. xx

POTS. Oh, yes. Before my lupus diagnosis, I was sent to Vanderbilt for tilt table testing. I'm a little orthostatic myself. I don't have actual POTS in the textbook form, but some symptoms of it are secondary to the vascular disease I have, so my sympathies are definitely with you.

I saw first hand in Gatlinburg how lupus affects you. I wish I had many spoons to share with you. Hugs.

Yeah, and I'll never stop being sad that I missed a whole day of fun with you guys. But at least there was understanding, which I deeply appreciated. :-)

Hello rhondak!

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Stay strong, matey :)

You're amazing. Truly. Sending so much love. Take care of you! ((hugs))

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