living lupie

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body) and is a disease of flares and remissions. Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years; symptoms are unpredictable and can be triggered by a multitude of factors, such as UV light, diet, stress, and much more.

In lupus, something goes wrong with your immune system, which normally produces antibodies that protect the body from invaders, but autoimmune means your immune system cannot tell the difference between foreign invaders and your body’s healthy tissues and so it attacks and destroys healthy tissue. The autoantibodies produced by the immune system cause inflammation, pain, and damage in various parts of the body.

Some additional facts about lupus:
• Lupus is not contagious.
• Lupus is not like or related to cancer. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.
• Lupus is not like or related to HIV or AIDS. In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• Lupus can range from mild to life-threatening and should always be treated by a doctor.
• It is believed that 5 million people throughout the world have a form of lupus.
• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.
• People of all races and ethnic groups can develop lupus.

Adapted from the Lupus Foundation of America’s website

At the end of 2012 and beginning of 2013 I went to a new doctor because I felt tired and unable to keep up, both mentally and physically, and suddenly had joint pain that seemed to be following some sort of bizarre, yet organized pattern. . . several doctors, tests, and years later, I’ve been living with a diagnoses of vitamin-D deficiency, low thyroid, rheumatoid arthritis, lupus, and fibromyalgia. It sucks sounds awful, and some days it really, really, really is, but I’m learning to manage, even in the face of total unpredictability.

Just to give you an idea of what all this means on a daily basis for my body, I’d like to introduce my ‘heroes’ and ‘villains’ . . . those items I find most comforting when dealing with each of my troubles.

 

First, there are the overall, general villains that are fought by hero pills. Trial and error have led me to find a pretty successful course of prescriptions and supplements, I think. I mean who really knows? Not my doctors, that’s for sure. But recently I’ve been *fingers crossed (arthritis willing)* feeling pretty ok. And ok is a big improvement from the last two years, so I will take it and be happy.

I generally consume 6 pills in the morning – a thyroid supplement first thing with a glass of lemon water, then a few separate vitamins and minerals and two anti-inflammatories (one prescription, one natural) with breakfast. At lunch I have another mineral and a natural anti-inflammatory, and at dinner I take one more of those natural anti-inflammatories and my super-special-I-really-hope-it’s-not-going-to-eventually-kill-me-or-stop-working prescription. On an as-needed basis I do have a muscle relaxer that I use to help me sleep during flares, otherwise I cannot tolerate narcotics, which is a blessing and a curse. I love a good natural antacid after dinner and use a few sleepy supplements to keep me rested through the night.

It looks like a lot. . . and it is. It’s like maracas in my bag when I travel.

 

Second, there’s the evil, despicable villains of joint and muscle pain, which can come on slowly or all-at-once, from weather changes or activity, from hormones or alcohol and processed food, or from something I can’t yet seem to determine. There are some spots that I just expect to be sore nowadays, like certain fingers, one elbow (or both), a shoulder, an ankle, maybe a knee (ok, both of those, but the backs, not the kneecaps, weird, right?). So now I officially get to say, like on TV, “Oh, my arthritis is acting up.” Most doctors and a physical therapist agree that I can do whatever feels good, so I’ve found that heat, pressure, arnica, and lavender are the most competent heroes. I say competent because they do their jobs and help in times of need, but really nothing makes it stop until it wants to.

I’ve been gifted a wax hand spa and warming mitts that are a bit difficult to use if I’m really in pain, but with the help of Mr. Husband, they bring comfort and a little relaxation since I have to sit still to use them. For on the go and working with my hands, arthritis gloves and pressure wraps are essential, and I like to keep a disposable therm-pad in my bag for reassurance when away from home. Every morning and most nights I use some form of lavender lotion over a layer of arnica on my neck, shoulders, and arms. . . I don’t know how much they help scientifically, but the rubbing and soothing smells are nice and I know that makes a difference. The best heat source for upper body is my electric wrap that is super soft and cozy, even on hot days, but I also use the stiffer pad for back and leg pain. Sometimes cold is nice, especially if I’ve actually been active, and both of my cold packs can be used hot, too, so they’re double-duty.

These doodads are cozy and warm and sometimes that’s the best it can get.

 

The third villain is a BAD DAY, which usually means I’m cranky, depressed, exhausted, and generally sore. This most often occurs during my monthly hormone changes, but no one likes to talk about that, so we’ll just say that one out of every four weeks can be one long BAD DAY. . . yeah, it sucks. Especially since it’s really that two weeks out of every four have the potential to be a full flare or just a BAD DAY thanks to hormones. So, no, I don’t make many plans; and I push through if I have to and schedule a crash later.

A couple things that help during these dark times when all I seem to have on are cranky pants, are my super-cozy bed and a super-hot shower. Sometimes I’ll just go back and forth between the two, with only the kitchen as an alternative.

I love my bed because I have nice pillows and soft sheets, but most importantly, a fluffy down comforter with a super-soft cover. And I have a special mini pillow that is good for my neck, or for snuggling. Being in bed is an escape from the world, so I usually watch movies, read fiction, or sleep. . . or cry. There is sometimes a lot of crying.

Crying is good in the shower, too, because then the tears and snot just wash away. But really, the shower is one of the best soothers of my soreness and has the potential to energize me. Or it confirms how tired I really am, especially if I don’t have the energy to put on all my lotions afterward. So then I just put on a quick coat of lavender and get back in bed.

The soft and dreamy, warm and cozy, quiet and dark bed in the master bedroom of my dreams.

Stay tuned for more heroes and villains. . . 

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