Livin' la vida LUPUS: How I've adapted to a "vida loca" disease / by sylvia kronstadt

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Livin' la vida LUPUS: How I've adapted to a "vida loca" disease / by sylvia kronstadt
Sat, 03-08-2014 - 4:01pm

Get out, you bastard!

Sometimes it helps to fight Lupus ferociously. Sometimes it doesn't.

    I began having symptoms of Lupus four years ago. Extensive blood work indicated that I had an active and rapidly progressing autoimmune process occurring in my body. I was scared when I read about what Lupus can do to you. Actually, it seems that it can do pretty much whatever it wants, from rotting your teeth, to devastating your cognitive function. You are made to feel helpless as this beast rages through you, striking one organ system after another, without warning, and often without symptoms. "Your kidneys could fail at any moment," I was told. So could my heart or liver. This was a nightmarish state of chronic inflammation.
    Like most women who have responded to my previous posts on Lupus, I have gotten no help from the medical establishment. I really don't believe they have any idea what this disease is, how it works, or how to mitigate it. But I've come up with a few strategies that have helped me. Perhaps they'll help you as well.


My first symptom. It lasted nine months. It wasn't
 a malar rash, but the biopsy supported the diagnosis.


    Number One: Avoid the Healthcare Industrial Complex. If you are lucky enough to have found a doctor who is treating you effectively, of course this doesn't apply to you. But I haven't spoken with one woman who has gotten any help, except for Self Help. The medical literature on Lupus reflects a cluelessness that is shocking to the point of being comical. Doctors remind me of Monty Python, wearing white coats and solemnly spouting gibberish. Shut them up, pin them down, and they'll finally admit: "I don't know." Then you get a bill for $330. (questions for the "experts": http://kronstantinople.blogspot.com/2011/08/is-there-doctor-in-house-for-ladies-of.html).
    The cutaneous aspect of Lupus, as shown in the picture of me above, has not recurred, but since I am presently broadcasting my proud news about this Grand Remission of my Fiery Flare, it will probably be back full-force by tomorrow morning. That is how my world works. 

PROBIOTICS: GOOD FOR EVERYONE, ESPECIALLY US
    As I wrote in my first post (http://kronstantinople.blogspot.com/p/lupus-mystery.html), the swollen, shiny, florid rash vanished the day after I tried a more advanced probiotic than the one I'd been using for years. 
    Although it seems hard to believe, even to me, that the probiotic could have had such a quick, dramatic and lasting effect, I can't think of any other explanation. I haven't dared stop taking this supplement. It's become almost a superstition. I feel kind of stupid, but not very stupid. I am reassured each evening when I take the smelly brown caplet. Thank you, RealFood Organics. 
    As I have elaborated in earlier posts, there is growing evidence that probiotics do have a role to play in mitigating Lupus symptoms.
Probiotics help keep our gut flora and immune systems healthy and balanced.

    I also religiously take Vitamin D, which some researchers also believe is beneficial to those with Lupus. I take 1-3 grams a day. Since it is a fat-soluble vitamin, be sure to eat a few nuts or some fat-containing food to enable proper absorption.
    Doctors have expressed surprise that I have somehow been able to keep the rash from recurring. In general, they're like cold sores, in that they flare back regularly.

THE BUTTERFLY EFFECT
    The rash scared me until I found out what was causing it. Then that scared me, but not the rash itself. Frankly, the cutaneous aspect of Lupus didn't bother me that much (it didn't hurt or itch for the first eight months) (and I kind of liked the shock value). It freaked everyone out, except for babies in the grocery store. They looked at me sympathetically, and reached out their arms to me, as if to say, "Let me comfort you, sweetie pie." It was touching.
    I was afraid I would be left with scars, and one of my doctors said, "Oh, you will be. I can see them already." What a prick. My skin recovered fully.

The singer Seal is beautiful, despite his facial scarring from Lupus. Lupus can be cruelly disfiguring after repeated flares. FORGING AHEAD, WITH NO IDEA WHERE I'M GOING
  As I have previously reported, I have continued with my healthy lifestyle, and I have no doubt that this has helped me to keep the flares at bay. I eat a beautiful, colorful vegan diet. I exercise every day -- running, walking, weights and stretching. I take nutritional supplements.
    I am pissed off that I have this disease. I would prefer an adversary who shows his face: A disease that is well-defined and understood, so I can develop a fierce, targeted battle plan. But it hides. It lurks. It smirks. It is a terrorist.
    What can you do?

Should I lie down, or do a P90X workout? Does it matter?
    I have stumbled upon a few self-help tactics that have given me considerable relief. 

SINUS PAIN TURNED ME INTO A VERY STEAMY OLD BROAD
    Many of you have written to me about chronic sinus inflammation triggered by Lupus. It is a debilitating condition, that affects your appearance (mine, anyway: red, exhausted eyes), and even seems to affect my ability to function intellectually. I feel so foggy and sick and bleary that I can't stand to do much of anything. My whole head hurts. I lie in bed, and it seems that I can feel all the internal structures in my cranium, aching.
    Two strategies have been amazingly helpful to me. I had been irrigating my sinuses for years, but I realize now that this might have been too harsh. I used very warm salt water (filling my sinus cavities, using a turkey baster -- I should be on YouTube) and blew so hard that my eardrums squealed. When they realized, I was going to keep doing it, they stopped squealing and let me go ahead. The inflammation continued, despite what seemed like some alarmingly productive "blowouts" on my part.
It aches, it's dizzying, it drags me down.      So I finally decided to change course. For about six months, I have been using a steam inhaler for 12 minutes each morning, inhaling deeply and enjoying the moist heat. It doesn't feel like it's doing anything, but it apparently is. My sinuses feel essentially normal most of the time now, instead of feeling terrible pretty much all of the time.
    I had seen the PurMist inhaler advertised on TV, and that idiot Dr. Oz said he bought one for everyone in his family. ("I adore it," he said. He adores so many things!) So I logged on to Amazon to get one, and they were $149 ("regularly $170). How ridiculous:

Are you kidding me? What a ripoff. It's just steam.

      My ever-gallant and resourceful boyfriend jumped into his trusty Dodge Ram, roared down to Walgreen's, and got me a wonderful, durable "personal steam inhaler" unit for $20.00. I don't use the little attachment, so I'm getting a great facial at the same time. It remains as good as new after about 200 uses. You just rinse it out when you're done. There is no buildup of residue, no rusting, no problemo. I hardly ever buy anything anymore that doesn't turn out to be junk, but this is a quality product, probably made by slave labor in China (the PurMist probably is, too):

I love this! It helps me so much!

A FRAGRANT HELPMATE FROM THE MEDITERRANEAN
    The other factor that I believe has helped my sinus inflammation is Oil of Oregano, which is a remedy I learned about from a Born Again, right-wing osteopath on TV, who just happens to have a lot of excellent advice, mixed in with the Bible-thumping and quackery.
     I take two little capsules twice a day, and I smooth a little bit of the oil onto the interior of the inhaler face-mask as well (you are instructed not to put anything but water in the well itself.) Oregano is very aromatic, and it's been used for centuries as an antifungal, antibacterial and antiviral agent. Dr. Oz says the oil actually enters your sinuses and lungs, which sounds like a bad thing to me. Oil in your lungs? But the vapor is enjoyable, like Vicks was in the good old days, and I feel strongly that it benefits me. It really feels like medicine is wafting through your sinuses. Just don't use too much: It will burn, internally and externally. If you get pure oil, as I did, you may want to dilute it with a carrier oil. Canola, or anything like that, I think would be fine.

    
    I am not generally comfortable promoting brand-name products, because I don't want to be mistaken for one of those "mommie bloggers" who gets "free stuff" for endorsing products. I don't get free stuff. But, as with the Walgreen's inhaler, I feel good about naming a brand, because I have found it to be excellent, and reasonably priced. I like Puritan's Pride oil of oregano. This is a mail-order nutrition company from which I've been getting my vitamins for decades. They have oregano oil in capsules and liquid. I use both. They're surprisingly cheap. Because of all the media coverage, the liquid form has tripled in price since I bought it a few months ago. But the bottle below, at $12.39, will last you for more than a year.

Get three for $4.49 each.
Very potent and therapeutic.
A BALD-FACED TRUTH
    In an earlier post, I described my distress at what Lupus was doing to my appearance. The sinus inflammation was one aspect. Hair loss was another symptom, which is common among  those with this disease. My hair was thinning rapidly. It was shocking. 
  It makes you feel sad and powerless.
    I was bracing myself for the day that I would get a buzz cut and dye it white. Actually, I had come to terms with that, and decided it would be kind of cool. I'd get bod mods, a tattoo or two, a diamond in my nose, and some don't-mess-with-me clothes and combat boots. Take that, Lupus! I always try to flip the disasters of my life into jazzy adventures, and sometimes it works.
    I had read years ago that Black Currant Oil (as well as other oils containing gamma linolenic aid, such as Borage Oil) was good for the hair and nails. I didn't pay much attention to it. I was already taking too many supplements! And I assumed that my hair was just aging naturally -- not getting gray, for some reason, but losing its sheen.

    But then, along with Lupus, came the balding phenomenon. I discovered an entry on the web site of  best-selling, Harvard-educated MD and holistic health guru Dr. Andrew Weill, who wrote that Black Currant Oil (Ribes nigrum) may help lessen a variety of symptoms, including those associated with:
  • Autoimmune disorders (including lupus, eczema, and psoriasis)
  • Hair problems including dryness, brittleness, thinning, or splitting
  • Nail problems such as weak or brittle nails
  • Premenstrual syndrome
  • Inflammatory disorders
    So I tried it. I was quite amazed. I don't know whether it has moderated my Lupus process in general, since I don't know what kind of catastrophes are going on inside me, but I have to say that my hair hasn't been this healthy and shiny in about 20 years. The areas of thinning have disappeared. My fingernails are noticeably stronger and smoother. I don't believe this was a placebo effect. I never expect herbal products to work -- too many of them haven't.


Just $5.64 each if you buy three.

YOUR KIDNEYS ARE A TIME BOMB
    According to a May 4, 2012 article in Medical News Today, "Evidence indicates that 35% of adult Americans have evidence of lupus nephritis (diseased kidneys, leading to renal failure) at the time of lupus diagnosis, and 60% of patients with systemic lupus develop nephritis during the first decade after diagnosis." About 12 percent die within the first 10 years after diagnosis. 

What lupus flares can do to the kidney.     It's hard to process statistics such as these. From what I've read, most research on Lupus is targeted at lupus nephritis, but I have seen no evidence of progress beyond the old protocol: dialysis and kidney transplants, neither of which has a very good outcome.
   I have always consumed a lot of water. I thought of it as a cleansing thing to do -- to "flush" toxins out of my body. This may or may not really happen, but I continue to drink at least eight full glasses of water a day (on top of my coffee and herb tea), because it seems like a good way to keep those kidneys fresh and turgid. I put a couple of tablespoons of unprocessed, unfiltered apple cider vinegar in one glass of water a day. This product contains "the mother" of the vinegar, a concept that gives me strange comfort.
    The acid in the vinegar, as well as the pectin, raw enzymes, "good" gut flora and other active ingredients, exert many positive effects on the body, in addition to the cleansing effect, which I hope will benefit my kidneys. 
    Of special interest to those with Lupus, unprocessed vinegar is reported to ease stomach upset, strengthen bones (we are at much higher risk of osteoporosis than the general population), and loosen sinus congestion. Some people add honey, but I don't mind drinking it right down. I regard it as a health tonic. I don't expect it to taste like a chocolate-banana milkshake.

It's a popular folk remedy with a venerable history.
FISHING FOR COMPLIMENTS, AND FOR IMPROVED HEALTH
    I love Omega-3, and have been taking it for years. I increased my dose when I read that it helps control bipolar disorder, and upped it again when I read that this nutrient is especially valuable for those with autoimmune conditions.
    As with the other supplements, I can't assess what effect Omega-3 is having on my disease process. I have no doubt that it has improved my cognitive function over the past 15 years. 
My brain is so alive, it drives people crazy.     In the 1990s, it halted the beginnings of rheumatoid arthritis in my thumb joints, although they have recently begun to ache occasionally. And the effect on my skin and eyes has been dramatic. I no longer need body lotion, which I formerly applied all over, ever day, to my otherwise dry, itchy skin. What a time saver -- plus I'm not putting all those chemicals into my pores. 
  God this was so boring, and it took forever. I'm done! And I'm silky!
    My hands, which were quite wrinkled 25 yeas ago, are smooth and well-hydrated now. The ophthalmologist said my dry-eye condition is no longer measurable. He was impressed, because I had previously had one of the most severe dry-eye problems he had ever seen. I hardly ever use artificial tears anymore, even though dry eyes and dry mouth are common symptoms in several autoimmune disorders, including Lupus. Omega-3 is a wonderful product. I get this nutrient from supplements, flax seeds, walnuts, and canola oil.

    
    Omega-3 has potent anti-inflammatory effects. Even though I now have a disease that causes inflammation of the joints, I actually have less joint pain than I did years before I got Lupus.
    I have also begun taking a baby aspirin every day, thanks to the persistence of my boyfriend. These have been proven to have so many benefits, I guess it's crazy not to do it. Anyway, I do believe they have substantially decreased the redness in my eyes. They look normal most of the time now. I am very surprised. 

OKAY, LUPUS: I'M READY TO RUMBLE
    One of the most dominant and most remarked-upon effects of Lupus is the loss of that precious feeling of well-being that the "good lord" (or whomever) bestowed upon normal human beings (those of you who are not wracked with anxiety, neurosis, rage and depression) (and stress, exhaustion, loneliness and chronic pain).
    For many of us, that silvery glow of affirmation -- pleasure, satisfaction, a sense of autonomy, a joy in being alive -- is difficult, if not impossible, to achieve.
    Lupus is one more kick in the head. I find that it's harder for me to create endorphins anymore, even with the most vigorous workouts. For some reason, stretching does a better job these days, as well as the occasional bottle of Lortab (just three or four down the hatch, and suddenly, I'm happy! For about one hour!) 
Whose sick, magnificent mind dreamed this up?
    I didn't buy the Rumble Roller to address this problem. In my perverse way, I was attracted to it because it looked cruel. Maybe I wanted to be punished for something (let me count the ways). I have always said my first thought upon seeing the photograph of this bizarre contraption was "medieval torture device." Its web site calls it "a meat grinder."
    Naturally, I had to have it. I never dreamed that it would remake my body -- I just thought it would hurt like hell, and that I would be exhilarated by the pain (I know: sicko). 
    I do believe that over time, the muscles and fascia of my entire back, including my spinal cord, plus my neck, glutes, hip flexors, hamstrings and quadriceps, have gotten a "do-over." I'm different. I notice it many times a day. My body has acquired a level of equilibrium and optimal function that I don't think I've ever experienced.
    When you have a chronic illness, this is a great gift.

After the screaming ends, the ecstasy kicks in. It
really does "grind your meat," but it tenderizes it as well. I never knew I had so many butt muscles, but they all needed help, and they got it!

    Once again, I am uncomfortable advertising a particular product, but I find this damned thing to be magic -- and it has given me a sense of well-being again. 
    I have had a terrible back for 45 years. The improvement in my posture, pain level, flexibility, energy and persistent sciatica have been quite miraculous. I have two herniated discs with annular tears, sacral impingement, bone spurs, etc. I had excruciating back pain even in my 20s. Even though I will soon turn 65, and I am sure I am in the early stages of osteoporosis, my back is better than it’s ever been. I have been exercising and stretching it daily for decades. I have tried chiropractic, massage, a $3,000 epidural shot, rolfing, physical therapy, back braces, and biofeedback, as well as medication – and nothing has helped me before the totally hot Mr. Rumble Man. 
Use it everywhere. My neck is finally working again.
    I have never heard of anything that could relieve herniated discs, as the roller has done. It is good to use it both before and after exercise. And before your coffee. And before you go to bed. And while you are enjoying a creme brulee e-cigarette.
     It has even helped my sinus inflammation. That sounds far-fetched, but it’s proven repeatedly to me that it has this effect. After rolling around madly for awhile (it gets addictive...you forget where you are and what you're doing), I get up and blow my nose. Voila! Total clear-headedness.
    It’s hard for me to believe that the Rumble Roller has done so much for my pain, and my overall sense of physical well-being, but I can’t think of any other explanation.

BEGINNERS ONLY
    If you've never used a roller before, and the looks and/or price ($75) of the Rumble Roller deter you, I strongly suggest that you try a simple, cheap styrofoam roller. I have had mine since the 1990s, and it has been an invaluable part of my health regimen.
    I found that if I lay down on the carpet to do some back exercises, my spine was so curved and painful, I could hardly stand it. But after going back and forth on the foam roller for a few minutes, my spine flattened out beautifully. I got some good chiropractic-like pops as I rolled, which provided excellent relief. When I stood up, I felt I'd had a very therapeutic experience.
    I love the Rumble Roller, and it offers some special benefits, but you can achieve much of the same improvement with this product, which costs as little as $13.
(The black ones are more dense and cost more, but the cheap ones work fine.)
CLASSICAL GAS, WITH A MINTY TWIST
    Gastrointestinal complaints are among the most common expressed by those with Lupus. Yogurt helped me a lot at the beginning, but its effect on me isn't as long-lasting as it used to be. I recommend eating enough to feel that your stomach is "coated," and it does impart a soothing feeling.
    Peppermint Oil capsules have been proven in clinical trials to ease the symptoms of Irritable Bowel Syndrome (IBS). They have benefited me for years, calming down the spasms in my colon. Take them with food, to avoid stomach upset.
    If you're having problems with regularity (are you eating plenty of fresh produce, whole grains & beans?), don't take LAXATIVES! Sh*t! Just dump a cup of plain wheat bran (from the bulk foods section) (virtually no calories) into your cereal, and you will be scoured out so beautifully, you will jump up and dance.


SOMETIMES, IT'S NICE TO USE LUPUS AS A COP-OUT  

     "Just close the door behind you. I'll be in here for quite an extended recuperation."
    Don't be ashamed to exploit your condition, in a truly Machiavellian fashion! You might as well get something out of it.
    There is a certain euphoria in surrendering to illness. I think it's best that we do this sparingly, for our own welfare as well as for those around us, but to succumb, and collapse into the fetal position every once in a while, is quite rejuvenating:
    "I'm too tired. I'm flaring -- I'll have to cancel Thanksgiving, darn it. I'm on fire everywhere -- please just avoid me for a few days. I can't think. I can't remember. I'd better take another 'bed day,' if you'll be a sweetheart and wash my sheets for me. Would you mind running out for some mangoes, bananas, unsweetened chocolate soymilk and Dr. Bronner's Magic Peppermint liquid soap? I think a hot, tingly shower might help me a little bit."

    "Then just forget I exist, OK honey? Don't call me; I'll call you." Turn the sound machine onto the "crashing waves" setting, or "babbling brook," or "tropical birds," and just zone out.

We can make it a positive metaphor, to retain our sense of power.
    Ladies, we deserve periodically to exploit the shit we go through from all the Lupus absurdity and heartache, don't you agree? We can't be Warrior Princesses EVERY day. I am petitioning the Lupus Foundation to donate a fainting couch to each of us who has a credible diagnosis. Or maybe L'Oreal should pay.
    They're the ones who are always saying, "Because You're Worth It." We certainly are.


(Even when we're losing our minds, and doing our "primal scream" routines)