Home » Coping With Lupus
Category Archives: Coping With Lupus
The Guardian Angel Cathedral, Las Vegas, NV My Husband and I Were Married Here Photo by Carol M. Highsmith Public Domain
It was about twenty years ago when I first traveled with lupus. I was in medical limbo at the time: the symptoms of lupus were evident but the disease had not yet been diagnosed. My husband and I were vacationing in Las Vegas, his favorite destination. We had been married in that gambling oasis and returned to the city every year, if circumstances permitted.
Las Vegas is Disney World for adults; real-world problems, like money and bad news, are remote and don’t seem to matter. As we walked around the city we knew so well, changes were evident. Old standbys, like the Dunes hotel, which had been our honeymoon retreat, were gone. In the place of these old Vegas institutions were more magnificent, resort-oriented complexes.
There were other, less obvious, but nonetheless pervasive changes that intruded into our trip.
We were walking along Las Vegas Boulevard–the Strip–one afternoon. As was our habit, we eschewed the use of taxis and buses. I struggled during our stroll to match my husband’s energy and my own pre-lupus standards. It has always been my inclination to keep personal battles private, but there was no hiding the fact on this outing that I was lagging.
Finally, my husband turned to me, and said, with his inimitable economy of expression, “It’s like you’re half a person.”
We’d already been in Las Vegas for a couple of days when this insight hit him. It had taken that long for him to realize that, much like his beloved Las Vegas, I had changed. Our vacation was the first time since I had become ill that we had been thrown together so much. Back home, in our every-day lives, we both had jobs outside the home–his entailed a lot of overtime. While he knew before the trip that I was experiencing health issues, the intrusive nature of those issues had not been obvious. But now they were unavoidable.
As we explored our Vegas haunts and sought to build upon memories from the past, my husband understood that the past was gone. He was confronted with a new reality: a new version of Vegas and a modified version of his wife.
It’s spring now and we are planning a trip to Vegas. Our annual pilgrimage was canceled once or twice in prior years because of health issues, but this year we’re ready. The World Series of Poker puts on its main event in late spring and early summer; my husband likes to be in Vegas for this tournament.
Lupus is background noise; it’s something I deal with as I go about my life. The trick is to keep this nuisance in the background and not let it derail my plans. There are certain actions I take to try to insure this will be the case.
The preparations I make for my trip may not be appropriate for other people with lupus, but I think many of these pre-trip measures may serve the needs of some who are living with lupus.
Some of the things I do to get ready for traveling are:
- Buy comfortable shoes and plan to wear them, no matter how they might look with my clothes. Break in the shoes before the trip. Even if old shoes look O.K., often the cushioning in the sole is not as good as it once was. I plan to do a lot of walking and I need to have joint support.
- Get extra medication and pack it in at least two places: my carry-on and my suitcase.
- Start my medication (low-dose prednisone) before I leave, so a stress-induced flare is less likely.
- Chill out, as much as possible, to relieve the inevitable stress of preparing for a trip. In my case, this means going to my reliable psychologist/hypnotherapist over the next couple of months for sessions. The therapist will give me post-hypnotic suggestions and help me to practice relaxation techniques, such as meditation and breathing exercises. I use the services of this very skilled and sensitive professional the way some people use medication: he’s an effective intervention and, unlike drugs, doesn’t have associated side effects. I’ve posted some links below to websites which describe the very real, therapeutic benefits of hypnosis–whether the goal is to reduce stress or alleviate pain.
- Locate a doctor in the Las Vegas area who will be available should I get sick while I am on vacation. This is the first year I am doing this. I’ve been sick in Vegas and this is a kind of scary thing to go through on my own. Having a recommended physician on hand will give me greater confidence.
- Pay extra $ to sit in airplane seats that have more leg room. Seems like an indulgence, but this really helps with joint and muscle problems. Airlines may assign free bulkhead seats to passengers with medical issues. However, the last time I flew and took the bulkhead seat I was not comfortable. Though I could stretch my legs I could not move the seat back. When neck, joint, and back pain are present, seat flexibility is important. I usually bring a small pillow to support my neck. It’s a five hour flight from New York (where I live) to Las Vegas. Added on to that time is surface transportation before and after the flight. With all of this, getting to a destination can be so arduous that by the time I arrive I am already in bad shape. So investing in comfortable seats ends up being more a necessity than a luxury.
- Stay hydrated. Blood clots are a risk for anyone on a long flight. Most people with lupus and those who are on steroids face an increased risk. Dehydration increases the chance of developing a clot and so does immobility. I try to get up frequently and stretch my legs. The longer the flight, the more important these measures become.
- Bring some good quality surgical masks (OSHA rating N95) in case someone around me on the plane is sneezing and coughing.
- Bring non-latex examination gloves and my own soap to protect super-allergic skin. The gloves are not likely to be used but the soap–and my own shampoo/conditioner–are essential travel accessories.
- Carry a letter from my doctor which indicates to airline screeners that I have a restricted diet and must carry special food on the plane. Then pack that food in my carry-on case.
- Bring a variety of hats for cover up just in case a restaurant/airline terminal has bright fluorescent overhead lighting. A good, broad-rimmed hat also comes in handy for protection from the Las Vegas sun–although this is a lupus antagonist I have learned to avoid.
- Make sure the hotel has a small refrigerator reserved. I usually buy a few supplies on my first day in town so that I don’t get into trouble by eating foods that I shouldn’t. Hotels will usually provide a refrigerator free of charge if there is a medical need.
My pre-trip activities obviously are geared toward my specific needs. There are travelers who may have more of an issue with blood clots or immune suppression than I do. There are people who really do have to stay out of crowds and who have more problems with mobility. Careful planning and a conversation with the doctor are always in order.
In preparing to write this brief essay on travel, I looked up a few websites which address the challenge of traveling with lupus. Some of these sites have practical, useful advice. I’ve listed three that I found interesting.
- Vacation Inspiration, in Lupus Now Magazine
- Traveling on the Lupus Foundation website
- Traveling Smart with Lupus, from the S.L.E. website
Several sites describe travel adventures which amaze me. One, Wherever with you, is authored by “Kate”, who has lupus. Her article, Traveling with Lupus, describes a journey into the Australian heartland. Kate understands that some people might think she’s crazy to embark on her adventurous vacations, but she explains that she makes accommodations to keep lupus flares at bay. Although I can’t imagine ever emulating her activities, I do admire her spunk and courage. http://whereverwithyou.com/2013/01/23/traveling-with-lupus/
Below are links to two of many websites which cite studies on hypno-therapy. The studies described below show demonstrated benefits when hypnotherapy was compared to control groups that had no therapy and to groups that had an alternate non-pharmaceutical intervention, like meditation. Of course, your doctor should always be consulted when you are considering introducing any treatment modality. Also, the doctor is probably the best place to get a referral. Word-of-mouth and advertisements are not reliable sources.
Two sites which discuss hypnotherapy are:
- Hypnosis as an intervention in pain management: A brief review from the International Journal of Psychiatry in Clinical Practice
(Excerpt from These Are the Faces of Lupus )
Block 16 in Glitter Gulch, at the beginning of the twentieth century, was home to brothels and gambling parlors. Local residents recall that prostitutes in scanty attire used to sit on porches and wait for their clients to call. Glitter Gulch, and Block 16, were both testaments to the fact that through much of Las Vegas’ history, the city owed its economic existence to the patronage of men – men who worked the gold and silver mines in one century and men who constructed Hoover Dam in the next.
By the time Benny Binion built the Horseshoe Casino on a plot that abutted Block 16, the seedy gaming parlors and brothels had been bulldozed and converted to parking lots. Not that Benny would have objected to the brothels, or any other income-producing enterprise. Legend has it that he had fled to Vegas from Dallas back in ’46 because the Chicago mob and local politicians muscled him out of town. The way some tell the story, Benny left behind in Dallas a legacy of multiple murders, bootlegging and organized gambling rackets.
When Benny Binion set up business in Glitter Gulch, Vegas was a pretty open town, but not open enough for Benny. He didn’t like the $50 limits that were traditionally placed on wagers, so he raised the limit to $500, and then he removed the limit altogether, (on first bets). Binion’s Horseshoe Casino became the first establishment to offer a no limit game. It was also the first casino to put down carpet (instead of sawdust) on its floors.
If Benny was anything, he was an original. Thus, in 1970 he began a new tradition, one which today has grown to attract draws participants and spectators from around the globe. It was Benny who hosted the first World Series of Poker tournament. While the tournament’s million dollar pot was originally the main draw, now the prestige earned by winning the title and the tournament’s gold bracelets are at least as coveted as the cash prize.
Today, Benny Binion and the Horseshoe Casino no longer sponsort the World Series of Poker. Benny died in 1989, and a few years later a corporate conglomerate (Harrah’s) bought the rights to the tournament. Before Benny departed from the poker scene, however, he pulled off at least one more “first”: the Women’s Tournament in the World Series of Poker. In 1986, Barbara Enright became the first Women’s Tournament champion and the first female to claim the tournament’s coveted gold bracelet. Nine years later, she won her second Women’s Tournament, and her second gold bracelet.
Barbara did not rest on her laurels. She continued to enter open (mixed gender) competitions, until, in 1996 she won the World Series Pot Limit Hold ‘em Tournament and, to the surprise of almost everyone (except herself) made it to the finals table in the Main Event – the only woman ever to do so.
In the shadow of block 16, where women were once sold for as little as a dollar and where they whiled their days awaiting the pleasure of men, Barbara Enright played with the best of them – and won. By the time she received her third trophy bracelet in 1996, Barbara had been diagnosed with lupus for twenty years.
Barbara Enright was born on August 19, 1949 in Los Angeles California. In her youth, she was licensed as a cosmetologist and worked at a number of jobs: cocktail waitress, bartender, and stylist for Hollywood celebrities. In the 1970’s she tried her hand at poker in the Gardenia California card rooms, where she did so well that she eventually quit her other jobs and dedicated herself to poker.
Barbara asserts that she has never played a “woman’s” game. She comes at her opponents with decidedly “unfeminine” aggression. Enright explains her success in the traditionally male-dominated poker room: she simply states that she is aggressive and that if a woman is too “soft” in tournament play she cannot succeed. But if she asserts herself and defies the expectations of the men sitting at the table with her, she can do “very well.”
On July 6, 2007, Barbara Enright was inducted into the Poker Hall of Fame, the first woman ever to be invited into that select academy. As of 2007, it was estimated that her tournament winnings exceeded $1,200,000 , more than any other woman in tournament history (at that time).
Today she lives in Hollywood California with Max Shapiro, a poker player and a columnist for Card Player Magazine.
Barbara once said that her dream was for there to be world peace and free medical coverage for every person. Perhaps the content of this dream was influenced by her experience with lupus. While most of her bios refer to the fact that Barbara has lupus, her challenge with the disease has remained private. Some writers refer to the disease as almost a footnote in her life; many writers do not refer to it at all. It seems that the kind of lupus Barbara lives with and the treatment she receives for it, are very different from the lupus that took Inday Ba’s life.* Since her diagnosis in 1976, Barbara has raised a child, managed a successful career in an exotic profession and earned a reputation for being smart, friendly and focused.
In the storied saloons of Glitter Gulch, where ladies were historically dispatched like grains of sand from the vast and unforgiving Mojave desert, Barbara Enright made her mark. A combination of raw talent, hardscrabble determination and a dollop of luck helped her to secure a place in the history of Las Vegas and the world of professional poker.
* Actress who died or Lupus at the age of 32
By A. G. Moore
One of the first medications a lupus patient may be offered is Plaquenil. While every drug has side effects, Plaquenil is generally considered to be “safer” than many other medicines prescribed to treat lupus.
Researchers are finding out more about this drug all the time; the current state of science indicates that Plaquenil is effective against lupus, and some other inflammatory diseases, because it creates an inhospitable environment for some actors in the immune process. In this way Plaquenil inhibits the immune response and thus also inhibits inflammation.
Though Plaquenil is considered to be relatively “safe”, there are several populations in whom great care should be taken before the medicine is prescribed. If you are over the age of 60, the chance for retinal damage increases. If you have psoriasis or porphyria, taking this drug may exacerbate your condition. Anyone with reduced liver or kidney function should also consider carefully if the risks of the drugs outweigh its benefits. Plaquenil can be extremely dangerous for children, especially children under the age of 6. People who have a metabolic disorder called G6PD run the risk of developing severe anemia on Plaquenil therapy.
The most commonly addressed side effect of Plaquenil therapy is retinal damage. Every responsible opinion I have read prescribes a visual screening before therapy begins and then a re-check several weeks later. While it is rare for eye damage to occur, especially if therapy lasts less than five years, it is important to keep in mind that once damage occurs, it is most likely irreversible. And the changes in the retina may not be noticed subjectively but can be detected by sophisticated testing in the ophthalmologist’s office. Many doctors recommend a yearly check-up; some recommend six months. If I were on Plaquenil I would go for six months because I’d like to detect damage before it goes very far.
With all of the warnings listed above (this is just a partial list of possible side effects) it would seem that Plaquenil is a dreadful drug. It really isn’t for most people. Lupus is a dreadful disease and sometimes you have to take out a big gun to control it. Plaquenil is actually one of the smaller guns in the arsenal against lupus.
Originally used as a treatment for malaria, Plaquenil is useful not only in treating SLE (though not severe SLE), but also other inflammatory diseases. The drug is supposed to be particularly effective at treating discoid lupus.
All of the sources I consulted implicate higher-dose and longer-term Plaquenil treatment in increased risk of eye damage. So if you are on Plaquenil for many years, certainly as many as 8, your doctor might begin a conversation with you about switching to an alternative treatment.
Several helpful sources I used in order to get information for this article were:
Plaquenil Data Sheet: http://www.medsafe.govt.nz/profs/datasheet/p/Plaqueniltab.pdf
I think anybody contemplating taking this medication should read and understand each of these sources. In making this recommendation I am operating on the theory that, though we may not know everything the doctor knows, we always should be vigilant in supervising our own medical care.
Negotiating a planet in which light is the source of life is strategically challenging for someone to whom UV radiation is noxious. However, with information and planning, life away from light can be managed. Photosensitivity, for most, implies an adverse reaction to UV radiation. Artifical sources of light, indirect illumination and UV screens facilitate a life in the shade.
However, none of these accommodations addresses a major obstacle in negotiating a life away from light.
It is likely that I have been UV sensitive all of my life, although this phenomenon has only been quantified in the last twenty years or so. When I was a child my siblings used to taunt me with a chant: “fun in the sun”. Apparently I did not enjoy activities that were carried on for long periods in bright sun shine. As I got older, I sought shade as a natural place of comfort. Pictures of me with my children as infants reveal a woman squinting against the sun under a wide-brimmed hat.
The first time a physician suggested I was reacting to UV was when a dermatologist noted that a rash that had broken out followed like a chart the areas of my skin that had been exposed to the sun. Another dermatologist told me to wear sun screen year-round because of a pattern of discoloration that had become evident on exposed areas.
There came a time when I was diagnosed with systemic lupus. It was not surprising that photosensitivity was one of the manifestations of my disease. A lot of things became clear to me–why I would break into a sweat when I was in stores with bright overhead lighting. Not only would I sweat but my cheeks would redden and my discomfort would grow so that I had to flee from the store, sometimes leaving my as-yet-unpurchased items behind.
Of course, as people who are photosensitive know, reacting to UV is not simply a matter of feeling uncomfortable. It is not even a matter of getting a little rash. UV exposure makes us sick.And that’s the part where public perception comes in. That’s the part other people don’t get.
When I say, “I have to get away from these fluorescent lights,” I don’t mean I might get a little headache. I mean that a disease process will be activated.
Last year I wrote a book about lupus and one of the things that prompted me to write the book was when I read about Hannelore Kohl, the wife of the (ex) German Chancellore, Helmut Kohl. Hannelore Kohl committed suicide. Every news item I read described her death in the same way: she had an allergy to “bright lights” and had been living in seclusion because of this allergy. She was depressed by her situation and so she took her own life.
Photosensitivity is included in the ACR’s list of diagnostic criteria. Estimates for the number of lupus patients who experience photosensitvity vary. Dr. Lenny Tuffanelli writes in Maryland Lupus Foundation newletter, “Thirty to forty percent of lupus patients are truly photosensitive” , though he cautions also that all people with lupus “may be harmed by excessive exposure”
Most of the estimates about occurrence are taken from the ACR, and implicit in these estimates are issues of reporting and interpretation. As with the larger problem of lupus diagnosis and treatment, the physician is dependent upon a patient’s impression, and the physician adds to the mix a clinical filter. It should not surprise anyone that the results of such a process are unreliable. For example – how precise is an estimate which ranges from thirty percent (Dr. Tuffanelli) to seventy-five percent (upper range of ACR estimate)? How can a doctor, or patient make a decision based on such vague numbers?
Dr. Victoria Werth, of the University of Pennsylvania Medical School, explains the process that causes a photosensitive reaction. Dr. Werth and her research team at Penn Medical School have “identified a variant of the human gene for tumor necrosis factor-alpha as a cause of photosensitivity in lupus.” Dr. Werth believes that identifying the gene variant that causes photosensitivity can help doctors to identify people who are likely to get lupus and can also contribute to an understanding of why the disease develops.
Dr. Werth discovered that in a those lupus patients who have one or two copies of the variant gene, exposure to sunlight stimulates the gene and subsequently the skin cells to undergo apoptosis (cell death). The occurrence of cell death is then a trigger for immune system activation.
The photosensitivity of lupus patients ( and of others who have diseases the induce photosensitivity) has a pervasive effect on lifestyle. Blithe pronouncements about the manageability of the condition with the use of sunscreens are ill advised. For one thing, sunscreens can be treacherous. My last experiment with one that I bought in Walgreens caused my face to swell so that I looked as though I was suffering from dropsy. Not only did my face swell, but my whole system was put into overdrive and I was ill for about a week.
One well-intentioned site recommends patch testing a new product. Patch test with extreme caution and maybe even medical supervision. I patch tested my new sunscreen twice, once on the inside of my arm and once on the outside. I waited at least 12 hours between tests and another twenty four before putting the lotion (liberally) on my face. Approximately eighteen hours after the last application I started to scratch. First the chin, then the arm. One side of the arm never reacted and the second only mildly.
Not only can sunscreens be harmful, but they are only partially effective. Sunscreen, long sleeves and a hat – all together are helpful. But this get up doesn’t mean its safe to wander around in full sun on a summer afternoon bathed in UV radiation.
I generally do not expect people to make exceptions for me or put themselves out, whether because of lupus or any other problem I have. However, I think that so many people have an issue with UV radiation (not just those who have lupus) that simple structural modifications can be routinized. Inexpensive filters can be placed over florescent lights, for example. Certainly in a medical setting this should be mandatory.
By A. G. Moore 9/2/2012
People with lupus have a greater susceptibility to infection (see: Lupus Foundation http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?articleid=411&zoneid=2). The increased risk for infection arises in many cases from the immunosuppressive drugs that lupus patients take (such as methotrexate, prednisone and Azathioprine). Increased susceptibility can come also from the disease itself, although the degree to which this is true varies according the individual. In a 2005 study, published on the ACR website (http://onlinelibrary.wiley.com/doi/10.1002/art.1780170102/abstract) infection rates were compared for hospitalized patients who had rheumatoid arthritis, nephrotic syndrome, and systemic lupus. It turned out that those with systemic lupus had higher infection rates than other patients in the study—even those with SLE were not on immunosuppressive drugs. The ACR article’s conclusion is that the higher infection rate for lupus is not associated with compromised renal function or immunosuppressive drug therapy but to some other aspect of the disease.
So what does a person with lupus do about this increased susceptibility? For one thing, stay away, as much as possible from people who are evidently sick (with an infectious disease). Also, in cold and flu season, keep away from crowds. Simple things, like washing hands and not touching your face, have been proven to be effective infection controls.
Another recommendation, endorsed by the Lupus Foundation, is to keep your vaccinations up to date. However, according to the Foundation, someone with lupus should never receive a live vaccine and should avoid exposure to people who have recently received live vaccine. Also, the possibility exists that if the flu vaccine is given during a lupus flare, then a serious complication may ensue (see: http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?a=411&z=2&page=3).
Personally, I approach flu vaccine season with ambivalence. While I was vaccinated most years without incidence, last year I experienced a pretty serious reaction very soon after being vaccinated. Not only did my arm blow up pretty quickly, but by the next morning I was ill and I stayed ill for about two weeks. Though I dread going through that again, I wonder how much sicker I would have been if I had caught the flu?
As for run of the mill upper respiratory infections, I take a few precautions. First of all, I use avoidance and barriers. I stay away, as much as possible, from people who are evidently sick (with an infectious disease). If I must be around someone who is ill—to nurse, let’s say, a family member— I wear double layer surgical masks (N95 rated) and disposable gloves. I wash the clothing that has been exposed as soon as I am out of the sick room.
If I seem to be coming down with a cold, I pop a Cold-EEZE lozenge into my mouth. The zinc in the lozenge is suppose to reduce the length and severity of the cold—if taken in the first 24 to 48 hours. The most recent study I found that supports the idea that these lozenges are therapeutic, was published in the Journal of Infectious Disease, in 2008 ( see: http://www.ncbi.nlm.nih.gov/pubmed/18279051). I usually don’t wait for a cold to develop to start this regimen. I keep Cold-EEZE in the house and as soon as my throat feels scratchy I suck on a lozenge and keep up the regimen till all signs of a cold have disappeared.
The final thing I do for myself is, if I am ill and things don’t seem to be going well, I call my doctor.
I don’t know if any of the measures I take will be helpful to someone else. I state again, as I always do: I am not a doctor. I read a lot and learn from what I read. I hope the information is helpful to others.