Those of us who live with chronic pain each day of our lives, have so many issues to deal with; as if the pain isn’t enough? In the Fairness Act written by Mother Nature, Fate or the Devil, they didn’t cover that little clause of how much misery would be doled out and to whom. Somebody screwed up when handing out the pain because some of us got too much. Don’t misunderstand me. I would be more than willing to give back all of it or even share it, but would that be fair? There’s that word fair again.
One of the additional little jewels of unfairness in my life is one brought about by one of the rheumatic diseases, still unnamed. I have been diagnosed with several of those types of illnesses over the years but seem to have bits and pieces of each of them. Truthfully, my friends, one thing I have learned these many years of going to doctors with the whole spectrum of rheumatoid disease, is the fact that many times your diagnosis depends on your rheumatologist or internist. The diagnoses can also change from year to year. Thus far I have had five diagnoses in this field/specialty. Eventually, you realize you must stop getting “hung up” on names and simply deal with your symptoms. I know it is a comfort to have a name for this “enemy” that is now us within our bodies because it somehow validates our pain and loss. Whether you or I have a name for this suffering or not, that old clock just keeps on ticking and our bodies are still being dragged along with time and age.
Now that summer is baking down upon our heads, it is time to talk about responses to the sun’s rays. As I’ve shared with you over the years, one of my early symptoms was a severe and surprising reaction to the sun. Just to recap briefly, I was working my job as an RN Director of Nursing in the central valley of California, you know, that polluted once beautiful state known for its sunshine and movie stars? I owned the only car I have ever truly loved in my entire life; a new baby blue Mustang convertible. Life was good, the kids were in high school and one about to enter college. My dear husband, Jim was advancing his career as a respiratory therapist and entering nursing school while working fulltime. I loved my job, as well as my little car but did notice my thighs were getting burned when I wore a skirt, each sunny day as I drove to work with the top down. My face became extremely flushed on the cheeks and nose and my scalp also began to itch and develop sore spots. I was exhibiting the classic malar flush or butterfly rash that goes with lupus and a few other rheumatic diseases. If I knew that at all, I tuned it all out in the busyness that was my life.
I also developed acute fatigue which I simply chalked up to motherhood, a more than full time job and just keeping up with life. The spots on my scalp became very painful, coin sized lesions and took forever to clear up. Simply running a comb or brush through my short hair was very painful. The sunburns became painful, itchy rashes which defied any of the standard creams I used. I was so busy I was able to do a pretty good job of ignoring all of these annoyances until I began to have pain in my sitter, tushie or bum. Well, you get the picture or maybe not a picture, no pictures please, but you get the general idea. Sitting anywhere made me miserable and caused my legs to lose all sensation. By the time I got out of a meeting, I staggered. When I tried to get out of my car after my half-hour drive home, I was a pitiful sight. One’s entire upper body rests upon the pelvic bowl with the hips, spine and sacroiliac joints forming the frame. I gradually knew there was something terribly wrong.
Each year I try to bring up this subject of photosensitivity because there are still millions of folks limping around, out in our world with this problem. They have had a day in the sun watching a game, gardening or just tanning at the beach or by a pool and wake up that same night with chills, achiness and a general flulike feeling. It is usually followed a day or three later with a rowdy rash appearing on the skin which was exposed to the sun. It can be a symptom of lupus among other diseases in this general category. Whether it is a trigger or a symptom is yet to be determined as one of those “chicken or the egg” type of situations. For me, the overall joint pain got worse, having started in my sacroiliac joints and moved to other joints. Always, the SI joints still remained a problem. I know, I know, I’ve gotta’ say it. “What’s a nice girl like you doin’ sittin’ on a joint like that?”
The obvious question is how to see if you are one of those rheumatoid patients who has a problem with sunlight and if you do, how to avoid it in this very bright world. I think you will find out if you face the scenario I have faced for thirty plus years of my life. If you have sores on your scalp after being in the sun, a painful rash that doesn’t seem to be your typical sunburn and any of the after effects such as diarrhea, nausea, chills and fever and the worse of all, perhaps, painful joints. The symptoms can last for several days after exposure to the sun.
Perhaps this would be a good time to revisit the basics of sunlight. There are basically three types of ultraviolet light: UVA which is ultraviolet A, UVB, which is ultraviolet B, and UVC, which is ultraviolet C. The two we have to worry about are UVA and UVB. UVC is basically absorbed in the world around us and the stratosphere. UVA ages the skin and UVB can burn it. Both of these two types can alter the DNA in skin cells and in those who develop sensitivity that DNA can die. The debris from those dead cells can travel and cause trouble throughout the body for some. For others, it can lay dormant and appear later as various forms of skin cancer.
This is basically a potential problem for everyone because many of our medications may cause photo sensitivity. Be sure to read about the medications you and your family members take. Keep and read those pamphlets that come with the medicine. Everyone can potentially be made photosensitive from certain medications. The most notorious for causing photosensitivity are non-steroidal anti-inflammatories, steroids and other drugs used for arthritis such as methotrexate and the anti-malarial drugs. Some blood pressure medications as well as cardiac drugs, anti-depressants, antibiotics and anti-histamines can also cause this problem. Remember, medicine is essentially dangerous if not given in the diagnosed amounts and taken at the correct time. Medication is also dangerous unto itself and we need to be knowledgeable about what we are taking into our bodies. Here we are, sick, in pain and surrounded by legalized poison but for many of us, that’s all we have and we grab onto hope of any kind like a querulous fly being chased by bug spray.
If you are one of us who suffer these symptoms, your life changes. I know mine did. I wear a hat every time I walk out my doors. I have a large variety of hats and have learned the hard way that straw hats with holes don’t protect the scalp. One year at Disneyland when our grands were young, I left my hat at the hotel and had to buy a hat at the theme park. I bought one with the cutest Minnie Mouse ribbon on it but with holes in the straw weave. I learned two lessons from that: never be lured by the cuteness of Minnie Mouse on a pink ribbon and holes in a straw weave will burn your scalp in that same pattern. From that time until now I only wear hats that are certified UVA/UVB sun proof or labeled SPF 50+. Both kinds of dangerous tanning rays are covered that way.
My favorite hat company is still Wallaroo hats. They are very reasonably priced, stylish and comfortable. They have them for infants, children and adults. I have several types of theirs and have had two of my favorites for many years. They are adjustable with a drawstring and washable in the sink with a gentle touch. My husband has had malignant melanoma in the past as well as every other type of skin cancer, including one our dermatologist had never heard of. I have bought him two of Wallaroo’s best men’s hats. Please let me know if you have any hints, tips or tweaks on how to get a stubborn man to wear a hat when he should. I could use them. So far, he wears one to the annual airshow, car shows and that’s it.
Since this whole subject has come to “light,” oh dear, terrible pun, more and more products are being produced to protect us from the sun’s rays. There are some great lines of sun proof clothing today, and come in all types of clothing you would wear outside. I have yet to see a sun proof nightie, but you never know and I don’t get around that much in this kinky world. I wear long sleeved clothing all year long. In the winter, the sun still shines so this is not just a problem in the summer. Even hazy or cloudy sunshine can be dangerous. It is more of a problem when bright, of course. You can find many fine sun proof clothes for men and for women online, also. The summer sun proof clothes are of a more sheer and therefore cooler fabric. Many of them have vents woven into the back and the armpits. All of these products are a wonderful surcease from the sun for many rheumatoid patients and skin cancer patients, as well.
Sunscreens are available by the thousands and come in all strengths of protection against the sun’s rays. According to the July, 2017 issue of Consumer Reports magazine, only so many of those can be tested by the FDA due to their tremendous workload. CR does much of its own testing and the list is a long one. Try to grab that article while the magazine is still at the market and read it for yourself. As a general rule, it is best to go with a higher SPF number because most of the ones they tested only performed at about half the rate they touted. Try a small size jar or tube of your favorite brand and see if it works for you. The amount they cost is not a factor, apparently in their effectiveness. They tested 58 sprays, lotions and the ones you apply from a stick, and only 20 of them tested were working well at half of their number on the label. Since each of us have varied types of skin considering our ages, whether our skin is dry or oily, amount of time spent in the sun, it is difficult to pick one that works for everyone. Some of the creams they mentioned I have never seen in our area. I usually like the Neutrogena line and use a quick drying version. Some of the companies leave you looking like a white-face heifer calf so be sure it rubs in well. It is recommended, always, to put on sunscreen at least 15 minutes before you go out in the sun and replace it, waterproof and not, within a couple of hours. Is that practical, no it isn’t so it’s up to us to know how much we perspire, whether in water or not and the general conditions we’re in. I have discovered over the years I get more sores, fever blisters, nose sore spots from the sun and find taking daily L-Lysine, a natural free form amino acid helps to clear up these eruptions. I take more when they are present and even find the L-Lysine lip ointment much less expensive and more effective than others of twice their cost. Be sure to report any unusual skin conditions to your doctor if you experience some of this for the first time. I had my first problem with the sun when I was 42 years old and was not on any medication at the time. Just be aware and also be alert for skin cancers.
All of us who live with chronic pain, whatever the source, know the shadows of life can be as challenging or perhaps, more so, than the sunshine. As long as we use precautions we can protect ourselves from most of the problems caused by sunlight. The darker regions of life, the shadows, cause us to have changes to contend with in every area of our lives. Many of us have lost our professions, relationships of all types and our bodily images. Many of us are unrecognizable to ourselves from body and facial changes. We have to remember who we are at the core or ourselves, be true to that self and soldier on. I know I make that sound so simple when it truly isn’t but it is a goal to shoot for.
Many of us suffer the darkness of depression due to all of these changes plus the fact we feel rotten most of the time. It is difficult to feel sunny and bright when your body and heart are aching. Adjustments to new physicians, new medications and all of their side effects, as well as the daily ups and downs of pain, all pull at us. Often, when I am asked how I am feeling I don’t know how to answer the question. Am I expected to be positive and say, “I’m fine, thanks”? Should I be truer to myself and say, “Oh, I feel like crap today, you know, like I always do,” thus embarrassing the well-meaning individual who asked? I often get the feeling others want whatever is wrong with me to heal, go away and cease. It is a difficult concept for others to realize you and I may have many illnesses and problems which are only going to get worse with time. How do you or I explain to others our fear of the future while coping with the dark optics of today? How do each of us cope with what we face each day and find the renewal to go forward and soldier on?
There are no right or wrong answers to that question. This way of life and indeed, everyone’s pathway is as individual as a snowflake in its conformation. I have discovered it can be made better and more tolerable by the choices we make on a daily basis. You and I do make choices from the time we awaken until the time we seek a peaceful night of sleep. We choose our attitude, our activities, our physicians and our obedience to what we know will help. We learn how to fight back and not roll over and lie there like a sleeping cat or dog, with our legs in the air, if we can get the there. Be pugnacious. Be steadfast and stubborn. Love yourself enough to fight for your very life.
We do not have to live life in the shadows of life. Your life and mine might be curtailed, compromised, painful and yes, scary but it can still be a good life. Any of you who have read my blogs over these last eleven years know the drums I beat when sending out this message and that tune has not changed. We need meditation or time of solitude to think, to pray to accept or to change. We need to observe and become a part of the beauty that surrounds us in this fabulous world. We need to note the blur of the wings on a humming bird, the double blossoms on a peach toned geranium, the way the shoreline laps at ones’ feet on the beach. We have mourning doves in our neighborhood who coo all day long. Those doves, along with the ticking of two wall clocks, a small snoring Yorkie, air fresheners that spray and traffic occasionally going by outside; these are the sounds of my daily life. Listen, smell, observe, laugh, cry and feel all that is around you. Live while you are alive my friends. Shadows, sorrows and suffering serve a purpose of enrichment. You and I change each day as we hopefully grow wiser, more aware and more cognizant of the wonders of this whole experience we call life.