Letter to friends and family
I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
Enjoy!
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
Toxic Fatigue
Thanks to the blog “Purple Thoughts” for this entry. I have read it before and it is well worth printing here. Hope it educates and explains it better than I can.
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.
European Lupus Erythematosus Federation
For a print friendly version click here THE TOXIC FATIGUE OF LUPUS
What is Lupus?
This is from the Lupus Foundation of America’s web page. You can read more at www.lfa.org.
What is Lupus
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
- Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
- 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.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
- More than 16,000 new cases of lupus are reported annually across the country.
Cats and chronic disease
I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!
I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.
Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.
When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.
While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.
I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need. Who knew?
So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.
Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!
Tremors In Lupus Patients
To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:
A tremor is an involuntary,[1] somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.
This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.
Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.
I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.
Burning
Well, it has been one of those days today. I am trying so hard to get all my ducks in a row and yet, seems there is always another landslide knocking me down again! So, here is your warning… this is a gripe fest so if you do not want to hear it, stop reading now. For those intrepid readers who continue on, get ready cause here it comes…
I have had some serious health issues lately. I have said that on here. What I didn’t say a lot about is that a mass was found on my ovary. Granted, it is a small mass. However, my doctor says it bears watching. Personally, I would just as soon have the whole thng yanked out. I am not using it anymore. It is on a wait and see agenda right now. That is a huge thing for me. Scares me.
I have also had this diverticulitis too. I feel like it is beginning to get infected again. This is worrisome to me too. Add this anemia I seem to have developed and you can see why I am concerned.
Now on to the griping. I have been trying to get my kids to bring the grandkids over. My daughter has but as of now, my two boys are not doing it. My oldest son, who has always been the closest one to me, is indifferent. He refuses to bring his kids over while I am living with my husband again. He says I have to come over there. Well, gee, if I weren’t so sick I might do that, you know?
To be fair, I have not told the kids the seriousness of the situation my health is in. I don’t want them comng under compulsion. So I guess I am basically just stuck until I get all my ducks in a row. Once all my docs have been seen, tests done, and all the other stuff, at that point I will have some decisions to make.
My kids did this before. When I was diagnosed with lupus, it took them a long time to acknowledge that I was sick. I would be told to get over it and get off my butt and maybe if I would exercise things would be better. I let it go then, although it hurt me so much, because I understood that they were afraid to acknowledge it because it meant I could die. I got that. It has been in the last five years or so that they understand it better.
I am just so upset that I am being penalized because I don’t fit “their” rules for what is acceptable. Like before.
They do not know, nor do they read this blog, so what I have written about my illness they will not find out about until I tell them. I do not want them to know until Iknow. I do not want them to worry. Even then, I am not sure what to tell them. I have glossed it over with them, and my mother, by not telling everything.
Anyway, I just needed to get this off my chest and I thank you for “listening”. I just needed to get it off my chest so I can calm down. Stress is not good.
Maybe tomorrow will be better.
Neurological Symptoms of Lupus
I got this information from the website below. I found it short and sweet. I have neurological minifestations from lupus and therefore this interests me. I thought maybe you all would like it too.
From: http://www.ninds.nih.gov/disorders/lupus/lupus.htm
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
Investigators researching lupus seek to increase scientific understanding of the disorder and to find ways to treat, prevent, and ultimately, cure it. Several components of the National Institutes of Health support research on lupus
Better if not for the Weather
Hi again! I must admit that even though I am feeling better since being released from the hospital, the weather is challenging me right now. In Ohio here, we went from 72 degrees int he morning yesterday, down to 21 overnight and snow. These transitions don’t do well on this body.
As much as I hate to say it, the short term warm weather really zapped me and now my joints are aching, my fatigue level is through the roof and I feel like poo. I am hoping the weather decides to stay cold for a bit now. I mean, good grief, let me stabilize a bit before spring hits and I go through the wonderful season change (insert sarcasm here).
How are you all holding up? Does the weather affect you as well? Thanks you all for hanging in there while I have been awol. I am making a concerted effort to get plugged in again and get busy with more information all the time. It is nice to get feedback and know that people are actually listening. You all rock!!
Updates updates
Nov 11,2012
Today and yesterday were absolutely gorgeous weather wise in these parts. I have been a little more agile myself. I decided to check off a few of my “me do” list. Since my husband and I are separated, it went from a “honey do list” to a “me do” list. I am not complaining. I enjoy it when I can tackle these things so for the last two days I have slowly been tackling my list.
I finally finished painting the dresser I bought at a storage auction for $1. It is all wood, no particle board. It has dovetails and pegs and beautiful cedar drawers. The outside had been damaged pretty bad. I sanded it down with my power sander and painted it a new color, like a chocolate brown color. I painted the drawer fronts too. I will not be using the old hardware so I am not completely done yet but the hardest part is done. Check that off the list.
I may have mentioned it earlier but I also tackled the kitchen and got it done with the exception of the floor being mopped. Whew! Check.
Today I have been slowly moving and rearranging the living room. It is mid way right now but I have the worst over with so it is downhill tomorrow for me to finish it. Check almost.
I have been washing some laundry too. I do not have a washing machine so I have been hand washing and then hanging them in the bathroom to dry. Old fashioned but clean. Actually it makes me feel productive and I know the clothes look cleaner too! Hm, note to self. Find an old wringer washer that works.
You know, in the old days they had a lot more work but I tell ya, the joy I feel washing those clothes, is priceless. The warm water makes my hands not ache so much. The drying clothes make this whole (small) house smell great! Another note to self, find a clothesline that is retractable for the bathroom.
I feel like I am becoming more positive each day. Funny how less pain makes me feel more positive.
So now, I am a productive kind of tired and I think a good book is in my near future. Toodles everyone and I hope you are all having pain free days!!
Call Me Mrs. Rip Van Winkle
Call me ms van winkle
written on Nov. 7 th, 2012
Ok. I admit it. I have slept for about 38 hours. I missed the whole Election Day dramas. I do not even know who won. I will find out but wow!! You see, my cable was stopped so I have no tv, phone or Internet right now. It’s not looking good for the future either. I think I was overly optimistic about how far I could stretch a buck. Oh well, this will be ok. I could make this into a no tv thing for a year and blog about it. Yeah, now I have a plan!! He he he.
So I will be writing my blog on my phone and whenever I am in a wifi zone, I will upload it. No worries, the blog will go on!!
I am motivated to get this place in shape for winter. I have moved furniture and such but finally have a plan in mind that I think will work. I just need to attack this plan one thing at a time. Overdoing it causes days of sleep, as shown by the last day and a half! All I did was walk to the library to use their wifi. Ok, so it is 3/4 mile round trip. I get it. Lupus wasn’t happy. Well pooh on you lupus! I will continue to live my life no matter what you do!! I needed to sleep anyway. Lol.
Seriously though, I will miss my few shows I watched. I always dvr’d shows and when I had a chance I would watch them. There are only a few I really enjoyed. I can deal with it. Plus, I can focus on more spiritual things too!! This gives me more time for studying the bible and adjusting my life to be a better Christian! See, focus on positives!!
So, in this hiatus from electronic gadgets, I will still be posting. Just please bear with me as I try to adjust and remain focused on the positives of my life!! Thanks!!
Pilates and Chronic Illness
Ok, I admit, I knew virtually nothing about this fitness program. My interest was piqued when I read an article in the magazine “Arthritis Today” discussing the benefits for those with various forms of arthritis. I have done a little research and found that Joseph Pilates had an interesting life. He started out as a sickly child who, as he studied human anatomy, developed this type of exercise that most people can do.
I have also found that even if you are in bed and in pain, you can still do some of these exercises and feel like you have accomplished something. I know that, even though I have not lost any weight, I have strengthened my core muscles by doing a few simple exercises. The beauty of these exercises is that you do not need a lot of specialized equipment. Yes, you can invest in them if you absolutely must have them, but Joseph Pilates actually developed them using common items he found around himself.
So, in the interest of examining some form of exercise that is not painful (Pilates did not want to cause pain, but to strengthen) I am posting this blog with information from a variety of sources, such as wikipedia and .
I have included a biography of Joseph Pilates as well. I hope that this will help some to be able to become stronger even if on bed rest.
*As with any other program of diet, exercise, or medical regimen, please consult your doctor before beginning any program. I do not endorse this program in any way, however, I am providing this information in the interest of knowledge and helping those of us with chronic diseases to find a possible program we can use realistically, not to enodrse this program over any other program out there. Each patient is a unique individual and must talk this over iwth their personal physician before beginning any program. I am also not providing the exercises themselves on this blog. Just information about the creator of the program and some of his quotes.*
Jospeh Pilates Biography (wikipedia)
Joseph H. Pilates was born in 1883[1][2] in Mönchengladbach, Germany. His father was a prize-winning gymnast of Greek ancestry, and his mother worked as a naturopath.[3] The family originally spelled their surname in the Greek manner as “Pilatu”, but changed to using “Pilates.”[citation needed] This caused Joseph Pilates much grief as a child, because older boys taunted him calling him “Pontius Pilate, killer of Christ.”[citation needed]
Pilates was a sickly child and suffered from asthma, rickets, and rheumatic fever, and he dedicated his entire life to improving his physical strength. Besides skiing frequently, he began studying body-building, yoga, “cong fu” (probably what we now call qigong), and gymnastics. By the age of 14, he was fit enough to pose for anatomical charts. Pilates came to believe that the “modern” life-style, bad posture, and inefficient breathing lay at the roots of poor health. He ultimately devised a series of exercises and training-techniques and engineered all the equipment, specifications, and tuning required to teach his methods properly.
Pilates was originally a gymnast, diver, and bodybuilder, but when he moved to England in 1912, he earned a living as a professional boxer, circus-performer, and self-defense trainer at police schools and Scotland Yard. Nevertheless, the British authorities interned him during World War I along with other German citizens in a concentration camp on the Isle of Man. During this involuntary break, he began to intensively develop his concept of an integrated, comprehensive system of physical exercise, which he himself called “Contrology.” He studied yoga and the movements of animals and trained his fellow inmates in fitness and exercises. It is told that these inmates survived the great pandemic of 1918 due to their good physical shape.
After the war (WWI), he returned to Germany and collaborated with important experts in dance and physical exercise such as Rudolf Laban. In Hamburg, he also trained police officers. When he was pressured to train members of the German army, he left his native country, disappointed with its political and social conditions, and emigrated to the United States.
The year 1925 is the approximate time when Pilates migrated to the United States.[3] On the ship to America, he met his future wife Clara. The couple founded a studio in New York City and directly taught and supervised their students well into the 1960s. His method, which he and Clara originally called “Contrology,” related to encouraging the use of the mind to control muscles. It focuses attention on core postural muscles that help keep the human body balanced and provide support for the spine. In particular, Pilates exercises teach awareness of breath and of alignment of the spine, and strengthen the deep torso and abdominal muscles.
Joseph and Clara Pilates soon established a devout following in the local dance and the performing-arts community of New York. Well-known dancers such as George Balanchine, who arrived in the United States in 1933, and Martha Graham, who had come to New York in 1923, became devotees and regularly sent their students to the Pilates for training and rehabilitation.
Joseph Pilates wrote several books, including Return to Life through Contrology and Your Health, and he was also a prolific inventor, with over 26 patents cited.[4] Joe and Clara had a number of disciples who continued to teach variations of his method or, in some cases, focused exclusively on preserving the method, and the instructor-training techniques, they had learned during their studies with Joe and Clara.
Joseph Pilates died in 1967 at the age of 84 in New York.
_____________ Famous Pilates Quotes: (from about.com)
Joseph Pilates wrote two books, Return to Life Through Contrology and Your Health: A Corrective System of Exercising that Revolutionizes the Entire Field of Physical Education.
Below you will find inspiring quotes from Joseph Pilates’ book, Return to Life Through Contrology.
Physical fitness is the first requisite of happiness.
Physical fitness is the first requisite of happiness. Our interpretation of physical fitness is the attainment and maintenance of a uniformly developed body with a sound mind fully capable of naturally, easily, and satisfactorily performing our many and varied daily tasks with spontaneous zest and pleasure.
Contrology is complete coordination of body, mind, and spirit.
A few well-designed movements….
A few well-designed movements, properly performed in a balanced sequence, are worth hours of doing sloppy calisthenics or forced contortion.
Contrology is not a system of haphazard exercises…
Contrology is not a system of haphazard exercises designed to produce only bulging muscles. … Nor does Contrology err either by over-developed a few muscles at the expense of all others with resulting loss of grace and suppleness, or a a sacrifice of the heart or lungs. Rather, it was conceived to limber and stretch muscles and ligaments so that your body will be as supple as that of a cat and not muscular like that of the body of a brewery-truck horse, or the muscle-bound body of the professional weight lifter you so much admire at the circus.
Contrology develops the body uniformly…
Contrology develops the body uniformly, corrects wrong postures, restores physical vitality, invigorates the mind, and elevates the spirit.
Contrology is not a fatiguing system…
Contrology is not a fatiguing system of dull, boring, abhorred exercises repeated daily “ad-nausem”.
[T]he only real guide to your true age…
The art of contrology proves that the only real guide to your true age lies not in years or how you THINK you feel but as you ACTUALLY are as infallibly indicated by the degree of natural and normal flexibility enjoyed by your spine throughout life.
This is the equivalent of an “internal shower”.
This is the equivalent of an “internal shower”. As the spring freshness born of the heavy rains and vast masses of melting snows on mountains in the hinterlands cause rivers to swell and rush turbulently onward to the sea, so too will your blood flow with renewed vigor as the direct result of your faithfully performing the Contrology exercises.
[A] body freed from nervous tension and over-fatigue…
Moreover, such a body freed from nervous tension and over-fatigue is the ideal shelter provided by nature for housing a well-balanced mind that is always fully capable of successfully meeting all of the complex problems of modern living.
Things To Avoid if You Have Lupus
I am posting this link here because it concerns those of us with lupus. However, I would like to add that while this list is good advice for most people with lupus, some of these things may not impact all lupus patients. The disease is known for manifesting itself in a multitude of ways in each person. In other words, what harms one person may not harm another or cause a flare. So, please read this article from Johns Hopkins and discuss it with your doctor. Enjoy!
Things to Avoid
If you have lupus or a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”
(1) Sunlight
People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.
(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.
(3) Garlic
Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.
(4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.
(5) Melatonin and Rozerem (ramelteon)
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.
(6) Echinacea
Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
Spring Cleaning
With our weather here in Ohio warming up, the thoughts of many turn to spring cleaning. This term, “Spring Cleaning” can mean many different things to many different people. For me, it means trying to clear out the house of the winters clutter and reevaluating the reasons I have kept things. It is the throw it out if you have not used it time. I like to donate what can be donated and reused.
Those who know me know this is a major challenge for me. If I feel great one day, I will work on things until I almost drop from exhaustion. In other words, I overdo it to the point of being down for several days afterwards. I know this. Yet I continue to do it anyway.
Why do I put myself through it each time? Let me explain. I have had a particularly rough winter this year. In fact, I have been confined basically to bed more than not. The “not knowing when I will feel the energy to clean again” mentality takes over. I am an impatient person. I want to do things and get them done. So, when the energy is there, I tear into whatever I can and hope to get all the way through it before my energy flags. The term “making hay while the sun shines” comes to mind.
In order to accomplish this, I work nonstop until I cannot anymore. Do I feel good about this? Depends. You see, we have one whole room of our house that is piled with stuff we have not unpacked yet. It has been there for over a year. Why? The reason is simple, when I feel good, I do the regular housework and only if I can get that done, do I think about working on that room. It might never get done at this rate. The sad thing about it is that it is all stuff that I have to go through. No one else can do it. The exception is my husband could do it but really, do you think that is going to happen?
While the weather outside is delightful, I want to enjoy the warm sunshine and soothingly warm breezes. I am not a lupus person who is affected too much by the sun. My dream day would be to nap in the warm breezes in the warm sunshine (without risk of burning, this is a dream after all) and feel that warmth permeate deep into my bones and joints. Like a jacuzzi without the water. Oops, sorry got off topic there.
So, it is the time for spring cleaning in our house. I think this time I may take it slow and easy, and maybe get more done in the long run. If I were not so impatient, I might get this to work. Hm, yeah ok! We will see. More than likely, I will go with the making hay thing instead. A lifetime of habits is hard to break after all. Have a great day everyone!
Stress Much?
I know we cannot control a lot of things around us. I mean, if we did, we would have to live in an insular world with big walls and no outside contact with anyone else. While it would be nice to not have to worry about anything, we must face that this cannot be for now. So, how has stress affected you and your autoimmune disease?
I have found that for some reason, different kinds of stress affect me differently. For example, when I get unwelcome news or some unpleasant revelation from someone in my life, it absolutely can send me into a worse flare than I was in. When confronted with this type of stress, for instance when I lost my job, it can send me spiraling out of control and manifest itself by joint pain, mouth blisters, severe fatigue, migraines and gastrointestinal issues. In other words, I become incapacitated, bed bound and there is nothing I can do about it.
However, I have found that when my stress involves an emergency of some sort, I can rise to the situation and be quite capable despite the big bad wolf (aka lupus). My body goes into control mode and I can react quite like a normal person would. It is only AFTER the event or emergency is over that the wolf bites me again. It seems to bide his time knowing that whatever it is will be over and then he can attack at will. Mind over matter. Um, I don’t think so. It is just a fight or flight trigger that carries me through the event and once it has passed, here comes ole wolfie to get me for helping out someone else.
Much of the literature that is out there about lupus mentions stress quite frequently. Stress is a known trigger for flare ups or worsening of flares.Almost everything I have read on the subject of stress in lupus patients tells us to avoid stress as much as we can. Not easy in this world today! If they can tell me how to do that, then they should win a nobel prize! Stress is unavoidable today but we, as lupus patients, have to minimize it as much as we can. How can we do that you ask? Here are a few suggestions:
1. Avoid situations that you know are stress laden if you can.
2. if you can, vent your anger on paper and then throw it away. (This is one of the techniques I use).
3. Indulge in a nice, hot bath with candles flickering and soft music. It is amazing how much this can help you.
4. Avoid the people who bring you stress if you can. We all have friends or family that call you up and rant and rave and then by the time you hang up, you are a bundle of nerves. Don’t do it!
5. Read a book. You can go to the library and stroll around checking it out and finding some good books to read. It helps me a lot to do this.
6. When times are stress laden, I sometimes will chant a meditation in my head, not out loud. It can be something like, “I refuse to let anyone bother me”. I repeat it over and over until I believe it. It works too!
7. When stress is off the hook and heavy, stop for a minute and evaluate if you are contributing to it. Seriously, sometimes we can do ourselves more harm than good.
8. Take a nap.
9. Enjoy a hobby. I love to scrapbook and when possible, I go to my craft room and scrap away! I find it to be very therapeutic and it calms me right down.
10. Put some headphones or earbuds in and listen to some calming music. My preference is celtic music but listen to what makes you serene and stress free.
We will call this my top ten stress busters. If you are able, exercise can help as well. I like to dance when my joints aren’t hurting so bad. I put on some old time disco music and shake my groove thing, well, I attempt to shake it anyway…ha ha. I don’t recommend this one in the company of others.
Ok, so I ended up with my top eleven, but these are a few of my favorite ways to de-stress from whatever this old world throws at me. Now, as I asked before, what do you do to handle the stress in your life? I would love to know and then I can find more ways to get rid of it.
Blues
Having a chronic disease almost predisposes you to develop some form of depression. Shoot, life can be depressing these days without the added component of a chronic disease. It is tough these days, in many ways. I am discussing the blues here. Not the sweet jazzy kind of music. I wish it were that easy.
The type of blues I am discussing is that deep dark place where depression takes that ugly turn into heaviness of your heart and mind and soul. Some of you out there will recognize this place as you have been there too. Others will not know what I am talking about. That is good if you cannot relate to what I am talking about. I pray you never experience it.
I am in that dark place right now. That all consuming darkness that roots out any hopes and dreams and effectively destroys them. The darkness also engulfs the heart and makes you feel worthless and useless. I know, sounds like a pity party. However when you are chronically ill, it can take on a life of its own. For example, when you are not able to clean your house, do the dishes or take care of your household, you feel useless. Your self worth takes a dive and you begin to wonder if you want to fight anymore.
You see, when you are dealing with a chronic disease you fight EVERY day, EVERY minute, just to do what most people take for granted. You are fighting an uphill battle and when you feel really bad it makes it even worse. It is no wonder that depression is there.
I am fighting this demon right now. It is winning too. I am really tired of fighting it and sometimes just wonder if I really want to continue fighting it. Giving up is an option, and there are days, like today, when I think how easy that would be. I am not suicidal. I do not want to harm myself. I just want to let go and quit fighting and let the natural processes take place.
I will fight though, because I do not want to die. I just feel like at times I am overwhelmed with daily life. I will get on with life and this will pass. Please do not judge me weak, because I have just been fighting for so long and I needed a break from the fight. Thanks!
This Infernal External Itching!!!
Hello there! Tonight I had to write about a common symptom that is experienced by lupus patients the world over. It is itching.
I am interested because as I write this, I am literally stopping and scratching. The itching comes and goes. It is horrible. It can range from my scalp to my legs to my arms to my face and neck. Well, you get the point. I scratch so hard, especially in my sleep, that I have been known to draw blood.
In the interest of research, I visited several web sites and health forums to see if I am in the minority or majority.It appears that most lupus patients experience this itching at various times in their disease course. Nice to know, yet I wish there were some types of treatment to help the itching stop. Personally, I tend to over take my benadryl, like every three hours or so, to help lessen my itchies. Does it work? Some, but not really well.
I read that some use cortisone cream. That is my next course I will try. For some reason, after reading others experiences, it seems that itching either precedes a flare or appears during a flare. The concensus seems to be that it appears when disease is active. Yippee!
To help those who do not have this symptom, let me explain how it feels. When you get a normal itch, you scratch and it is taken care of. This itching I get is bone deep, unrelenting itching. No amount of scratching seems to help. It absolutely demands attention because it is hard to stop it. Even in sleep, it can and does wake you up. I have drawn blood from night scratching. Even then it is not stopped.
Apparently the medical community in general are not sure whether lupus is causing this itching or if it is some other underlying issue. Some medical professionals think it is caused by dermatomyositis. Others think it is a form of vasculitis. I have posted about vasculitis in this blog before so if you want to read more about it, feel free to check out that post.
This time I am going to see about dermatomyositis. From what I read on the Mayo Clinic site, it is a form of skin rash that develops. Well shoot, that is not what I have. I do not have a rash where it itches, just this underlying itching. I may get a rash after I scratch it to pieces, but that would hardly be the same thing.
So, I will try cortisone creams and see if they help. I will update the progress or lack thereof. In the meantime, I wonder if you all could tell me if you have experienced this infernal external itching yourselves. I am interested is seeing how many of you have had this too. This is not a scientific study by any means, but I am interested because I wonder if it is indeed lupus related or something entirely different. Your feedback will help. Thanks and here’s to pain free days!
Jen
Listen Up Big Bad Wolf
I have had enough! I am getting ready to get you out of my life! I have almost given up several times, but this time I refuse to give up! You must leave! Sooner than later! I have had ENOUGH!!!!
I truly have been dealing with a multitude of symptoms and pain lately. I have been close to saying I am done, that I cannot keep going, that I give up and let the big bad wolf win. Yes, I admit it, lately there have been instances where I have thought how much easier it would be to just let go, and give up and let the wolf just take me. What has changed?
To begin with, another one of our warriors lost her own battle with the wolf last week. LilyKat was what we called her but her name was Liliana. She was not only a fighter, but she was also a spokesperson in ads that asked “Could I have Lupus?”. She was a young, vital woman with a passion for awareness and fighting the effects of this disease. She had been down, but never out. She refused to give in. When I heard of this brave young woman’s passing, it made me ashamed to even think about giving up! I need to continue on and do what I can to promote this disease and what it does to us who have it. LilyKat did, and so can I.
There are never any guarantees. This disease can swiftly descend and snuff out another warrior without so much as a hello. It can be unpredictable, painful and sneaky. Just when you think you are overcoming it, it rears its ugly head in a new way and you must fight again. It is not called the great imitator for nothing.
So, for you LilyKat, I will continue to fight the fine fight. As long as I am able, I will continue, for you, Suzanne, and all the others who were gone too soon. I will also fight for my children and grandchildren, so none of them have to deal with this disease. I will fight for the future and continue fighting until the wolf takes me. I will hope that this disease does not touch any others. Until then, I will continue to fight.
Today’s Rant
Today I discovered something about other people. To begin with, let me say that those of us here who have lupus have met this type of person many times over. It truly does not matter how many times we hear this from people, it still rankles when, either deliberately or unknowingly, people say things that hurt us. To illustrate,
I have lupus, am in a flare, and also have had the flu for over a week now as well.You know, fever, chills, coughing, sneezing, aching, that type of flu. Yeah, it sucks to be me right now. Now for the comment that galls me… another person I know is getting the flu now, same one I have been fighting, and says this to me, “I am not going to obsess or worry about it but I will go on with my day to day regardless of it”.
Yep, that was said to me yet again today. The implication of such a statement is that, if I would quit thinking about lupus, the flu, or whatever may be afflicting me, anad just move forward in the day to day realm of my life, I would be able to overcome it. Oh yeah? Well, here is my rant about this topic… the day that you have walked in my shoes is the day you can tell me how to feel or act or do things.
I really get steamed when this happens. It happens when I least expect it and really makes my blood boil. Especially when this statement is made by those closest to me, in my family. While most “normal” people can push through the flu or other ailments, those of us with lupus will actually make ourselves sicker if we try that approach. You see, our bodies are under attack most days as it is, and to be able to accomplish anything, we need to rest, frequently, and listen to our body when it says for us to do no more. It is hard to justify that you need to rest or the flu is making you feel worse, or anything along that line. For those of us who do indeed listen to our bodies and rest, we tend to not be as sick later. It is a type of trade off, we have to rob from Peter to pay Paul.
I will make this a little easier for those who still may not understand. I would LOVE to just push through and have a real life in spite of having the flu or something like it. I do NOT like having to cop out of chores and the like because I am unwell and need to rest. I DO wish more people would realize the pain they inflict by just saying something as simple as “You can push through it and you will feel better”.
In a way, by saying that and not really hearing what we are telling you about rest, and NOT being able to push through, you are making us feel like we are useless human beings. Yes, that is how I feel whenever someone says that to me. I feel like they either do not care that is hurts me, or they still have not learned that lupus can take me down and out with little or no warning in a variety of ways. I hope they are not being mean spirited, but ignorance can still cause pain and hurt me emotionally.
In this scenario, please feel free to learn more so you are educated and understand the daily struggles involved. Ignorance causes pain but education causes empathy which we as patients need from those around us.
If you would liek to truly be of assistance to us, try a few of these suggestions:
Call us and just listen, it really does mean a lot and helps us to vent the negatives out and be more positive.
Drop by and check on us. Believe it or not, a little company can make the whole day brighter.
Ask if you can help with something. There are days when I cannot do the dishes, and it sure is nice if someone else does them. It does not have to be something like that, but just seeing if youc an help in some way means the world to us.
Send a card letting us know you are thinking of us. Yes, it really helps.
Maybe run an errand for us, like pick up a few groceries while you are out. Call first and ask us if we need anything. Amazing how this can change a day. Maybe go pick up our prescriptions even.
Most of all though, just letting us know you are there if we need you can make a bad day better! You would be surprised how little acts of kindness can make the world of difference!
Thanks for listening and I hope you all have pain free days and blessings surround you.
Why I Walk
To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…
I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.
I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.
I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.
I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!
I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.
Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to
www.lfa.org and learn more about it.
If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.
On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.
Walk for Lupus Now 2011
Wow! It has been a busy week so far for me and it will end with the Walk for Lupus Now event on Saturday. Our team has raised $150 but as it stands right now, we will not meet our goal of $500. I am sad about that because we have met our goal the last two years. I am a goal oriented person and it does bother me. However, we have raised some and since our cause needs all the help it can get, anything is better than nothing! I have just been too sick to get out and beat the bushes as in the years past.
We have had some wonderful sponsors chip in to give us a good base to go with. Subway is an awesome sponsor with two different locations giving us freebies to give out! Kudos to them for their community spirit and giving!
Premier Innovisions is another local company that stepped up to the plate. The owner, Keith Turner, is my former brother in law and he generously gave so my granddaughter would have raised some money! His company is located in Franklin and does corporate IT management. More community spirit!
Chappy’s Tap Room and Grill in West Carrollton gave us a gift card good for $25 to give away as a raffle gift. I have eaten there, and the food is delicious and the atmosphere is great. Whomever wins this gift card will be getting a treat for sure!
Sonic in Middletown gave us ten peelie cards worth over $20 each! They did not hesitate when asked and gave freely! If you have ever been to Sonic, you know their food is pretty awesome and their milkshakes and drinks are amazing!
I have also talked with other local businesses that are willing to get their corporate offices involved and for that, we are grateful! This is only our third year and we are still building our corporate base so to find the willing businesses is a blessing! We are working on this now so we can get rolling on next years event!
We also found that JD Legends, the local bowling facility and concert/sand volleyball place has generously allowed us to book an event to raise even more money! We are booked for June and will be having a silent auction and a 50/50 drawing plus a fun night of bowling! I tell you, this community really does step up when asked to assist in something like this!
This Dayton/Cincinnati corrider can be proud of all the willing businesses who not only WANT to give but do so without any pressure. When asked, they do not hesitate but try to formulate ways to give us the assistance we need to make the event a success!
We are working on establishing new business relationships with corporations in the Dayton area and the Cincinnati area. Each year we will get better at this so please be patient with us. We have many ideas we are working on and hope to get this walk noticed on the national scale as well!
Our walk has more lupus patients in it than many others. This area of Ohio has many lupus patients who are suffering and living each day as best they can. I am one of those patients myself. Our walk is special because so many lupus patients come out and walk the walk! If others knew how hard this is, they would be helping out and not just ignoring us.
I guess that is it for me. I am proud to be a part of something that indeed does touch my family and many others. We are on our way and we will keep walking until a cure is found!
UV, Sunshine and Lupus
It is that time of the year again, when the weather is warmer, the days are longer, and family time takes precedence over work and school. I must admit that I love summer. It is my favorite time of the year. I am also one of the few lupus patients with whom the UV rays from sunshine do not bring about a lupus flare, with the exception of if I am in the sunshine and recieve a sunburn. A sunburn does cause me to flare up. That being said, I found this information at http://www.itzarion.com/lupus-sun-uv.html and it is useful information for all lupus sufferers or anyone with a sun or UV issue. I was surprised about the lights in stores! Hope you enjoy the reading!
Lupus, the Sun and UV Rays
Pain is triggered by many things when you have lupus. The main triggers are the weather .. and the sun. Photosensitivity is one of the most aggravating triggers of the disease. It doesn’t take much exposure to ensure a reaction of pain.
Lupus patients are very sensitive to UV rays, especially those who suffer from Discoid Lupus. It is a known trigger for a flare! That is why it is so important to wear sunscreen when outside in the sun. But what most people don’t realize is, they should be wearing UV protection inside stores as well.
UV rays from the sun can trigger reactions in the skin in the form of a rash, or purple spots under the skin called pupura, but will also cause muscle and joint pain.
People with Lupus must also be aware of “hidden” UV rays as in Fluorescent lighting. If you work in an area with fluorescent lighting, then you should be wearing a sun screen even while working inside the building.
Also .. for those of you who shop at Walmart or Kmart, most grocery stores .. or ANY store that uses the fluorescent light fixtures (long rectangle boxes with long tube-shaped light bulbs) .. please be aware that fluorescent lighting gives off UV rays unless the fixture is fitted with a special lens.
Most fluorescent lighting can be covered with a protective Plexiglas panel that allows light through but not the radiation that triggers the pain. There is a UV protective panel available for fluorescent lighting fixtures but because of cost, it is usually not installed in offices and stores.
A two hour shopping spree in Walmart is equivalent to a full hour in the sun. You don’t get sunburned but you do get the full hour of UV rays. Enough to trigger a flare of itching, rashy skin, aching muscles, low grade fever, and/or extreme fatigue.
And you thought the shopping itself was making you ill .. guess again!! It is the lights in the store!
So go prepared .. wear your sunscreen .. use a hat or a scarf .. and even though you may be tired from all the walking, you wont begin a flare that will last for several days.
Computer screens also give off small amounts of UV radiation. Most people are not affected by it, but people with lupus or other photo sensitivities should take precautions. Especially if you are in front of the screen for long periods of time (more than an hour at a time, for days in a row).
The best thing you can purchase to help eliminate the problem is a monitor anti-glare screen that fits over the monitor itself. It knocks down the glare as well as blocks the UV rays. 3M company makes several different kinds.
Limiting yourself to short periods of time in the sun will help eliminate some of the pain, but wearing sunscreen is a must! Sunscreen should be at least 30 SPF, with 45 SPF being a better choice.
For UV filters that turn fluorescent light into a UV-safe natural light.
http://www.naturalux.com/
For a UV filter for your computer monitor:
http://www.shoplet.com/office/db/MMMBF20XL.html
Medical Exemptions can be purchased from the Department of Motor Vehicles for Lupus patients.
http://www.autowindowtinting.com/stateLaws.ihtml
Then double check your own state laws to make sure the laws have not been changed since the site was updated.
DISCLAIMER:
The materials and information on this site are intended for educational and informational purposes only. The materials and information are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention.
Overdone again, oops!
Today had an auspicious start for me. If you have lupus you will understand this. I could not get out of bed. I made it to the bathroom and barely made it back to bed. Sounds ridiculous? It is my reality some days and this was one of them. I ended up sleeping until noon. I made myself get up and into my chair before my granddaughter got here. I don’t want the grandkids to worry about their meemaw so I pasted on my smiling face and pretended I was fine. After she left, I basically collapsed into my chair and have been here ever since. Yes, I get up to do some things but I tell you, this fatigue is for the birds. Have you ever been walking in sand and find you struggle with energy? Imagine that you are on a beautiful beach and in order to walk, you have to sink in a few inches into the sand and then you can walk. Well, that would be easy compared to how I feel today.
I knew I might have the rebound effect from the busy week I had last week. I know the signs, I had them all, and yet I push it out of my mind thinking that this time it will not happen. WRONG. It has happened and while I can pretend for a short time, the reality is that we did not get to the camper tonight (as planned) and instead we are home and while hubs sleeps, I am awake, in part due to the sleeping earlier in the day and in part due to the pain and other associated issues that come when I over do it.
So, this is my venting for today. I know there are those who think I should not discuss the incidentals of my life and how the disease affects me. However, I find it helps me to pour it out on here and then I can relax more and go about the business of life. If that offends some people, then you do not have to read it. For me, it releases the stress and brings a sort of peace. For that, I am grateful.
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Why I Do What I Do
There are a lot of people out there who may wonder why I do the things I do in promoting lupus awareness. The answer is as complex at times as the disease is. In answer to those that really want to know, I will try to explain it.
I have lupus. I live with it daily. It hurts. It is unpredictable. It impacts my life every day in some way. Now, to why I seem to obsess over it, as some would think, is simple. I feel better about myself and validated by studying it and sharing with others. It gives me a sense of accomplishment and allows me to vent my anger over the things I cannot control. It helps me, plain and simple.
Another reason why I give time to this cause is because it helps me feel like a viable member of society, because it is something I know about, and can help others with. I have already had to stop working because of it but it has not stopped me from wanting to have that sense of pride in doing a good job. Self esteem it is called and I could use some since not working anymore. To feel that, I promote lupus and help others understand about it. I ask organizations for grants and donations. I call businesses and discuss participating in the walk. It helps me to feel some control over lupus and to feel that I am doing something even if I am laying in bed and in my pj’s.
You see, I was always a go-getter, the first one at work and one of the last to leave. I enjoy working. I cannot hold a “real” job anymore because of the progression of this disease and the unpredictability of it all. I mean, who would want an employee who cannot say which days they can work and for how long?
In a perfect world, I could do a job from my bed if necessary. This world, unfortunately, is not perfect, yet anyway, and so I muddle on trying to keep my brain from rotting and pushing myself to do things that bring me satisfaction.
I have decided to work, as it were, at being an advocate for lupus. If that makes me a bad person, so be it. If people think I amd welling on it too much, so sorry. I live with it every day. They don’t. If what I do is causing them to think less of me, then they do not have to read. Plain and simple, I need to feel like I am doing something about this unpredictable disease and this is how I cope. Deal with it, or not, the choice is yours.
Sorry if this sounds harsh but I have been dealing with this for a long time now and it has been bothering me. I live my life as best I can with each day and how it presents itself to me. I will not be ashamed of my feelings or my experience. Thanks for allowing me to vent.
Prednisone, my enemy and friend
I am now getting into the prednisone arena where insomnia is happening. Prednisone is not a nice drug. It makes you swell up, gain weight, and have a terrible moon face. Don’t get me started on the irritability as well. However, it is also a friend in that it helps us to heal and get over a flare. It can save our lives when our body is fighting itself. So many good and bad things about it. The best thing is that it is better than not having it at all.
