Lessons

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Today’s post is on lessons. Lessons are learned most every day in some form or another. The big lessons stick with us all our lives while the everyday small lessons somehow get swept under the rug. Each new day can serve up many varieties of lessons ranging from the sublime to the painful. I personally get some hard hits but try to roll with them when possible.

I am learning a new language. I began years ago just learning basic things and then let it slide. I have found a wonderful program called ILang, which makes it like a game to learn and I am progressing much faster and easier now,  It has flash cards and memory games (ok, on a good day memory is fleeting), plus games where the words are spoken and you pick the answers. So far so good. I am learning tagalog, the language of the Philippines. You see, three of my granddaughters live there with their mother, They know english too so it makes it nice to be able to converse with them.  I got lazy but now I am loving this way to learn something new. The app was free too! I am trying to keep this brain active. 

I have also been learning all I can about gardening with non GMO seeds. I will be starting my seeds next week indoors and I cannot wait to get gardening again. My garden last year was so enjoyable to me and gave me a focus while I was laid up after my surgery. It is so satisfying to me to get my hands dirty in the soil, planting nutritious foods to enjoy over the long winter months. This is going to be a big garden this year so I am excited.

I am also learning the art of canning my foods. It is wonderful to find that something I thought was difficult,is actually quite enjoyable too. I was going to learn a few years ago but after reading the instructions, I began to rethink it. The instructions look intimidating. I never thought I would do it. However, after purchasing my pressure canner and getting a quick lesson in howto can, I am finding this to be enjoyable and economical too. For example, I bought a large turkey in November. I cooked it last Friday. There are only two of us here so what did I do with the rest? I canned it.   I have raw packed chicken too. It is so simple. Who knew? I mean, when meat is on sale or if you get a bunch of some type, you can process it in canning and store it on your shelf instead of your freezer! Another lesson for me.

Sadly, another lesson in my life is about addiction. As I have stated previously, my husband has a problem with alcohol.  He has promised numerous/times to stop only to begin again once his body recovers from his most recent binge drinking. He cannot have many more detox’s in him. It is most painful to watch someone you love kill themselves slowly over time and know you cannot stop it. I am in a good place now. Peaceful. Did I move out again? No. I just found that by praying for peace, it does come. I also found the blog I mentioned previously, The Immortal Alcoholic, and it has given me insight into how to maintain a peaceful life living in the chaotic world of alcoholism. It is amazing to see that you are not alone, kind of like those of us with autoimmune disorders feel when we find others to share our experiences with and get feedback. Who knew?

I think a lesson I have been learning for some time is finally coming into focus as well. I am learning to accept my limitations for what they are and to live with what I have been given. It also brings me peace to know this. I have been bucking the system for so long now, because I did not want to admit I am unable to do many things I think I can do in my mind. Acceptance is great because now I can work fully with what I DO have not what I wish I still had. This lesson was the hard one. How do you do it? I am not sure I know how it happened in my case. Patience is NOT my superpower. I believe that once I realized that the blessings are still there, just a bit different, is when the peace began falling around me. Funny that. I guess I was so busy concentrating on the thing I could no longer do, that I did not realize there are so many things I CAN still do. I still mourn the loss of the those things from before lupus. However, I choose to think more of the here and now. It really is freeing.

That’ls it for now. I hope you all are pain free and looking forward to spring. I am… I have big plans!   

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What is Lupus?

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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.

Tremors In Lupus Patients

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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.

Periphreal Neuropathy Risk Factors

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Part 4 of this series from the Mayo Clinic website.

Risk Factors

Risk factors

By Mayo Clinic staff

Peripheral neuropathy risk factors include:

  • Diabetes, especially if your sugar levels are poorly controlled
  • Alcohol abuse
  • Vitamin deficiencies, particularly B vitamins
  • Infections, such as Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS
  • Autoimmune diseases, such as rheumatoid arthritis and lupus, in which your immune system attacks your own tissues
  • Kidney, liver or thyroid disorders
  • Exposure to toxins
  • Repetitive physical stress, possibly from occupational activities

More Neurological Information

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This information is from the NINDS website.

NINDS Neurological Sequelae Of Lupus Information Page

Synonym(s):   Lupus – Neurological Sequelae, Systemic Lupus Erythematosus

Table of Contents (click to jump to sections)

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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?

There is no cure for lupus. Treatment is symptomatic. With a combination of medication, rest, exercise, proper nutrition, and stress management, most individuals with lupus can often achieve remission or reduce their symptom levels. Medications used in the treatment of lupus may include aspirin and other nonsteroidal anti-inflammatory medications, antimalarials, corticosteroids, and immunosuppressive drugs.

What is the prognosis?

The prognosis for lupus varies widely depending on the organs involved and the intensity of the inflammatory reaction. The course of lupus is commonly chronic and relapsing, often with long periods of remission. Most individuals with lupus do not develop serious health problems and have a normal lifespan with periodic doctor visits and treatments with various drugs.

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.

Things To Avoid if You Have Lupus

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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/

Summer Heat and Lupus

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I am repeating this post because it is worth repeating this time of year.

 

This article I found online discusses the issues the summer season can provoke and offers some great tips on getting through summer overall. I know I have discussed how cold affects my lupus, but unless you have lupus, you may not be aware that summer heat and sun can also wreak havoc on bodies that are already off kilter. This information comes from the web :associated content on yahoo. I hope you will read it and use the suggestions it presents for  dealing with your lupus or your friend with lupus. It helps to educate others on the very real dangers the lupus patient can experience. Enjoy! I found it enlightening for myself and learned several new things.

Lupus and Heat

SLE or lupus and other autoimmune disorders often have higher incidences of flare ups during certain seasons, and for different reasons. Because of this, summer carries a high risk of danger to lupus and mixed connective tissue disorder patients in particular. Both extreme temperatures and sun exposure itself cause an already unstable body system to really go off kilter.

Because these disorders can impact the heart, kidneys and lungs, it is extemely important to try and prevent further damage to our bodies. Dehydration poses a much greater threat to us, so it’s important to remember to drink 6-8 glasses of water a day, and add other beverages such as fresh juice or refreshing iced teas.

Never go outdoors during the peak heat hours between 12 and 4 PM. Wear a big hat to shade your face, and an SPF sunscreen of at least 40. Learn to heed the signs of impending high blood pressure or kidney problems. If you begin feeling a tightness in your head, accompanied by a pounding pulse and often spots before your eyes, lie down immediately and call your physician.

If you stop urinating, or only are producing scanty amounts of urine, accompanied by intense headache, have someone drive you to the ER immediately. Do NOT try driving yourself, you may black out. As an example, I’ve been having periods of feeling as if I am going to pass out, something I’ve never had before. My husband drove me to the doctor who discovered yesterday my blood pressure is at a very dangerous 170/150. Needless to say it frightened us all out of our wits. When we asked why, she explained the combination of high heat, dehydration and constant pain from the still unhealed ankle breaks had cause my lupus to go into “crisis’ flare.

She, when asked for tips I could share with others, pointed out a few less obvious contributing factors. One is the light/heat from windows unless covered and draped. The damage from sun coming in an uncovered window is nearly twice as bad as being outoors itself. The same applies to flourescent lights. For some patients the UV light causes tremendous irritation for patients with SLE and Sjogrens.

Eyeglasses should be heavily tinted against UV rays. In Sjogren patients, who often suffer from dry aching eyes, the glasses afford them some relief and protection against the sun. Use eye moisture drops regularly to

stop the aching, stickiness and burning.

Swimming is an excellent way to ease fatigue and joint pains. During summers peak heat, try going very early in the morning, before 10 AM is perfect, or after 6 PM at night. Walking at a leisurely pace at those times is also a great way to get outdoors for a half hour or so. You might be surprised at how either of these things done two to three times a week, will improve your mood and your sense of fatigue.

Watch out for insect bites or other minor cuts or scrapes. Our systems are hyperreactive, making a small injury something to pay attention to. Especially if you are experiencing a flare up of your disease and being treated with Prednisone, Cyclosporin or other immunosuppressive treatment. Clean the area with soap and water, then lightly cover it with a bandaid treated with neosporin or other antibacterial agent.

Your appetite may be way off. So tempt yourself with small meals made up of fresh organic fruits or veggies, crackers and cheese or toasted english muffins with butter and fresh jam. If abdominal pain and diarrhea develop due to heat stressing, shower, wear something light and soft, and lie down in a darkened room. Take your meds on time, and notify your doctor if they are failing to control your pain or other symptoms.

Living with lupus or MCD doesn’t have to mean you have to avoid having summer fun. Like everything else involved with these disorders, it’s a matter of adjusting your schedule to adapt to the season, and to maintain a positive attitude. Relax, be aware of your body and don’t apologize to anyone for not being able to join in every single activity. And that means not doing things to harm yourself, just because you feel people may see you as lazy or somehow faking it. They don’t walk in your shoes, nor experience what you do. As I learned, much to my regret, is when you hurt yourself because of neglect or someones attitude towards you, you end up paying much too high a price. Enjoy life on whatever terms are safe and comfortable for you.