Walking in a Winter Wonderland

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Ok, so the title is a bit misleading. If you see me walking in the snow, odds are it is an emergency of some kind or not by choice. Winter is brutal this year for me. Most of the time, when the cold hits I feel it at least a little. Some days more than others. This winter is different in that every time I go out, I pay for at least a day or so. How? In pain, that awful joint pain that throbs and makes you wish you could just cut off the offending member. Ok, so that is a bit on the dramatic side, I admit, however it does hurt like the dickens and makes you a bit on the crazy side. One of the saying I use at times like this is, “I am a pain, when I am in pain”. Don’t say I did not warn you!

The reason for this title is that here where I live, we are expecting a major snowstorm beginning tonight and going through Monday. Blowing and drifting snow will make it hard to travel as well as the snowfall amounts. So basically, I am housebound. Oh, I have all the necessities of life here, don’t get me wrong. I just mean that I cannot go out into the snow.

You see, I have osteoporosis in my spine from the steroids usage for the lupus. Yes, pick your poison, do you want to live, albeit with fragile bones, or just wing it and hope for the best? Well, I went with the steroids and they really do help. They also really have serious side effects, like osteoporosis among others. That means when it gets slippery outside, I stay inside. I like my hips and spine just the way they are thank you. One slip and fall and  I could be laid up for a long time!

So, when you are out and about in the winter wonderland, remember to enjoy it. There are those of us who would love to be out there and having snowball fights, making snow angels and such but we know our own fragilities and watch from the windows. We do not want pity. We just want understanding and empathy. It is not easy being different and watching others have fun. The alternative though, is the possible fracturing of bones and more pain. We want to survive to see another snowfall, watch another grandchild grow, and feel alive. In the future, please be more respectful of us. We do not want to be different, we just are.

Lupus Now Magazine

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I got my first issue of the “Lupus Now”  magazine today in the mail and read it cover to cover. It was a great read all the way through! I found an interesting tidbit that I can relate to most days. It says in the magazine that lupies are more prone to being unsteady on their feet and are rather clutzy because of this instability. Wow! They know me!

Not long after reading this magazine, I found myself at a park with six of my grands. My daughter, who is an accomplished photographer (family only for now) was taking pics of them in various places and poses, individually and together. She yelled at me to come over to this tree she was working near with all six of the kids when I found myself literally tripping over nothing and falling hard to the ground.

Needless to say, I am bruised tonight. It could have been worse, much worse. You see I have osteoporosis in my spine from the years of long term high dose steroid use in combatting the lupus. It brought home to me that I really do have to be more careful because in a blink, I could sustain a serious injury and be totally out of commission for a long time.

Ok, it can happen to anyone. However, it is ironic to me that not long after reading that article, it happened to me. Go figure.

On the positive side, the pictures turned out great! Who needs Olan Mills when I have a capable daughter with an artistic flair and she takes much better pictures than most. If you have my fb page, you will see some of her work.

 

Lupus and Osteoporosis

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I got this information from webmd. It is interesting to me because I have both lupus and osteoporosis (from steroids use). It is important to remember that each person is unique and if you have any questions or concerns, please direct them to your physician.

What Is Lupus?

Lupus is an autoimmune disease, a disorder in which the body attacks its own healthy cells and tissues. As a result, various parts of the body – such as the joints, skin, kidneys, heart, and lungs – can become inflamed and damaged. There are many different kinds of lupus. Systemic lupus erythematosus (SLE) is the form of the disease that is commonly referred to as lupus.

People with lupus can have a wide range of symptoms. Some of the most commonly reported symptoms are fatigue, painful or swollen joints, fever, skin rashes, and kidney problems. Typically, these symptoms come and go. When symptoms are present in a person with the disease, it is known as a flare. When symptoms are not present, the disease is said to be in remission.

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health, 90 percent of those diagnosed with lupus are women. The disease is three times more common in black women than white women. Women of Hispanic, Asian, and Native American descent are also at increased risk. Lupus typically appears in people between the ages of 15 and 45. Unfortunately, there is no cure for the disease.

What Is Osteoporosis?

Osteoporosis is a condition in which the bones become less dense and more likely to fracture. Fractures from osteoporosis can result in significant pain and disability. Osteoporosis is a major health threat for an estimated 44 million Americans, 68 percent of whom are women.

Risk factors for developing osteoporosis include:

  • being thin or having a small frame
  • having a family history of the disease
  • for women, being postmenopausal, having an early menopause, or not having menstrual periods (amenorrhea)
  • using certain medications, such as glucocorticoids
  • not getting enough calcium
  • not getting enough physical activity
  • smoking
  • drinking too much alcohol.

Osteoporosis is a silent disease that can often be prevented. However, if undetected, it can progress for many years without symptoms until a fracture occurs.

The Lupus – Osteoporosis Link

Studies have found an increase in bone loss and fracture in individuals with SLE. In fact, women with lupus may be nearly five times more likely to experience a fracture from osteoporosis.

Individuals with lupus are at increased risk for osteoporosis for many reasons. To begin with, the glucocorticoid medications often prescribed to treat SLE can trigger significant bone loss. In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk. Studies also show that bone loss in lupus may occur as a direct result of the disease. Of concern is the fact that 90 percent of the individuals affected with lupus are women, a group already at increased osteoporosis risk.

Osteoporosis Management Strategies

Strategies for the prevention and treatment of osteoporosis in people with lupus are not significantly different from the strategies for those who do not have the disease.

Nutrition: A diet rich in calcium and vitamin D is important for healthy bones. Good sources of calcium include low-fat dairy products; dark green, leafy vegetables; and calcium-fortified foods and beverages. Also, supplements can help ensure that the calcium requirement is met each day.

Vitamin D plays an important role in calcium absorption and bone health. It is synthesized in the skin through exposure to sunlight. While many people are able to obtain enough vitamin D naturally, excessive sun exposure can trigger flares in some people with lupus. These individuals may require vitamin D supplements in order to ensure an adequate daily intake.

Exercise: Like muscle, bone is living tissue that responds to exercise by becoming stronger. The best exercise for your bones is weight-bearing exercise that forces you to work against gravity. Some examples include walking, climbing stairs, weight lifting, and dancing.

Exercising can be challenging for people with lupus who are affected by joint pain and inflammation, muscle pain, and fatigue. However, regular exercises such as walking can help prevent bone loss and provide many other health benefits.

Healthy lifestyle: Smoking is bad for bones as well as the heart and lungs. Women who smoke tend to go through menopause earlier, triggering earlier bone loss. In addition, smokers may absorb less calcium from their diets. Alcohol can also negatively affect bone health. Those who drink heavily are more prone to bone loss and fracture, both because of poor nutrition and an increased risk of falling.

Bone density test: Specialized tests known as bone mineral density (BMD) tests measure bone density at various sites of the body. These tests can detect osteoporosis before a fracture occurs and predict one’s chances of fracturing in the future. Lupus patients, particularly those receiving glucocorticoid therapy for 2 months or more, should talk to their doctors about whether they might be candidates for a bone density test.

Medication: Like lupus, osteoporosis is a disease with no cure. However, there are medications available to prevent and treat osteoporosis. Several medications (alendronate, risedronate, ibandronate, raloxifene, calcitonin, teriparatide, and estrogen/hormone therapy) are approved by the Food and Drug Administration (FDA) for the prevention and/or treatment of osteoporosis in postmenopausal women. Alendronate is also approved for use in men. For people with lupus who develop or may develop glucocorticoid-induced osteoporosis, alendronate has been approved to treat this condition and risedronate has been approved to treat and prevent it.

Woohoo!

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Well, today I felt a little better than I have in some time now. I am choosing to magnify the positive and eliminate the negative today. I was so fortunate to get quite a bit accomplished and feel better for it. I think the prednisone is kicking in, although still in lots of pain yet. I am hoping the doctor will help me out on that one somehow. At this point, I will go back on the chemotherapy if that is what it takes. I am sick and tired of being sick and tired!

Lupus is so not fair and so not fun! I know, we are not promised to have happiness and light all the time but you know, I wish I could have a few good days in a row! I am beginning to think I am going to have to deal with this wolf in a much more aggressive way for a time. My doctor knows how bad I hate and detest using prednisone, but when I am on it, it does help so I  will  take the moon face and weight gain if it gives me more time to spend with my family.

It is an ironic trade off. My joints hurt more with more weight, yet the medicine to help me makes me gain weight. The paradox is that prednisone is the least of all the “poisons”, or as we lupies call it, the meds, we have to take. High doses create problems like osteoporosis (which I have) and can cause you to have side effects as described below (from wikipedia)

Prednisone’s side effects are legendary in both the medical and patient communities. Patients usually ingest this non-synthetic corticosteroid drug orally. However, doctors administer prednisone in the form of intramuscular injection, too. Medical professionals prescribe prednisone for many medical conditions.

Prednisone turns into the steroidal product prednisolone after the liver has processed prednisone following administration. Its most common use is as an immunosuppressant that acts on almost the entire immune system. This makes it very useful in the treatment of autoimmune diseases, inflammatory diseases like severe asthma, severe poison ivy dermatitis, ulcerative colitis, rheumatoid arthritis and Crohn’s disease.

Doctors also use prednisone to treat the symptoms of many kidney diseases such as nephrotic syndrome, and to avoid and reverse tissue rejection following organ transplantation. The usual adult dose at the beginning of treatment ranges from 20 to 80 milligrams per day. The dose for children may be 1milligram per kilogram of body weight, with a maximum dose of 50 milligrams.

The side effects of prednisone include adrenal suppression, which can occur with periods of prednisone use to surpass seven days. Adrenal suppression refers to the body’s inability to synthesize natural corticosteroids, resulting in a dependency on the prednisone taken by the patient. This is why doctors do not recommend the cessation of prednisone when the patient has taken it for longer than seven days. They reduce the dose gradually over a few days in the case of short-term prednisone use, and over weeks or months in the case of long-term treatment. Stopping prednisone treatment abruptly can cause the life-threatening Addison’s disease, in which in the body no longer produces sufficient amounts of adrenal steroid hormones

The short-term side effects of prednisone use include high blood glucose levels. This happens most commonly in patients that are already has diabetes mellitus or is using medications that increase blood glucose. Other short-term side effects of prednisone include insomnia, euphoria and, in some cases, even mania. Using prednisone for long periods can cause side effects such as Cushing’s syndrome, weight gain, osteoporosis, glaucoma and type II diabetes mellitus. Upon withdrawal of prednisone after long-term use, patients also suffer from depression. Almost all long-term users of prednisone experience a reduction in their sex drive, as well.

Prednisone use can affect the eyes as well. The most common side effects in the context are glaucoma and cataract formation. These usually occur with topical or intraocular administration of prednisone, but they can also appear with oral, intravenous, or even inhaled administration.

Prednisone use of any period can give rise to many other side effects such as unnatural fatigue or weakness, abdominal pain, blurring of vision, peptic ulcers, infections, pain in the hips or shoulders, osteoporosis, occurrence of acne and sleeplessness. Some of the less serious side effects of prednisone include weight gain, stretch marks on the skin, swelling in the face, nervousness, increase in appetite and hyperactivity.

Doctors treat these side effects of prednisone symptomatically, since it is not always feasible to stop prednisone administration even when severe side effects occur. These are situation where they have to weigh the disadvantages of using a drug against the advantages and make an informed decision. One must remember that while prednisone definitely does give rise to many side effects, it is also a life-saving drug.

It is not to be taken lightly, this drug and yet, it is only the front line defense for lupus. Systemic lupus erythrematosis, or SLE, is not a pretty disease. While some are lucky enough to not develop a lot of issues with lupus, some have lots of issues. For each person it is different. That is why, when you meet someone with lupus, you never know the battles they are having.

So, in conclusion, I hope if you read this, you are a little more educated on one of the drugs used to treat lupus. I am hoping to educate anyone who reads this blog. It is my ultimate goal. In the meantime though, I will write about life experiences and share them here so others may learn the value of life and living, and treat others with dignity and empathy.