Tag Archive | Lupus

The Bionic Woman?

 

Replacements of most joints are becoming commonplace, but some are replaced more often than others; and the hip joint is very likely the most frequently replaced joint. The following is an image of a normal hip:

normal hipNotice that the bone marrow has a blood supply, (the blood supply to the bone marrow is represented by the area with the red dots on the graph), ‘ball’ and ‘socket’ created by the ‘head’ or top of the femur and the acetabulum of the pelvis.

Over the course of years, the cartilage  can wear thin. When the cartilage doesn’t provide the cushion that it used to provide, pain results, and this pain can be quite severe and not always relieved by medication. You may have heard people use the term, ‘bone on bone’ referring to the bone in the ball rubbing against each other of the ball and socket. each. It may now look a bit more like:

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You can see on the patient’s same side that there is an accumulation of dead bone cells. These cells cause much of the pain: how? Bone cells are like any other cell in the body, they must rid themselves of debris and toxic wastes. This is the goal of one procedure commonly used to relieve symptoms: core decompression.

If pain from osteonecrosis still exists despite complete non-weight bearing status, ice, elevation and physical therapy with tylenol and nonsteroidal antinflammatories (NSAIDs) like ibuprofen and naproxyn, a surgical option is sometimes indicated. One of those surgical options is the total joint replacement, a THR.

anntated_THRIn the diagram to the left are the components of the hip prosthesis which are inserted by the surgeon to create a new joint.

The femoral stem is inserted into the thigh bone and bypasses any osteonecrosis or osteoarthritis which may be present.

The femoral head component has at it’s end a shiny metallic (titanium) piece which inserts into a plastic cup or liner. This liner fits into the acetabular component and doubles as cartilage to further protect the new joint.

This surgery has saved many from a lifetime of pain and if it works on me in a week, I’ll be free of hip pain for the first time in many years and one step closer to THE BIONIC WOMAN!

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“Organ Involvement in Lupus”

This podcast is one of a series produced by the Lupus Foundation of America for May which is Lupus Awareness Month. It can also be found in the archives maintained by C-span, available for public domain use. The Speaker interviewed is Dr. Diane Kamen, Associate Professor of Medicine, Department of Rheumatology, of the Medical University of South Carolina.

 

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Ordinary People who live Extraordinary Lives.

In watching this video, were you increasingly awe-inspired with each moment? Did you admire the performers’ abilities with each graceful, gymnastic and athletic move? I was speechless at such beauty and how humans could make these feats look so easy.

Speechless as I was, I needed to put some things in perspective; these are ORDINARY people who have accomplished the EXTRAORDINARY. I had to do quite a sales job to convince myself that I was not inferior to them for the sole reason that they had such an amazing ability; the ability to do something that I would ever attempt,

However, didn’t you, like I, feel the tiniest twinge of jealousy that these people could render a crowd speechless; and and on a good day, all we may be able to do is to get out of bed?

Then again, if I didn’t have to fight my way through this maze called ‘life,’ I, too, might accomplish what they’re accomplishing. Maybe not that dramatic but, I think you and I’ve accomplished other things, which to many people ARE  EXTRAORDINARY but to us seem ordinary. For example, how do you manage o have a life, in spite of lupus, epilepsy and… This morning, I challenge you to find your strengths and accept your weakness. For example, you may have have strong interpersonal skills or courage to face life despite many odds in lieu of athletic prowess.

I had to make that part of my thinking and my being. I won’t spend another minute of my life, wishing I had something that I don’t have. Life is too short to cry over what could have been; rather it is high time that I realize the doors that have been opened IN SPITE of lupus.

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What causes lupus?

Many scientists, but not all, believe that lupus is the result of a combination of factors within the body (internal triggers -meeting factors outside the body (external triggers). One of those internal factors/agents might be a hormone. An example might be an individual with elevated hormone levels (internal agent) who encounters any number of environmental triggers.

These same scientists have not identified a specific environmental trigger, but their theory seems plausible and from where I sit, possible. Assuming hormones are one of those internal agents, they can make an individual more susceptible to developing lupus, particularly the hormone, estrogen. Both men and women have hormones, but they are present with more regularity in women.

If this hormonal theory is correct, is it any wonder, then, that more women than men (90%) develop lupus? It has also been seen that before and during their menstrual cycles (when estrogen production is higher). This also occurs in pregnancy. But, this cause/effect theory is hard to prove, because there are many women with lupus who take birth control pills (heavy with estrogen), or other forms of estrogens and they don’t see an increase in their lupus symptoms-or many don’t have lupus, at all.

There is no specific gene that one can test for that is a predictor of lupus; but lupus can run in families. A genetic link with environmental factors has some thinking; when fraternal twins are raised in the same environment, only one may develop lupus. But if the twins are identical, there is a much greater chance (about 25%) of lupus developing.

So what of environmental triggers? As discussed earlier, it is hypothesized that susceptible individuals need to be confronted with environmental triggers before lupus develops. What might some of these environmental triggers be? They can be ultraviolet rays from sun and even fluorescent light bulbs. medications which cause sun sensitivity (like tetracycline), sulfa drugs (Bactrim and others), penicillin or some other penicillin-based antibiotics, stresses on the body (physical and emotional) or pregnancy.

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How Can I Learn to Accept My Lupus?

Once a patient learns he has lupus, possibly the next question that arises is how to make a living with lupus. A diagnosis of lupus stays with you for the rest of your life. That is the reason that figuring out how to live with lupus includes making a few changes-physical, emotional, otherworldly and possibly spiritual-inside your family, at work and inside your social circles. As a rule, these changes will change how you see yourself.

It is vital to understand the critical distinction between seeing yourself as a person who happens to have a chronic disease and seeing yourself as a person who is defined by being a chronically ill individual whose ‘lot in life’ is to be sick. I’m here to help you learn to see yourself as that individual who happens to have a chronic illness.

What do I need to do to continue working with lupus?

Whether you were newly diagnosed with lupus or are a long time lupus patient there are some vital points to remember that are critical for your overall well being. Besides, establishing a good relationship with your doctor and having a support from your family and understanding the basics of the disease very well. These are some important tips to towards a happier life with lupus.

  • Maintain a Positive Attitude

Having a positive outlook and forward thinking are perhaps the two biggest steps towards living as happily as possible with lupus.. Your attitude plays a key role in your symptoms because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance the quality of your life will ultimately lead you to cope up with the daily and ongoing challenges of living with lupus.

Sometimes maintaining that positive attitude is hard, very hard and seems to be impossible, but this is why it is important that you build into your life a support system; this system may include your church, friends and loved ones who understand what lupus is, if only marginally, and how lupus affects what you do and prevents your from doing the things that you used to love to do. They should also understand how not being able to do those things affects you. Equally as important is to understand that as of now, there is no known cure for lupus and that learning to live and cope with lupus and its challenges needs to be part of your lifestyle.

  • Maintain a Healthy Relationship With Your Doctor

Since Lupus is an ongoing, chronic disease you will be spending a great amount of time with your doctor over the years. Learn to make it quality time. It’s also very important to develop an honest relationship with your doctor and develop an ability to discuss each and every issue related to lupus. It is also very important to visit your doctor regularly and follow the medication regimen he or she prescribes; as well has have all the blood and lab tests he deems necessary, on regular basis.

  • Develop Strong Relationship With Employers, Coworkers and Family Members

A strong and reliable support network is important when dealing with lupus. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and that you can be counted on to ‘give more than your all’ on ‘good’ days.

A strong and reliable support network is important when dealing with lupus. Ssupport group and online networking with other lupus patients will help you to reach out and share the information and inspire each other. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and you will give more than your all on ‘good’ days. And also, support group and online networking with other lupus patients will help you to reach out and share the information and inspire each other.

  • Take An Active Role to Remain Healthy

Lupus patients need to take an active role to remain healthy throughout their life. One of the best approaches is to keep a diary of how your body feels. Paying close attention to your body, symptoms you may experience and documenting those symptoms is an important way to determine which medications work better for you and what trigger your symptoms.

  •  Include Exercise In Your Daily Routine

Exercising/working out is an essential part to make a happy living with Lupus. Talk to your doctor to the safest exercise options and include them in your daily routine, but some form of exercise is a must. See about including walking, yoga or Pilates are any kind of exercise, which improves your muscle strength and decreases stress.

  • Follow Precautions While You Are In The Sun

It’s best to develop the habit of applying sunscreen while you outside and reapply it for every 2-3 hours while you are in the sun. And also wear a wide brimmed hat to protect your face and neck. It has even been suggested that sunscreen should be worn indoors, too.

Obviously no one wants to have a chronic disease with no current cure. But today people who have lupus are living longer and can set attainable goals. But, ge kind to yourself and know that you are not alone and don’t set unattainable goals. Work closely with your doctors for a wellness plan and reach out to those who love you and stay motived and positive. And if in the case of any emergency please make sure to have an EHIC card with you for a medical treatment if you don’t live in the US.

~Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle,Fitness and Wellness. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC Card.




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Lupus Got Ya Thirsty?

Or: SOMETHING’S GOT YOU THIRSTY! There are many reasons for a dry mouth, but the following is often the scenario with a lupus-caused or Sjogren’s Syndrome-caused dry mouth:

Your mouth is always parched and going anywhere without a bottle of water is simply out of the question. At times you sound drunk; but, at 8AM? Could this be related to lupus and, if so, is there anything to do about it?

Many people with lupus develop a dry mouth. Why? Remember the antibodies of patients with autoimmune diseases that mistake the body’s tissues for foreign tissues and attack them? When they attack the mouth, the salivary glands in and around the mouth produce less saliva, really minimizing the salivary glands’ ability to produce ANY saliva. This happens almost all the time in Sjogren’s Syndrome (in fact, mucosal dryness is a hallmark of Sjogren’s Syndrome), but dryness is not unheard of  in lupus.

Saliva flow can be greatly decreased in lupus, Sjogren’s Syndrome and in other autoimmune diseases, sometimes to the point where it is nearly non-existent. If saliva flow is decreased, food particles aren’t continuously washed away (by that saliva), bacteria hide and thrive in the mouth’s warm, dark environment. Cavities develop, in fact you can lose teeth from lupus or Sjogren’s Syndrome. You may have dry, chapped lips, too. The tongue can be quite tender, so tender that even that very mildest of salsa is too hot!

Unfortunately, serious complications can result from a dry mouth; conditions other than someone thinking you’re drunk at 8 AM! Painful chronic infections of the parotid glands can develop when there is so much mucosal dryness that the normal cleansing mechanisms are disturbed and drainage from the parotid glands into the mouth becomes blocked. Tooth loss is another serious complication. Normally, saliva is alkaline and balances the acid in the stomach and esophagus. Gum disease and periodontal disease are increased in

With decreased saliva, the acid/base balance is interrupted and acid-reflux can develop. Another complication that may arise besides the seriousness of cavities or periodontal disease and parotitis is the possibility that the parotid glands become infected so often that they need to be removed; this can be real risky surgery because the trigeminal nerve can become involved

So, what can you do, when, in spite of frequent dental check ups, regular brushing and flossing you still develop cavities? Talk with your dentist and have a check up at least every 6 months to watch for gum disease. Your teeth are not just cosmetic, they aid in digestion, so do as much as possible to keep your teeth and gums healthy.

Also, don’t throw away that water bottle just yet! Just rinsing your mouth periodically helps keeps it clean in between meals. Brush several times a day with a soft toothbrush and floss at least once a day.

Your doctor or dentist may order prescription medications to stimulate saliva production and your pharmacist can help you find over-the-counter products that help stimulate saliva production and  relieving dry mouth. You can also suck on hard lemon candies, but remember that any product that you use should be alcohol-free and sugar-free.

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We don’t have to stop living!

Work as a nurse often involved counseling patients as they mourned the loss(es) they experienced due to a chronic illness. Slowly, they realized that there would be no moving on with their new life until they let go of the past, realized that the past was just that: the past, and that limitations were now a part of their lives. It was my job to facilitate this realization. The losses, the limitations would possibly always be with them, but limitations didn’t need to hold them back from attempting to set new goals.

This came naturally to me, because I could empathize from having had several chronic illnesses. I’d ‘been there, done that,’ “I have an idea of what you feel, but I can NEVER know exactly how it impacts you and yours.”

But, for some reason, I naively thought that the losses I experienced at the hands of chronic illness, wouln’t have the same effect on me, my life or impact on my loved ones. 

Then came the diagnosis of lupus and more complications; my ‘plate’ got progressively full, limitations grew and it became painfully clear that I wouldn’t ever be able to do the  some of things that I used to. But, did I do like I counseled my patients to do, accept their reality (accept that I had limitation), accept my reality and move on with my life? No. Not until this afternoon.

What happened this afternoon? A dear friend, whom I think knowa  me (possibly better) than I know myself, pointed out that by holding on to the past and not embracing the present and what I can do NOW: was preventing me from enjoying the present. Why I didn’t ‘get-it’ until now is anyone’s guess. But, everything in it’s own time!

I was still able to point out the accomplishments of others, and help patients understand that certain things are no longer within their power to do; but did I take own advice? Not until I’d spoken with my girlfriend; she doesn’t know the impact she’s had on my life.

Achievement against all odds was all I’d known my whole life and once the ability to a physically achieve was gone and I could no longer achieve those things, I lived in the past. Until, I found thie blog and other pursuits.

So, my advice? Understand that you may not be able to do the things you used to do; but that it is okay. It’s hard, so very hard, but once we learn to live within our limitations, we do more living than we EVER thought possible. ~Annie

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