Tag Archive | Disease

What is lupus?

Lupus. What is it? I could say that it is an autoimmune disease, but you don’t answer a question with part of it’s definition! Rather, lupus is a chronic inflammatory disease, characterized by it’s fatigue. But anyone can get fatigued; so how do you differentiate between lupus and being tired due to lack of sleep or a host of other conditions? There are laboratory tests referred to in: lab tests helpful in differentiating lupus from other illnesses and they help predict symptoms which your doctor will order to rule in or rule out a diagnosis.

But I’m getting ahead of myself. Lupus is a disease, afflicting @1.5 million Americans, can be fatal and one in which the immune system of the sufferer goes haywire. Normally, cells of the immune system, detect foreign invaders, ‘mark them as foreign’ and other cells engulf them and destroy them.

However, in lupus, the immune system sees the body’s own cells as foreign, and mounts an attack on them: on SELF. That is why lupus is considered an autoimmune (immunity against oneself: auto). In lupus, any organ can be the victim of an attack. The lungs can be attacked in pleuritis, or the heart in pericarditis or the kidneys in nephritis.

The blood vessels themselves can be attacked in vascultis or the brain in lupus cerebritis. This short video, briefly explains autommunity, it you wanted to give friends or family members a brief tutorial, I’ve found this video to be very short and helpful:

Hits : 761

An interview-WITH ME!

By Maria Mongiardo
Annie is sixty-two and lives with her husband, Rey, in Colorado. Over the years, she was diagnosed with epilepsy, secondary Sjogren’s syndrome, fibromyalgia, lupus, and now complication of these. She has her own lupus blog called The Lupua Guru – Her blog is for people looking for information and advice on lupus and caregiving. She has been living an extraordinary life and shares her inspiring story with us.
How was your diagnosis made?
First, I was first diagnosed with epilepsy at age twelve, but like any kid, I did not think I was ‘different.’ In ways I didn’t know then, that was the first time my life changed. My Father and Mother saw to it that all of my growing needs were met; also, I grew up in a small town with understanding and extraordinary classmates.
Then, one eve in my junior year my life changed forever-again: I was leaning over the tub to wash my hair, had a seizure and hit my head on the unforgiving porcelain as I lost control and suffered major third degree burns. Rumor has it, that my Father, every bit the attorney, grilled the plastic surgeon about his abilities to save my life. At that time, people usually did not survive burns that I had. It was not long after that that my parents arranged tutoring for me, since I had to miss so much school because of reconstructive surgery. Despite my burn scars, I went to the junior prom with the ‘big man on campus,’ class president, and football star of any gal’s dream.
Then, my life changed again when my Father died quite early in life and quite unexpectedly. (how many times can a life change?). I was too young to absorb the meaning of the loss of my father, though I eventually felt the impact and it became one of the greatest losses of my life. I had grown accustomed to more attention from Mom and all of a sudden that attention was rightly divided as she had the responsibility of raising and putting all of us through college.
Then my life changed again.I was diagnosed with Sjogren’s Syndrome while in college, when I had mumps a bit too regularly; an astute clinic physician diagnosed parotitis, a hallmark of Sjogren’s syndrome and referred me to ENT which confirmed After a lip biopsy and other tests a diagnosis of Sjogren’s was made when I was about twenty.
Mom took charge again and saw to it that the medications for epilepsy were changed because my seizures were not controlled. She wanted me to have the life that she and her husband had envisioned for me. Seizures stopped as soon as med changes were made and, boom! I went to nursing school, moved to Chicago and began to LIVE!
My life changed yet again when I was diagnosed with lupus in 2002. With this diagnosis, my rheumatologist explained that it was a mixed connective tissue disease, which knows no bounds as far as the complications I could experience, I was granted a full disability in 2003. We then moved to Virginia for a better job opportunity for my husband and refinished an old house. No sooner did the final coat of paint dry, than Rey called me and told me that he had lost his job. But another job opportunity awaited us in Colorado.
What is your support system like?
For many years I have had tremendous support from my husband who at times has had difficulty understanding what I have had to go through. But for the most part he has always been there as have several very close friends and family. But, it’s hard, because everyone has his/her own life. Part of my issues have been how I emotionally have had to deal with what others have thought of me. As I have gotten older those feelings have not subsided. So my support comes in spades from my tremendous husband and all the wonderful friends I have made along this journey called life.
What do you do for work now?
I co-moderate an online support group for osteonecrosis (avascular necrosis). I edit and review books, was a freelance writer for eight years for national nursing magazines and I have my blog at http://lupusguru.com where I use my background in nursing to discuss topics related to lupus and put them in words that are decipherable to the many who have lupus or the caregivers for someone with an autoimmune disease.
Anyone with chronic illnesses knows that keeping ‘ologists appointments, having regular diagnostic testing, filling medications and all the pressures of this, the physical therapy that may go along with this-can take up too much time or sometimes be a full-time job, making you feel like a perennial patient; not a good feeling!
Do you take any supplements?
I tried acupuncture, Chiropractic was minimally effective, special diets and counseling to get over the many losses I would experience in my life. Counseling was most effective until I found out that the counselor did not HAVE A LICENSE TO PRACTICE! I just tried started to try some essential oils, researched carefully by a nurse friend who knows of my medical condition. Massage only felt good for a short amount of time, but had no long lasting effects, so I am back to only medications.
How do you stay so positive?
I have some wonderful friends; and what is to be gained by being negative, anyway? One of my friends said to me once; “it’s okay to get on your ‘pity pot,’ once in a while;” but “you need to give it a statue of limitations.”
Has lupus affected your marriage?
Other than the recent financial problems, it has strengthened our bond. I was a real active, type A personality and Rey was a type B personality. Before we married, it was agreed that I would slow down a bit and he would pick his tempo up a notch. ! My having lupus has forced him to become closer to the type A mode, because he does all the shopping, all the cooking, most of the cleaning, yard and heavy work around the house: I’ve given him the honorary type A title! Those things (shopping cooking, cleaning, etc.) are things that I would normally do, that I used to be able to do, and would love to be able to do; and now, because I can only do them on a very good day. I feel less a woman, less of a wife. Men, please realize and understand that your wives may feel this, too.
Any advice for people who are married?
The advice I have is for couples who are considering marriage; think about those vows BEFORE you marry, and think how you would react if the ***t were to hit the fan. Really think about the “for better, for worse, in sickness and in health, forsaking all others, till death do us part” part. What if your caregiver got sick? What if you found yourself in the same boat as Rey and me? Claws can come out. During your marriage, something will, maybe not lupus, but something else, possibly more tragic or probably less tragic can happen. If you are not 100% sure that you’ll stick around, do not take the vows. It is not right, nor is it fair, nor is the LOVE real. Remember, it could be you who gets sick and needs help.
Do you have any advice for people with an autoimmune disease?
My advice for people who have an autoimmune disease is to hook up early with a good rheumatologist as soon as you can and learn as much as you can about autoimmunity. This does not need to be all-consuming, but can I suggest a few good reads? “The Lupus Book” A Guide for Patients and Their Families, “ “The Lupus Encyclopedia” by Donald E. Thomas MD and “In Your Own Hands” by Larry Berkelhammer, PhD. The last book is great reading for those who realize the power of the connection between the mind and the body, but ALL of the books are excellent and well sourced. On my these pages, soon, I’ll be writing a review of the 2 latter books.
Is there anything else you do to stay healthy?
I have become the worst at this. I always used to eat and sleep well when I was younger; well, sometimes I missed out on sleep when I partied too hard, but by and large, I was in good shape as a triathlete (Was I good? That doesn’t matter!).
I hooked up with a physician years ago who felt a strongly about the connection between the mind and the body, and it was in teaching one of his classes that I met my husband. But what do I do to stay healthy now? Not as much as I should; the caregiver in me makes sure the needs of others are met BEFORE I meet mine. I have learned how to tell my husband what makes up a well-rounded meal! I participate in “Silver Sneakers” classes, offered by many insurance companies. I know, that’s not enough, but I am also receiving physical therapy for an ankle replacement that I had last October 2013 that sort of precludes strenuous exercise.
Is there anything you specifically would like people on lupuschick.com to know about your fundraiser?
I would like people to know that we planned for our financial future BECAUSE we knew I did not have a great health history and because of my being a nurse, we had an idea of certain worst-case scenarios that could play-out. We knew complications could arise for which we’d need extra money. We planned for long-term care and thought we had most bases covered. But, as John Lennon said,‘ Life is what happens when you’re busy making other plans.’ We planed on unemployment for as long a year, but not three and a half years and we didn’t foresee bankruptcy!
The fundraiser we set up is on GiveForward, an organization based in Chicago. Their mission: to promote medical fundraising. We need to raise money for bills that relate to lupus, medications I take for lupus, Sjogrens and epilepsy and problems they can pose-or medications for them can pose. Our specific site is:
It is HARD is to appeal to you and to others who don’t know us for help. But, I know if the shoe were on the other foot I’d try my darndest to help others. There is something lupies do: we stick together! Can you help Rey and me start over by donating to our fundraiser? Can you forgo a dinner out, a night at the movies or a movie rental, a few lattes, and donate to our fund? We would be forever in your debt. We need money to pay for a move to where we think there will be more jobs and all relocation expenses, first months rent and security deposit. We know competition for jobs can be stiff; but at least there will be jobs. At our site, there is an online donation form, though, if you are uncomfortable with giving information online, contact me at anowlin7@gmail.com and I will give you my snail mail address. I NEVER thought I would be starting over at 62!
We’ve received donations from people we don’t know. That in itself is so heart-warming. that I don’t know how to express the feeling; but how do you write a ‘thank you’ note to someone you don’t know?
What would you like to see on a website such as lupuschick.com?
In addition to the tremoundously well-orgnized autoimmune/lupus and resource information, I would like to see a financial planning section and a WHY it is so important that people with lupus or another autoimmune disease plan for their financial future, no matter how big or small their income. I should think that CFPs would be only too happy to contribute and they might offer free consults. One last thing for all you lupuschick readers: plan, plan, plan, and revise that plan.
Hits : 805


English: The sacroiliac joint

This is another type of autoimmune disease that is more common than people think, but is not known all that well. Truthfully it was something that I had never heard of until my oldest son was diagnosed with it at age 28. He had been living with back pain for a few years, pain that kept him from holding a job where he was forced to stay in one position for extended periods of time, or where he had to bend and lift a lot.  Different people have differing episodes of severity, but let me share this explanation from Gabe Mirkin, MD

“If your back is stiff and hurts when you move, if it hurts to touch two points at the side of the top of your pelvis where it joins your spine (the sacroiliac joint), and if your back x ray shows signs of this disease, you probably suffer from ankylosing spondylitis. You may also have pain and swelling in your eyes, lungs, and heart valves.” Most doctors think that ankylosing spondylitis is an autoimmune disease in which a person’s immune system attacks and destroys the joints in his back, rather than doing its job of protecting a person from infection. They treat you with immune suppressants that may make you feel better, but increase your risk for infections and cancers and shorten your life. Nobody really knows why you have this condition, but the overwhelming evidence is that you inherited your susceptibility from your parents and you got this condition from an infection.”

” When you are infected, your body protects you by making proteins called antibodies and cells called white blood cells that attack and kill the bacteria. Your immune system recognizes each specific germ by the structure of its surface membranes. Ninety percent of people with ankylosing spondylitis have a gene called HLA-B27, which means that their cells have surface membranes that are like the surface membranes on many bacteria, particularly those that grow and live in your intestinal tract. So, if certain bacteria get into your bloodstream, your immunity recognizes these germs by their surface membranes and makes antibodies and cells that attack and kill them. However, if the cells in your body have similar surface membranes, your own immunity can be fooled and think that you are the invading germ and attack and kill your own cells.”

There is one more piece to the puzzle. All people with ankylosing spondylitis have changes in their intestines that look like a disease called Crohn’s disease in which they develop bloody ulcers in their intestines and sometimes terrible cramping and diarrhea. If intestinal bacteria are to cause ankylosing spondylitis, they have to have a way to get into the bloodstream, and the intestinal ulcers of Crohn’s disease could be the portal of entry.” You can read more from him at CIDPUSA Foundation

From the Spondylitis Association of America

Is There a Cure?
Currently, there is no known cure for AS, but there are treatments and medications available to reduce symptoms and manage the pain. Recent studies show that the new biologic medications can potentially slow or halt the disease progression in some people. Please refer to the AS Treatment and Medications sections for more information.

AS is in a Group of Diseases
AS is the primary disease in the group of diseases known as Spondylitis, Spondyloarthropathy or Spondyloarthritis.Ankylosis means “fusion”, which may be fibrous, or bony.Spondylitis means “inflammation of the spine.”

Causes of Ankylosing Spondylitis
Although the exact cause of AS is unknown, we do know that genetics play a key role in AS. Most individuals who have AS also have a gene that produces a “genetic marker” – in this case, a protein – called HLA-B27. This marker is found in over 95% of people in the caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups, see our AS Diagnosis section for more information). It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis.

Scientists suspect that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people. HLA-B27 probably accounts for about 40% of the overall risk, but then there are other genes working in concert with B27. There are probably five or six genes involved in susceptibility toward AS. It is thought that perhaps AS starts when the defenses of the intestines start breaking down and bacteria from the intestines pass into the bloodstream directly into the region where the sacroiliac joints are located.

Who is At Risk?
The risk factors that predispose a person to ankylosing spondylitis include:

  • Testing positive for the HLA-B27 marker
  • A family history of AS
  • Frequent gastrointestinal infections

Unlike other forms of arthritis and rheumatic diseases, general onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well.”

This is not to say that every person that has back pain suffers from some type of disabling condition, or that it is all some type of autoimmune disease, but that if you or someone you know suffers from recurring and debilitating back pain, it should be checked by a Doctor that is knowledgeable. The longer a person suffers from the attacks on their spine by their own body, the more damage that can result.

Here is a partial list of the many resources available:

American College of Rheumatology — The American College of Rheumatology is the professional organization of rheumatologists and associated health professionals who share a dedication to healing, preventing disability, and curing the more than 100 types of arthritis and related disabling and sometimes fatal disorders of the joints, muscles, and bones.

Spondyville — A cyber-town for people with ankylosing spondylitis and their families and friends. Fellow SAA member Michael Smith runs an online support group to help people cope through humor, friendship, support, and information

The ASsessment in Ankylosing Spondylitis (ASAS) International Working Group — The ASsessment in Ankylosing Spondylitis (ASAS) International Working Group is an international group of experts in the field of ankylosing.

Ankylosing Spondylitis International Federation — The Ankylosing Spondylitis International Federation is a worldwide organization of national self-help societies for people with ankylosing spondylitis (AS). This site also lists spondylitis organizations’ contact information (address, phone number, email) for those without a website presence

OTIS, the Organization of Teratology Information Specialists — A non-profit organization made up of individual services (TIS) throughout North America. We are dedicated to providing accurate evidence-based, clinical information to patients and health care professionals about exposures during pregnancy and lactation.

As in all diseases, do not self diagnose, the possibilities of increased damage are not worth it. Find a reputable and knowledgeable Physician. There is plenty of information on the net of treatments, physical therapy and homeopathic remedies, but these should always be used in concert with your Doctor. And lastly, please always remember that you are an individual and that what works for one person may not work for someone else. Educate yourself but do it in cooperation with those who are interested in helping you.

2 years later I reposted this article by loopyloo in hope that it will get you thinking, praying for her as she fights a cancer battle. She has overcome much and will likely overcome this, because she has spirit and fight, But please pray that her spirit, her faith, and fight sees her through this latest challenge. 

I also repost this now because one of my oldest and dearest friends who is very active, and who went out of her way to make my ankle replacement doable and tolerable, was JUST diagnosed with this disease.  Back pain? Don’t take it ‘lying down!’

Hits : 2029

More Bi-Polar Alternative Treatments

While most Doctors stick strictly with pharmaceutical treatments for Bi-Polar disease, there are some who recognize the value of Alternative Therapy!

What Is an Alternative Therapy? According to Web MD :

A health treatment that is not classified as standard Western medical practice is referred to as complementary and alternative medicine (CAM). CAM encompasses a variety of approaches. They include everything from diet and exercise to mental conditioning and lifestyle changes. Examples of CAM therapies include:

  • Acupuncture
  • Aromatherapy
  • Biofeedback
  • Chiropractic treatments
  • Guided imagery
  • Dietary supplements
  • Hypnosis
  • Massage therapy
  • Meditation
  • Relaxation
  • Yoga

These are all helpful to some patients, but like everything else, each patient is different and what works for one will not necessarily work for another.

Another thing that needs to be considered as well is the question of is there an underlying cause. We cannot just assume that it is mental illness and treat it as such. Any good physician will take tests to see if there is a physical condition that is to blame for the problem. There are many disease’s that can trigger depression, and there are also many that can amplify it. Auto-immune disease’s are a prime example of a disease that can amplify depression, and many of the medications that are used to treat existing conditions, also can trigger depression or amplify it.

There are several blogs that emphasize Bi-Polar disease, and they have experts that can answer questions and lead people in different directions as far as help and treatment. Listed below are some related stories from them that are well worth checking out.

For those who have difficulty seeing a Doctor and paying for medication, some drug companies do provide help, and there are also drug studies that are a possibility. You can ask your Doctor or sometimes you can look up the drug maker and see if they are doing a study on a specific drug. You can also check and see if there is a University in your area that is doing a study on your disorder. Sometimes they will even pay you to take part in the study.

I realize that this is not for everyone, but it was an option that I considered myself many years ago when I discovered that I had Uterine Cancer and did not have any insurance. It is worth checking to see what is available at the very least. There are so many more ways to find help now than there were many years ago.

Additional Resources:



Help Guide.org

National Institute of Mental Health

Hits : 685

Psoriatic Arthritis

Psoriasis en espalda, codos y piernas

Image via Wikipedia

There are more autoimmune diseases than you can shake a stick at, around a hundred different types of arthritis alone. One of those is psoriatic arthritis. Most people when they think of psoriasis, think of patchy dry skin that looks terrible. What many don’t realize is that it affects 2% of the worlds population and of that 2%, 10% suffer from a more painful arthritic form of the disease. From MedicineNet.com we learn…..

“The onset of psoriatic arthritis generally occurs in the fourth and fifth decades of life. Males and females are affected equally. The skin disease (psoriasis) and the joint disease (arthritis) often appear separately. In fact, the skin disease precedes the arthritis in nearly 80% of patients. However, the arthritis may precede the psoriasis in up to 15% of patients. In some patients, the diagnosis of psoriatic arthritis can be difficult if the arthritis precedes psoriasis by many years. In fact, some patients have had arthritis for over 20 years before psoriasis eventually appears! Conversely, patients can have psoriasis for over 20 years prior to the development of arthritis, leading to the ultimate diagnosis of psoriatic arthritis.

Psoriatic arthritis is a systemic rheumatic disease that also can cause inflammation in body tissues away from the joints other than the skin, such as in the eyes, heart, lungs, and kidneys. Psoriatic arthritis shares many features with several other arthritic conditions, such as ankylosing spondylitisreactive arthritis, and arthritis associated with Crohn’s diseaseand ulcerative colitis. All of these conditions can cause inflammation in the spine and other joints, and the eyes, skin, mouth, and various organs. In view of their similarities and tendency to cause inflammation of the spine, these conditions are collectively referred to as “spondyloarthropathies.”

Did you read that last paragraph? That is something that a lot of people are not aware of. You think Arthritis, you think joints, bones, but not organs. Unfortunately, some Doctors are not aware that this disease can affect the organs either. This is one way that the internet has been extremely helpful in those who suffer from this disease as well as many others. But never, ever, totally rely on this form of education. It is a tool, a useful tool, but that is all it is. Your best form of information and help if you suffer from this disease or any other, is a knowledgeable Doctor.

To learn more websites like MedicineNet.com and others are out there and are wonderful resources, but they can not take the place of a Physician. They can also help with questions for you to ask your own Physician, as well as some of the newest medicines available as well as the old standards that sometimes work better than some of the newer ones.

Do you know someone who suffers from this debilitating disease? I suffer from it myself. Many of you may know me from my own website. I am quest posting this for Annie while she is recovering from her shoulder surgery. My name is Patricia aka loopyloo from My Blog and The Christian Gazette, I also post on Grumpy’s Opinions and Christian Blessings.

If you would like to learn more about this disease, or many of the other autoimmune forms of Arthritis, I encourage you to check out some of the information on WebMD,  MedicineNet.com, or some of the others out there.Another great resource is the National Psoriasis Foundation. If you would like to ask me questions, please feel free, I will answer what I can. I admit that I am not an expert, just a sufferer.

Hits : 1174