First, this is a great flu-season topic to cover, as we are surrounded by so many dealing with colds and various other bugs that can complicate our lupus or autoimmune disease self-management.

Secondly, consider the possibilities in what lupus researchers may be able to learn more about the miscommunications going on within our immune systems leading to our destructive inflammation.  What would our T-cells say into a transistor and how might that help us target a specific conversation that, when modified, could change the entire dialogue for us?

It is still in it’s infancy, but I am going to be on the edge of my seat watching this potential unfold.

Visit the article and great (i.e. easily understood) video  that goes along with it.

My friend Jo-Ann has graciously offered her experience with us today~

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My Lyme Disease Story

The tick bite

A little over 9 years ago I was bit by a deer tick. It was in me less than 24 hours, most likely less than 12. I had no “bull’s-eye” rash at the bite site. It wasn’t until weeks later that I started having symptoms.

At first it was my right ankle. It swelled up and hurt to put any weight on it. I went to the emergency room where the doctors took X-rays and determined that I had not broken anything. They surmised that I must have sprained my ankle even though I had no recollection of any trauma to my ankle. I hadn’t twisted it or dropped anything on it. There was no logical reason that my ankle was hurting. The doctor at the ER sent me home with an air cast and anti-inflammatory medication and told me to elevate my leg.

After several weeks, the pain in my ankle did ease up, but it was replaced with pain and swelling in the opposite knee. Again, I could not imagine why it hurt so much, and was sent home from the doctor with anti-inflammatory medication and no real explanation for the problem.

By the time the pain in my knee eased up, my wrists had started to swell. I couldn’t imagine what the heck was going on with my body. I walked around with wrist guards on for several weeks thinking it must be carpal tunnel from all the typing I had been doing. Around this time, Eric said to me, “Maybe it’s Lyme Disease. You were bit by a tick a couple of months ago; maybe you should go for a test.”

Lyme disease was the furthest thing from my mind at the time, but it did make sense.  The symptoms kept moving from place to place and it really couldn’t hurt to be tested.

I went to the local Urgent Care Center to get a quick Lyme test. The doctor there was nice and efficient, and told me they would call me with the test results. A few days later the doctor called me to say that I had tested positive for Lyme disease and that he was calling in a prescription for Zithromax. He told me that I should feel better in a couple of weeks.

At the end of week two I was back at the Urgent Care Center.  Not only were my wrists swollen, but now my ankles and feet were swelling as well.  The doctor ordered another round of Zithromax and told me to come back if I wasn’t feeling any better.  Two weeks later I was back.

At this point the doctor said to me that this was beyond his level of expertise.  He said that he could send me to an infectious disease specialist or a rheumatologist.  He felt that the rheumatologist was the best choice because he could treat me for Lyme disease or anything else that was causing all this joint swelling.  He set up the appointment for me and sent me on my way.

Had I known then what I know now, I never would have gone to the appointment.

My first visit with the rheumatologist

The rheumatologist was a nice man with very good credentials. He worked with Brown Medical School, teaching our future rheumatologist. He frequently gave speeches and workshops for the Arthritis Foundation.

He listened to my story and took my medical history. It is important to mention that the interview process ended when I told him my mother was diagnosed with rheumatoid arthritis (RA) when I was 10 years old. He then examined me and told me that he thought that I had rheumatoid arthritis. I protested because all my problems started with Lyme disease, and I wanted to know he was sure it was RA and not Lyme. He said was that he wanted to do some more testing but he was fairly certain that it was RA that was causing all the swelling. He told me that we needed to do something about the swelling before it caused more damage and he prescribed Prednisone. He told me I would feel better.  He gave me slips for blood work and told me he wanted to see me in 2 weeks.

When I went back to the rheumatologist, he told me that the test results showed that I had rheumatoid arthritis and that it must have been a false positive Lyme test. When I again questioned the fact that the Lyme test had come back positive and that all these symptoms had started after a tick bite, he said that it was just a coincidence that the symptoms appeared then. I wasn’t completely convinced that I had RA, but I was feeling better and I had been in such pain before… So I decided to give him a try and see what happened. I mean he was the expert, what did I know?

Over the next several years I was treated with steroid injections, steroid pills, and Methotrexate at increasingly higher levels. I was told to be patient that getting the right medication can take time. Every time I brought up Lyme disease I was shot down. He was more convinced than ever that I had RA even though I was not improving much on the Methotrexate.  He suggested that I try biologics to get some relief, and, I don’t know why, but that was it for me. I fought him on it. I didn’t want to assault my body with any harsher medication.  After several disagreements on the subject over the next couple of months, I decided it was time for me to take a break from this rheumatologist.

I wasn’t sure what to do next, so I started weaning myself off of the Methotrexate. I didn’t really know what it felt like to be off of the stuff. I didn’t want to shock my system and go completely off the drug, so each week I would take one less pill until I had weaned myself completely off the drug.

It took a while, but the symptoms returned. My legs looked like tree trunks and my wrists were pretty bad too. I knew I had to do something, but at this point, I wasn’t sure who to turn to. I tried a different rheumatologist and left his office in tears. He was good friends with the rheumatologist I had left and couldn’t understand why I was looking for a new doctor. Finally I found a rheumatologist that was supposed to be a Lyme specialist. I thought that this was the solution I had been looking for.

This new doctor requested all my medical records before I could schedule my first appointment. She wanted me there 20 minutes before my scheduled appointment so that I could fill out all the medical history forms. She went over everything with me and asked a lot of questions. She agreed with the first rheumatologist, that I had RA, and she mentioned that she had had some luck with patients on Plaquenil.

I figured that if this doctor who was supposed to be a Lyme specialist felt that I had RA, then I must have rheumatoid arthritis. And so I did what the doctor told me and took what the doctor said to and I did see some improvement after adding the Plaquenil to my medication cocktail.

I think that it is important to note that during the time I was seeing these rheumatologists, I also had a primary care physician that was aware of all of this. She also treated me for other unusual symptoms that I would have from time to time. I was told I had acid reflux and prescribed medication. I was told I had migraines, even though my symptoms were sensitivity to light and sound with no pain. The constant ringing in my ears I was told must be from anti-inflammatory medications. The extreme fatigue was blamed on RA.

The events of last summer changed everything

On the third of July our youngest son contracted the H1N1 virus. Because I was taking immunosuppressing drugs, I needed to stop taking them immediately and start taking anti-viral medication for 3 weeks to make sure that I did not contract the swine flu. Shortly after completing the Tamiflu, I came down with a bad case of bronchitis and was put on antibiotics and was told to stay off my immunosuppressing medication. I was told to continue taking the Plaquenil. I no sooner finished the antibiotics when H1N1 struck again at my house and I was back on antiviral medication. And to top it all off, again I got bit by a deer tick and tested positive for Lyme disease. The doctor put me on Doxycycline for 6 weeks because of my compromised immune system.

This bout of Lyme disease was like no other that I had ever experienced. Three weeks into treatment the symptoms got incredibly worse. I thought I was dying. When I called the doctor she didn’t seem to know why I was feeling so bad but insisted that I continue the doxycycline. I did what I was told and the symptoms did improve. When I finished the antibiotics I was told to start taking the immunosuppressing drugs again. Being the dutiful patient, I did as I was told. Within a week of starting the methotrexate, the Lyme symptoms came back with a vengeance. I scheduled an appointment with the rheumatologist.  She took one look at me and knew that I was sick. I told her I thought it was Lyme disease. She ordered a new Lyme test and a battery of other tests as well.

About a week later, my primary care physician’s office called to let me know that I had a positive Lyme test and wanted to confirm that I was being treated for Lyme disease. I was confused. Why didn’t the rheumatologist call and get me on antibiotics?

I called the rheumatologist office and asked for an explanation. The doctor told me that I did not have Lyme disease. I wanted to know why the other doctor thought that the test results were positive. And here is when I started to get really nervous. She said that she didn’t expect those results. She said that it could not be Lyme disease; it must be a cross reactive protein. I then wanted to know why I was experiencing the same symptoms that I had when she told me I had Lyme disease. It didn’t make sense. I felt like I had Lyme disease and I had a positive Western Blot. It didn’t seem complicated at all.

She wanted to do some more testing and I agreed. She said Lyme disease likes to hide out in a certain part of your brain and so she ordered an MRI. I was tested for everything under that sun and the only thing that came back positive was Lyme disease.

Because the rheumatologist was in my opinion trying to prove that I did not have Lyme, I went to my primary care physician and asked her what she thought.  She said that she thought that there was no harm in putting me back on Doxycycline and if I felt better than more than likely I had Lyme disease. If I didn’t feel any better than it probably wasn’t Lyme. That made sense to me.

I started a new course of Doxycycline and not only did the Lyme symptoms get better but the swelling in my joints that had been bothering me for the past 8 plus years disappeared. I was walking without a limp. I actually had a sashay to my step. One day I was going about my normal daily activity and it hit me. It stopped me dead in my tracks. This is what I felt like before; before the rheumatologist, before Methotrexate, before the tick bite that changed everything.

I began to cry. At this point I was sure that I had had Lyme disease all along. It made sense. I had been off the medication that was supposed to fix my joint pain and swelling and it was replaced by antibiotics that have taken away all my symptoms.

I had an appointment with the rheumatologist. She wanted more testing and if they did not come up with a solution, she wanted to do a lumbar puncture. Logic did not seem to be working with the woman. To be honest every time I brought up Lyme disease she looked scared, especially when I suggested that I never had RA in the first place.

I decided that I was no longer going to go back to the rheumatologist and I needed to find a doctor that knew something about Lyme disease. I spent months doing research about Lyme and rheumatoid arthritis. I learned that I needed a Lyme Literate MD (LLMD) and I asked anyone and everyone if they had some advice on how to find a doctor. I took all the information that I had gathered and narrow it down to 2 doctors and then I did something I should have done from the very beginning. I trusted my instincts.

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Post-script:

By the time I was able to find a Lyme literate MD, I could no longer walk without help.  I spent all my time in bed. I could not roll over in bed without help. I was in constant pain. I truly thought I would die before I made it to this doctor. Not only were my joints swollen but my legs and face were swelling as well .My body had begun to twitch. I was really scared.

Within a few months on antibiotics the inflammation in my body had been reduced by half and I knew that we were on the right track. I am now 8 months into treatment. It has not been easy and because I spent so much time on immuno-suppressant drugs it will be a long hard battle. The drugs that suppressed my immune systems made it easier for the Lyme bacteria to become entrenched in my system. However right now I am able to walk without help, the pain I was experiencing has been reduced by half and I am on my way to a healthy life once again.

The most important lesson I have learned during this whole experience is that I should always trust my instincts. I didn’t before and I will never make that mistake again.

I hope this post will help others.  As of today I have been contacted either on LivingRheum.com or LymeWarriors.com or by email by almost 70 people who have stories similar to mine. The more information out there the better.

I would like to welcome Tina Pohlman, as our newest MLWT Guest contributor.  She is the President, Co-Founder, Executive Director of the APS Foundation of America, Inc. .  She is also an APS and Lupus Patient. 

Tina is an amazing advocate for APS and is someone who is passionate about providing useful, accurate and relevant information to patients living with this syndrome.  By working through the challenges with autoimmune disorders herself, she is a definite go-to person for those of you seeking quality support and further education for managing your APS.  We frequently rely on her experience and knowledge, and are very grateful to her for joining our team.  She will be contributing APS-related articles from time to time for our MLWT community.  If you have APS questions that you would like her to address in the future, please send them to us here at MLWT.

I am handing over the blog today so that Tina can explain a little more about APS—particularly how this disorder relates to lupus.  This article is extremely technical and gets into some pretty specific medical information.  Please consult your physicians first regarding any of the information you read here and, if you have questions or are seeking more general information, Tina is available to address them, too.  You can either post your comments and questions for her here or contact her directly on their website’s Contact page . 

Please welcome Tina to our community~

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Why is APS relevant to the lupus patient?: Tina Pohlman Explains

What is Anitphospholipid Antibody Syndrome (APS)? 

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK. 

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. 

Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The two major antibodies that distinguish APS, ACL and LAC, are frequently found in lupus patients, and certain other antibodies also occur with higher-than-normal frequency in both conditions. But the presence of one or more of these antibodies doesn’t necessarily mean that you have either condition; the diagnosis for either requires specific clinical evidence, not just antibodies found in lab tests.

Laboratory Tests Used to Diagnose and Evaluate Lupus 

Lupus is characterized by abnormalities in many laboratory test results. These abnormalities are different for every patient and they vary significantly during the course of a patient’s disease. The serial evaluation of an individual’s tests along with the physician’s observations and the patient’s history determine the diagnosis of systemic lupus erythematosus (SLE), its course, and the treatment regimen. All laboratory values must be interpreted in light of the patient’s present status, other correlating laboratory test results, and coexisting illnesses.ˡ 

This article describes the major tests used to diagnose and evaluate SLE and provides information on their rationale and clinical usefulness.

Diagnostic testing relies on two concepts, sensitivity and specificity. The first term refers to whether a test is likely to miss many cases of the disease or disorder for which the patient is being tested. The second refers to whether the test is helpful in narrowing the diagnosis to the condition being tested for.²

Antinuclear Antibody (ANA)

A positive result for the presence of these antibodies, which your immune system produces, means your immune system is “stimulated”. That’s a common finding if you have SLE or another autoimmune disease. The ANA is close to 100% of patients with active SLE. However, it is also positive in 95% of patients with mixed connective tissue disease, in more than 90% of patients with systemic sclerosis, in 70% of patients with primary Sjogren’s Syndrome, in 40%-50% of patients with rheumatoid arthritis, and in 5%-10% of patients with no systemic rheumatic disease.ˡ ANA testing is thus highly sensitive but not specific.² The sensitivity and specificity of ANA determinations depend on the technique used.ˡ

Anti-Sm

Anti-Sm is an immunoglobulin specific against Sm, a ribonucleoprotein found in the cell nucleus. This test is highly specific for SLE; it is rarely found in patients with other rheumatic diseases. However, only 30% of patients with SLE have a positive anti-Sm test.ˡ  It may be unique to SLE; a finding with low sensitivity but high specificity.²

Anti-dsDNA 

Anti-dsDNA is an immunoglobulin specific against native (double stranded) DNA. This test is highly specific for SLE but not particularly sensitive and it is not found in patients with other rheumatic diseases. Anti-dsDNA is found in at least 50% of SLE patients at some time.³ For many patients with anti-dsDNA, the titer is a useful measure of disease activity. The presence of anti-dsDNA is associated with a greater risk of lupus nephritis.ˡ

Anti-Ro (SSA) and Anti-La (SSB) 

These immunoglobulins, commonly found together, are specific against RNA proteins. Anti-Ro is found in 30% of SLE patients and 70% of patients with primary Sjogren’s Syndrome. Anti-La is found in 15% of people with SLE and 60% of patients with primary Sjogren’s Syndrome. Anti-Ro is highly associated with photosensitivity both are associated with neonatal lupus.ˡ These antibodies often accompany the Anti-Sm.² 

Complement 

Complement proteins constitute a serum enzyme system that helps mediate inflammation. Complement components are triggered into an activated for by such immunologic events as interaction with complexes. Complement components are identified by numbers (C1, C2, etc.) Genetic deficiencies of C1q, C2 and C4 although rare, are commonly associated with SLE. A test to evaluate the entire complement system is called CH50. The most commonly measured complement components are the serum levels C3 and C4.ˡ  The total amount of complement in the body at any given moment is finite. Therefore, if a complement has been drawn to sites of immune complex activity, there will be lower than normal levels in general circulation. In SLE, at least in active disease, serum complement levels are low. This pattern is also helpful in monitoring treatment.²

Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) 

Tests for ESR and CRP are nonspecific tests to detect generalized inflammation. It’s specificity is very low, but it does indicate something is amiss. Levels are generally increased in patients with active SLE and decline when corticosteroids or nonsteroidal anti-inflammatory drugs are used to reduce inflammation. However, they do not directly reflect disease activity.³ 

Antiphospholipid Antibodies (APLs) 

APLs are autoantibodies that react with phospholipids. Recent data indicate that APLs recognize a number of phospholipid-binding plasma proteins (e.g., prothrombin, β2 glycoprotein 1) or protein-phospholipid complexes rather than phospholipids alone. APLs are present in 50% of people with SLE. Antiphospholipid Antibody Syndrome occurs in 50% of SLE patients who have the lupus anticoagulant. This syndrome is characterized by a persistently positive lupus anticoagulant or medium to high titer Anticardiolipin or anti- β2 glycoprotein 1 in the clinical setting of thrombosis, fetal loss, multiple first trimester losses, or preterm birth from severe placental vasculopathy.

APLs and Antiphospholipid Antibody Syndrome (APS) may also occur in patients without SLE. APLs are detected in three types of laboratory assays: 

· Lupus Anticoagulants. Lupus anticoagulants are APLs that inhibit certain coagulation tests, such as the activated partial thromboplastin time (aPTT), dilute Russell viper venom tme (dRVVT), and kaolin clotting time (KCT). Although the antibodies act as anticoagulants in these laboratory assays, they are not clinically associated with hemorrhage, but with thrombosis, pregnancy loss, and other manifestation of the Antiphospholipid Antibody Syndrome. Most lupus anticoagulant antibodies are directed against β2 glycoprotein 1 or prothrombin.

· Anticardiolipin antibodies (aCLs). Sensitive enzymes-linked immunoabsorbent assays (ELISAs) using cardiolipin as the putative antigen are commonly performed to detect aCLs. In patients with Antiphospholipid Antibody Syndrome, most antibodies detected in the Anticardiolipin ELISAs are directed against the cardiolipin-bound β2 glycoprotein 1. 

· anti- β2 glycoprotein 1. Because ELISAs do not recognized cardiolipin unless β2 glycoprotein 1 is present, anti- β2 glycoprotein 1 detection assays have been developed. These assays have revealed that anti- β2 glycoprotein 1 antibodies may be more strongly associated with Antiphospholipid Antibody Syndrome than are the anticardiolipins.ˡ 

Clinically, APS has also been associated, in significant proportions of patients, with several other disorders. They include particular neurological problems, notable seizures or migraine headaches; joint pain and inflammation; livedo reticularis, patch discoloration of the skin caused by dilation of small blood vessels; avascular necrosis of bone (even when corticosteroids, with which this condition usually associated, are not being taken); leg ulcers; hemolytic anemia; and various other troubles traceable chiefly to circulatory problems, including thromboses both major and minor. All APS-related difficulties are exacerbated by smoking and uncontrolled blood pressure, diabetes, and high cholesterol.²

Resources:

1: Lupus: A Patient Care Guide for Nurses and Other Health Professionals. 3rd Edition, National Institutes of Health, National Institute of Arthritis & Musculoskeletal & Skin Diseases. 2006 

2: Living with Lupus: The Complete Guide, written by Sheldon Paul Blau, MD & Dodi Schultz, 2nd ed., rev. and updated 2004

3: Lupus: You Can Take Charge of It, written by Victoria Scanlan Stefanakos, 2005

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Founded in 2005, The APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services.

There are many diseases out there that are often ‘labeled’ as a “man’s” or “woman’s” disease.  When that happens, those who don’t fit the mold can find themselves in a gray area where their medical providers or even those closest to them minimize what they are going through simply because they are the wrong gender.  It is difficult enough for us to accept what is going on in our bodies, so to have the added scrutiny by those we reach out to help us get through our experiences throws into the equation some very stressful emotions.  When we are ill, we need to work towards healing and not spend valuable energy into meeting everyone’s expectations.

 I am pleased to say that Matt, author of the blog Matt and Lupus , has graciously agreed to start offering contributions that come from a guy’s perspective of having lupus.  Matt shares the belief that getting through some of our health challenges may not be easy, but is absolutely necessary in order to find our true potential and pursue important personal goals. 

Welcome him here and be sure to visit him at his blog, as well.

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Back in April of 2009, I was at work and felt a pain in my leg. I thought I just pulled a muscle and that it would go away after a few hours. By the fourth day trying to ease it, the pain got too bad and I had to call off work. I returned to work for another four days and then, once again, I had to call it off.  I finally decided to go to urgent care and see what was going on. I felt that if I kept calling off from work like this, I could risk losing my job. 

The doctor took one look at my leg and said that I had a blood clot and I needed to go to the emergency room. I had an ultrasound done and they told me that I had deep vein thrombosis and gave me a lot of blood thinners. After blood tests came back, I tested positive for the lupus anticoagulant antibody, one of the Antiphospholipid antibodies that cause problems in our blood’s ability to clot normally.  Then they did further blood tests and checked for full Lupus* .  I finally received a diagnosis and have been on blood-thinning and immune-suppression medications ever since.  I went through quite a bit recently, undergoing stent surgery  to open up the veins in my leg and finally ended up getting not one but two stents.  I went through blood transfusions, rheumatologists, testing out medications and was still able to return to work approximately one month after the whole crisis began.

I’m happy to say that I’ve been able to continue working full-time, four ten-hour days and, although I have had to make some adjustments to how I get through my days, I feel like I am now in a more grounded position in taking better care of my health. 

So far not too much of my life has changed due to this illness other than taking a lot of pills every day and not eating as many salads keep the vitamin K level low in my system** . I’m sure it will get worse over time my body feels every day, but I do not wish to stop living just because it becomes difficult or frustrating.  Sometimes I joke about getting full just on my pills a day that I realized that there are many others that have it much worse than I do and I am thankful that I have some understanding of what they go through.  

I am currently planning on returning back to college at least online complete my degree. I’m looking at a degree in business management with a focus on sales. I wish to become accessible working from home with affiliate programs, so that I can avoid being forced on disability from putting too much stress on my body at work. Although I may have pains every day is a big part of me that doesn’t want to stop. It might be my ego but I do not want to feel defeated. 

There is a point where we need to stop some things for the sake of our health, but I wish to push forward and continue to educate people on chronic illnesses.   I believe there is a great deal that I, and others like me, can still do. We just have bigger hurdles to jump over along the way. 

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*Lupus anticoagulant antibodies are one of several antibodies present in everyone.  Although it is identified with lupus, it does not necessarily indicate that you actually have lupus. 

**Vitamin K has blood-thinning properties and it is highly recommended that people who are taking medications to treat clotting disorders (including aspirin, Coumadin, Warafin, etc.) diligently monitor food in their diet with high Vitamin K content (such as dark, leafy greens).  Be sure to speak openly with your medical team about your daily diet and develop a plan for your particular situation. You can also learn more about foods with high Vitamin K content here .

My goal for the latest library excursion was to pick up references to begin Fall prep on MLWT Target Practices, some new classes and to catch up on writing those over-due articles.  What I ended up leaving with was a book, found by accident, and an absolute treasure that I want to share with you today. 

Reading and writing daily about life with illness can sometimes be, well, depressing and too close to home.  Yet, I struggle with reading fiction while the deadlines, emails from clients and project collaborations taunt me from my desk.  Reality, in many forms, just crashes into any story where I’m trying to lose myself.  You would think that the last book I would choose when trying to escape would be one about illness.  Perhaps you have more sense than I, because that is exactly what I ended up doing.  I am so glad I had this lapse in ‘better’ judgment, though, as I would have really missed out.

Dr. Jaime Weisman’s book As I Live and Breathe: Notes of a Patient-Doctor  (North Point Press, 2002) caught my attention for two big reasons:

1) I related immediately to the cover photo, as someone who has also received medical treatments for a faulty immune system; and

2) It was written by a doctor who is spending a little time on my side of that tube. 

I half expected the book to be written in a way to get me to feel compassion for a physician who falls from grace.  What I discovered—no, received—was another lesson in not judging a book by its cover.  Once again, I go in for one purpose and leave with another.  I expected revelations about a doctor’s new perspective and emerged with an appreciation of the human spirit. 

The absolute beauty of this book, for me, was in her writing.  Ms. Weisman was a patient first and headed towards a career in writing.  However, her turn towards medicine was a gift to many of us and still offers a reassuring voice through her practice or her writing.  Although she touches on medical issues and some of her own struggles getting through her days as a patient, I didn’t feel burdened by grief or enlightened about how best to navigate the medical puzzle.  She leads the reader both forward and backwards in time, skillfully tying together the thoughts and experiences that make up the cycles of experiences we all go through, healthy or not as healthy.  Her essays gracefully describe the complexity of her condition as a reference point for the reader, rather than as a badge of honor.  From that reference point, I wanted to journey with her and absorb her experiences in order to find a place or a word to help describe my own.  Her memories, poignantly expressed, resonated within me as a person first and as a patient second. 

This book is grounded on the importance of relationships.  All relationships, hers ranging from the professional ones she establishes as a physician and the personal ones she cherishes as a daughter.  Even the relationship she develops, continuing over time, with her body is testimony to the old adage “becoming your own best friend.”  The relationships she takes part in as a patient herself, with other patients and her medical team, are keenly explored and serve a models in finding your own best sources of support. 

After finishing this book, I am left with a sense of comfort.  There were so many passages that caused me to stop, mid-paragraph, and really pay attention to what she was saying.  Or, sometimes, to simply to pause and release some pent-up tears.  One quote, in particular, took me back to my own memories following my diagnosis over a decade ago.  At my ten-year appointment, where kidney failure and dialysis are quite possible for 50% of us with lupus, my doctor asked me if I realized how sick I had been.  My answer, as I’ve mentioned here on this blog before, was “no”.  Ms. Weisman puts my feelings about what I did know in the early years of my illness in the best way possible and answers my doc’s question better than I did: 

“The cure for the fear of dying is living.”   (Pg. 210) 

This book, and Ms. Weisman, herself, exemplify how powerful working towards a cure can truly be—for all us.

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Note:  I received no compensation for reviewing this book. 

Here  is their invitation to you and a little information about what their afternoon plans to offer:

“The Oregon Chapter of the Scleroderma Foundation has announced that Dr. Catherine J. Markin – a noted specialist in pulmonary disease and critical care medicine at Legacy Good Samaritan Medical Center, and Director of the Legacy Pulmonary Hypertension Program – will present the 9th Annual Cheri Woo Education Seminar ’s keynote address scheduled for Saturday, March 13, 2010 at Tuality Health Education Center in Hillsboro. The free public seminar runs 10am through 2pm.

Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations intended to increase overall education and raise regional awareness of scleroderma, also known as systemic sclerosis.

In addition to Dr. Markin, the seminar is scheduled to present Dr. Anna A. Bar, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at Oregon Health & Science University.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  Justin Elson, DMD, of Gentech Dentist Hillsboro, will speak at the seminar on Scleroderma and Oral Health.

Scleroderma (pronounced sclare-a-derma), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  An estimated 300,000 people have scleroderma, of which 80,000 to 100,000 people in the US have the systemic form of the disease.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.

The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public. Breakfast and lunch are provided with every registration.

For more information, and to register online .

Hi All! 

I’m Becca Seitz, licensed acupuncturist and owner of Thrive Acupuncture in NE Portland.  You can read about what got me into acupuncture and Chinese medicine at the link Maria gave above.  But here, today, I think I’d like to talk about my philosophy for my practice (and my life!)  When I graduated from acupuncture school, I started my business under the name To The Point Acupuncture.  Get it?  Acupuncture points, getting right to the point of a health concern, not dancing around it.  Catchy, huh?  I love puns and really love businesses that have enough of a sense of humor about themselves to include them in their name.  I certainly like to be the first to laugh at (with?) myself.  This name was PERFECT for me!

But you may notice that I have a different business name now – what drove me to change it?  While “To The Point” was catchy and fun, it didn’t get across what I wanted out of my practice.  I found myself attracting patients who wanted me to “fix them.”  And while this may be how biomedicine works with its surgeries, medications and other miscellaneous therapies, this isn’t how Chinese medicine works.  I like to see Chinese medicine as a way to remind your body how to function healthfully.  I am merely the tutor or mentor for your body.

So I would go along day after day helping people fix their health problems, but as soon as their symptoms disappeared, so would they.  They would only return once their symptoms returned.  And this is completely understandable.  Our model of healthcare in our society is based on an emergency system – if something’s broken, you fix it and go on with your life.

In Chinese medicine, the model is to prevent things from breaking in the first place.  And, if something does happen to break, you fix it and make sure it never breaks again.

 I wanted to inspire in people the desire to be more than just symptom-free (pretty catchy slogan there, huh?)!  I no longer felt like my business name was getting the point I wanted to get across to my patients.  So, I changed it.  It was a little scary since my old name was just starting to get out there and known, but I felt strongly enough about my purpose, that it was a must.  

I became Thrive Acupuncture, and I must say, I love it!  I love helping people become the healthiest they can be, and you know what? I’ve got many patients now who have made the choice to continue treatment with me, even though their symptoms are gone, to make sure that they feel their best!  There are still those who just want the band-aid, and I treat them, and I love working with them, and I love seeing them feel good, but my true passion is in helping people to THRIVE!

I can’t wait to blog with you all about Chinese medicine and how it works!  If you have any specific questions about chronic disease, auto-immune disorders (or anything else!) and Chinese medicine on here, please ask away and we’ll get those answered!

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This Friday, we will be posting a follow –up Chinese Medicine post regarding the Five Elements and some discussion on a recent article about applying those elements.

“Hello,

We received an email from our National office about The Dr. Oz Show featuring men and lupus. It will be airing on Monday, Jan 18, 2010. In Seattle you can watch this show on KOMO4 TV at 3:00pm. In Portland, it is aired on ABC 2 KATU 3:00 PM and 8:00 PM on KATU-DT2 (DTV Channel 2-2) [Dr. Oz link has incorrect time]. 

Please check this link: http://www.doctoroz.com/find-station to watch show timings in your areas.”

After watching the show you have more questions or want to know about resources to learn more about living with lupus, the national LFA website does offer archived transcripts from their webchats on Men and lupus,  Men’s health and lupus and Lupus in men.  They also have community message boards where ongoing discussions and an Ask The Expert link.   Our PNW LFA Chapter will also field your calls and emails to receive further information or materials.  If you have more specific questions about living with lupus  in Oregon, contact us here and I will connect you with local resources to fit your situation.

Of course, there are many other amazing lupus organizations on the internet (for example, research and advocacy and education,community-building and diversity)  and several bloggers who also offer their suggestions and stories.  As always, recognize that nothing can take the place of your physician and we strongly recommend that you take all information you read carefully.

Researching and reading is important in helping us cope with our illnesses, but always speak with your medical professional before implementing anything you come across.  Best intentions can still do a great deal of harm.

We don’t often think about men living with an illness and it is important that we learn from their experiences, as well.  Whether you’re a fan of Dr. Oz or not, I’m just glad he’s putting the discussion out there, giving us more opportunities to begin asking the question:

What is lupus?  (Sorry for the ads, but the video is a quick and informative source to get the gist)

                                                                                                    ~Ashleigh Brilliant

I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action plan that she will follow through with.  She actually knows everything she needs to do, but, because she over thinks everything,  nothing was getting done.  That habit of thinking things to death leads her to feeling to “overwhelmed” and having me there to go through the process with her, she tells me, always energizes her to accomplish her goals.  It isn’t because I have magic powers or specialized knowledge that things get done or even the financial incentive to be paying me to join her.  What is truly happening is that she is with someone who she can talk to about her goals, her thoughts about how to get her jobs done and have someone there to make it fun.  The fact that I do organizing and small business administrative support work helps, but it is just the opportunity to team up that brings in that energy.  She usually follows up our sessions with an email telling me how her “Maria fix” is still lingering and that makes me feel great to know I’ve helped. 

While working with her on taking a look at what she already does do and knows, I gained some insight myself on how I should also be resisting the urge to think too much and simply work with I already do and know about my health.  In the beginning of our adjustments to all the new health-related symptoms (even when we’ve lived with illness for awhile), we have a sense of urgency in learning as much as we can about particular symptoms and how they will affect our lives.  Sometimes that urgency can get carried away and we tend to forget that our gut instincts have done an amazing job already in evaluating the ‘data’, yet we get too distracted to listen to what our intuition is telling us.

Without exact medical science and much public awareness, lupus is a pretty solitary journey.  We share our lives with others, but only we personally understand what lupus is about.  Even among a group of people with lupus, you will find a wide diversity in diagnosis, support network, symptoms, economic status, education, emotions, behaviors, goals and so forth.  The importance of having trust for our own judgments can sometimes be dismissed by family, friends, doctors and ourselves.  I know I seek out more and more information when trolling the blogs, bulletin boards, websites and social networking sites, convinced that I’ve missed something.  Eventually, I realize that I am missing something… my own instincts about what works for me and trusting what I already know.

I believe that I have learned the most from individuals who are just beginning their life with illness, mainly because I suspect that their use of intuition is most acute.  Since we haven’t accumulated the reams of paper on every topic yet, our need to understand what is happening still includes a sense of openness to learning about ourselves.  Every situation is different and talking with others who are jumping on board the “L” train offers me many options to do things better, easier, quicker and with more self-forgiveness —despite how I had already learned those lessons many times over.  So, why do I keep listening to the same old recommendations and encouragements if I already know I need to do them?  What makes me think that visiting a chronic guru, who tells me the same thing I read from a book, will change the fact that I’m not doing it?  Why does this client achieve so much from me helping her do what she really could do for herself?

If you look more closely, you will see that the many bloggers and writers out there are not cured nor have they achieved enlightenment nor sainthood from their struggles.  Indeed, they are doing just what we all are doing—the best they can, each and every day.  Yet, with all the name recognition and glitter, it is easy to assume that they are different than we are, better off than we are, stronger than we are, and so on.  We flock to them for information that we obviously are missing, otherwise we would be doing and feeling better about our illnesses, right?  What they offer really isn’t wisdom about living with illness, just as what I offer my clients isn’t rocket science.  What is really being offered is simply ‘opportunity’.

When we take in too much information or create too many options, we lose our way because our brains are wired to only be able to process a certain amount of information at a time.  That is why we are hearing how multi-tasking is actually less effective in getting jobs done well.  Sometimes, we need a ‘tour guide’ to get us around our own thoughts and that is all I do for clients. 

The opportunity to share in a dialogue of what is most pressing in our lives, like living with illness, is out there and it benefits us to occasionally invest in participating so that we can apply all that information we’re spending hours accumulating.  Maybe investing on one topic or one experience is all you need and that may just open the dam for more energy and inspiration.  You may share a similar thought through a “tweet” on Twitter or some mutual friends on Facebook.  One day you may be doing well with lupus and the next day you find yourself needing to vent to someone who ‘knows’.  The value in connecting with others, reading what others write and listening to others’ life experiences isn’t just to dwell on illness— it is to celebrate the rest of those parts that we are made of—one step or one day at a time.

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This is part one of a two part introduction to our current book discussion.  This month we are talking about Despite Lupus: How To Live Well With Lupus with the author Sara Gorman.  We encourage you to pick up the book , visit her website, learn more about her in our May post or read our review of her book. 

Part Two will be posted tomorrow that will have Sara’s introduction for the discussion group already available on the Shelfari.com book group under “MLWT Book Discussion Group”.

Here we go!

Monday, September 14^th is the beginning of National Invisible Chronic Illness Awareness Week 2009  and there will a lot of great people out there offering a great deal of information, resources, insight and stories addressing life living with an illness that isn’t easily seen by those around us.  Heck, sometimes we don’t see it either and that will be included somewhere I’m sure. (Maybe even here!)

This year, I’m going to be visiting as many of these amazing people as I can and will post some thoughts that stem from what I’m reading – which is what this week is all about.  To tell our stories, but to listen, too…and that sometimes offers more help to each other than we realize. 

For a complete line up of what this week has in store, including a virtual conference  hosting some great speakers (including a few MLWT colleagues) via Blog Talk Radio.  Since all of the shows are recorded and archived, you can catch the presentations when the time is right for you. 

Don’t miss the amazing week ahead – we guarantee there is going to be something for everyone through this wonderful event.  Lisa Copen and everyone else involved with the ongoing coordination of this incredible resource deserves a huge round of applause.  You’ll soon see why.

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* MLWT note:  As you may have noticed, there have been some changes occur here on the blog, including the archives link- which isn’t working right now.  We have some behind the scenes work going on and, unfortunately, it will be during this important event.  We will try to minimize any interference so that you don’t miss out on any new information we pick up during the week, in case you miss it.      Thanks for your patience!