March Autoimmune Disease Awareness Part IV...Celiac Disease and Vestibular Dysfunction

Gluten is a protein found in
Wheat, Barley and Rye

Several years ago,  Celiac Disease entered the life of my family. I had heard of it, but I really didn't know that much about it. All I knew was that it caused gastrointestinal problems, and was diagnosed with blood work and a biopsy of the small intestine. After doing a little research, I discovered that Celiac Disease is a genetic, autoimmune disorder that affects approximately 1% of the population. When people with Celiac Disease ingest gluten (a protein found in wheat, rye, and barley), their bodies react adversely, which leads to damage of the small intestine. There is no cure for Celiac Disease, and the only treatment is a life-long, strict adherence to a gluten-free diet. As a family, we learned to read labels and cook new recipes that were gluten-free because we felt the best thing we could do was to educate ourselves and do our best to be supportive when we got together for family meals. But in my own household, my husband and I continued to enjoy delicious breads, fried chicken, gravy, pasta and casseroles, and that practice remained unchecked because, after all, we weren't affected by Celiac Disease...or so, we thought.

In 2010, after two years of almost constant upper abdominal pain, and an increase in intensity of the nausea that had come and gone throughout most of my life, my doctor finally referred me to a gastroenterologist. He recommended testing, which included an ultrasound, upper endoscopy with biopsies, and a Hidascan to check gallblader function; I was diagnosed with "inflammatory malabsorption" with patchy damage to my small intestine, and chronic inflammatory gallbladder disease without stones. In October, I underwent surgery to remove my gallbladder, which gave me some relief from the unrelenting upper right quadrant abdominal pain, but for the most part, the nausea remained. Within a few months, debilitating fatigue, severe joint pain, and rapid weight loss signaled a real problem with my health. To be honest, I was so relieved that I no longer had a constant stabbing pain in my gut, I failed to link my malabsorption diagnosis with what was happening now. After all, the gastroenterologist and the surgeon had both released me from their care, so how could any of what I was currently experiencing be related? Besides...having Lupus always kept me guessing as to whether or not my symptoms were a result of that disease flaring up, or if they heralded the appearance of a new disorder that was entirely unrelated. Seeking help from area doctors yielded no answers, while my nights were filled with agonizing pain and my weight plummeted to a mere 89 lbs. Not understanding that inflammatory malabsorption is often caused by Celiac Disease, I did not remove gluten from my diet, so I continued on a downward spiral health-wise, and I needed help.

My sister and my niece became involved in a gluten intolerance group to learn more about Celiac and its effect on a person's overall health. The more they learned, the more they suspected that more than just one in our family was suffering from Celiac Disease and/or gluten intolerance...I, along with multiple other family members, shared some of the same symptoms! They learned that Celiac Disease is hereditary and that people with a first-degree relative with the condition (parent, child, sibling) have a 1 in 10 risk of developing it too. In addition, the link between gluten intolerance and autoimmune diseases was simply too compelling to ignore. My niece contacted me and told me of a clinic she'd heard about in California that might be able to help me, so in July of 2011, my husband and I traveled to California for a full medical assessment. After extensive testing, it was finally determined that I am, at the very least, allergic to gluten; because I have the "Celiac Gene" (HLA-DQ8) along with a positive biopsy for inflammatory malabsorption, I, for all intents and purposes, suffer from Celiac Disease. Gluten is, therefore, poison to me.

I have noticed over the past few years that many people have decided to eliminate gluten from their diets, and some, especially those with autoimmune disease, are seeing benefit. Upon leaving the clinic in California, I immediately removed gluten from my diet, along with any refined or processed foods and foods that contain preservatives.  In addition to these dietary changes, I no longer drink any kind of soda, and avoid artificial sweeteners. Though it took a while to see improvement (and I still struggle greatly from the combination of diseases that I have), I know that my decision to make changes in what I ingest has been beneficial to my health. Changing my way of thinking about food was hard at first, but in due time, I learned how to bake delicious gluten-free biscuits, bread and crackers, and I can still enjoy my favorite rice-broccoli-cheese casserole because I learned how to make my own gluten-free cream of mushroom and cream of celery soups. Going out to eat is a luxury that we take on rare occasions, if we are sure the restaurant has gluten-free options available, but when considering the risk of cross-contamination, we would rather stay home than suffer the illness that ingesting gluten brings on.

Celiac Disease is a serious condition, which, if left untreated, can lead to additional serious health problems, including the development of other autoimmune disorders like Type I Diabetes, Multiple Sclerosis (MS), Dermatitis Herpetiformis (an itchy, blistering skin rash), Anemia, Osteoporosis, infertility and miscarriage, neurological conditions like Epilepsy and Migraines, short stature, and intestinal cancers. If you see yourself in anything I have written here today, please visit the Celiac Disease Foundation Website, complete the symptoms checklist, and, if you think you might have Celiac Disease, please make an appointment with your doctor.

As the final focus on autoimmune disease this month, I would like to briefly touch on one more disease that has affected my life in a profound way. In 2013, I began to have some unsettling symptoms that kept me in bed most of the time. I had been through a tremendous rough patch, having been diagnosed with Common Variable Immune Deficiency, Myasthenia Gravis, and suffering from a ruptured tendon in my shoulder that took two surgical procedures to repair. With autoimmune disease, any illness, trauma, or stress causes that disease to flare. Because I have more than one, I was bombarded with so many symptoms that it was difficult to determine which disease was flaring...or perhaps it was all of them! Little did I know at the time that a totally new autoimmune disease, Vestibular Dysfunction, was making its presentation. With no clue as to the root of my problem, I struggled daily for several months with imbalance, incoordination and severe vertigo. I was falling into walls, falling down, unable to get around without the world spinning or the floor seeming to drop out from under my feet. Having ruled out tumors or other neurological issues via MRI, my neurologist referred me to an Ear, Nose and Throat specialist, who ran special tests to determine the problem. The final determination: Vestibular Nerve Dysfunction, with permanent damage to the vestibular nerve caused by autoimmune processes. While the damage to the nerve can not be repaired, the brain can be retrained to compensate, and balance issues improve with vestibular rehabilitation, so I began therapy right away. I still have trouble with balance, dizziness and incoordination, especially in wide open spaces and dark rooms, but I have suffered no hearing loss and for that I am grateful.

I once wondered why my life has been impacted by so much pain, and illness. But I don't question that anymore because through it all, I have grown, and am a better person. I have learned to depend on my Anchor of Hope, my Jehovah Rapha, the God who heals. Oh, it may not be right now, or even tomorrow that the healing comes. But I know this...when the day arrives that I stand before Him, I will be whole and perfect, and it will not have mattered what has been before. My heart's desire is to hear Him say, "Well done, my good and faithful servant!" So today I ask, not "Why me?", but "Why not me?" and "What can I learn, and how can I use that knowledge to help someone else?" The Bible says, "Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction." (Isaiah 48:10), and I am thankful that He is refining me, little by little, to be the vessel of HOPE I know He has chosen me to be. So in wrapping up my series on autoimmune disease for March Autoimmune Disease Awareness Month, I want to thank each of you for stopping by. Perhaps you have been searching for answers to your health problems and have seen yourself in one or more of my stories. My prayer today is that something I have posted here is helpful to you.

God bless you...

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~Khalil Gibran~

March Autoimmune Disease Awareness Part III...Dupuytren's Disease and Hashimoto's Thyroiditis

I love to write. In fact, my entries in this blog are always cathartic for me, and hopefully, shed some light into the world of chronic illness for those of you who visit...some looking for answers, others reaching out in support and encouragement. But this week has been difficult, so I have had a little trouble putting my thoughts together for this segment of my Autoimmune Disease Awareness Month series. I suffered a deep chest wall contusion, bruising both muscles and ribs, simply by reaching over the back of a sofa to retrieve a doll for my grandbaby. I spent most of Sunday afternoon in the emergency room, in so much pain I could scarcely breathe. After an EKG, chest x-ray and CT scan ruled out heart issues, broken/dislocated ribs and blood clots, I was given IV pain medications and sent home with instructions to rest and perform deep breathing exercises to help avoid pneumonia. I am still in a great deal of pain, something that will take time to get over...about 6 weeks or so, in fact, according to the doctor. This whole experience has been a reminder that I am, indeed, fragile...and, well...breakable. Having the multiple conditions that I have makes even the smallest situation...a twist here, a turn there, reaching too far, pressing too hard...hazardous to my health. Yes, I admit it. I am breakable. But praise God, I am NOT broken!

I promised that throughout the month of March (which is Autoimmune Disease Awareness Month), I would touch on each of the autoimmune diseases I have, and today I will focus on two of them. Dupuytren's Disease, or Dupuytren's Contracture, is a genetic condition that runs in families (though it sometimes skips generations), mostly of Northern European ancestry. This disease affects the connective tissue that lies beneath the skin in the palm of the hand, causing nodules, cords, tightening and contractures of this tissue in the hand. Because of the contractures, the fingers can become permanently bent down toward the palm, and the function of the hand is impaired, sometimes severely. It was only after I developed it that I discovered that this painful condition indeed runs in my family. Until then, I had never even heard of it, despite the fact that Dupuytren's disease is the most common crippling hand condition, affecting at least ten million Americans, making their fingers permanently bent. There is no prevention and no cure. In fact, to date, the only available treatments are by surgeons, so most research has been on procedures, not the core biology. Surgeons perform procedures for contractures, but improvement is often partial, temporary for most, and complications are common. Despite recent progress in reducing complications of treatment, rates of progression and recurrence have not improved in the last fifty years.


Many scientists suspect that Dupuytren's is a result of autoimmune processes, but more studies are necessary to determine the exact cause. According to the Dupuytren Foundation, "Understanding Dupuytren biology may lead to better treatment for other serious medical conditions. Dupuytren biology overlaps that of other fibrotic conditions, including cardiovascular disease, cirrhosis of the liver, pulmonary fibrosis, scleroderma and others. It’s no coincidence that all of these conditions also lack effective medicines – they share parallel biologic pathways. Of all these, Dupuytren disease is the most accessible to study." "For reasons not yet known, people with Dupuytren's Contracture have a greater risk for cardiovascular disease, several types of cancer, and early death." Thankfully, there is valuable research underway to understand and better treat this disease.

Much of the information available indicates that Dupuytren's Disease is generally slow to progress and is not usually painful. Unfortunately, that is not the case for everyone. A history of this condition within your family is an indication that it will be more aggressive. When the disease is in both hands or there is associated foot involvement, the progression tends to be more rapid. I have Dupuytren's in both hands, and the disease progression in my right hand was not only aggressive, but very painful. From the first nodule to development of cords, involvement in my entire palm and all 5 fingers, and, ultimately, contracture, was less than a year. I had to do something.

My hand the day after surgery and today.
Definitely, no regrets

Given the intricate nature of the hand itself, with its multiple nerves and tendons, having surgery to remove the diseased tissue and release the contractures was a decision that could not be taken lightly. But living without the full use of one or both hands is not really an option; so I decided to have the surgery, and in August of 2014, I underwent a full palmar fasciectomy in my right hand. Of course, no procedure is without risk, and I suffered nerve damage as a result of the surgery. While it has been a struggle to deal with this complication, I have no regrets for my decision to move forward with the operation. In spite of the nerve damage that has caused pain, numbness and inability to fully grip things, I am able to use my hand, open it almost completely, type, and perhaps even one day (when my piano is fully restored) will be able to play the piano again. We shall see. I do recognize that the surgery I had is not a cure and that the disease will return. But I am excited that there is currently a research program in progress, and I am hoping that through research, we will one day find a cure for this disease.

Swollen thyroid gland due to
Autoimmune inflammation

Hashimoto's Thyroiditis is an autoimmune disease that causes inflammation in the thyroid, and gradual destruction of the thyroid tissue by the immune system. It is a progressive disease, and, as is the case with most autoimmune diseases, has different degrees of severity. I have been plagued for years with Hashimoto's, with bouts of hypothyroidism and its unrelenting fatigue, fluid retention, swelling in the neck, brittle nails, dry and thinning hair, body aches, joint stiffness and pain, and intolerance to cold. Thyroid replacement therapy would help with symptoms, then I would suddenly swing into a state of normal or even hyperthyroidism, with weight loss, diarrhea, insomnia, etc., and would have to go off my thyroid replacement therapy. Without warning, I would fall back into a hypothyroid state, which I have finally settled into, with its debilitating symptoms and almost complete destruction of my thyroid gland by the autoimmune process. I am currently on thyroid replacement therapy, and that helps alleviate the symptoms. Unfortunately, treating symptoms does not address the root of the problem...the autoimmune process.

According to The Hashimoto's Awareness Organization, there are 3 stages of Hashimoto's Thyroiditis: Silent Autoimmunity (the stage in which body has lost tolerance to its own tissue, but there are no symptoms yet and it doesn’t really affect the way that the system functions), Autoimmune Reactivity (in this stage, the destruction of the target tissue has begun. There are elevated antibodies and some symptoms. However, the destruction is not significant enough to actually be labeled autoimmune disease because 70 to 90% of the target tissue has not yet been destroyed), and Autoimmune Disease (this is the stage where Western medicine finally acknowledges that this is an autoimmune disease. And it takes this long because you need significant destruction of tissue in order to see the destruction with an MRI or ultrasound. Other findings include elevated antibodies, serious and significant symptoms, lab results, and special studies that all confirm a loss of function).

Click here to see a check list of Hashimoto's Thyroiditis symptoms. If you are struggling with anything on this list, I encourage you to make an appointment with your doctor. You do not have to suffer needlessly! For the time being, help alleviating symptoms is available, and research is underway. That is why awareness is so important. Because with awareness comes research funding, and with research we have hope for a cure!

God bless you...


"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow." ~Orison Marden~

Let's Start at the Very Beginning...Systemic Lupus Erythematosus

March is Autoimmune Disease Awareness Month, and as I promised in my last entry, I am going to devote some time to help you understand the autoimmune diseases that I have...some of which you may not have ever heard of. I struggled with where to begin--should I talk about my experiences with each of the diseases I have in alphabetical order? There are so many of them! And, after all, I am sort of meticulous about things like that--just about everything in my life, from my video and DVD collection to the items in my pantry, are all arranged in alphabetical order--just ask my children! In fact, my oldest daughter used to go into the pantry and rearrange my cans...she thought it was great fun to watch me arrange them all back! I sort of have a one-track mind about things like that. So...I've decided to step a little bit outside my comfort zone, and I am not going to do this in alphabetical order. I have decided, instead, to start at the beginning...

It was early 1978, and I was a young mother, with a baby just a few months old. She had begun vomiting profusely when she was two weeks old, and we had been through an arduous and stressful six months trying to get a diagnosis and, eventually, surgery to correct the congenital defect in her stomach. In the midst of all of this, I was having problems of my own. The muscles and ligaments necessary to carry my baby during pregnancy were too weak, and I had torn my ligaments, which caused severe uterine prolapse. As soon as she was strong enough following her surgery, I had major surgery to repair the damage that being pregnant had done to me, and was looking forward to finally having better days.

It took quite a while for me to recover from the stress of childbirth, the trauma of watching helplessly as my sick baby underwent surgery that kept her in the hospital for seven weeks, and then having major surgery myself. In fact, I never really recovered...not physically, anyway. I noticed that I was losing weight, my joints were suddenly stiff, painful and swollen, I was plagued with severe headaches, and I was constantly exhausted...not tired in a healthy way, either...utterly and completely exhausted. I was seeing a doctor, but he thought that if I would eat better and take more vitamins, I would eventually improve. When I finally could no longer stand the pain and began to lose some of my hair, my doctor sent me to a specialist in Houston, who interviewed me and determined that I was simply depressed. To his credit, he must have suspected an autoimmune disease because he ordered an Antinuclear Antibody Panel (click here to see what tests are run to determine autoimmune diseases); however, his attitude toward me was that of a busy, disinterested doctor, who didn't have time to waste on a young mother who was overwhelmed and, more than likely, suffered from postpartum depression. The problem with that line of thinking was that I was not depressed. I was quite content with my life, and had no sadness or sense of worthlessness whatsoever. I was sick, exhausted, in pain, and by then, running fever on a daily basis.

I returned to my local doctor to discuss the lab results, and he said that the Antinuclear Antibody test (ANA) was positive, and when coupled with all my other symptoms, suggested that I probably had an autoimmune disease such as Systemic Lupus Erythematosus. "Aha!", I said. "I told you I was sick! Now...what in the world is whatever the word is that you just said?" He told me that he didn't know much about it, but would do some research and get back to me. Hesitant to actually label me with a specific diagnosis just yet, he told me to throw away the unnecessary antidepressant medication the other doctor prescribed, and to keep a log of my temperature 3 times each day...morning, afternoon, and evening. It was a practice that I would adhere to for 18 long months, running a fever of 100-101 degrees every single day, as we searched for solutions to what was going so terribly wrong in my body.

I was eventually referred to a Rheumatologist, who ran a gamut of tests, and finally, it was clear that I indeed had Systemic Lupus Erythematosus (SLE). My ANA was a whopping 1:2,560 (normal is <1:40), and I fulfilled 7 out of 11 diagnostic criteria, including joint involvement, a malar rash (a butterfly shaped rash that covers the nose and cheeks), photosensitivity, oral and nasal ulcers, serositis (pleurisy and/or pericarditis,), leukopenia ( very low white blood cell count), and a positive ANA with a high titre. Fulfillment of 4 of the 11 criteria strongly points to a diagnosis of Lupus.


So what is Lupus anyway? As the name implies, SLE is a systemic disease, and can attack any organ, including skin, joints, and internal organs at any time. There are a couple of other types of Lupus...one involves only the skin (Discoid Lupus), and the other is drug-induced and disappears once the offending drug is discontinued. Since I have Systemic Lupus, that is the focus of this entry. Research estimates that at least 1.5 million Americans have Lupus, so it is not a rare disease, but it is misunderstood. Because it mimics so many other conditions, it often takes a long time to diagnose...sometimes even years. It is important to remember that Lupus is not contagious, and can range from being mild to life-threatening.

In Lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses and bacteria and produces antibodies that protect the body from these "foreign invaders" in order to keep the body healthy. In autoimmune diseases, instead of forming antibodies against illness only, the immune system mistakenly identifies the body's own cells as the enemy, and attacks and destroys healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body. Lupus is a disease that waxes and wanes...sometimes, when in a flare, you are quite ill; other times, symptoms recede and life is a little less painful. Some people have been known to go into remission, but to date, there is no cure.  There are, however, treatments that help alleviate symptoms (such as anti-inflammatory drugs) and drugs that suppress the immune system and slow down the auto-antibody production process. These drugs include antimalarials, corticosteroids and chemotherapy, and, most recently, monoclonal antibodies (Benlysta) and IVIG (IV Immunoglobulin therapy). Each of these treatments has side effects, some of which are very difficult. Because every Lupus patient is different, treatment must be tailored to meet the needs of the patient. For example, because I have a primary immune deficiency, immunosuppressive treatment is not an option for me; because I have Myasthenia Gravis, I cannot take antimalarials. I am thankful that I do receive treatment in the form of IVIG and am grateful to the many thousands of plasma donors who make that possible.

Through the years, I have suffered greatly from this disease. Lupus has attacked and damaged my joints, my skin, my heart, lungs, muscles, central nervous system, and peripheral nervous system. I have been hospitalized more times than I can count, and have endured multiple surgical procedures. Other than one short stretch of time when I was in complete remission (a result of answered prayer and a miraculous work of God in my life), I do not think I have had a single day when I was free of pain. That being said, I must make it clear...I may have Lupus, but Lupus doesn't define me! There are so many things that make me who I am...my undying faith and love for my Lord and Savior, Jesus Christ; my husband, my family, my friends, music, dancing, my online ministry and support to those afflicted with autoimmune disease...all bring me joy and are so much more important than the pain and inconvenience of having multiple diseases. I pray that God continues to fill my heart with HOPE and that my life, in some small way, makes a difference. I had a sweet visit with my brother the other day, and he reminded me that the Bible says that I have purpose; in fact, God created me with that purpose in mind; I am His masterpiece! I guess that is why, though my body has waged a raging battle against me, I have fought back like a fierce warrior and thus far, through the power and strength God has given me, I have lived to tell about it!  There is a message somewhere within me that He wants me to tell, and I am willing to be the vessel...broken and spilled out, though I am...to share it.

If you think you may be suffering from an autoimmune disease such as Lupus, and would like more information, please visit www.lupus.org.

God bless...

"Before I formed you in the womb, I knew you, and before you were born, I consecrated you..." ~Jeremiah 1:5a~  

Rare Disease Day 2016...My Story

Monday, February 29, 2016 was Rare Disease Day, and in order to promote awareness, I made a video about my walk with three rare diseases: Common Variable Immunodeficiency, Myasthenia Gravis, and Ehlers-Danlos, Type IV (Vascular). At last check, my video has had over 2,225 views. I had no idea that so many would take the time to watch, but I am incredibly grateful that they did....not because I want to be in the limelight or for people to feel sorry for me. I made the video because there are 7,000 rare or orphan diseases, and most, if not all, have no cure. People are suffering, seeing doctor after doctor, with little help of improvement on the horizon. Some of these diseases are so obscure and/or complicated that doctors throw up their hands and send their patients to someone else because they don't know what to do for them. Diagnoses...and, more importantly, treatment...are delayed, and it is the patient who suffers the most. I know that this has happened to me, and if it has happened to one, I feel certain it has happened to a multitude of others. Because pinning down a diagnosis can take months...even years...many of us feel that we are crazy, and are often treated as such, while being labeled as simply desiring attention or, even worse, drug seekers, hypochondriacs or depressed.

March is autoimmune awareness month. I realize I am a little late getting started, but I am on a campaign to educate and promote awareness for the autoimmune diseases I have, so over the next couple of weeks, I'd like to take one of my autoimmune conditions and explain a little bit about it and how it has impacted my life. But today I'd like to share my Rare Disease Day 2016 video with you. (Click here to watch video). I apologize for obvious brain lapses and "ummms", but it's been a long time since I did anything like this. And hey...it's all about transparency and openness, right? I am what I am. And the fact remains that many of the diseases I have cause what many call "brain fog", an inability to complete a thought or an overall sense of...well...FOG. The kind of fog that permeates, reaching its tendrils into our brains, muddling our thoughts and making concentration difficult.

I will be updating this blog often over the next few weeks, as we have a lot of ground to cover! I will be bringing information about Celiac Disease, Dupuytren's Disease, Hashimoto's Thyroiditis, Myasthenia Gravis, Systemic Lupus, and Vestibular Neuritis...all autoimmune diseases that I have. Now I don't know why I have been afflicted with all these things, and I am not sure what God has planned as we follow this path together, but I can assure you it will be good. And I hope you will come back and walk with me as we learn more about autoimmune disease!

God bless you...

"'For I know the plans that I have for you', declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope'." ~Jeremiah 29:11~

Joy, Like Hope, is a CHOICE

"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD. I will be joyful in God my Savior." ~(Habakkuk 3:17-18)~

Like many of you, I am sure, I have utilized the Timehop app to remind me of pictures I have taken, posts I have made on Facebook, and memories I might not think of on any given day unless I'm prompted to do so. I like Timehop. It's important to look forward, but sometimes it is very good to look back to see where we've been, too. Four years ago today, this was my verse of the day. I remember (because Timehop reminded me) that I actually said "Sometimes life throws disappointments our way, one...right...after...the...other. BUT...", followed by the verse above.

I'm so glad that life is full of  "BUT"s aren't you? Because when you think about it, it would be really easy to get bogged down in all of the things that we deem disappointing...you know, the stressors in our lives that threaten to steal our joy (like loss of a job, death of a family member or friend, and diseases that are so unpredictable that they hit us out of nowhere, stripping us of the very strength, health and dignity that make life bearable). BUT...we can choose to be joyful regardless of our circumstances, and we can learn from our experiences and choose to let them make us better and stronger, and more compassionate, happy, and hopeful people.

So I've been thinking about this idea of looking back all morning, and honestly, I have to say that it is not a bad thing to step back a bit and regroup. We don't always have to keep pushing forward. In fact, I believe that doing so can be detrimental to our health. It seems we are always pushing, pushing, pushing through...whether we feel like it or not...sometimes to the point of collapse. I remember one time when I spent an entire month in a rehab hospital due to a severe Lupus flare resulting in Lupus Myositis. I had been pretty much bedridden for about a year, and literally had to relearn to walk all over again. Once I got on my feet, one of the exercises my therapist had me do was to hold a beach ball and walk backwards. Sounds easy, right? Well, it isn't. Not easy at all, in fact. At first, I found it to be an almost impossible task. I became dizzy, nauseated and disoriented, my muscles confused about how to go about doing what I was asking of them. I broke out in a cold sweat. I didn't want to walk backwards! Why should I? Why not just keep going forward, where I could see where I was going? But the therapist explained to me that unless I retrained my muscles to know what to do automatically (including stepping back), I wouldn't be where I needed to be in order to live as normal a life as possible. And the ball? Well, eventually it would help with balance, she told me. Ah...we take so many things for granted, don't we? So I worked hard, and persevered through the cold sweats, the nausea and the dizziness, and eventually I had no problems walking backward. As part of my therapy, I even started taking dance lessons and little by little, I got stronger. For several years I was able to dance to my heart's content. I learned a life lesson through all of that: sometimes you just have to step back. Take stock of where you are, what is important to you, and where to go from here. And the beach ball played a huge part in that learning experience...another life lesson about the importance of living a balanced life.

Of course, even when we seem to be doing everything right...following doctor's recommendations, getting rest, avoiding crowds during flu season, etc...things don't always go our way. Diseases like Lupus, Myasthenia Gravis, Common Variable Immune Deficiency, Hashimoto's Thyroiditis, Diabetes, Ehlers-Danlos, Celiac Disease, Asthma and many others have no timeline of convenience, and flare when you least expect it. As you can see by the picture here, I went from having a pretty good day (upper left) to presentation of my Lupus rash (lower right) and the joint pain and generalized malaise that goes with that, increased weakness (lower left) and severe generalized weakness as evidenced in my face (upper right), so weak I looked like I had a stroke on the right side of my face, couldn't open my eye or lift my head from the pillow...all within a few days time. I am feeling better now, but the truth is, even if you are in remission today, there is no promise of that tomorrow. So we take each day as it comes and make the very best of it, knowing that we can take whatever tomorrow brings because we are fierce fighters...WARRIORS...with inner strength, honed by adversity, refined by fire.

Above all, don't let disappointments get you down. They are an inevitable part of life and the character building process. Choosing to be joyful in spite of disappointment is not always easy, but there is always a reward, and it comes in the form of peace. Hope is a choice. Joy is a choice. And no matter what comes my way, today I choose both.

MG Management 101

Because I have family and friends who look to this site for the latest information, I'd like to give you a brief update about what is going on with me and the management of my disease(s). As many of you know, I have been having severe neurological reactions to my IVIG treatments, so the neurologist ordered a change in brands, added some medications, and divided my treatments into weekly infusions of 25 grams of IVIG per week (vs 50 grams every two weeks) with hope of minimizing adverse reactions and stabilizing my condition so that I don't have such disparity between good days and bad. We were hoping that this change in protocol would give me more and more good days, and that my weakest times and bouts of infection would become more a thing of the past than has been the case for the last couple of years. So far, however, in the last few weeks, I have had more treatment sessions with serious adverse reactions than I have had without them. And when I use the word "adverse", I mean much more than the usual aches and pains, fatigue, nausea and headache that often accompany IVIG treatments. To tell the truth, I can deal with those side effects pretty readily and without too much alarm, and most of those types of reactions go away with time and rest. I am actually talking about some pretty scary stuff...reactions that make me dread infusion day, even though I know the IVIG is my best--my only--treatment option. Yesterday was one of those days when things went haywire, and I found myself  wondering if, in fact, I am going to be able to continue treatment at all. The good news is that I have an excellent nurse, who took very good care of me, and I made it through a very, very difficult day. We are going to continue to try, and I'm praying that eventually we will figure out why I am having such a tough time. Hopefully, as we find answers to my dilemma, it will help others who are facing the same issues. Please keep me in your prayers as you walk with me through this journey...it helps to know that people are loving me and supporting me through the toughest of days.

I had lunch with a dear friend of mine following a doctor's appointment recently, and the subject of my health came up. Ever concerned and always striving to learn, my precious friend listened intently as I shared my sadness over the loss of several members of my Myasthenia Gravis online support group family, losses that are a direct result of ignorance on the part of medical staff, caregivers/loved ones, and even the patients themselves. Lack of awareness and knowledge of the unpredictability of Myasthenia Gravis and what to do in the event of a crisis is, unfortunately, very pervasive, and can be deadly! I realize that there are many within my MG support group family that visit this blog, so there are a few things I'd like to address that I believe (and have been encouraged to share with you) are vital to our survival. Please feel free to share this article with your friends, acquaintances, family, and loved ones. It just might save your life!

First of all, "pushing through" even when severe weakness is hovering perilously close to the danger zone is never wise, yet we all seem to try to do just that. I'm not sure if it is out of guilt that we aren't who we used to be and are trying to "prove" ourselves, or if it is that we are hiding behind a facade of strength when we know we are literally crumbling inside but don't want anyone else to know how truly weak we are. Whatever the reason, we simply must learn to know our bodies...to recognize when to rest, what the danger signals are, when to go to the hospital...and then to do whatever it takes to survive! There have been a couple of people I know of who have died in their sleep. They knew they needed rest (and went to bed to get it), but they didn't recognize the gravity of their situations; the muscles that support the lungs failed them, and they simply stopped breathing.

Do you know what the warning signs are that something is very wrong and crisis is just around the corner? Does your family know what to look for, and are they aware that things can change in a matter of moments? Are you educating yourself and becoming your own best advocate as you work to manage your disease? Do you have a wallet card that will help a first responder know what to do to save your life? If you answered "No" to any of these questions, it is time to take control of managing your MG.

I have a MedicAlert bracelet that I wear at all times that has my conditions listed and a number that a first responder can call to get more detailed information about my diseases, allergies, etc. But I also have a wallet card that has two important things on it. On one side, it says:

"I have Myasthenia Gravis (MG), a disease that can make me so weak that I may have difficulty standing or speaking clearly. In addition, I may have drooping eyelids, double vision, and even difficulty breathing or swallowing. Sometimes these symptoms are mistaken for intoxication. However, if my breathing and swallowing difficulty is severe, I may be having an "MG Crisis" that warrants emergency treatment. If I appear to need help, please contact my physician, the local EMS, or hospital immediately"

And of course, the name and number of my physician and my emergency contact  is clearly listed on the card. On the other side, it has a message for first responders:

FIRST RESPONDER MANAGEMENT

Severe Respiratory Difficulty (Complaints such as shortness of breath at rest, difficulty speaking except in short sentences, anxiety, restlessness, air hunger, fatigue, and inability to lie flat):

• Maintain open airway
• Suction pooled oral secretions
• Support respirations if needed with an ambu bag or noninvasive ventilation if available. (Breathing difficulty in MG is related to diaphragmatic weakness. Oxygen is NOT helpful and may be harmful.)

Severe Swallowing Difficulty (Complaints such as choking, gagging, nasal regurgitation, inability to swallow food or medications, anxiety and restlessness):

• If actively choking, open mouth and remove any visible food particles
• Perform Heimlich maneuver if foreign body (including food) airway obstruction is suspected
• Maintain open airway
• Suction pooled oral secretions
• Keep a calm and peaceful atmosphere
• Sit patient upright if alert

I also carry a card with a list of drugs to avoid/use with caution, should I end up in an emergency room and have difficulty communicating. This is so important, as all kinds of things that are commonly prescribed...such as beta blockers, calcium channel blockers, a host of antibiotics, and many other drugs...are contraindicated with MG.

Finally, if possible, please ask your friends, family and loved ones to join you in being educated and promoting MG awareness. My husband knows when my disease is acting up because he has learned to see the signs (whether or not I have mentioned anything to him)...drooping eyelids and facial muscles, hoarseness, lack of volume in my voice, slurred speech, difficulty swallowing, shortness of breath, and severe weakness in my arms and legs...and he is super attentive and alert. He has worked hard at learning what he can so that if I ever go to bed in a weakened state, he will know to check on me through the night and should I need to go to the hospital, I know that he will be diligent to take me. 

My prayer for you is that you will be informed, prepared, and armed with the tools you need to fight the battles ahead. Yes, we are warriors, and we have an inner strength that is fierce. But we can't let stubbornness or lack of knowledge keep us from getting the help we need when we need it most. Know your body. Don't try to wait it out if you are struggling to breathe. If you wait too long, your next breath may be your last. And most of all, never, ever give up!

"I don't know how my story will end, but nowhere in the text will it ever read...'She gave up'."

'Tis the Season

Cold and flu season is officially here, and to be honest, a sense of dread comes over me right along with it. I have been struggling a lot with severe weakness lately, especially since I have had such a difficult time with severe adverse reactions to my IVIG treatments, so getting out of the house is a rare (very rare) treat. And then I hear it--sounds of coughing and sneezing pervade my world, and I begin to panic. Do I have my hand sanitizer? Should I have worn my face mask? Oh dear...do I just go home?

You know that commercial that shows what coughs and sneezes would look like were you able to see them? The commercial depicts a thick, green fog that permeates every molecule of the air around us, with no fresh, germ-free air to breathe. I totally identify with that commercial because with CVID (a primary immune deficiency) as my ever-present companion, I have no defenses against such things. Vaccines do nothing to help me (in fact, they are contraindicated in patients with the multiple autoimmune conditions I have), so the only choice I have is to avoid exposure altogether. And that means I must stay home.

I am not sure why people continue to go to the store, to work, to church, or have gatherings when they are feeling under the weather. Perhaps it is just an allergy or "sinus" as they often say. But what if it is a cold or flu, and the germs sprayed into the air via coughing or sneezing end up making a defenseless person critically ill? There are many immuno-compromised people out there--folks on chemotherapy, people with immune deficiencies, lung diseases, and autoimmune diseases of all kinds. To those of us in this situation, catching a "simple" cold or the flu can lead to pneumonia and result in a lengthy hospital stay or even worse--it could be a death sentence.

So I am pleading with you today to take care of yourself. Stay home if you are feeling under the weather. And if you and I have plans together and you are congested, coughing, sneezing, or are in any way less than healthy--let me know. I want to spend time with you--sometimes so much it hurts--but we can always reschedule for a time when we are all feeling better.

If you don't see me at church or other gatherings, please understand--it isn't that I don't want to be there. I do! But I must protect my health, and avoiding crowds during cold and flu season is one way to do that.

Won't you partner with me to make this season a healthier, happier time, especially for the many who are fighting a raging battle just to survive? On behalf of those warriors...those with Cancer, Lupus, Myasthenia Gravis, Multiple Sclerosis, Asthma, Primary Immune Deficiencies, Diabetes, and multitudes of other diseases, I pen this entry. I believe we can do this, if we work together!

May God bless you with a healthy and happy holiday season!

"Let each of you look not only to his own interests, but also to the interests of others"
~Phillipians 2:4~