Invisible

A0E833FA-7BB6-4604-B995-B8575E0F093CLupus is sometimes called the invisible illness. “Invisible illness” is an umbrella term which means it’s not visible to your average person. Lupus is one of many in this category which includes everything from diabetes to mental illness to autoimmune disorders like lupus and MS. 

The invisible illness sufferer is often labeled as lazy or fake while disease wreaks havoc on the inside of their bodies. When trying to explain a disability, sufferers are frequently met with the response, “but you look good” which is one of the most frustrating things to hear. Unsolicited advice on how to get better only adds frustration and exasperation to an already difficult situation. Would if I could just snap out of it! Diet.. exercise.. get rid of all those toxic medicines you take.. lose weight.. change your attitude .. think positive.. are all things I’ve been advised with the best of intentions HOWEVER wishing doesn’t make it so. It’s the ravages of this illness that tear my body apart from the inside out. Unfortunately, all too often, people judge others by what they see. They make conclusions based on the way you look. For most people, it’s difficult to understand someone who “looks fine”, but acts disabled and therefore judgments are made that person couldn’t possibly be sick, because they do not look sick. 

Also, I feel doctors don’t hear me when I describe my symptoms. They don’t believe there’s a problem until it’s obvious. Once again, it’s because most of the problems are not visible nor do they have exact tests that can measure how bad my symptoms are. In addition, there are too many doctors that use “cookbook medicine” due to insurance criteria. “cookbook medicine” is treatment based on algorithms in medicine where health providers rely on protocols and rules rather than on an individual approach to the comprehensive needs of a patient. So unless your complaints fall exactly into their guidelines you don’t get the treatment you require. It’s really frustrating! Have you ever heard the saying seen and not heard? That’s how I feel!

The rest of the time I feel invisible. I know people can see me but what I mean is that they see a person but don’t see me, the real me and what I’m going through. People just don’t understand how I feel. Part of that is my fault since I downplay my symptoms because I don’t want to upset family or friends. I also try to avoid complaining all the time.  Statistics show, 87% of lupus patients downplay their symptoms. All too often, I say I’m ok even though I’m not just to avoid going into detail about my problems. 

There is another factor to consider which is unless you have experienced the symptoms first hand you really can’t understand. The best a sufferer can hope for is support and thoughtfulness. Everyone has had colds, the flu, aches and pains. The option to return to optimal health from that illness or resolve it might include taking an anti-inflammatory, a soothing bath, cold medications and rest. You might even withdraw from the world for a day or two, or up to a week depending on the illness. No one judges a person for that and many may even empathize for the few days when you’re under the weather. Then a normal healthy person gets back on their feet to move on with their life in no time at all. BUT… what if that cold or flu never went away? What if that pain and fatigue doesn’t resolve or even gets worse? What if it caused absence from a job or chronic tardiness? What if the fatigue and pain was so bad that it’s difficult to move around? What if the only thing you could do was lay in bed or on the couch? What if the symptoms caused you to get short tempered, withdrawn or depressed? What if all those things caused you to isolate yourself, to disengage with friends or be unavailable for social activities? 

Living with lupus is like having the flu that never goes away. Imagine the anxiety and depression you might feel knowing that what you have was chronic, had no cure, and will be a part of your life for the rest of your life. Then, imagine trying to explain this new problem riddled reality to your family, friends, and co-workers in a way that they would understand when you look perfectly fine on the outside. Denial doesn’t get you anywhere so facing the facts is the best way to move forward. Education and eliciting support not only helps you but also gives family the ability to be supportive. Sometimes, we have to accept that life will not go back to the way it used to be. Best to let go and move forward whatever way we possibly can. 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” – Martin Luther King Jr.

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Turning Hopeless Into HOPEFUL

EA02B144-5628-4905-92B3-39BDEBC1F606My lupus diagnosis took 10 years. While I was relieved to have validation for the confusing joint pain and fatigue caused by the traveling circus of inflammation, I came to the harsh realization that the doctors could not cure my illness. At best, it was hopeful they could keep my symptoms at bay. I pondered hour after hour about the likelihood of this condition consuming my body and the possibility of a cure for lupus in my lifetime. The possibility was slim to none. No words can express that feeling of doom. It’s devastating to be 35 years old, “in the prime of life”, and experience debilitating problems while knowing it would more than likely be the cause of my demise. Today, 20 years of endurance and perseverance later, I have new found hope! 

A friend recently brought a YouTube video to my attention. The video was an interview with Neil Riordan PA, PhD about stem cell therapy currently being used at his Stem Cell Institute in Panama. Stem cells, particularly Mesenchymal (adult) stem cells (MSC’s), are used in treating autoimmune disorders such as MS and Lupus. Stem cells regenerative powers give hope to a multitude of patients worldwide. Studies show stem cells can heal autoimmune disorders as well as knee, shoulder and back problems. Stem cells could be a virtual panacea!

Lupus is so frustrating. The doctors, too often, don’t have answers or many treatment options. For lupus sufferers like me who don’t respond to conventional treatments of steroids and biologicals, stem cell therapy is my last hope. This therapy will lessen the debilitating long-term effects of lupus. Also, it will reduce the need for medications like steroids and biologicals. This alleviates their harmful side effects on our bodies too. If this rejuvenating cell treatment is effective it would stop damage to vital organs such as kidneys, lungs and heart. 

Stem cell therapy sounds like a promising treatment. However, not all stem cells are alike. Stem cells can be obtained many different ways; from your own body fat, from bone marrow, from an umbilical cord or from embryos. The most recent studies have shown that the umbilical stem cells are better than embryonic stem cells. Mesenchymal (adult) stem cells, MSC’s, otherwise dubbed golden cells are the most effective and from an umbilical cord. These cells are harvested from umbilical cords, processed and multiplied then get injected into your body to basically reset all the other cells. In a Lupus sufferer, the healthy cells are attacked by the fighter cells. Our bodies are actually at war within itself. Needless to say our cells are confused. Basically, when the stem cells get injected, they reboot all the rogue cells. 

Lupus stem cell treatment is currently approved for use in Panama, China, Thailand and Canada. It’s not approved for anything other than knees and shoulders in the USA. However, The Lupus Foundation of America has recently launched and funded 11 studies on the effects of stem cell therapy. Over 3.8 million dollars have been designated to start clinical trials. These trials will be conducted over the next 5 years. It’s promising to hear that stem cell studies are being conducted around the world. FDA restrictions will likely delay stem cell therapy in the USA but there’s still hope for a future. 

Risk factors comes with every treatment out there. According to recent trials, the patients experience flu like symptoms for a few days to weeks post treatment, however, once the initial discomfort is over their chronic symptoms either resolve partially or completely. I’m optimistic that in the next 5 years we will have a cure for many autoimmune disorders like MS and Lupus. 

Currently, this new treatment for moderate to severe lupus costs about $10,000 to $20,000 US dollars per treatment and is not covered by insurance if you live in the US. That amount of  “out of pocket” cost is exorbitant. But, when I ask myself what I would do to be cured I always respond with whatever it takes. As of today, it’s unlikely that I’ll fly to Panama or Thailand for stem cell treatments but I have HOPE! A future free from lupus is on the horizon! I look forward to a cure 💜 

For more information check out more research. 

Stem Cell Therapy Rising Tide by Neil Riordan PA, PhD

MSC’s by Neil Riordan PA, PhD

 

Refocus and Be Kind

2E5E4584-4C6F-4DD5-8587-F159D98354ACIt seems like all I do lately is complain about one thing or another. For the average Lupus sufferer, life can be difficult for many different reasons, pain and fatigue are the usual offenders. 

I don’t want to be know as a miserable complainer so I’ve decided to refocus and look for the positive in life. My inspiration was a quote by philosopher Epictetus, “A man of sense does not grieve for what he has not, but rejoices in what he has.” Then I did a little research and found an older book – Simple Abundance by Sarah Ban Breathnauch. It is a day by day journal type book that helps you focus on the positive. It reminds me to be thankful for those little things we take for granted so I’ve started writing a gratitude journal. No matter what is going on in my day, I take a few moments to concentrate on simple pleasures like sunshine, a beautiful sunset or a helping hand.

Every day I choose to focus on something positive. I choose joy, to be happy whenever I can. Don’t get me wrong, I have good days and bad days. I believe being kind and helpful are great virtues to strive for. Sometimes it’s the simplest things that can mean the most to someone else. Aesop, a Greek philosopher, said “No act of kindness, no matter how small, is ever wasted.” 

With my lupus condition it is a little challenging since I don’t have a whole lot of energy. Everyone has something to contribute if we merely try. Here’s some ideas that require low energy:

  • It can all start with a smile! Smile! Smile! Smile! 
  • Let someone go in front of you in line
  • Give a stranger a compliment
  • Hold the door open for the person behind you
  • Tip generously 
  • Hold the elevator for someone 
  • Limit complaints 
  • Listen to a friend vent
  • Donate to charity 
  • Write letters to soldiers 
  • Snap a photo for a couple 
  • Pay for someone’s coffee
  • Spread encouragement on social media 
  • Feed the birds
  • Donate old towels and blankets to an animal rescue 
  • Write a great review or notify a manager when you receive exceptional service
  • Compliment a parent with a child when you witness good behavior 
  • Run an errand for a busy family member 
  • Pick up family from the airport 
  • Tell someone how much they mean to you 
  • Send someone a text message that you’re thinking of them 
  • Make someone a special meal
  • Celebrate success.. big or small 

As we enter into the holiday season, let us not lose sight of the important things in life. The people we love and those who make a difference in our lives.  I know I’ve mentioned the movie It’s A Wonderful Life before but I watch that movie when I feel down. It helps puts life in perspective. The character George gets to see how he inadvertently changed people lives. I think everyone has those moments where they’ve helped someone. Hopefully, we help others on a daily basis. Slow down and take note of the simple pleasures of life like children’s laughter, a warm hug and good food to eat. Most of all, Be kind!

Resilience

6D71DB3F-2391-4C49-BB82-DAE0F9521226Every day is a tightrope walk while living with the traveling circus of inflammation called Lupus. There’s a fine line between control and chaos. Of course we cannot control what life throws at us but we can choose how we react to it. A resilient spirit taught me I have control over what I think and how I react. It is with a resilient spirit I survive the trials and tribulations of life. Everyone has their share of life’s ups and downs but it’s how we cope that makes a difference, part of that is learning resilience.

You know there are people who are fighters. They fight for life, to beat an illness, equality, and for the lives of others. Then there’s the opposite.. that person who cries the sky is falling over a hang nail or a bad hair day and give up without trying. Of course we cannot control what life throws at us but we can choose how we react to it. I think we all have our share of problems to deal with but we can’t let those problems or situations break us. I used to wonder what I did to deserve so much pain and uncertainty. I felt cheated by illness, cheated out of my successful career and the life I had planned. With the dark cloud of lupus following me everywhere, I never know when it will rain on my parade. It’s easy to become bitter and angry however that’s not the person I want to be. Now, some days are about mere survival and others are about squeezing every bit of happiness out of a day. 

Who we are on this journey of life and the person we are in spite of life’s battles, whether it’s divorce, illness or loss of a loved one, or any other things that can tear a person down, determines if we’re surviving or living life a happy life. Spirituality influences our ability to be resilient. Believing, having faith gives us hope, peace and comfort in day to day life. Spirituality is about compassion and gratitude, finding miracles in every day life. Every day I try to find the good in myself and others. I’ve learned to be more compassionate, more understanding, more empathetic and above all, more accepting. 

As a resilient spirit, I choose to focus on the positive, embrace the moment, and believe it will get better. I connect with nature by going for a short walk in the forest preserve as often as possible to connect with nature. It settles me and brings peace. I choose to write. My writing is a bit of an escape, so is reading. Also, helping others will always get my mind off of my own problems. They’re many different useful distractions for instance hobbies, friends, family and a multitude of other healthy choices. Sometimes those distractions can even help someone else. 

We all have difficulties to overcome on this journey called life so let’s learn how to have a resilient spirit, cultivate it, hone it. 

  • Acceptance is part of survival. Start by accepting responsibility for what you can control and let go of what you can’t. By accepting the current situation and modifying  behavior I’ve learned to endure. To heal, we need to accept ourselves and our situation. This applies to everyone in life not just those of us with chronic illnesses. Acceptance isn’t about giving up. It’s about moving on. Over coming feelings of guilt, shame and regret. Change happens, accept it! The sooner you do, the sooner you will find peace. I accept that everything changes and focus on the most important aspects of life. George Orwell’s quote ~ Happiness can exist only in acceptance, is posted on my bathroom mirror. 
  • Perseverance is important, never give up! I try to be as self sufficient as possible. Not only will it boost my ego for the accomplishment but it will help create a positive attitude. I may not be an olympian or marathon runner but I still feel triumphant at times. It’s minor accomplishments compared to other people but it’s success for me.
  • Realistic optimism is understanding the situation is temporary, that good and bad outcomes are only transitional. You can’t let those moments define you. I’ve stopped comparing my life to what it used to be.
  • Open your mind to all possibilities. Flexibility relieves some of the anxiety. Ask for help when needed. Don’t choose to be a victim, take control! Focus on the most important aspects of your life…. people, memories and happiness. 
  • Challenge yourself to find beauty in every day. Feeling a connection to the living world around us brings peace, it’s kind of transformational; A beautiful bright full moon, the sound of a summer rain or a butterfly floating among the flowers is a spiritual experience to me. I’m truly humbled by nature. It makes you realize that you are a very small part of the world around you.
  • Focus on what is actually happening at that moment and try not to anticipate anything else. Do your best to cut out drama! You know the old saying don’t cry until it hurts? I tend to overthink the endless possibilities. When I start going there stop that thought process by staying in the present.
  • Your experiences make you who you are. Everyone has experienced failure and disappointment. No one has a perfect life. No one chooses to have a chronic illness. It’s how we deal with what we have that makes a difference in living a happy life. Failure and mistakes are part of the learning process. Becoming emotionally strong enough to let go of failure and learning from mistakes is a part of life. Personally, I focus on what I can do. No sense in wallowing in the I can’t, or the past. When my mind says go but my body says no – I must adjust accordingly to survive. I have good days, bad days and sometimes a mixture all in one day. We can learn to become stronger from our challenges. 

Resilience takes effort and mindfulness. Whatever happens, I try to become content with my life. Every day I choose to be a survivor, NOT a victim and resilience is the key. I have to believe things will get better, to have hope, in order to survive. Hopefully, we can use the trials and pain to become a better person. Become aware of life’s priorities, it’s not the material things that matter. What matters most are the people in your life and the memories made. The future is unpredictable, savor the moments you are triumphant. Let’s choose to do more by living life and not just surviving. 

There’s a Japanese art of fixing broken pottery with gold called Kintsugi. I love this as an analogy to life and resilience… our lives are the bowl pieced together with gold by overcoming our challenges. Yes, it’s a scar but it’s not unsightly. Our experience molds us into who we are, find the beauty, scars and all. A favorite Ernest Hemingway quote comes to mind – The world breaks everyone, and afterward, some are stronger in the broken places.

Myalgia, Myositis, and Lupus

8E772BFA-5517-463C-8342-581CACFEC00DLupus related inflammation can be found anywhere in the body. This time the traveling circus of inflammation has set up camp in my muscles. It appears that the hip pain (I’ve been experiencing for the past year and a half) has evolved and now spread to include my right arm. Recently, I woke up with arm pain in the upper posterior arm, tricep area. That muscle is responsible for extension of elbow, straightening the arm. Due to the moderate amount of swelling in my upper arm that drained into the forearm, I spent the day in the ER ruling out a blood clot. My entire arm was swollen, all the way down to my fingers. Thankfully, there was not a blood clot causing the swelling and ultrasound was negative. The rheumatologist diagnosed it as myositis. The symptoms continue to worsen effecting everyday tasks like lifting my arm, climbing stairs, carrying groceries, difficulty getting up from a chair, difficulty lifting objects onto a shelf, getting out of the bath, and even turning over in bed. 

Myalgia means muscle pain. Myositis is swelling/inflammation in muscles. Weakness/loss of strength, swelling, and pain are the most common symptoms of myositis. Lupus myositis mostly affects neck, pelvis, thighs, shoulders and upper arm muscles. Fatigue and difficulty moving limbs puts us at risk of falls. Muscle weakness may progress over weeks to months. Sometimes muscle tenderness and atrophy develop. However, it takes destruction of 50% of muscle fibers to cause symptomatic muscle weakness which indicates advanced myositis.

Lupies often experience muscle aches, pain, fatigue and fevers. However, there are many reasons for muscle pain, weakness and fatigue. Making a diagnosis can be challenging. Doctors will rely on physical examination, imaging such as MRI, and lab tests like Ck, aldolase and Ana. Also, a muscle biopsy to confirm a diagnose of myositis might be necessary. It is important for your rheumatologist to determine the cause of your symptoms since treatments vary. Muscle weakness also may be a side effect of drugs used to treat lupus, including prednisone and hydroxychloroquine (Plaquenil). So, drug-induced complications should be ruled out as a cause of weakness. Note that drug-induced complications usually do not produce elevated levels of muscle enzymes as is seen in lupus myositis. 

There is no cure for myositis, but symptoms can be managed. Typically, treatment begins with high doses steroids to quickly reduce inflammation. Also, modifying antirheumatic drugs (DMARDs) specifically for autoimmune disease are used. These immunosuppressant drugs, such as azathioprine and methotrexate are used when steroids fail. Intravenous immunoglobulin can also be used.

Self care is always part of recovery. It involves taking a proactive part in treatment.

Exercise is a very important part of the treatment plan for myositis. Physical therapy can help prevent muscle atrophy and regain muscle strength and range of motion. After drug treatment begins, a regular stretching exercise program can help maintain range of motion in effected arms and legs. Physical therapy might help prevent permanent muscle shortening. You may also want to add whirlpool baths, heat and massage. It’s important to keep muscles strong and flexible.

Rest. Getting enough rest is important in managing lupus and myositis. Take frequent breaks during the day, limiting activity.

Nutrition. What you eat affects your health. Also, supplements like Calcium, Biotin, Vitamin C, Selenium, Omega 3, Vitamin D and Vitamin B12 support muscle strength. 

Stress Reduction. It is imperative for lupus sufferers to find outlets for the daily stress. All forms of relaxation, like yoga, biofeedback exercises and meditation. 

There are many scary complications that go along with myositis that I choose to push to the back of my mind. They include cardiac arrhythmias, difficulty swallowing, lung involvement causing shortness of breath and calcium buildup in the muscles causing infections. 

My lupus symptoms continue to progress and this condition is becoming devastating. It’s taking away my freedom one piece at a time. Hopefully, the steroids will do their job and shut this traveling circus down! 

Things a Lupie Would Rather Not Hear

FABD53D5-440D-4B35-96B1-4FEF4A9F5704I’m feeling a bit frustrated these days. It seems nobody understands or knows how to deal with someone that has a chronic illness. I’ll apologize ahead of time for my rant. It’s just unbelievable the things I’ve heard over the years. I should just stop complaining and explaining! 

Things a Lupie would rather not hear:

  1. “You don’t look sick!” Lupus is labeled as one of the “invisible illnesses”, most symptoms are not obvious. (See previous blog post.) No you don’t understand what it feels like to have lupus, unless you’ve lived in my body.  I have good days and bad days BUT my good day is equivalent to your sick day.
  2. “It can’t be that bad!” Fatigue, joint pain, skin rashes, muscle pain, sun sensitivity, fevers and headaches. Also, it can cause inflammation of the body’s organs like heart, kidneys and lungs. 
  3. “Push through it.”  Actually I do push through it most of the time. Some days getting out of bed is a challenge. 
  4. “It’s not that bad, it’s just a rash.” That rash is itchy, burning and painful at times. When obvious to others it’s embarrassing. People think it’s contagious and treat you like a leper. 
  5. “I understand because I hurt/twisted my ankle.” Your sore ankle you hurt playing basketball is not the same. Your pain will heal and go away. It’s not about you! Don’t complain because I complain. It’s not a competition.
  6. “You’re lazy. You should go to work.” It’s difficult to hold a job when your joints are swollen and painful, have unexpected fevers and constant fatigue. At best, my symptoms are unpredictable. 
  7. “Just snap out of it.” Ha… Would if I could!
  8. “Wear sunscreen. You can still go out in the sun.” The flare produced by sun exposure is not worth an afternoon of sunshine. Fever, fatigue and joint pain with swelling are just few symptoms after sun exposure. The best option is avoiding the sun. 
  9. “You need to stay active so you’re joints won’t hurt.” Yes moving does help the joints to stay lubricated. However when the joint is inflamed, it feels like it’s on fire, burning inflammatory pain. 
  10. “Stop taking those medications. They’re making you sick.” Treatment side effects often outweigh the symptoms of the illness. Sometimes I trade the symptoms of lupus for the side effects of the prescription medication. 
  11. “My friend had it and was cured with diet and vitamins.” If a particular diet or supplement could cure my illness, I would gladly give up meat, dairy and gluten. I would take the vitamin B, L lysine, manganese and eat the turmeric, ginger and lemons. By the way, I’ve tried every suggestion without avail. Besides, there wouldn’t be a million and a half people suffering from this disease. 
  12. “Go exercise.” It’s not that easy when you feel like the tin man walking and you’re in pain. 
  13. “Lupus is your problem.” It doesn’t just affect me. Yes, I live with chronic pain and fatigue.  Yes, I am sensitive to sunlight.  Yes, I deal with the impact of this illness on a daily basis.  But, so does my family and those that love me.  Over the past few years, my family and friends have witnessed me battle this illness. It has affected my mood, my ability to join in on activities I once enjoyed and with the heart incident, their sense of security that mom will always be there for them.

After dealing with this illness for 30 years, try to understand that I have educated professionals caring for my health. I keep current in research and all possible “cures”. I research all treatment options extensively before making choices regarding my healthcare. I did not choose this illness nor is it from something I have done wrong or poor life choices. My health and wellbeing is just as important to me as it is for everyone else.  

Faith and Tradition

930922D9-3388-49A2-9EA4-839988657895I live with a chronic illness that can be debilitating. Lupus and its limitations brings daily trials and tribulations to my life. I know I’m not alone, we all have trials to deal with because that’s part of life. I think that without God’s grace and mercy I would not have survived another year. Faith gives me the strength to move forward. My mother gave me an amazing gift, the gift of faith. She used to say, everyone has a cross to bear.

For me, taking part in an annual spiritual retreat reaffirms my faith. Every July during this event, I reflect on the past year by rejoicing the good, accepting the bad, praying for a healthy peaceful future and giving thanks. This retreat is a 9 day novena which includes songs, an inspirational speaker from the diocese and praying the rosary. This Italian feast of Our Lady of Mt Carmel culminates on Sunday with the procession of the statue of the madonna being carried through the streets in celebration. It includes the statue, the band and clergy followed by the different sodalities with their devotional saints and ending with all the devoted followers. That procession is an example of devotion, faith and our future. Since my condition has progressed, part of my prayers include participation in the sacred procession.

During this time, long buried emotions bubble to the surface. It’s a bittersweet time, happy that God has given me another year on this earth and sad for those loved ones we’ve lost along the way. My mother believed that Mother Mary was the intermediary to get to Jesus. Year after year, I witnessed her devotion to Our Lady of Mt Carmel. Even though she suffered during her life, her devotion was unwavering. She would say “a son will never deny his mother’s requests.” It pains me that my mother is no longer with us. I believe she’s here in spirit but we all know it’s not the same.

This was my mother’s tradition and her mother’s before her. Her mother came to the United States as an Italian immigrant in 1916. She began the devotion of Our Lady of Mt Carmel by coming to the Italian feast. This tradition continues from my grandmother to my mother, then to me, now passed down to my son and hopefully future generations. Not only do we come to the novena to honor Jesus’ mother on our spiritual journey but it’s a time of comeradery. Sharing this tradition with family and friends makes this a very special gathering. This tradition has been passed down for 125 years leaving the next generation to continue to uphold its traditions and values. It was touted as “A gala day for the Italians”.

Some of us hold this tradition dear to our hearts and can’t imagine life without it. I carry in my heart loved ones lost and friends no longer with us during this time of reflection on the past year and spiritual planning for the future. It reminds me to trust in God and his angels and saints, to put them as the center of my life. Matthew 19:26 -With God all things are possible.

Looking forward to a blessed new year🌹

 

 

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