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.

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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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Steroids … A Blessing And A Curse

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I am a 54 year old woman that feels like I’m living in the body of an 84 year old.  Most people my age have a GP (general practitioner). I, on the other hand, have as many doctors as a geriatric patient. My specialists include a Rheumatologist, Endocrinologist, Cardiologist, Nephrologist, Ophthalmologist, Dermatologist, Gynecologist and an Orthopedist. The most important specialist is my rheumatologist. I don’t see a GP since most of my symptoms relate to lupus. Besides most of my doctors defer to the rheumatologist since lupus effects all aspects of my healing process.

I’m in pain most of the time these days. The traveling circus of inflammation has put down stakes and refuses to leave. Most of my pain is in my joints, although an overall achiness accompanies a flare.  Recently, muscle pain and tightness has been added to my list of complaints. There’s headaches too, also a common symptom of lupus. And photosensitivity (sensitivity to light) goes along with that. Also, there’s generalized fatigue to compound any other symptoms. On top of all that, lupus causes damage to many different organs in the body. This disease affects the body’s organs like heart, kidneys and lungs. Pericarditis is one of my chronic conditions that lupus has caused. That’s a conversation topic for another blog.

The symptoms of lupus include:
*Joint pain and stiffness, with or without swelling
*Muscle aches, pains, or weakness
*Fever with no known cause
*Fatigue
*Sun or light sensitivity
*Hair loss
*Butterfly-shaped rash across the nose and cheeks
*Other skin rashes
*Purple or pale fingers or toes from cold or stress
*Headaches
*Photosensitivity
*Dizziness
*Sores in the mouth or nose (usually painless)
*Dry or irritated eyes
*Unusual weight loss or weight gain
*Trouble thinking, memory problems, confusion

Less common symptoms include:
*Anemia (low red blood cell count)
*Pleuresy (Chest pain when taking a deep breath)
*Pericarditis (Chest pain with palpitations and rapid heart rate)
*Nephritis (kidney inflammation)
•Blood clots
•Seizures
•Depression
•Strokes
(*denotes symptoms I have experienced or currently experiencing)

There are treatments for lupus however, there’s currently no cure for this debilitating disease. Medications are essential to my survival. I take Plaquenil (anti-malarial medication that decreases inflammation by decreasing the overactive immune antibodies that attack healthy cells). It’s supposed to keep lupus symptoms in check. Even though I’ve been taking it since I was diagnosed with lupus in 1997, it isn’t enough to prevent flares these days. My immune system is seriously confused! However as the disease process worsens, I take corticosteroids as prescribed. Prednisone helps reduce inflammation and swelling. I’m on steroids more often than not these days. They help decrease inflammation and shorten the length of flares. Prednisone causes cravings and makes me ravenous, hence weight gain. The other terrible side effects are mood swings. It’s horrible to go from ok to crying to angry for no particular reason. I hate the way steroids make me feel besides long term use can cause a myriad of health problems. I’m on prednisone more often than not as my condition progresses. Prednisone comes with a laundry list of problems. Too often I trade one set of symptoms for another. Therefore, I think of it as a blessing and a curse. Steroids decrease inflammation and give me more energy however the side effects are terrible.

A list of common side effects:
(I’ve experienced most of these at one time or another.)

-nightmares
-restlessness
-headache
-nausea
-vomiting
-thinning skin
-acne
-trouble sleeping
-weight gain

Serious side effects:
-changes in emotions or moods swings, depression
-changes in vision
-eye pain
-decreases immune system causing increased susceptibility to infections; fever or chills, cough, sore throat
-high blood sugar -symptoms
increased thirst
passing urine more often
feeling sleepy or confused
-swelling of your ankles or feet

Also, I use alternative therapy including vitamins and minerals. In addition, My heating pad is used on a daily basis. When there is severe swelling I use ice too. Rest is essential to recovery. Also, a TENS unit helps distracts the muscle pain signals. Epsom salt baths helps loosen up my muscles and decrease my pain. Rest and more rest!

Day in and day out, year after year, lupus never goes away. However, I refuse to allow lupus stop me from living!

Live in the moment. Be present. Don’t let life pass you by waiting for perfection. We are all living on borrowed time 💝

Lupus Awareness Month

pexels-photo-1021685.jpegMay is Lupus awareness month. This is one of the few times this mysterious condition comes into public eye. Statistics show that 2/3rds of the general population know little or nothing about lupus. Systemic Lupus Erythmatosis, lupus, SLE is a life long condition without a cure.

According to the Lupus foundation of America, 5 million people world wide are living with Lupus (1.5 million people in the United States). Lupus is a disease where the immune system is overactive therefore attacking healthy cells. As a result of this battle, an antibody is formed which causes inflammation. That inflammation can affect all parts of the body from a skin rash to major organs like heart and kidneys. It also affects joints causing pain and swelling. Fatigue is the most common complaint. Lupus symptoms vary per person since every illness is different depending upon each individual. This cruel condition can go from remission to ravaging illness within hours. Flares can last from days to years. Treatments from plaquenil to steroids can have severe side effects. Most people don’t know that chemotherapy isn’t only for cancer patients, it’s used as an immunosuppressant for lupus. This mysterious illness is not only difficult to identify, it’s difficult to explain to others and often called an invisible illness. Lupus is not contagious, meaning cannot be transmitted to anyone.

If I had to choose one word to describe lupus I would use upredictability. I never know how I will feel hour to hour. I’ve nicknamed Lupus calling it a traveling circus of inflammation. Inflammation can show up anywhere at anytime. That kind of uncertainty, not knowing what will happen next can cause anxiety. Also, the sense of loss can be overwhelming. There’s loss of activities I once enjoyed, in addition to the inability to be active. I’ve experienced the loss of my career as a nurse where I enjoyed caring for others. Most days I’m reduced to being a home body. Once an active member of the community, now there are days when I need to ask for help. It’s a humbling experience. It’s also tanked my relationships. It takes someone very special to deal with the effects of lupus.

It has taken me many years to come to terms with who I am with Lupus vs. the life I lived before Lupus. Living with limitations is all about knowing who you are and what you are capable of along with dealing with knowing the consequences of overdoing it. Important things to remember when dealing with lupus are; finding the right rheumatologist, finding the medications that work on you, limiting stress, maintaining good nutrition, avoiding sun and florescent lights, learning to listen to your body and finally accepting the consequences of your decisions. Every day is a new adventure when you live with Lupus, dealing with that traveling circus of inflammation. It’s a mysterious and debilitating disease that affects many parts of my body and therefore how I live my life. Lupus is exhausting but in order to survive we need to fight. Let’s get the conversation started to make a difference. Imagine a life without lupus.. imagine a cure for all autoimmune diseases. It’s time to illuminate this illness especially during Lupus Awareness Month🦋

One Step at a Time

The dreaded traveling circus of inflammation is forever growing and changing. Struggling with lupus for over 20 years has taught me… Nothing is ever easy! Lupus exacerbates the simplest of medical issues. There are times that my stubbornness and denial cause more problems. I’ll admit that I’m a bit of a procrastinator. I’ve learned that denying or pushing through pain is considered self-destructive behavior. It’s been a hard lesson to learn.

Per lupus foundation of America, 90% of people that have SLE will experience joint and muscle pain. I had a pain in my foot. Simple right? RICE (Rest. Ice. Compression. Elevate.) which I use whenever I have any new joint inflammation. After a joint has been inflamed for more than 72 hours, it’s routine to switch to heat.

After a couple weeks without improvement from anti-inflammatories, I saw my rheumatologist. I complained that my foot was swollen and painful to walk on. After x-rays, I was prescribed a surgical boot to take pressure off the ball of my foot and steroids.

After two months walking in the boot, I received a cortisone injection in my foot. Most painful injection I’ve ever had! Cortisone injections are painful but it’s the quickest and safest way to decrease inflammation.
Additionally, walking in the boot threw off my balance which caused hip and back pain in addition to the continuous foot pain. So, my rheumatologist treated me with more oral steroids, a muscle relaxer and pain relievers.

Seventeen months later, my foot pain continues to remain unresolved in spite of two cortisone injections, oral steroids and anti-inflammatories. My hip has been ailing me intermittently for fifteen months however for the past 2 months the pain is worse. I’ve been having difficulty getting up the 12 stairs in my home. So I literally crawl up the stairs. Getting up the stairs is painful but there isn’t any problem going down the stairs. Curious huh?

As of today, I’ve had 3 injections for my hip bursitis and two injections to my foot in addition to oral steroids, muscle relaxers and pain relievers. Since that didn’t help, I was sent to physical therapy. The therapist quickly got to the bottom of the problem with a simple exam. It turns out that my IT band has scar tissue and my trocantar muscle is weak. I just about hit the ceiling when she palpated the areas.

Physical therapy continues and so does the pain as I try to build muscle through exercising those muscles. The therapist taught me it’s important to keep my body in alignment. I hadn’t realized how much I had slacked due to fatigue. I’ve learned to balance activities with rest periods. It’s nothing new but I’m more diligent these days. Learning to protect my joints is very important too. Instead of bending at the waist, I’ve learned to bend at the knees. Aldo, I go to sleep with a pillow between my knees which takes the pressure off my hips and back. When I’m reading, I’ve learned to get up every 15 minutes and move around. And now I have exercises to strengthen my hip and thigh muscles to perform twice a day. Icy Hot and the heating pad are my new best friends.

The Lupus Foundation of America states 10% of people with Lupus experience muscle pain and /or weakness during a flare which is a direct attack by the immune system. Symptoms include aching muscles (myalgia), weakness and pain. Inflammation of the muscle is called myositis. Tendonitis is also common. Tendons connect muscles to the bones. It’s the same treatment for every ailment, Nsaids, steroids, and plaquenil.

As a result of the steroids and immobility, I’ve gained 10 pounds over the last six months. Exercise, says the doctor. I try to explain that it’s difficult to get moving when I’m fatigued and in pain. Mobility is definitely an issue for lupies.

Soooo… nothing is ever easy when you have lupus. I’m still fighting, taking one step at a time.