Painfully Aware (#11 in my 30 in 30 series)

pain

I know a thing or two about Pain.  Pain and I go way back – back to when I was a freshman in High School.  I actually have difficulty remembering what life was like without having to deal with pain and discomfort on a daily basis.  I’m not complaining – just explaining.  I’ve actually learned a lot from my Pain and believe it has made me strong, even as it makes me weak at times.  When I was 13 years old I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).  It was scary, painful, and frustrating.  I would go to bed in pain and wake up in pain.  I felt like a 98 year old woman, hobbling down my high school’s hallway with a cane.  My peers didn’t understand – arthritis was for old folks, they would say with a snicker.  High school is tough enough, but add excruciating pain, visits to the Rheumatologist (where I was always the youngest one in the waiting room), ever-changing pain meds, and an un-cool limp, and it’s nearly impossible.  Fortunately, I survived high school and eventually my JRA went into remission in my mid-twenties.  I learned much about depression, isolation, strength, resilience, and hope during that time.  I also learned one of the most important lessons in my life so far – the separation of mind and body. Since my pain was a daily visitor, I figured I had two options – let my unwanted guest ruin my day (and, in the long run, ruin my life) or learn to accept my guest but not let it dictate how I felt emotionally.  Sure, my physical state was out of my control, but I was the one who chose how I felt and thought about it and myself.  I was eventually able to exist in what seemed like two opposing states – I could be in extreme pain but still have a smile on my face and have a decent day.  I couldn’t let myself be in as much emotional pain as my physical pain, because it would have ruined me.  I believe this lesson has subsequently helped me get through breast cancer and is now helping me deal with Lupus.  My physical being does not rule my emotional being – although sometimes it tries very hard to.

*To learn more about Juvenile Rheumatoid Arthritis, please visit  http://www.webmd.com/rheumatoid-arthritis/understanding-juvenile-rheumatoid-arthritis-basics

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Too pooped to post (#7 in my 30 in 30 series)

tired babyToday marks my 7th post in as many days.  It feels good to be meeting my creative goal of writing and posting daily.  The hardest part hasn’t been finding topics to write about, like I thought, but finding the time and energy to post my writing.  I work full-time, and some days, like today, it takes all my energy to get up, get myself and my kids ready, and make it though the day.  Fatigue is one of the most common and most debilitating symptoms of Lupus.  I came home today and went straight to bed, still in my work clothes.  I tried to post before I fell asleep, but was too pooped to post.  I slept for a few hours and only got up because I promised my family I would finish watching a movie with them.  I’m still pretty tired but wanted to make sure I wrote a little something to keep my writing streak going.  I’ll leave you with some info on Lupus and fatigue from the Lupus Foundation’s website:

How can I manage my fatigue?

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom. Fatigue can be debilitating, even to the point of forcing them to stop working.

It is unclear why extreme fatigue occurs in so many people with lupus, but the following appear to play a role:

  • Disease activity
  • Pain
  • Age
  • Current medications
  • Poor physical and mental health
  • Lack of good social support

Poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise can also be related to lupus fatigue. Before a physician can conclude that fatigue is related to these factors, he or she will rule out any “treatable” causes of fatigue such as anemia, kidney failure, or hypothyroidism.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group can help.

By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.

Tips to Help You Manage Fatigue

  • Alternate activities with periods of rest throughout the day.
  • Establish good sleep patterns.
  • Plan ahead; for example, shop for gifts throughout the year.
  • Prepare meals in advance.
  • Eat a healthy diet and exercise regularly.
  • If you smoke, stop.
  • Rest

Medically reviewed on June 20, 2013

To visit the Lupus Foundation website, please go to http://www.lupus.org/

The Write Stuff : 30 in 30

Writing has done many things for me – it helped me cope with a difficult childhood illness, helped me earn my degrees, helped me put on paper the feelings I could not speak out loud, and it helped get me through cancer treatment.  It helps me now deal with Systemic Lupus and the prospect of my cancer returning.  It gives me, and hopefully those who read my musings, hope for the future and a way to make some sense out of the senseless things that happen.  There was a time when I guarded my writing like an overprotective parent, for fear that people would see the “real me” and run away in horror.  But, when I finally did take the risk of showing my work to others, they didn’t run – it actually brought us closer.  Little by little, I shared more of my writings with others and secretly dreamed of being a “Writer” with a capital W.  But, it wasn’t until I was diagnosed with and survived breast cancer that I was comfortable sharing my most personal insights with perfect strangers. I kept a notebook during and after treatment; writing about my thoughts and fears, as well as the surprisingly funny and good times, helped me deal with a terrifying situation.  So, I decided to share my writing with a larger audience, and started this blog.  My intentions were to have an outlet for my feelings/experiences and, hopefully, provide comfort, humor, and support to others.

Now, I’m taking another step on my writing journey and working towards becoming a Certified Journal Facilitator.  My long-term goal is to be able to teach others how to use writing as a means of expression and healing.  My short-term goal is to become more disciplined about my writing and incorporate it into my daily routine.  So, I’ve decided that I will challenge myself to write and post something every day for the next 30 days.  I would like to invite others reading this to suggest topics for me to write about, as well.  Let’s see if I’ve got the “write stuff” – wish me luck!

P.S.  I’m counting this post as #1 – only 29 more to go!

In Sickness and in Health : Relationships and chronic illness

Being sick all the time is not easy – obviously for the person who is sick but also for the people who love them and take care of them. I have struggled with health issues for most of my life, starting with Juvenile Rheumatoid Arthritis when I was 13, then breast cancer, and now Systemic Lupus. Fortunately, I have had a wonderful support system in my Mom, my friends, my spouse and even my children. I can’t help but feel guilty sometimes though, because my exhaustion, my pain, my doctor’s visits and doctor’s bills all have an impact on those around me. It’s also hard to see the worry on their faces when I don’t feel well. I can’t do as much around the house, which puts more responsibility on my spouse (who never complains – God bless!) and I often don’t have the energy to do as much with my kids as I’d like to. Intimacy is hard, because chronic pain, early menopause, various meds and sheer exhaustion are not a good mix for anyone’s libido. Relationships can be complicated enough without the strain of chronic illness. I’ve met several people who told me horror stories of their families abandoning them in their time of need or spouses leaving them when they were diagnosed with a serious illness. I consider myself very fortunate to have people in my life who have stood by me -and continue to do so – in sickness and in health – in surgery and recovery – in chemo and post-chemo – through medication changes and side effects – day in and day out – despite the difficulties of loving someone with a chronic illness.

Some basic info on Lupus

Many people do not understand what Lupus is or how it affects over 1 million Americans.  I’ve been officially diagnosed with Systemic Lupus since 2009, but had symptoms for years prior to that.  Lupus is one of the most difficult diseases to diagnose and is often referred to as the “Cruel Mystery.”  I thought I’d post some information that I found on the Lupus.org website to help further educate people and raise awareness of this potentially devastating disease.

What is lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are two to three times more likely to develop lupus than Caucasians.
  • People of all races and ethnic groups can develop lupus.

What is the prognosis for a person with lupus?

The idea that lupus is generally a fatal disease is incorrect. In fact, the prognosis of lupus is better today than ever before.

It is true that medical science has not yet developed a method for curing lupus, and some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:

  • Follow the instructions of their physician
  • Take their medication(s) as prescribed
  • Know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization especially those who maintain a healthy lifestyle and follow their physician’s instructions.

New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.

Medically reviewed on July 12, 2013

*Information reprinted from www.lupus.org

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Feeling Good is a Full-Time Job

I’ve always had health issues. Let’s just say my immune system and I have never been on the best of terms.  At the age of 13, a swollen, painful ankle turned into a surprising diagnosis of Juvenile Rheumatoid Arthritis.  I had been an athlete up until then, with dreams of possibly getting a college scholarship in softball or maybe basketball.  That all vanished.  I struggled for years with chronic pain and depression.  All through high school and my college years, I had to find ways to deal with the pain, fatigue, and bewilderment of my peers, who thought I was joking when I told them I had arthritis. The Juvenile Rheumatoid Arthritis eventually went into remission, but I have had chronic pain ever since. When I was in my early 40’s, I finally got a diagnosis of Systemic Lupus, after having weird symptoms and worsening pain for years. Lupus is sometimes called “the cruel mystery”, because it can take years to diagnose and often people are given incorrect diagnoses along the way. I was told I had fibromyalgia, rosacea, bursitis, tendonitis, osteoarthritis, and it’s all in my head-itis. I was relieved when I finally got the correct diagnosis and was put on meds that would slow the progression of the disease and decrease the pain. When I found a lump in my breast a few years later, I thought certainly I had been through enough medically and it couldn’t possibly be cancer. Boy, was I wrong. I got through that, thanks in part to some of the lessons I learned earlier in my life about separating my emotional from my physical well-being. Now, I’m 46 years old, post-menopausal (thanks to some bad ovaries and chemotherapy), still have Lupus, and am a cancer survivor. I’m tired from the minute I wake up to the time I go to bed. Feeling good has turned into a full-time job for me. I have to make sure I’m taking my meds (whose side effects include pain and fatigue – oh, joy!), eating right, exercising, and following up with my various doctors. I make a special protein drink every morning with fresh fruit and almond milk, try to stretch each morning, and attempt to get to the gym each week to keep active and decrease the risk of cancer recurrence. I have to have labwork done every few months to monitor my meds and to make sure the Lupus isn’t progressing and the cancer isn’t back. I take supplements and have stopped buying foods that are processed or have too many ingredients I can’t pronounce. I try, I really do, to drink water throughout the day to stay hydrated and healthy. I have an actual full-time job, as well as two small children and a partner. I guess my immune system and I will never be friends, but I’m hoping, with all the work I’m doing, we can at least be on speaking terms.

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