One Patient's Positive Perspectives

Truth

Undeniable Truths

The fact that we have lupus testifies to the undeniable truth that we are imperfect. As much as I would like to think differently, I must admit each time I look in the mirror that I am imperfect in many ways.  While having a right self-view is very important, it helps if we can accept our own imperfections.

If we have lupus, there is absolutely nothing we have done wrong that caused it.  It is not our fault, we are not to blame, and it is not a result of failing to do some “sure-fire” preventive measure.  Lupus is an autoimmune disease that cannot be predicted nor prevented.  This is an undeniable truth.

predictably unpredictable

The only predictable thing about lupus is that it is…

Lupus is unpredictable.  The frequency, severity and duration of flares cannot be predicted.  They can be managed, shortened and responded to, and the risk of flares can be reduced by proper care and medication.  But, the undeniable truth remains that the “one predictable thing about lupus is its unpredictability.”

Everyone with Lupus does not have the same blessings and challenges. Unfortunately, all does not come out equal in this life, but everyone with lupus has the right to choose their primary focus, either on the blessings or on the challenges.

How we view the lupus adventure undeniably affects how we cope with lupus.  Celebrating the positives in life helps take the sting out of having lupus, or any chronic illness.

silhouette of group of six

Grateful for great crowd of supportive family and friends

I am extremely thankful that I have a wonderfully supportive husband and family, a great job, and countless other important resources. My support circle includes dear people who love me, pray for me and encourage me in my faith.  These precious friends and loved ones help me remember that God is with me in my daily struggle with lupus.

It is another undeniable truth that supportive family and friends make a great difference to someone coping with lupus. Unfortunately, some patients face their lupus alone, lacking this type of warm support and under-girding.  Their striving for victory over lupus’ effects can be difficult, private and very lonely.

winnie the pooh friendsSocial isolation sometimes associated with chronic illness can easily fuel feelings of self-pity and great discouragement.  People who are supportive and caring can positively influence someone struggling with the invisible challenge of lupus.

tax medical deductions

Medical tax deductions
increased my refund!

Medical care is expensive, with or without insurance. This is yet another undeniable truth about lupus.  For example, surprisingly, we accumulated enough out-of-pocket co-pays and other medical expenses to save money on itemized medical tax deductions.  This fact says a great deal about lupus treatment, all by itself.  This example doesn’t begin to express the high cost of lupus treatment borne by my insurance company and self-insured employer.  My income tax deductions are clear evidence of the truth that, even though I have excellent insurance, my medical costs count up, too.

Choices of consequence

elevator and stairs 2

Consider the consequences…
Stairs or elevator?

Our choices have consequences —  we all have some good and not-so-good results coming from the decisions and choices we have made throughout life.  Choices influence our lives and show something about who we are.

Our choices influence the home we live in, the friends we keep, the state of our finances, the work we do, the clothes we wear and the food we eat.  These choices show our personal priorities and values.  Choices we make impact our lives many ways, including influencing our health and lupus.

For example, if I choose to skip my medications or spend several days out in the sun, it is certain that these choices will cause my lupus to flare, which in turn could cause severe organ damage. Similarly, a choice to descend or climb a flight of stairs brings negative consequences impairing my mobility for days afterward.

I choose music!

I chose music!

We cannot choose lupus. But, we all at least have some choices about lupus and it’s impact in our lives.

When I was a very young teenager, I started smoking.  Soon, I was given two extremely clear choices, ultimatums.  “Stop smoking,” was echoed by my choir director who threatened to kick me out of a singing group, and my gymnastics coach who promised to oust me from the team.

gymnastics

I chose gymnastics!

I made a choice that preserved aspects of my youth that mattered the most to me then: music and sports.

That meant making an opposite choice that bucked the tide of what my peers were choosing, made me a little “un-cool” (in the vernacular of the early 1970’s) and ultimately led to social choices that kept me far away from illegal drugs.

Choosing wholesome things I loved more than the negative influences of peer pressure changed my life direction and helped put me on a vastly different path than before.

Choosing well to stop smoking had a part in influencing my ability to continue to sing in college, and eventually changed some life directions years later.  Another important choice radically change my life direction.  Choosing to reject my parent’s religion and become a Christian when I was 16 had an even greater impact on my life than choosing music or sports, both then and now.

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My singing tour group in college
(I am the shortest one in the picture)

Largely because of my newly found faith in Christ, and partly because of my singing  I could afford college.  I ventured out toward college without a penny to my name, and academic and music scholarships were blessings that funded four years of study, nearly debt free.

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Same group – We saw the U.S. performing eight  concerts a week on tour (I’m in center front)

Music and singing opened the door to a college education, first in California and then in Arizona. I was privileged to  travel half of the U.S. doing summer concerts.   Music helped foster friendships and relationships with fellow musicians (including meeting my husband!)

For thirty-five years I have enjoying the blessings of being able to sing solos, and love singing with others in ensembles and choirs.  I choose now to honor the Lord through music.

My education led to my career as a legal government manager, and ultimately that career provides me now with opportunities to make a real difference in government law.  My professional duties are a source of daily fulfillment, and give income, medical insurance (a means to better health) and a pension for my retirement.  Without seeking to educate myself, I would have been ill-prepared to fulfill the responsibilities of my career as a legal manager.

These two early, seemingly small choices in my teen years, filtered down over time with remote impact on many aspects of my daily life, even today.

Choices...

Choices…

Choices to change your lupus

Many other choices along the way contributed to who I have become and the place I find myself in today.  If we could predict the outcome of each choice, perhaps we would never have the courage to risk and sail out into adventures and choices with unknown outcomes.

My choices today will definitely influence tomorrow, but I have no way to precisely predict how they will affect me.  But, by listening to wisdom and making good choices, I am much more likely on a better path, headed toward a better end.

What choices can you make today that will affect your lupus positively?

bfpaintedladyonlilac

Some of my health choices today…

Here are some of mine:

  • Eat healthy foods, avoid unhealthy ones, drink enough water
  • Get enough sleep and rest when fatigue hits
  • Take my medications, every day, every dose and get my Benlysta infusions like clockwork
  • Keep my doctor appointments, get my lab work done and be a compliant patient
  • Exercise when mobility permits and rest when lupus flares
  • Cultivate the relationships and friendships that matter
  • Advocate for lupus awareness, educate and encourage other lupus patients
  • Plan on being a victor, and reject the temptation of a victim mindset
  • Intentionally cherish each day God gives me

Next… Lupus and choosing the victimless life

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Comments on: "Undeniable lupus truths, choice and consequence" (3)

  1. […] Friends Make College Worthwhile […]

  2. I get what you are saying. I sit many times, despondent, thinking I didn’t cause any of this, why am I suffering? I have watched what I eat, been clean as far as drugs, drank a little alcohol (never addicted or seriously drunk), and loved sports. Yet, as time passed, my knees started wearing out. By the time I hit high school, couldn’t participate in most sports. I ended up teaching others how to use upper body self defense, archery. I was then put in a group of boys, but the teacher had a evil plan for me: he was going to teach me weight lifting, but do a program for girls. We didn’t have one at the time. I got really into this. Then I was told years later I couldn’t do it anymore because I was having sharp pain in my heart. It was found that I had scar tissue on my heart. I have no idea why, and neither does my mum. I had to stop weight lifting.
    Then I found I really couldn’t do any of the regular things, like simple walking, for a long period. Work really became a challenge, going to classes while working on my Bachelor’s, and then horse back riding. The last one really pissed me off.

    Fast forward: Had a needed surgery at the time, with my left knee. Things were better for a time. Bought a new horse, did power walking, and played some tennis. Then shortly thereafter started having problems with the right knee. I was told by the doctor who did my left knee that the right knee was really in need of surgery as well, and he wanted me back within the year for the surgery. Insurance ran out, surgery was not a possibility. So, I dealt with the pain for as long as possible. My knee started going out, popping totally out of place, while at work. I was doing paralegal work and it was going out doing simple things like walking in the office, getting copies done, and sitting down at my desk. But, since I didn’t have insurance at this time, I couldn’t do anything about it.
    I was also diagnosed with a dangerous blood disease, Factor V Leiden. This changed much of what I can eat, my daily activities, stress, and added a blood drug and continual testing. It also placed me in one of the highest insurance categories of cardiac (I can’t really remember the exact term) problems. Thus many of my employers simply couldn’t afford to provide insurance for me.
    Then I found out I had Lupus, and had it all during my high school years. Answered a lot of questions for me. By this time, I had to be on meds, and needed to see a specialist. I was able to see her for some time, and she was able to do some rather extensive tests on me (Chinese torture more like it). She found out I had a lot of nerve problems. Great. She put me on another drug.
    By this time, I wasn’t able to sleep worth crap. I would routinely get 2 hours sleep a night, and then have a day where I simply couldn’t drag myself out of bed. Then I was diagnosed with fibro. Lovely.

    With all these issues, then being told my knees, both by now, needed surgery, I had to file for disability. Now three + years later, I still wait.
    I have sat here many times wondering what the hell I did. I thought I was treating my body very good, but it appears my body was set on mutiny. So now I sit, not able to work (no money, only food stamps), not able to live on my own (stuck with a mother I have never gotten along with, in a 9 x 10 cave), not able to walk my dog more than 100 feet (we used to do serious power walks so he appears to be seriously bored most of the time), and even swimming hurts my knees now. There is no insurance available to me now; don’t know what will be available at the first of the year. I also don’t have the funds to see my only doctor now. This takes away most of my meds. I have seriously gotten into my meditation more, as it is the only way I can really handle the pain. I have been taking tons of aspirin in an effort to keep my blood thin; taking part of mom’s Rx for pain pills; nothing for my RLS, which is now throughout my entire body; nothing for sleep; and once my free Rx from Lyrica is over (3 months from now) I won’t be able to get that either. I have to be able to visit my doctor at least once a year.

    I know this was long, I apologize. Sometimes I just feel the need to let my story go out.
    I feel very much like I was wronged or something. I can’t even do my volunteer work like I used to (which I actually was found as being a CASA of the year and was awarded a beautiful award). So I sit here and wonder what influence I am to have on the world when I am stuck in my cave.

    Peace & Love

    • Rene, thank you so much for sharing your story. It has clearly been a very rough, long road for you bringing you to this point. Your story is so much like many that I hear from other readers and other lupus patients that I meet. First, please permit me to encourage you to look at the good side of the many wonderful things you used to be able to do as you remember them. There is an amazing mental, emotional and even spirtual power in replacing bitterness with thankfulness.

      Bear with me, please, and keep reading. Hear me out.

      You cannot change the fact that you have lupus, as I said at the beginning of this post. The only aspect of lupus that you have total control over is how you look at it.

      With all the really rough, and honestly valid reasons you have to feel discouraged, you still have a choice about what it does to the inner you. As for me, in the rough times… when I couldn’t think because of lupus attacking my brain for months on end… when I thought I was going to lose my job and would have no way to support my family… when my husband was sick with asthma and blood clots (he also has Leiden V Factor, like you) and in and out of the hospital and I was pretty scared, I had a choice and I chose to NOT BE UNDONE. I didn’t want Lupus to have that much control over me!

      I chose faith. I asked God to help me, and give me courage, and encouragement. Lupus is lonely, but God is loving enough to reach through that to encourage me. God gave my heart joy, for no reason, except knowing He loved me and that He would take care of me.

      I don’t know where you stand on issues of faith, but I do believe the Bible. It’s account of the creation of the world and people, and Adam and Eve’s sin of pride and disobedience separating them from their relationships with a Holy Creator explain a lot about lupus. I viewed lupus as what it is, a by-product of my imperfection, something handed down to us genetically with a sinful part of our nature from Adam & Eve. Yes, God created the first two people and they were perfect, but they too had a choice, and chose badly.

      There were vast consequences of the genetic flaw that came along with their sin. If not for sin, the rest of creation would not have been flawed, either, and antibodies to disease would not be necessary. Lupus happens only because God created our bodies to have the genetic design to be able to produce antibodies, because he loved us even though we are sinners, and allowed it to help take care of us. Within our body’s amazing design, even when flawed by our sin, God graciously designed our bodies with the ability to change its defenses as germs mutate.

      It is this ability that also causes lupus.

      I heard one of the leading medical doctor’s from the Lupus Foundation of America speak here in Phoenix a couple of years ago, and she, probably without meaning to, explained the science behind this in great detail. She debunked the concept that Lupus is the body attacking itself. Some people are going to have lupus, it is part of the spectrum of how the body can change to defend itself. I will never forget her explanation [paraphrasing] that “if not for a person’s immune system having the ability to change in the way it triggers lupus antibodies, the human race would be come extinct. The ability to develop lupus is there because it is the same ability of the immune system to change to make new antibodies to fight new mutations of viruses and bacteria.” She told us to think about lupus as our body defending itself, just over zealously, and explained that “it is inevitable because of this ability, that a certain number of people will also develop the antibodies to their own tissues.”

      People have the ability to develop lupus, because of the immune mechanisms that help the human race survive.

      The expert’s highly scientific explanation was in complete harmony intellectually with my faith, while also answering the question, “why do I have lupus?” The light bulbs went on in my head, and it all made sense. Why do I have lupus? Because my imperfect body is getting carried away trying to defend me. When researchers better understood this scientific fact, it was a key to the development of the new biologic drugs, including Benlysta. My understanding of this also incorporates my biblical understanding of man’s imperfection, going back even to some things I learned in my fourth year of school, at a bible college, in a class about what the bible teaches about people and their sin.

      As for faith being a help, you first have to have a relationship with God.

      Not because we are good enough, but because He loves us so much, even though we are sinners and wants to restore us to a place where we have that connection with him. That’s the whole point of Jesus, Christmas, Easter and becoming a christian. If you stuck with me this long, please go ahead and click on the “About Faith” tab and read more about how to know you can have that kind of relationship with Christ.

      It is for the readers just like you that I have been working on a series about strategies for optimizing lupus treatment. The next two in this series still on the drawing board are Optimizing Lupus Treatment Strategy – Help with Medication Costs and Optimizing Lupus Treatment Strategy – Free/Low Cost Medical Treatment. If you are interested, I would be glad to send you email with advanced copies of what I am working on. There are many links that you might find helpful, including the drug companies that have programs for people just like you to help pay their medication co-pays, as well as free clinics and the clinical trials that offer free medical care.

      If you can forgive my (also) long comment, please do. I offer these thoughts with hope to shed light on the only true help I know, for giving us the ability to be a victor in the face of overwhelming trial, like what you have with your lupus. Joy is still possible, and the bible says that “the joy of the Lord is my strength.” This is my favorite quote from the Bible, and my daily battle cry.

      My sincere hope is that you might find the peace of God to help you in your daily struggle, and that you might find effective medical treatment to help your lupus. You are the reason I write this blog.

      With prayers for you,
      LA

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