One Patient's Positive Perspectives

The good…

Lupus brings on many challenges and many victories.  Today I am sitting in the cancer infusion center at the hospital getting my tenth Benlysta infusion, and am pondering the good, the bad and the ugly of lupus.

First, the good – Five good things and small victories that keep me going.

  1. An outstanding support and encouragement team:  my husband, family, employer, church and friends
  2. Overall improvement using new biologic drugs:  first, two isolated Rituxan infusions; and now, monthly Benlysta infusions
  3. A great medical team:  a great family doctor who first suspected lupus, the top rheumatologist my family doctor sent me to over 20 years ago, a great insurance program, awesome infusion team, flexible dentist, a careful conservative chiropractor, and the Great Physician.
  4. Finding out that exercise can reduce my pain, lift my emotions, give me more stamina to fight the lupus fatigue, and help me lose some of the weight that prednisone makes it easy to gain.
  5. The resources available today on the internet that inform, encourage and challenge me:  Lupus Foundation of America, internet medical resources, other lupus bloggers, blog followers and the online lupus community. Check out my blog roll on the Great Lupus Blogs page for more.

the bad…

Next, the bad – Five of my toughest challenges from lupus.

  1. Central nervous system lupus involvement:  Brain fog, mental confusion, short-term memory loss, forgetting names, confusion about date and time, and impaired conceptual and analytical thinking
  2. Fatigue: the bone-tired weariness that everyone else does not see nor understand the reason for
  3. Arthritis:  Deep pain and inflammation in all my body’s joints, pain in my tendons, deep bone ache in my arms and legs, and occasional lupus migraines
  4. Peripheral neuropathy: pain and nerve irritation in my legs, cranial nerves and spine
  5. Sjogren’s syndrome:  dry mouth, increased dental challenges, and recurring painful mouth and nasal ulcers

the unacceptable!

Last, the ugly – Five totally unacceptable things that require me to be humble, to ask for forgiveness and/or take other, sometimes remedial actions.

  1. Completely forgetting to go to a really important social or work event, weddings, birthday parties, business meetings, doctor appointments – there is no way to recover the lost opportunity, so honesty and an apology is usually the best and only response.
  2. Inadequate sleep and the brain-dead morning that follows – sometimes it makes me have to write off the next day and go to bed to keep from going immediately into a flare, and sometimes just requires taking longer the next morning to wait on CNS symptoms to clear before driving to work.
  3. Times when I have a bad attitude toward my lupus or others around me – this is tough, because the best way to deal with a bad attitude requires humility and fixing the unacceptable condition of my attitude and heart. Sometimes, this simply cannot be corrected without the grace and forgiveness of God, and His kind work to allow me to borrow from Him an attitude I cannot author by my own imperfect self.
  4. Overactive social schedule, and not knowing when to say “no” – This is difficult when I have to retract a promise or commitment because I have misjudged my abilities. The hit on my credibility and reliability is something that I have to sustain to correct things after over committing myself.
  5. The times I am unable to meet the needs of my family because lupus wins a battle – This requires honest, direct communication with those closest to me, balanced by realizing that love sometimes must be selfless, and the realization that I am not the only one with needs. All good and healthy relationships need give and take to be balanced. It is important to acknowledge that there are unmet needs, and it may not be fixable.

Comments on: "Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus" (6)

  1. butudontlooksick said:

    I love your blog (as you may know) and completely identify with you. I think your assessment of lupus is right on the money. Even us “seasoned” lupies get stuck in denial sometimes and try to do things we cannot. HUGS, Julie

  2. I share & can identity with EVERYTHING you said, also add, being to hard on yourself and pushing yourself beyond limits, not knowing how & when to say no to others & yourself because it makes you feel like an invalid if you do and battling depression. Be encouraged and remember to fight for yourself, your family & others like you. Best wishes!

    • Mimi: Thank you so much for stopping by my blog long enough to add to the comments on this post. Your thoughts are so true! Have a great day! LA

  3. I never knew how serious lupus is until i read your blog. My wife’s cousin also has lupus, and he suffers as with it. Mark will keep praying for you

    • AO: I am so glad you stopped in and had an opportunity to learn more about lupus from my blog. On of the key reasons I am blogging is just for people like you who need to know more about this important autoimmune disease that affects one out of every 150 people, and 90% of these are women. Men with lupus are definitely in the minority, like your wife’s cousin, and sometimes theirs is more advanced than most average cases. Yes, lupus is potentially serious and organ and life threatening, and appropriate treatment is critical to good outcomes. However, many lupus patients enjoy reasonably good health, especially if they get a prompt diagnosis and appropriate treatment. Thank you so much for your interest in lupus, and sharing about your family’s connection to lupus. Have a great day! LA

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