12 Things I want you to know about living with Lupus

May is Lupus Awareness Month. I have systemic lupus erythmatosus {SLE or lupus for short}, diagnosed in October 2009. I have friends that live with this disease as well.  Day in and day out, year after year lupus does not go away. I don't spend a lot of time focusing on lupus and the effect it has on my life but, at the same time, I am not embarrassed or ashamed of it.  I want to educate people about this insidious disease that needs a cure.  I am pulling back the curtain on this thorn in my flesh today to help raise awareness about this illness, one that affects more than 1.5 million people in the US alone and an estimated 5 million people around the world. The Lupus Foundation of America gives a brief description of lupus: "Lupus is a chronic, autoimmune disease that can … [Read more...]

Gratitude in Hard Places

Living with chronic illness has taught me many things. Utter, complete dependence on God. {Psalm 70:5} The finite nature of our life.  {James 4:14} How our bodies are designed to need true Sabbath rest.  {Isaiah 58:13-14} That everyone has a thorn in their flesh, mine happens to be dressed up as lupus.  {II Corinthians 12:7} Knowing all of these things doesn't make the excruciating pain go away.  It doesn't remove the bone deep fatigue that plagues my day.  Knowing doesn't help me remember appointments or be less distracted. But, knowing helps me maintain perspective.{Colossians 3:2} And being grateful for the everyday little things {like the opportunity to sneak in a nap} and the miracles {I'm still alive} keep me focused on what is truly important. Seeing the good can be hard … [Read more...]

10 Things I’ve learned about living with invisible illness

I have been living with invisible illness {diagnosed} since 2008.  Chronic pain, fatigue and bizarre symptoms are part of my everyday life.  Statistics tell us that 1 out of every 2 Americans lives with a chronic illness {diabetes, lupus, fibromyalgia, rheumatoid arthritis, multiple sclerosis, etc.}   I know I am not alone.  So, why do I often feel that way? 1.  Invisible illness is isolating. Let's face it, people get tired of hearing about your "aches and pains", tired of having you cancel at the last minute because you suddenly feel like you've been hit by a truck, etc.  At least, I think they get tired of it so I withdraw, not wanting to be a bother.  Loneliness is a frequent companion. 2.  Invisible illness is unpredictable. I can go to bed feeling fine and wake up, unable to get … [Read more...]

Fatigue, Frustration and Faith

Image by kriscip via Flickr I am tired. The kind of tired that you feel in your bone marrow.  The kind of tired that no one understands if they do not have chronic illness.  The kind of tired that isn't phased by a three hour nap. I have a tendency to push myself.  Goes back to the whole recovering Type A, over achieving, perfection seeking sinner that I am in the flesh.  Frustration creeps in, its sneaky, sticky fingers wrapping around my thoughts. All my longings lie open before you, O Lord; my sighing is not hidden from you.  My heart pounds, my strength fails me; even the light has gone from my eyes. {Psalm 38:9-10} Hot tears of irritation burn my eyes.  I don't want to be so tired. I don't want to be sick.  I don't want to live like this. Not because I feel like I deserve better. … [Read more...]

Invisible Tuesday

Some of you know that I host a MomTV show on Wednesdays (at 1pm EST) called The Invisibles. The show focuses on living well with chronic/invisible illness.  To help my listeners and to educate my readers, I am going to start posting on the same topic that my show will focus on each week on Tuesdays. Tomorrow's show topic is Minimizing the Impact of Your Illness on Your Loved Ones.  Here are some tips related to what I share on the show. Your family member's are not stupid, don't treat them like they are.  Don't say "I'm fine" if you aren't.  Trust is an important component of family life.  Don't become someone your family doesn't trust. Remember that there are things children do not need to know specifics about (including finances and treatments) Resist the temptation to downplay your … [Read more...]

Thankful no matter what…

Today's theme for Thankful Thursday is trials.  I think that is an appropriate topic for me to write about given the events of the last few weeks (or my whole life if you want to get technical). Some of you may remember that I broke out in (what they thought were) hives about six weeks ago.  After almost a month with no relief, the results of a skin biopsy revealed that the hives were actually lupus.  Further testing revealed that I have systemic lupus (and my diagnosis of multiple sclerosis is still also accurate). The lupus diagnosis hit me kind of hard.  I am normally a pretty positive, give it to God, don't worry about what you can't control kind of gal. I don't know if it was because this was so unexpected r maybe because I am just human, but I felt sorry for myself with a capital … [Read more...]

Skip to toolbar