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...]

Parenting and illness

There is a sad story circulating the news outlets that has mothers {including myself} outraged.  A judge in North Carolina has taken primary custody of a mother's young children away, mostly because she is battling stage 4 breast cancer. {A summary of the story and other posts on the web can be found here.} While I do not pretend to have all the facts of this case nor am I privy to the thought process of the judge involved, the premise is frightening. I live with chronic illness.  MS, Lupus, a blood clotting disorder, etc. impact my health every day. Does illness also impact my parenting? Absolutely. Does illness render me incapable of adequately parenting my children? Absolutely not. The thought of what this woman is enduring, on top of fighting for her life for the past four years, … [Read more...]

Fighting the Frump and Fatigue

Today's topic for Wifey Wednesday: Caring for our Appearance. OUCH! As I sit here in my Old Navy sweatshirt and ratty yoga pants, I needed to read this today.  I had another marriage post planned that I will publish in the future but felt convicted to write about this topic for those of us living with chronic illness. There are many days when getting out of bed is a feat in and of itself. My body hurts, I am weary and the thought of turning on the curling iron makes me want to crawl back in bed.   By the end of the day, when my hubby comes through the door, the benefit of any brush that made it through my hair is long gone.  And, he never complains about it. Somehow, the man still finds me attractive, even when I look like death warmed over. But, that doesn't let me off the hook of … [Read more...]

The Great Physician

I am not used to good news from the doctor (and when I say doctor I mean any of the dozens of "ologists" I see on a regular basis). This recent liver problem was discouraging to me and the prognosis and outlook were dismal each time it was discussed with any of the "ologists". BUT GOD! Yesterday, I had my two week follow-up with the gastroenterologist to go over all the tests he subjected me to over the last few weeks and to (supposedly) decide on treatment options. Instead, he had good news... Here is an excerpt from the email I shared with my family and friends after the appointment: Just wanted to update you on my appointment with the specialist yesterday...GOOD NEWS! He was amazed and said he couldn't explain how I went from such an acute episode to normal in 2 weeks but my liver … [Read more...]

Peace and Quiet

Thank you all for your prayers.  I had a great time speaking at a local father/daughter banquet last Friday evening and God granted me not just the words but the stamina to deliver them. I am in a place of rest, quiet and peace.  A beautiful place to be, honestly.  Different circumstances would be preferable but I am used to my health being an issue. My liver function is not normal right now.  The doctors are attempting to figure out why and until then {and possibly indefinitely} I am off the medications used to contain and treat both my MS and lupus.  I am very tired and somewhat nauseous...I had a week full of tests and appointments last week and this week looks much the same. People in my everyday life often comment about how "at peace" I am when things like this occur in my … [Read more...]

Medicare and Privilege

Yesterday, something came in the mail for me. It looked like this... Many emotions swirled in my mind and heart.  Most of them related to self pity about my disability(s) and the seeming prematurity of needing Medicare. I loathe self pity.  So, I turned to God for an attitude check.  He is always faithful in providing those for me. God brought my thoughts around to the children helped by Reece's Rainbow, including the little boy I pray for, Blake (you can find a link to donate to his adoption fund in my side bar). Children with down syndrome and other "disabilities" in the Ukraine and other parts of the world are discarded to orphanages, where they can live until 4 or 5 years old.  If they have not been adopted by then they are transferred to an institution where many transferred … [Read more...]

Legacy of Caring

I was recently in NYC for a blogging/social media conference.  Johnson and Johnson was there and requested some bloggers to make videos describing something that they care about.  Naturally, those living with chronic illness are frequently on my heart {although I had to quickly decide to talk about that OR foster care OR human trafficking OR the bazillion other things that I care about and pierce my heart}. I chose to speak about how living WELL with chronic illness is something I am passionate about. It is easy to get depressed and caught up in the negative aspects of illness.  I much prefer to focus on the blessings{and I think it is ultimately better for my health that way}. Here is the clip of my interview: What is an issue you care deeply about?  I would love to know so please … [Read more...]

Random Musings

First of all, I am honored to have been nominated for a CEO (Chief Executive Organizer) SocialLuxe blog award (sponspored by Avery) for my organizing blog!  I am so excited and would be ever so grateful if you would click here to vote for me (once daily) through July 12th.  Next, July is a crazy month for us.  Jason is on a break from school (which makes my days quite a juggling act), we are going out of town for the 4th of July weekend, Mike and I are celebrating our 13th anniversary on the 6th, we are taking our first day trip as an entire family (all three boys) in three years the following weekend, Jared is then leaving for a week of mission camp, then we all go to Florida to visit my family and leave my boys there for two weeks.  In addition, I am super busy getting ready to launch … [Read more...]

Listening to the still, small voice

I have been having some (not so fun) issues with my left leg in the last few weeks.  My doctor(s) attributed it to my MS and put me on a steroid dose pack.  While that reduced the swelling on the MRI, it did not resolve the problem.  What is the problem? Muscle atrophy. Atrophy (according to Wikipedia) is the partial or complete wasting away of a part of the body (in this case my left leg). God has a whole post about atrophy in His body (the church) swirling around in my brain.  But, that will come at another time. This post is about how God speaks to us.  He didn't just speak to people in Bible times and then stop.  His Holy Spirit lives in us and guides us- if we listen. Yesterday, returning from the doctor I was not in a happy place.  Trying to digest the fact that my muscle is … [Read more...]

Flowers fade

I am not a gardener. I am pretty sure both my thumbs are black. When we downsized and moved in December, I didn't pay much attention the landscaping on our new home's lot. I was so pleasantly surprised a few weeks ago when pretty pink bushes bloomed out front.  A luscious purple bush in the back, with a perfect view from the screened in porch. And then, my favorite, the bluish purple flowers that are weaving their way up our lamp post in the front yard. I am not a gardener. I don't know a chrysanthemum from a forsynthia but I do know pretty when I see it. I appreciate the beauty of the flowers and at the same time I realize that under my lethal eye, those plants probably won't last long. My flower has faded these past few days.  Withered in pain and fatigue from an illness that is … [Read more...]

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