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 out of the same bed.  For a Type A planning person like me, this is the bane of my existence.

3.  Invisible illness makes you stronger.  I have found an inner strength I didn’t know I possessed.  The strength to keep going no matter how tired, the strength to be there for my kids regardless of how I feel, the strength to invest energy I don’t have in my marriage, the strength to be myself and to love who I am.  I know that God allowed this in my life for a reason and the strength that I possess comes from Him directly.  This doesn’t mean I am always strong!  Please understand that.  But the bad days are bearable because I know {that I know that I know} this is just my earthly circumstance.

4.  Invisible illness is not your fault.  For the longest time, I searched for the reason for my illness{es}.  Was I eating the wrong thing?  Handling stress the wrong way?  Exposed to toxins?  Don’t get me wrong, those are all important things but NOTHING I did {or you have done} or didn’t do, made me sick.  We live in a fallen world where illness and pain abound.  However, how I handle my illness is up to me.

5.  When dealing with invisible illness, you will find {and need} your faith.  There are studies that show that prayer and a strong spiritual foundation aid in healing and psycho-social well being.  My journey with MS, lupus {and the related blood clotting disorder that almost took my life}has brought me closer to God than I ever knew possible.  In this way, I consider my illness a gift.  The vulnerability and desperation brought on by being sick has made me more dependent on my Heavenly Father and I will never wish that had not taken place.

6.  Invisible illness affects everyone, not just the “sick” one.  Marriage, parenting, friendships, sibling relationships, work, church- my illness is a part of my life so it impacts everyone in my life.  Being aware of this helps insure that I keep others feelings and needs in mind and not give in to the temptation to become self focused.

7.  Invisible illness does not have to define you. I am a daughter of the Most High King, a mama to four, Mimi to one little Sweet Pea, wife to an amazing man, lover of words, student of The Word, friend, sister, auntie, teacher, speaker, coffee guzzler, teen mom advocate who happens to live with chronic illness.  God designed me to be me and nothing, including invisible illness, will take that ability from me.

8.  When you have invisible illness, you need a doctor that is invested in you.  So many physicians are motivated by money rather than patient care.  We all deserve a doctor that pays attention and genuinely cares about positive outcomes.  Look until you find the right fit for you- it can literally be a life and death decision.  I have been so blessed with the physicians I have found.  {I joke that I have an “ologist” for every body part and then some}  One of the reasons I am happy with my medical team is because I have not hesitated to move on when I have come across a doctor that did not take my opinions, questions or suggestions seriously.

9.  The internet is a lifeline when you live with invisible illness.  I discovered blogging quite by accident back in 2008.  A few months after I was diagnosed with MS, I was looking for information and came across several blogs that were informative.  Then, I discovered Twitter, started blogging on my own and connected with other like minded women.  My life has been richly blessed by my friends that live in the computer {many of whom I have met in real life and love dearly}.  I am eternally grateful for the ability to connect with a friend, anytime, anywhere.  The value of that connection is priceless when you are laid up in bed for weeks at a time.

10.  Invisible illness will make you regret it if you push yourself too far.  Oh, how hard this lesson has been for me to learn.  When I do too much, push through when I shouldn’t, ignore the warning signs of a flare..I regret it.  Rest, hydration, not doing too much- these are all necessary for me to maintain my health.  I suffer and my family suffers if I push past my limits {but I do anyway because I am one stubborn woman}.

This week {September 12-18, 2011} is Invisible Illness Awareness Week. I will be writing more about this topic this week.

Do you know someone that lives with an invisible illness?  Do you live with one?  I would love to pray for you {or your friend}.  Please leave a comment with your first name and the illness you live with and I would be honored to lift you up to our Healer.

This post is linked to Top Ten Tuesday at Oh Amanda.

{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, brings tears to my eyes and pains my heart.

The trials of life are what make us strong, show us what we our souls are made of.  My children will be better adults because they have lived through their mother almost dying.  Right now, they are having to pitch in more and help out more because I have been immobile since my fall in March.  That is life.

The ups and downs, in sickness and health…children should be with their mother. As I said a few years ago, It wasn’t my time….yet. Let us all remember to live every day for Him and the path that He has anointed for us as we do not know the day, time or hour that God could call any of us home. Apparently, this judge needs to be reminded that no one but our Creator knows when our time on earth is finished.  Who is she to deny this mother and her children the opportunity to be together for however long life is?

If the children are being raised in a stable and loving home, there is no reason for them to be uprooted 600 miles away to live with their father.  This case sets a scary precedent and I pray the decision is overturned in the appeals process.

Dare I say that living with an emotionally unhealthy mother is far more damaging to a child than living with a physically unhealthy mother? Yet, judges allow children to stay in toxic homes far too often.

I pray for Alaina Giordano and I ask that each one of you that read this lift her up in prayer as well.  Stop by her blog and leave her a comment.

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 looking attractive for my husband.  And, I have to confess I struggle with this a lot.

Here are a few things I need reminded of today:

• Comfort and beauty are not mutually exclusive.  When I was first diagnosed with MS, I had to give up my high heeled shoes because of balance issues.  So, I went out and bought cute flats.  I still get compliments on many of those flats I bought over three years ago.  I knew that wearing my heels made me feel attractive so I needed to replace them with shoes that made me feel equally cute.  This same principle can apply to outfits to.  There is a difference between the should-have-been-thrown-away-a-long-time-ago sweatshirt I am wearing right now and an attractive cotton top that is roomy enough for me to comfortably nap in {that would match my yoga pants just as well}.
• My husband deserves an attractive wife.  Not because he asks for one but because men are visually stimulated.  You need only read the Song of Songs to grasp that concept.  It honestly doesn’t take that much more effort to dress in something {at least} semi-attractive than in does to put my sweats or pjs on in the morning.
• When I look better, I feel better. When I take the time to put on some mascara and lip gloss, coordinate my jewelry and outfit and slip on some cute flats, I feel girly and pretty.  I need that for myself as much as my hubby needs it from me.  And this goes for nightwear too!

Sheila had some great tips on her site, including getting a flattering haircut {check} and keeping only the clothes that you look good in {definitely need to work on}.

Excuse me while I go change and clean out my closet….and then take a nap.

For more Wifey Wednesday posts, visit Sheila’s blog.

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 enzymes have returned to normal just by letting my liver rest (aka holding off on meds).  They have been checked three times in the past 2 weeks and each time they have improved.  There is some residual damage to my liver from whatever was going on with it but if all goes well, it won’t get worse and may even heal itself over time.  All the tests for autoimmune hepatitis or a metabolic issue came back negative..the only test that was positive was for a virus that is common in people with lupus and that is probably what caused the acute episode.  Mike and I were both so excited!

He will continue to closely monitor me as my spleen is enlarged (probably from the same virus) and as I slowly resume some of my medication.  He is letting me go back on the lupus meds because my rash has been returning since I have been off of it.  He will check my liver levels every two weeks to make sure the medicine doesn’t irritate my healing liver.  In the meantime I will remain off of the MS meds for the time being, probably at least two more months.  They have a significant impact on your liver and he doesn’t want us adding them back in to the mix too soon.

Through the course of the myriad of tests I had they discovered that my gallbladder is not working properly and having an enlarged liver and spleen pushing up against it is not helping.  I have to make the decision whether or not to have it removed.  I will be going back to the hematologist (the doctor that monitors my blood clotting disorder) to see if he thinks it is safe to be off of Coumadin (a blood thinner I have been on since my pulmonary embolism in 08) long enough to have surgery.  I am sooo not comfortable going off of it for any length of time but that could just be an anxiety issue on my part. We will see what he suggests.

Other than that, I have been having blood pressure and heart rate issues related to pain and the fact that I couldn’t take anything for pain (except narcotics which I feel strongly about not using except Tuesday when I ended up in the ER because I was in so much pain).  I am now allowed to take an occasional Tylenol, which may seem small but to me is very exciting!

Thank you all for your continued prayers and support..God surely showed up as the doctor said he watched in amazement as my results went down each time he received them.

While my faith does not waver regardless of test results, it is a nice change of pace to get good ones.

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 life.

Can I please be transparent with you?

I have NOT always been at peace.  God grew me to this place through some incredibly dark and difficult days.

And I am NOT always at peace.  When I lay in bed, I have to fight off bad thoughts, self pity and running through worse case scenarios in my mind.  I have even been having nightmares some nights.

In most moments, however, I am at complete and total peace.  None of this is a surprise to my Jesus.  Nothing passes through His filter and in to my life that He is not going to use for His purposes and my ultimate good.

Do I wish that my kids didn’t have to worry about their mama’s health all the time?  Sometimes

Do I feel like a burden to my hardworking hubby?  Sometimes

Do I feel like even posting about this latest health issue is somewhat whiny and weak? Somewhat

Do I wish that I could take a simple Tylenol for my aches and pains? Yes

Do I know that God has my days numbered in His book and the condition of my liver doesn’t change that? Absolutely

Do I know that all things are working out for good through all of this?  Definitely

Do I know that the Great Physician is in charge?  You betcha

What I know for sure is so much better than what I feel.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  II Corinthians 4:17

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 children do not survive the first year after transfer.

I have friends who have adopted these special little ones and have given me first hand accounts of the horrendous conditions of the orphanages and nursing homes in these countries.

When I think of those deplorable conditions, my disability seems insignificant.  Medicare at 32 is a blessing, not a curse.  Quality medical care is a miracle.

I thank God for my change of heart and attitude and pray for each one of the least of these waiting for their forever families.

Please consider donating to this important cause this holiday season.  Every dollar goes to helping a family fund a special needs adoption.  I can’t think of a better gift than a family!  Can you?

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 leave me a comment!

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 CWA TV, going to physical therapy for a flare-up, hosting a radio show, running a ministry at church- you know- the everyday stuff =)  Not to mention, I am taking online classes,  I have a local site to manage and an organizing blog and some other stuff I can’t even mention on here.

What is my point?  Posting here at Multi-Tasking Mama may be a little scarce (even though this is my favorite place to write) for the month of July because this multi-tasking mama is little busy!

See you, much more frequently, in August!

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 atrophy-ing (no idea if that is a word) and they don’t know why and they don’t know how to stop it was overwhelming.  Making the appointments for all the tests they want to do to figure out the cause of the problem was overwhelming.  Trying to figure out how to discuss all this with my husband without him panicking was overwhelming.  Letting myself think of how unfair it is to have MS, Lupus and now- something else causing this issue- was overwhelming.

I had brought my Bible along for the ride (cause I can’t drive right now) but couldn’t bring myself to open it.  I did, however, turn on the radio and one of my favorite songs that we sing at church came on.  The song is “I will Rise” by Chris Tomlin.  There are many words that instantly touched my heart but here is the line that grabbed my soul:

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say “It is well”

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

Overwhelmed?  How about the fact that Jesus overwhelmed the grave?  That is overwhelming, not my temporary, temporal circumstances.

Feeling still a tad angry, I said to God “help me”.  And three words came to my mind (and I know that I know that I know God put them there)

Check your medications.

Clear as day and something that none of my doctor’s had bothered to do.  As soon as I got home I googled muscle wasting and the names of my medications.  Second med I typed in had a big warning about this problem.  Not trusting myself, I called my pharmacy.  My pharmacist researched it, called me back and said “Call your doctor right now.  You need to have some blood work done”.

Yes, I have called my doctor and yes, they are on top of it.

But, isn’t God awesome?  And, what if I had continued in my overwhelming pity party and not reached out to Him?  Would I have heard that still, small voice?

Hearing God is a finer thing!

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 sneaky and demanding.

And, the gift of today is knowing that no matter what flower fades in my life, my God and His Word are the same.  Yesterday. Today. Forever.

What a gift.

  Join us in unwrapping our gifts here today.