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.

Ahem…yeah.

So, anyway here I am playing catch up again {days 15-22}.  Bear with me, mmmk?

Day 15: Show your dream home

If this question had been posed three years ago, my dream would have materialized quite differently.  However, since reading Radical and going on a journey with God {as a family} our view of our future and our desires for that future have changed.  No longer do I want to move to the mountains to a log cabin with my hubby.  I don’t need granite counter tops or hardwood floors {although I’m not opposed to either}. In fact, we made the decision to downsize in December 2009 to a house half the size with a lot an eighth of the size and have not regretted it {except for the days I long for peace and quiet SOMEWHERE in this house}.

We are open to moving, if God calls us to.  If I could live anywhere I wanted, it would be southern Florida to be near my brothers, nephews and my dad. And, the house in those dreams looks like this:

This is a picture of my brother Tom’s house and I would be more than happy to be his next door neighbor!

{skipping day 16 because the crazy things I have done in my life are not things I am sharing with the interwebs}

Day 17: Something you are insecure about/something you are proud of

I am crazy insecure about my weight.  I have gained over 45 pounds since 2008 when I was diagnosed with MS.  The inactivity from injuries and illness, coupled with side effects of medication plus a lack of self control in the face of depression has me weighing more than I ever have.

I am also insecure about my writing.  Whenever I press publish on a post {or don’t} it is usually because of paralyzing fear, rooted in insecurity {which truly equates to pride}.  This is something I talk with the Lord about often.

I am proud of the children I have raised.  My boys are special, funny, polite, confident and most importantly, they love Jesus.  Since I started at this parenting thing young and not knowing Christ, I am constantly amazed at who they are growing up to be.

I am also proud of my hubby and I.  We married as two wounded unbelievers and have weathered many storms.  We have been together for almost 16 years and have been married for 14!  Praise the Lord!

Day 18: Wedding Talk

I’ve already posted a picture of our wedding day for this challenge so I will tell you a little about the day.  It was a hot, clear day in July and we had a beautiful outdoor ceremony.  One of my favorite memories of the day is that my great-grandmother Inez attended from Florida.  She passed away in 2006 but she always talked about that day and I am blessed that she was there for it.  Marrying Mike is one of the best decisions I have ever made.

Day 19:  Talents and Hobbies

I love to write.  Some say it is a talent of mine.  I also sing….I love to sing on the worship team at church {and in the shower and the car}. I like to read, travel, ride on the back of my hubby’s Harley and spend time with my kiddos {fur and human!}

Day 20: Something I wish I could forget

The sting of being rejected by your mother is one that fades {until it happens again, then the wound feels as fresh as the first time} but does not ever go away.  I wish that it did.

Day 21: Favorite Recipe

I love the burgers my hubby makes for the grill.  You can find the recipe on my local blog.

Day 22: Favorite Websites

For inspiration: (in)Courage, A Holy Experience

For frugal living: Balancing Beauty and Bedlam, Pennies and Blessings

For the writer’s soul: Chatting at the Sky, Lysa TerKeurst’s blog

For parenting boys: The M.O.B Society {I write a monthly column there called Tackling the Talk}

For fun: Scary Mommy, Rage against the Mini Van

For making me think: A Deeper Story, Desiring God blog, Shaun Groves

Kindred Spirits: Joy in this Journey, Teri Lynne Underwood, Brooke McGlothlin, Lynette Kraft, Marla Taviano, She Sparkles, We are THAT Family

And, that is ENOUGH about me for one day

I have never given it much thought, until this week.

Monday, I received a gift from a woman I will never know.

Part of her knee was grafted into mine so that I will be able to walk again without brace, cane or walker.

ACL reconstruction is usually done by taking your own muscle from somewhere else {a hamstring, etc} and literally reconstructing the ACL that was torn in my fall.  However, because I have MS and other medical conditions the surgeons agreed that donor tissue was the best way to go.

And, on Monday they attached the ACL of a fifty year old woman into my right knee.  I don’t know the details of the tragedy or accident that took her life.  I just know that she had a giving heart because she chose to give of herself, even after death.

A few days later an envelope arrived in the mail that gives me the chance to thank the donor’s family for making the choice to let her body be used for good, even after she stopped living.

As I wrote my thanks in a card and struggled for words, I felt so grateful.  People don’t realize that organ and tissue donors don’t just give hearts and lungs and life saving parts, they also give live giving parts.  That ACL didn’t save my life but it will improve the quality of my life beyond measure.  For that I am grateful.

I have had that box checked since I first got my license.  Will you consider the same?

And the counting of thanks continues…

~  pain killers

~  ice packs

~  chocolate covered pretzels

~  friends that bring meals

~  anti embolism stockings

~  Redbox

~  kids old enough to care for their recovering mama

~  fur babies that snuggle up, knowing you don’t feel good

~  an empty blog reader

~ generosity of strangers

What are you thankful for?

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.

Pre-Radical: We have taken our children to serve in soup kitchens and nursing homes over the years.  It was something to do together and our thought was to give them a glimpse of how blessed they are and to introduce them to the concept of giving back.

Currently:  It is no coincidence that during the time we have been reading Radical as a family, friends and fellow bloggers like Kristen, Jennifer and Lisa Jo have traveled to other contexts, like Africa and Guatemala, and brought back their words, their experiences and their heart for the rest of us.  Deep reservoirs of compassion were tapped in my heart just living vicariously through them.  Then, there are friends like Stephanie that travel to parts unknown to rescue discarded children and another context takes on a whole new meaning to us. However, aside from giving of our money, we aren’t doing anything to serve in a different context.

Our biblical community {small group} has been doing random acts of kindness projects and we are looking for a regional mission trip opportunity to wet our feet, so to speak.

Upcoming:  I don’t know where I, we, fit when it comes to serving in another context.  I do know that the hubby and I decided that we were foregoing a cruise in February to save money to go on a mission trip as a family this summer.  The thought scares me but makes me feel excruciatingly alive at the same time. Our

Barriers/Obstacles: My health, first and foremost.  My hubby is terrified of me catching some funky disease while on a mission trip.  Suffice it to say that he is researching all the possibilities to make sure we don’t go anywhere too hot, etc and will be consulting my doctors before we go anywhere. Heat exacerbates MS something fierce.  I am less worried about this then the hubby but know that he has to feel comfortable for the trip to even happen.  Another obstacle is finances.  Going on a mission trip is not cheap.  However, God is faithful and since we are being faithful to the process of this Radical experiment we are learning where we can cut the fluff from our budget and use that money for a trip.

I can’t wait to see what God has in store!

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!

As someone that lives with autoimmune diseases (multiple sclerosis and systemic lupus), which have been linked to chronic inflammation, I had a lot of questions for the doctor and looked forward to hearing his perspective.  Other common illnesses with a connection to chronic inflammation are diabetes, heart disease and cancer.

I started by thanking Dr. Sears for voicing the theory that the mantra of “eat less, exercise more” does not work for everyone when it comes to weight loss and living a healthier lifestyle.  Instead, Dr. Sears believes that an anti-inflammatory diet is the key to being healthy.

He talked about the cultural attitude that those that are overweight are “morally inferior” when in actuality, in many cases, they are genetically predisposed to carry weight.  Dr. Sears further asserts that “ancient genes” are triggered by the very foods that we are encouraged to eat.

Dr. Sears gave me three steps that everyone can take to reverse the affects of chronic inflammation in their bodies in 30 days.  Yes, three simple steps can reverse a nasty physiological process that can cause serious health issues (SO LISTEN UP).

1. Remove all (omega-6 fatty acids) vegetable oil from your pantry.  Throw them out.  This includes vegetable oil, canola oil, corn oil, margarine, etc.  Substitute olive oil, slivered almonds and guacamole in their place.  (I would add you can substitute applesauce for oil as well, but that is per MultiTasking Mama)
2. Take (omega-3) fish oil every day.  Dr. Sears said our great grandma’s had it right when they recommended a tablespoon a day.  Fish oil has natural anti-inflammatory properties and is an important supplement.
3. Rebalance your diet.  Our diets need to be the correct balance of protein to carbohydrates.  Dr. Sears pointed out that our bodies produce the same insulin response to whole grain carbohydrates as they do refined flours. (I am still sticking with my whole grains but need to work on the balance concept)  When asked how can you know if you have struck the right balance in your diet, Dr. Sears said that if you have no hunger for 4-6 hours after a meal then you have eaten a well balanced meal.

He admits that “it is easier to get people to change religion then to change their diet” but points to the importance of taking what we eat seriously.  Obesity is an epidemic and he attributes this to our love for the “3 P’s- pizza, pasta and pastry”.  We need to educate ourselves on how the food we eat interact with our genes and our hormones.  People need to be on an anti-inflammatory diet for the rest of their lives. 

You can read more about all of this at Dr. Sear’s website and follow him on Twitter. 

I was not compensated for this post.  I was given the opportunity to interview Dr. Sears through the RoleMommy network and was happy to pass the information along to my readers. 

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.