What is this blog for anyway?

I arrived home from Blissdom with a heavy heart.

Mind you, I had a fabulous time (with a capital F) and learned a lot.

I also realized that I had strayed from my passions- the passions that led me to start this blog in the first place almost two years ago.  I have been working on shifting my focus back to sharing life from my heart with my readers.  (All my product reviews, giveaways, professional organizing advice, etc. will be on my professional organizing site starting March 1st.)

I blog about life.

Life as an adoptive mom of a child with severe emotional and behavioral issues, life as a mama of all boys, life as a mama of all tween/teen boys, life as a wife, life with multiple sclerosis and lupus, life as a former foster child, high school drop out turned teen mom who found Jesus and has never been the same since!

I blog about cutting through the clutter of life…the things that distract us from seeing and enjoying the life and purpose God has for us. When I speak at mom’s groups and women’s events, I usually am either sharing my testimony or sharing how to get control of your calendar, manage your time, set realistic goals and priorities and handle money the way God intended.

I’m glad you stopped by if you are here from Kelly’s Korner and invite you to read my About Me page and/or listen to my intro video to learn a little more about me and this here blog ‘o mine.

Expect the Unexpected

Today for Thankful Thursday, our host Lynne chose the theme of being thankful for the unexpected.

Ha! That could be the theme of my life so I decided to do a little time line post of how God took the unexpected (to me, not to Him) and worked it for good in my life.

• Time in foster care When I was a tween girl my family imploded.  The result was myself (and eventually my brothers) being removed from our home for a time.  While I am fortunate that my time in foster care  was not long term (about a year and then I went to live with my grandparents) I am thankful for it now.  It softened my heart and created a passion in me for orphans and foster children to have forever families.
• Teen pregnancy While it can be argued that pregnancy should not have surprised me, given my promiscuous lifestyle at the time, I was nonetheless shocked when I learned I was pregnant at 16.  Those of you that know the rest of the story know that being a teen mom is what led me to finding the redeeming grace of Jesus.  How can I not be thankful for that?
• Chronic Illness I certainly never imagined that diseases I cannot control would have such an impact on my life.  But, like only He can, God has used my inability to maintain my previous break-neck speed lifestyle to woo me back to His side.  I have such a feeling of purpose and peace that I didn’t know before I became ill.

I could go on and on about the way God has used unexpected trials to produce unlimited blessings and growth in my life.  And I am so thankful for every one!

Friendships and Relationships

“Friendship is born at that moment when one person says to another: “What! You, too? Thought I was the only one”.  C.S Lewis

I find myself very excited about a conference I am attending next week in Nashville, TN (but no, I am not thrilled to be going back to the scene of the eight hour truck stop nightmare that was our Christmas trip).

I look forward to learning ways to become a better writer and a better blogger.  But, even more exciting than that I am excited to hang out with my friends. (some of whom I have never met in real life)

Through my journey of leaving corporate America, starting my own small business, becoming chronically ill (amongst a myriad of family issues I won’t discuss on my blog) and agreeing to follow God’s call on my life; I grew apart from several of my (in real life) friends.

Sometimes, when you are going through something painful in your life (or a series of painful somethings as the case may be) you withdraw from those you love (or am I the only one that does that?)

Sometimes, you withdraw- not out of a feeling of embarrassment or weakness- but out of a deep desire to protect them from the ugliness that surrounds the issue(s) you are dealing with.

While I am eternally grateful for the IRL friends who have stuck it out with me over the last few years I am equally grateful for the friendships I have made through the internet.

Even my hubby didn’t “get” my “twittering” (as he calls it) and blogging for quite a while.  He didn’t understand why I was dropping everything to hit my knees for a baby I didn’t know, why I was “dragging” him to meet “total strangers” (whom he ended up adoring as much as I do), why I “do things for free” volunteer my time and skills to people needing help.

He got a glimpse of the “why” when he accompanied me to Las Vegas in October.  He attended one cocktail party, sponsored by Sitscation, and met incredible women that are just like me.  We still laugh about the fact that we were at a party and every woman had some sort of electronic device to Twitter and Whrrl with.

Here is the point of my long winded (and wordy) post: In my own strength I’m not that good at friendships (or relationships in general).  But my Heavenly Father knows me better than I know myself.  So He opened the door (or browser window) to some incredible connections that I get to nurture (and unwrap)  in just a few days.

Join us for more Tuesdays Unwrapped here.

Invisible Tuesday (on Wednesday)

Tune into MomTV today(Wednesday) at 1pm EST for the latest episode of The Invisibles.

Today’s show will focus on Optimism and Chronic Illness.

Here are some links I mention in the show, in case you weren’t able to catch them and the outline of what we will be discussing.

The Power of Attitude:

American Autoimmune Related Diseases Assoc.

Great book: Living Well with Autoimmune Disease

How to have a positive attitude:

• Educate yourself
• Take care of yourself
• Manage fatigue
• Enjoy yourself
• Maintain healthy relationships
• Mind over matter
• Expect bumps (fmaware.org)
• Stockpile fun distractions (fmaware.org)
• Find a hobby (helium)

Are you an optimist or pessimist quiz?  Lifescript

Remember that if you miss the live show, it is available for replay anytime!

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 hubby’s headache when everything on your body hurts. Don’t make it a “one up” type of situation.
• If you lash out in anger, forget something important, etc.- apologize.  Don’t apologize for your illness but for your behavior.
• Plan your day so that you are at your best when you are around your family.  If that means taking a nap before they get home, it is worth it.
• Don’t buy in to the lie of the Devil that you are a burden or problem to your family. They love you and need you.
• Reach out.  Don’t shut out.

For all my tips and thoughts on this subject watch the Invisibles tomorrow.

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 S for a good week.

Isn’t it somebody else’s turn to have some problems?

Why does so and so go through life with no worries and they aren’t even walking with the Lord?

Haven’t I proven myself faithful to You yet, Lord?

I didn’t want to feel that way and prayed that God would help me crawl out of my funk…and He is never One to let me down when I ask for direction.

Ironically (or not) it was the word’s in the book of Job that turned my attitude around:

What I feared has come upon me; what I dreaded has happened to me.  I have no peace, no quietness, I have no rest, but only turmoil. Job 3:25-26

Yup that is exactly where I was- keeping myself up at night with the “what-if’s”, the fear of the unknown, googling all the complications that can come from having two complicated autoimmune disorders…

Where were you when I laid the earth’s foundation?…have you ever given orders to the morning, or shown the dawn its place?…Who endowed the heart with wisdom or gave understanding to the mind? (from the book of Job)

Ouch! God reminded me through those verses and snippets of life experiences He has already brought me through, that I am gfocusing on the wrong thing.  I should not be focusing on the trial but the comforting promise that God already has it handled. This is no surprise to Him.

So, my answer to being thankful and having peace through difficult circumstances also comes from the book of Job (Job’s answer to God and mine too)

I know that you can do all things; no plan of yours can be thwarted. Job 42:2-3

I’m not worried.  I’m not mad.  I am thankful that I have a God carrying these burdens for me.  I just have to remember to give Him my burdens each time they rear their ugly heads.

Take me as I am?

I am excited that Mike and I are boarding a jet plane to Vegas on Thursday.  I am attending Sitscation, parts of Blog World Expo 2009 and meeting with some great companies.  Since Mike and I have always wanted to go to Vegas and haven’t been away alone in more than two years we are extending our trip and making it a getaway for the two of us as well.  That part, I am really looking forward to.

But, there is an ugly truth I have been forced to face in preparing for this trip.  One I don’t like facing and tend to hide from my friends (on-line and IRL) as much as I can.

The truth that I have multiple sclerosis and sometimes it has me.

I had a great time at BlogHer ‘09, meeting my online friends in real life, hanging with Jessica Smith, the Whrrl guy.  I didn’t really stop and give my illness a lot of thought.  At the same time, my illness wasn’t bothering me that much.

But the last few weeks, MS has been kicking my butt.  I’m having some type of autoimmune reaction to something (doctors are so helpful at narrowing things down).  I have been covered from head to toe in hives for, ahem, 16 days.  I have been hospitalized, am on my second full week of high dose steroids (which have blown my weight loss out of the water) and look like a sun burned blimp.

I am not a vain person.  That’s not what this is about.  But, there is something very vulnerable in not being able to put on the “I feel fine” mask amongst people.

It’s almost funny because two weeks ago I spoke at a woman’s event about being authentic in friendship, not hiding the truth about ourselves from others but allowing our friends to love and accept us for who we really are.

So, I guess that is what I’m asking for this weekend in Vegas.

Look past the cane, the wheelchair, the skin rash, the puffy cheeks, the legs I haven’t been able to shave in 16 days and just see me, okay?  MS does not define me, I’m just Melissa, Multi-Tasking Mama.

(my online/IRL friends pictured above are @scrappinmichele, @extraordmommy and @sugarjones, I’m cool like that =)

You need to have been there…

I was hesitant to write this post because it is about a very polarizing issue.  My opinion (and I acknowledge that is all it is) differs greatly from most of my friends and my readers.  However, my personal experience (which is what I am going to share) is relevant to the issue.  What is the issue, you ask?

HEALTH CARE REFORM

There I said it.  The three little words that incite anger, misinformation, partisan politics and even hate mail.  I’m taking my chances because I feel strongly that reform is necessary.  Why do I feel strongly enough to expose myself to critical (and that is putting it nicely) comments on my blog, losing readers and tarnishing relationships?  Because of my experiences- all I ask is that you take the time to read my story.  Agree, disagree- but a true dialogue, a true debate, true change can’t take place when people aren’t willing to listen.

• In 1999 my husband and I got custody of (and I adopted) his son, who had just turned six (an expensive process in and of itself).  Jason came to us from a very abusive home and had (and still has) severe emotional and behavioral issues as a result. We knew that he would need extensive counseling (little did we truly know) and my husband did not have health insurance available through his employer.  Jason went to a counselor two times a week for three years before we got insurance (I went to work full-time in 2002 when our youngest went to kindergarten).  For those three years, I worked nights cleaning at the race track, worked at a daycare (so the kids could come with me) and watched other people’s kiddos to afford those appointments.
• In 2001 (while we were still uninsured) I was diagnosed with cervical cancer.  The biopsies leading up to the diagnosis and the surgery required put us in debt to the tune of $25,ooo.  My husband worked as much overtime as he could and we made payments to anesthesiologists, the hospital, the doctor, the lab and every other possible medical entity known to man for years.  As a matter of fact in 2007, we still had a $1,500 balance with surgeon and she sent me a letter that since I had so faithfully made payments she was forgiving the rest of our debt!  What a blessing-  We had been paying her monthly for almost seven years.  While friends were driving cars that didn’t break down and living in houses with more than one bathroom, every “extra” penny we made was going to medical bills.
• In 2003, Jason’s behavior deteriorated beyond what could be managed on an out-patient basis.  We now had health insurance through my employer but mental health benefits leave SO MUCH to be desired.  Between February 2003 and November 2004 Jason would be admitted as a psychiatric inpatient three times (twice in Towson, MD, an hour and a half away from our home) and would be in numerous partial hospitalization programs.  In 2004 our OOP (out of pocket) medical expenses for his care were in excess of $17,000 WITH INSURANCE.  Can you imagine what we would have been facing if my employer did not offer a health benefit (that I paid $124/every two weeks for as well)?
• Then (mind you this is the very abbreviated version) a judge ordered Jason to be remanded to a residential treatment facility to the tune of $60,000/year.  Do you know how much our insurance company authorized for that? ZERO, ZILCH, NADA. Know why?  Because Jason had exceeded his mental health benefit (he was 11).  His dad and I had to make the gut wrenching choice to sign physical custody of him to the state of West Virginia so that he could get the treatment he needed.  (That was the only way he could be covered by Medicaid, to not be in our custody)  You can never know what that was like if you have not experienced it.
• You would think our story would be over by then but no.  I was diagnosed with multiple sclerosis in January of 2008.  My hubby has great insurance through his employer now but our 20% of my EXORBITANT drug costs, hospitalizations, IV treatments, physical therapy and co-pays to the general practitioner, MS specialist, neuropsychiatrist (yes, all of this has left me a little depressed), urologist, hematologist, cardiologist, pulmonologist and pretty much every other “ologist” known to man came to over $13,000 in 2008 (and I can no longer work full time).

Don’t get me wrong, God has provided for us time and time again.  I am constantly amazed, looking at the $ amount going out compared to coming in, how we are not bankrupt.  We haven’t lost our home, our vehicles, or our sanity.  But we are fortunate.  So many people have.  People that didn’t deserve to have to choose between their medicine and groceries.  People that shouldn’t have to wonder if they should see a doctor or not, because they can’t afford it.

So, what are you saying, Melissa?  I am saying that reform is necessary, whether we like it or not.  Both Presidential candidates agreed on that in the last election. Yes, I have read the 1000+ pages of the proposed bill, and while I do not agree with every thing in it, I am glad that the President has the courage to introduce it.  Because it is necessary!

The bill (and the Baucus bill) are not in final form.  Yet still, there are some gross misrepresentations being made and fear mongering to distract people from the real issue.  REFORM IS NECESSARY.

Death panels? Not even going there.  Socialism?  Give me a break.

Accessibility-   please!  Affordability-  please!  Ability to have options-  please!  Eliminate pre-existing condition clauses-  pretty, pretty please!  Not have to worry about the cost of being sick for the rest of my life-  I can’t even imagine.

I urge you to educate yourself about reform, listen to those of us who truly know what it means to have medical expenses take over your life and stop the partisan rhetoric.  For me…for all those out there like me and those much worse off….just listen!

Fitness and Invisible Illness

So, if you don’t know that this is National Invisible Chronic Illness Awareness week then you have been hiding under a rock (or not reading my blog on a regular basis).  Each day this week (that I have posted) I have been talking about living with chronic illness.  Today, I wanted to talk about fitness and chronic illness- how they work together and how they don’t.

Most of my loyal readers know that I applied to be the first Mamavation mom.  I didn’t win the contest but I did gain the motivation I needed (or kick in the butt as it may be) that I needed to start on my personal weight loss journey.  I have lost 10 lbs. since I made that video in late July!  I am down two pants sizes and my endurance has really increased.

Where I am having trouble is this: stagnation.  For the last week and a half, I have not lost a pound, not even a half a darn pound.  I haven’t gained anything back but it gets depressing to see the number on the scale look stuck when you want it to not be stuck yet, you know what I’m sayin’?

Could this be blamed on the fact that I eat my weight in chocolate when I am on my period (which was last week and sorry for the TMI)?  Possibly.  Could it be that I have gained muscle from the GINORMOUS amount of exercise I have been performing compared to before I started this journey?  Possibly.  But there is a little gnawing voice in the back of my head saying “Is this all you’ve got”?

Anybody know how to make that stop?

Anyways, back to chronic illness.  I have to stay cool when I exercise, be careful not to push myself too far (with neurological weakness it can take a while to “feel the burn” so to speak) but other than that my doctor’s have not limited my physical activity in any way.  In fact they have encouraged me to engage in exercise, particularly Pilates and yoga type exercises which strengthen your core.

I am going to keep being healthy (except for my monthly chocolate gorge fest) and exercising.  Will you please join me in prayer that the darn number on the scale will keep up it’s end of the bargain and diminish each week?  Thanks!

Invisible Illness Linky Love

I am enjoying this week of awareness for chronic and invisible illnesses.  I am coming across so many awesome bloggers and fellow chronic illness livers (I hate the word sufferer, FYI) that I have added to my blogroll (and some of which I have invited to be on my MomTV show, hmm, mmm.)  So, I shared some of these fabulous peeps on The Invisibles today and some I have mentioned on Twitter.  But, I wanted a spot where all the info was in once place so here you go

Melanie Melanie blogs about her journey and participated in the 30 Things meme as well and I particularly connected with her answer to question #4.  The biggest adjustment is: “adjusting to a very different brain- I can’t think, learn or remember like I used to”. Couldn’t have said it better myself, Melanie.

Miss Diagnosis First of all, what a hilarious name for yourself.  Ingenious, as a matter of fact.  She blogs at Faith is Fragile which is also a beautiful title.  I related to her answer to #5 on the 30 Things meme.  Most people assume: “I’m lazy or just enjoy sleeping a lot”. I saw this a lot when hopping the 30 Things posts and it irritates me too.

Kristen blogs about living with Lyme disease, that was just recently diagnosed.  Her #22 struck a deep chord with me.  My illness has taught me that: “just because you don’t see something doesn’t mean it’s not there.”  I hate how many people feel invalidated during the process of waiting to be diagnosed!

Selena She talked about something in a way I had never considered before, but found to be so true.  In addressing question #14, Selena opened my eyes to the reason behind a phenomenon I couldn’t explain before.  People would be surprised to know that: “socializing with family and friends is more difficult for me now”.  It is for me too and I didn’t understand why.  Selena goes into more depth about it so visit her blog for the answer.

Annabeth Again I really connected with something that this blogger said in her answer to #18. Something I miss: “the desire to be physically active”. I so get this!  I used to enjoy riding bikes on the canal with Mike and the boys, I used to look forward to a good workout.  I don’t anymore.  The desire is literally gone.

Each one of these ladies helped me feel less alone!  And that is the point of this week and of my show and part of why I get up in the morning.  We are not alone!  Praise the Lord for that!

In closing, this post made me cry.  So, grab some tissues.

Be blessed,

Melissa

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