Wow! Long time no blog!

Has it really been 3 years since my last blog post? I sincerely apologize! So much has been going on and so much has changed and yet my RSD/CRPS stays in play. This year I turned 40 years old. This month my RSD/CRPS has turned 23 years long. At this moment I am sitting in my chair, my leg propped up on my ottoman with a pillow under the knee to help support during this summer time flare up.

I have been thinking about my long lost blog for the past few months. Wondering if I should resurrect it and if so what direction I wanted to take it in. Let’s face it. I got tired about blogging about how hard the struggle is to live a life with chronic pain without the recognition of the pain and trying to not let it over take my life. Also blogging about my kids may be a joy for me but as they get older it may be a source of embarrassment for them. What direction do I want to take my blog into?

RSD/CRPS will always be a part of my life. That’s a fact proven by 23 years. It is not my whole life. I am a wife and a mother. I love reading and writing. I am addicted to watching tv and movies. I love fashion but I have a limited budget. I am always cooking. I have a beginners green thumb. I am a moderate healthy eater. Why not blog about all these aspects of my life? We are all unique with our personal struggles but we cannot let them stop us from living our lives, we just change how we live to accommodate these struggles.

That is my plan. To get it all started I am going to blog about our family vacation, destination Uruguay! I plan on giving you a day by day review of our trip beginning with the planning and organization of the trip, the 14 hour flight, the hotel Vivaldi, the activities and the food! So much food!

I hope this sounds like something you are interested in! This is my new take on Life with RSD!

20 years and going strong

Wow!  I cannot believe it has been twenty years, two full decades, that I have been in this fight against RSD.  Do we say Happy Anniversay?  It doesn't  seem fitting to celebrate  this milestone, does it?  Oh but it does!  In those first few years I was a simple survivor grieving  for the life I lost.  Slowly I learned how to fight back and become the warrior I am today.  I no longer grieve the life that was or could have been because, let's face it, living with this disease has been more than half my life.  I don't  know if I will ever go into a full remission but I won't  give up.  I have come too far and have lived through too much!

 Twenty years is a long time.  Through these two decades I have had 100 epidural blocks, with 2 week long catheterizations, a spinal cord stimulator implant at age 21 with 6 revisions, and I have been on numerous  medications.
During the past twenty years I graduated high school and despite the fact that I had to medically withdrawal  from college I was able to work after my spinal cord stimulator surgery.  I met a wonderful man and together we built a beautiful family.  7 years ago I had to stop working because of my health and I was approved for Social Security Disability.  I also had to stop driving at the same time, I still have my license, this was a decision I made based on safety.

In the last twenty years I have witnessed a huge change in the medical industry.  Back when I was first diagnosed you couldn't  find any information  about Reflex Sympathetic Dystrophy which made it difficult  to be taken seriously about the level of pain I was in as people challenged the legitimacy of my health disorder!  The medical community was in the early learning  stages, a doctor confided to me that RSD was a two line paragraph  in his education and that the only way to learn was by finding a good doctor who was treating patients.  Normally  this wouldn't  inspire confidence but we were in a teaching hospital and I was basically  a kid!!!  Even my neuro stimulator has been receiving a constant  evolution.  I feel like each surgery they have something  new to introduce  to me!  Well, actually  I am always researching to stay on top of all the latest information  and advances being made.  After all it was only a year or two after my diagnosis that they made the name change to Complex Regional Pain Disorder and then shortly after that they named a type one and type two, all of this because it better defines the disorder for the medical community.  Remember the first name was not RSD but Causalgia.

Twenty years, two decades, is a long time to fight a major health issue.  I plan to keep up the fight for many more decades praying that one day we will find a cure!

May 14 Apraxia Awareness Day

Ok first I am asking you to bear with me as I try not to cry.  After all this is my baby we are talking about!

Lucas is a beautiful, sweet, mischievous, extremely active little boy who loves the color pink and bad guys!  It is funny that I want to say "words cannot describe" because that is exactly what his Apraxia is all about, finding his words...his voice!  If you have ever had a child you know that shortly after their first birthday you begin looking forward to their babbling changing into Mama, Dada, and Baba.  It is one of those miraculous and sweet memories families share as they bet on which will be the first word.  Lucas did not babble.  He coo'd but those sweet constants never came through.  Lucas would also scream all day at me.  By 18 months I was worried and by 21 months I called my doctor who had me call Early Intervention Services to have him evaluated.  By 23 months old he began services and still had no words.  Lucas qualified for speech and developmental services.  Those beautiful women became my coaches.  

Fast forward to today!  Lucas is 5 years old!  He fights past his Apraxia to make sure he is understood.  If you don't understand him the first, second or third time he will use a variety of resources to help him.  He uses basic signs, gestures, or contextual clues.  My boy has a Warriors Spirit!  Giving Lucas his voice is a family effort.  Before Lucas had words we taught him sign language.  Gabriel would look through the book to learn new signs to teach to all of us.  He is an awesome big brother!  I remember the days that Leo and I would listen to Lucas, quietly counting out how many words he was able to string together...well, approximations of words but we didn't care because we were hearing our little boy talk!  

Lucas even loves hearing himself talk.  If you follow me on facebook you probably have seen one of the video's I post.  These video's have served to remind me just how far he has come.  Battling Apraxia means you aim for an inch not a mile.  Sometimes you can progress two inches just to fall back three.  That is when the video's come in handy.  

Apraxia Awareness is a way of life for us.  Leo and I don't excuse Lucas' speech to everyone by explaining that he has a speech disorder called Apraxia.  Why would we?  We are so proud of his accomplishments!  When we go out to eat Lucas will order his own drink, if he is not understood we simply tell the waiter what he wants.  We never discourage Lucas' speech attempts.  

May 14th is Apraxia Awareness Day.  

Spring time flare day #11

The long Winter is over and we should be enjoying this beautiful Spring.  I should, but a long flare has settled in as if it is taking a Winters Nap.  During these long flares it is easy to 'get down' and be hard on yourself.  After all no one likes walking in to a kitchen with dishes piled on each other and doing an emergency load of laundry because the kids are out of underwear!  Reading newsfeeds of friends planning activities that you simply cannot do or being able to walk your child down the block to play at the park can make you feel depressed.  Most people get cabin fever if they spend more than two days cooped up inside without being able to do anything yet I have to be used to days piled on days that turn into weeks!  I honestly feel like a child who wants to stomp her foot and scream "It's not fair!"

I am going to make a confession.  This past Winter was a hard season on my leg.  Harder than normal.  We all know it was the coldest Winter, ever!  So many people kept me in their thoughts and prayers because they know how the cold affects my disease.  I am so grateful for their prayers!  Still, it looks like 2015 is going to be a hard year.  It happens.  I have had RSD/CRPS for nearly 20 years and I have learned that there are bad years and good years and years that completely suck.

Years of experience have taught me how to prepare for these hard times.  Allowing myself time to wallow in self pity but never live in that deep abyss.  Laughing with my family and filling my free time with my favorite hobbies.  I have my tv shows and books.  I spend time on facebook and games on the computer.  I text Leo a dozen times a day, sometimes it is as trivial as a simple "I love you!" just so I can stay connected.  I text or email my bestie anywhere between a few times a week to several times.  I comment on facebook posts.  I do whatever I can to stay connected so these walls won't close in on me.  My days revolve around my children.  I hate that during flares I have to parent them while I am stuck in my LazyBoy recliner or worse yet bedside.  At least I do it!  At the very least I give them the feeling that I am always "there" for them.  I am proud how I parent them.

If this is going to be one of those harder years I know I will survive it.  A hard year won't beat me down.  I have too much experience to allow it.  I have Leo in my corner.  The man is a blessing.  Today he bought me white roses.  Last weekend my parents came over and Mom helped me with the kitchen and groceries.  Unfortunately I had to miss out on a friends birthday celebration and kids birthday party.  Life would be perfect if everything could be done at my house or locally to me but that is not real life.

If this is going to be one of those harder years I do have a favor to ask.  While you are living your busy and crazy life take some time to appreciate your own physical health.  At the end of a day that leaves you particularly exhausted, instead of complaining that you are tired take time to evaluate what you have accomplished that day.  Don't jump over the basics like getting the kids dressed or giving them baths or driving somewhere.  Truly evaluate your accomplishment and give thanks to God that you had the ability to do it all.  If you are training for a marathon or one of those fun obstacles like Mud Run be thankful that you are able to do it.  What I really wish is that you be thoughtful and thankful for the healthful life you have to live.  I don't care that I might have a hard year ahead of me.  This is my life.  Every night when I put Lucas to bed we say his night time prayers and give thanks for the day and people in our lives.  It is so beautiful to listen to him being thankful for his life, yes he fights for his speech but that doesn't matter.  He has a beautiful life to be thankful for!  Just as I have a beautiful life to be thankful for despite my health.  Please be appreciative of your own life!  

Invisible Disease

Living with an invisible disease is hard as many of you know.  I have always talked about support systems and their importance in our lives.  See, the trick about an invisible disease is that the person begins to feel invisible as their disease takes over their life.  You cannot see their pain and you begin to loose sight of the person.  Soon everything about the person becomes erased, or at least it feels that way.  Especially when the person with the invisible disease stops being able to socialize with their friends as they once where.  Human nature tells us that our friends are people who share mutual interests.  Take those interests away and the relationships become strained.  When a relationship becomes strained we back off and away for many reasons but ultimately that relationship was only built on a common tie that has been broken.  Guilt may push the relationship forward even though it probably would have faded away in time despite the illness.

As someone living with an invisible disease I have learned how to cope with the heartbreak of friendships that cannot survive the illness.  I was young when this journey began.  I have also enjoyed many real relationships that have survived not just the test of time but my illness.  Family and Friends have learned to come to me majority of the time.  If they want to do something with me they understand it has to be within the boundaries of what I am capable of doing.  It is hard work being my friend!  I guess that is why I cherish the few outstanding people who are capable of making it work.

I hate being asked casually "How are you feeling?"  The proper response will always be "I'm okay."  If you know me well enough you can find the signs that I am not feeling well.  I will have make up on, my hair done and a big smile on my face.  I will laugh and tickle the kids giving everyone a big hug.  I have been told the difference is in my eyes and how my body moves.  Honestly, this is just ME.  I cannot go through life letting pain get in the way.  I cannot raise my children allowing them to see their Mommy struggle with pain.  They see the pain.  The pain is very real and they know it is there but they do not need to see Mommy in pain.  I will not give in to the pain.  Pain is a part of my life but that doesn't mean I have to let it be my life.  Contrary to this fact is the reality that the pain has created boundaries for me to live within.  At times I will push those boundaries but doing so poses consequences.  Leo and I have learned that when I push my boundaries I can be laid up with pain for days.  God Bless the Man because he helps me decide which boundaries I can push and then deals with the consequences with me.

Today I am sitting on my lazy boy recliner with my thick thermal socks, sweatpants, tshirt and a warm blanket on but my right foot is still cold.  I have my stimulator on and my leg hurts.  I am only slightly limping and I admit that my pain is better than it was yesterday.  Yet, here I am sitting in the living room resting my leg hoping it that tomorrow will be better so I can do "stuff" with my family.  I can use a cane to help me walk but I would prefer to not use it.  I can push the boundaries but do I want to?  If there is anything I want you to understand it is this.  It can be tough deciding when to push the boundaries because I know what the fall back will be so the question becomes 'Is this worth the ensuing pain?'

Leo and I both hate using my pain as an excuse.  This is not exactly appropriate dinner conversation when we go out with family and friends.  We realize that most of the people who are close to our inner circle still do not have a full understanding about my pain.  Is the disease in my back?  Is it in my leg?  What the heck is wrong with Marti Ann!  I find it funny that I have known some of these people for over a decade and consider them an extension of our family but they honestly do not know what RSD/CRPS is let alone the pain that I go through.  I know it's not their fault because I don't display my pain for the world to see.  However it does mean a lot to me when family and friends do educate themselves and show their support.  Several months ago a family member mailed me an orange scarf just because she thought of me when she saw it.  I cried when I opened that package.  It was the color of the scarf that made me cry, the color for RSD/CRPS Awareness.  Knowing that I have this relative miles away who sees the color orange and thinks of me because she knows that the color has a huge meaning.  I have never sat down with her and said "So this is what I have and this is how it affects me."  She has taken it upon herself to read my blogs and learn about my disease.  Because she loves me.  I know there are others who love me and maybe they read a few blogs but basically their lives are full, too busy to really take the time to do much more.  I love their efforts.  I value any and all efforts, big and small, because I know I don't make it easy.  As much as my pain has developed my life I still do not let it define my life.

Invisible.  It is always so hard when you are trying to fight for awareness but want to still be seen as a regular person.  Wanting to be seen as a regular person but wanting people understand that I am fighting a battle.  Fighting a battle but not wanting anyone to see the battle scars.  Leo and I have also learned that my disease is having a great impact on Gabriel's life so we have to become better at hiding the pain while teaching Gabe that I am and will be okay.  My invisible disease gives me great pain but it affects my whole family.  Leo has so much love and strength for me while he secretly fears the unknown.  We raise the boys as if it is normal to have a Mommy in pain but Gabriel has reached an age where he worries, fears and sees more than we think and imagines possibilities that aren't applicable.  As a family we might act like RSD/CRPS is a minor footnote of our lives but in the privacy of our home it often takes center stage.  Like today, with my leg elevated in my lazy boy recliner.

Christine Miserandino had the moment of inspiration when she developed "The Spoon Theory" as a way to explain her invisible disease to someone she thought already understood.  That theory has proven to be universal.  It takes a concept and makes it tangible and ordinary like a spoon.  It has helped me explain my own boundaries.  If everyone is given a certain amount of spoons in a day  (spoons equaling physical ability) the Spoon Theory shows how a person with an invisible disease goes through their spoons.  Little daily activities that most people take for granted cost someone who lives with daily chronic pain where someone who is healthy hasn't even registered the cost.  I have tried to make the spoon theory to work in isolation, it doesn't.  It has to be done in comparison to a healthy person's life.  I hate that!  I don't want to compare lives!  My pain might be considerable but it has also provided me a journey that has led to so many rewards.  I found my husband because of this journey!  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/  Check out the spoon theory!

By blogging I have been trying to make my pain less invisible while walking the line that doesn't allow this pain to define my life.  Such an awkward balancing act!  In the case of my children I feel like it is best to keep the disease invisible until they are mature enough to comprehend the real diagnosis and understand that Mommy continues to fight a battle and she is still standing!  With my family and friends I want my disease more visible.  I want people to see me and the battle I fight because whether I like it or not this pain has been a part of my life for almost 20 years and counting.  I have faith that the more I blog about it the more people will begin to understand the life my family and I live.  I pray one day RSD/CRPS will be a largely known medical term so more people don't have to worry about needing to explain what they have and then the ensuing isolating feeling when people have a level of disbelief that someone could be in that much pain daily.

Prayers needed for support

I know it has been a few months since I last wrote anything in this blog.  Winter has been rough.  I know the few people who actually read my blog understand why I have been silent.  I thank you for your support and prayers!

A few weeks ago Leo gave me some heart breaking news.  A woman he had put me into contact with about 5 years ago had passed away from an apparent drug overdose.  At first it was believed to be unintentional but then it was discovered that she had committed suicide.  She had RSD/CRPS.  Besides living with this intractable pain she also had to cope with a failing marriage and the lack of support from her teenaged children.  I know I did my best to talk to her, give her what information I could and simply be an ear for her to when she needed it.  We did not talk often.  From her I learned that too many people just do not have the access to information that could make a difference in their treatment plans.  Not all doctors take the time to sit and just TALK to their patients about what to expect from this diagnosis.  I have said it repeatedly that a support system is critical to our health.  I tried to point her into the directions of different support groups as she vented about how she did not receive any type of support or understanding from her husband.  She constantly compared her husband to mine telling me how lucky I am to have Leo's support.  Yes, I am eternally grateful for my husband, my love, my friend, my soulmate, my partner.  I admitted to her that even Leo had to learn and figure out the severity of this disorder and that he married me knowing about it.  I can only imagine how much different it could be if this pain came on in the middle of our marriage and changed all the rules, changed me as a person!

There is no avoiding it.  RSD/CRPS changes a person.  Many of us feel like it is a type of death, moving from one life to another.  You really do lose a piece of yourself.  Imagine how you would describe yourself.  Active?  Athletic?  Type A personality always on the go and cannot sit still for longer than a two hour movie?  Now give yourself a pain, a disorder that takes all of that away from you.  It is not that you have lost two years of your life.  You are forever changed and need to battle for the limited functionality you are left with!  For me, it is a little different.  I was just 17 years old,  not even an adult.  I was never an athletic type of person but I was always on the move.  My group of friends would spend the weekends roller skating and at the mall.  As they grew older the roller rink moved over for dancing at the clubs.  With my pain I had to give up the roller rink and the pounding music at the clubs caused pain even if I was simply sitting around, hanging out with my friends.  Forget about walking around the mall!  I lost myself in those first years.  My time was spent traveling to the city for treatments, recovery and then waiting for the pain to return.  My life shifted.  I had nothing in common with my friends I had known since elementary school and most of them shied away from the basic comfort of hanging out on the sofa watching tv with me because it scared them to see me that way.  I know I have written about this before but I can only imagine how much more difficult it could be on a marriage when the whole of a person, what you share in common and what you loved about the person, suddenly changes.  Add in the financial aspect of being sick, medical bills and a decreased income.  Division of household labor, lets face it if you are in too much pain to go to work chances are you struggle to keep up with basic household chores. Too many marriages break apart for much less!  I know the first few surgeries Leo has seen me through put him on trial to see just how strong HE could be to support me during a debilitating experience.  He definitely stumbled a few times before he found his balance!  Now?  I think we have gone through this enough times that we have our own rhythm.  Our life is far from ideal.  Our house is barely ever perfect.  We have our bad days when the whole of it becomes overwhelming.  Ultimately we know we are in this battle together and I never take him for granted!  I know we are lucky!  I am lucky!

Being on facebook I have reached out to many people with RSD/CRPS and various groups regarding this disorder.  I have been a member of various support groups and I have been fortunate enough to find one that feels like family.  What is incredibly heartbreaking is that I have heard too many stories of people losing their fight with RSD/CRPS.  Either accidental or intentional drug overdoses to escape their pain.  I do not judge them!  What I do believe is that if these people had a better support system then they probably would not be put into the situation.  There is strength in knowing that you can lean on someone's shoulder, have their ear, help with basic needs such as meals or errands, and most importantly someone's time to make you feel like a human being.  Sitting at the kitchen table chatting, a short drive to get a bite to eat or maybe to watch a movie.  Sedentary activities that allow for a meaningful interaction that help fill a void.  Personally my sister and my best friend both live far away for any type of regular quality time.  So, when we can we text and email (my bestie) or we chat for hours on the phone or facetime (my sister).  I have my family, my husband and children, my parents and sister, Leo's family which is my own, I have a few friends and I have some extended family members who rally around me with love and support.  Just a few months ago I received a package from an Aunt with a card and a scarf the color of orange that she felt she just had to buy for me because Orange is the color of our Awareness.  It sounds so simple but it has so much meaning and yet it is so difficult for many other friends or family.  When we have time to plan and prepare we do like to spend a day out and about, just at a slower pace and doing activities that accommodate my abilities.  I find all of these small efforts as valuable treasures that I hold close to my heart.

Recently, a new friend who is just a few decades older than me (like 4-5 decades but she seems like she is only 2-3decades older) has begun picking me up for choir practice and home again.  That interaction is something I look forward to each week.  The car ride with her, singing in the choir, choir practices, I have made some new friends doing something I enjoy.  But if it wasn't for my friend helping me get to and from practice I couldn't have been able to join the choir.  I never feel like I am inconveniencing her even though she has to drive out of her way to pick me up and take me home!  Anyone who is able to step up in even the smallest format to give me a hand is a friend that I value.

I ask that you all take a moment to pray for my friend Loretta Tirone who lost her battle with RSD/CRPS.  Please say a prayer for all those who suffer with RSD/CRPS that they should find a support system so they will not have to feel like they are alone in their battle.  Pray for those who are the support system so they can keep their own strength to help their loved one continue this life long battle.  More than just prayers I ask that you find at least one person in your life and give them some comfort, unconditional love, your valuable time and effort so that their own spirit can be renewed, that they know they are not alone in their battle.  You could make the difference in someone's life.

Gabriel and my RSD

A large part of my constant Mommy Guilt stems from how my RSD affects my childrens lives.  I brought them into this world with the full knowledge of my health condition.  Every time I have a flare up or surgery I am overwhelmed with guilt knowing all the "things" I cannot do for them.  Yes, this is their normal so they never knew any other type of Mommy.  Still, the knowledge of how my RSD stops me from doing a lot of Mommy stuff with them haunts me.

A few years ago we sat Gabriel down to give him a better understanding of my RSD.  It was a conversation harder than you can ever imagine, harder than "the sex talk".  Before the conversation he only knew my pain by "Boo Boo Leg".  Gabriel has always had me high up on a pedestal but he was getting old enough to understand that his Mommy wasn't the typical Mommy.  Gabriel is also blessed with a strong and overactive imagination.  We needed to have the talk because his imagination was taking him places about my boo boo leg that needed to be set straight.

I don't remember exactly how I started the conversation.  Leo was with me and I could see the tears in his eyes even though he would not let them spill over.  I know I first listened to Gabriels fears.  Leo talked to him a little while I gathered my own strength, it was like one of my worst fears coming to life.  My little boy admitted he was scared that he would lose me.  Somewhere during the conversation in my heart I know God gave me the inspiration to find the right words to help Gabriel learn about my pain and be okay with it.

RSD stands for a Really Stupid Disease.  Gabriel had such a strong hatred over my pain.  Not at me, he hated the actual disease.  So I gave him the chance to vocalize his anger by allowing him to say the word Stupid.  It also became a funny thing because it is the only way he is allowed to use that word!  Stupid is a mean word that I do not allow my children to say because it could be hurtful.  Stupid is a perfect word to be associated with my pain.

Last year I told Gabriel about November being National RSD/CRPS Awareness Month.  Well, last night as we all sat on the couch exhausted from Halloween I started a conversation about the fact that tomorrow is November first.  Gabriel interrupted me to say "That means it is RSD Awareness Month."  I asked him how he knew that.  Leo said "He must of overheard you talking about it."  Gabriel said "No, I just remember you telling me last year."  God, how can I not feel blessed with having this sweet Angel in my life?!  Later after Leo went to bed Gabriel and I stayed up to finish watching a movie together.  We chatted for a bit after the movie and decided to cuddle a little longer on the couch watching more tv.  At 12:01, when I said it is time for bed, Gabriel announced "It is officially RSD Awareness Month."  Of course I squeezed him with a dozen kisses or so.  But when we woke up this morning and I was still in bed, trying desperately to get some more sleep, I called him over to me to get a kiss.  What I got instead was a "Happy RSD Awareness Month Mommy!"  and then I got my morning kiss!

It is a big deal that we have a whole month designated to raise awareness.  I remember the first time I read about it I cried.  You see, I have adapted a process where I research RSD/CRPS every few months.  Being diagnosed before having information readily available means that I have always been on the lookout for anything I could read about it.  I always have a little pride whenever I see something new posted.  I always cry tears of triumph when RSD makes it into the news or better yet on a talk show!  It is my belief that this disease should be as well known as Diabetes, MLS, ALS, and Cancer.  The fact that it is rated as the most painful condition known to man on the McGill Pain Scale, more painful than childbirth and cancer, should give people reason enough to learn about it.  The fact that it could happen to anyone at any time yet it is only diagnosed after every other possible condition has been overruled is yet another reason we need more research.  Added to all of that is the fact that our men and women in the military are coming home from war struggling with this disease when they could have been helped if we had the foresight to strengthen our research and awareness a dozen years ago!  Yes I care about awareness because it is a disease I have lived with since I was 17 years old but I also believe no one should have to go through this pain.  Yet, often enough we are told that it is all in our head, imagined or faked, before we find a doctor who is knowledgeable enough to diagnosis the pain and then often times it is too late for the treatments to give us complete remission of the pain.  Those first three months of pain is the critical time period where treatment could possible give remission.  RSD/CRPS needs to become a household name if we are ever going to help future people find remission.  It needs to be a household name so that the people who are living with the pain can feel less alone in their fight.  RSD/CRPS Awareness Month gives us that hope!  Gabriel dreams of a future where his Mommy doesn't have to be in pain ever again.  Can you help him realize that dream?

Happy RSD/CRPS Awareness Month to all my fellow RSD'ers!!!

Go ORANGE in November

November is RSD/CRPS Awareness Month.

  During November most people start thinking about what they are Thankful for and how they can show their Thanks because of Thanksgiving.  I think it is great that we share our Awareness Month with a time of Thanksgiving.  RSD/CRPS can take so much away from us but I am overwhelmed with thankfulness that we are slowly growing recognition regarding our painful disorder.  I have said it before ... I remember back in the beginning when RSD was barely a 3 sentence paragraph in my doctors medical school training.  The only source of information yielded from an internet search was RSDHope founded by the Orsini Family in support of their son Keith who was fighting a battle with RSD and for everyone else diagnosed with this painful disorder.  Now?  Today I Googled RSD/CRPS and received 536,000 results!  When I check on the News link these were the top three stories I was treated to!

October 24,2014 5K to raise funds for RSD  http://www.charlotteobserver.com/2014/10/25/5256922/5k-to-raise-funds-for-rsd.html#.VFJAOvl4p20
September 29, 2014 Teen organizes walk to bring attention to RSD
http://www.lockportjournal.com/news/local_news/article_7b3e5f50-26ca-59ec-ad8a-c0567bd8b27c.html
September 25, 2014 Community rallies around teen with chronic pain condition
http://www.wmcactionnews5.com/story/26628657/community-rallies-around-teen-with-chronic-pain-condition

We have even had segments on some great tv shows!
The Doctors TV http://www.thedoctorstv.com/articles/912-one-woman-s-battle-against-chronic-pain
Dr Oz http://www.doctoroz.com/episode/paula-abduls-shocking-health-confession
Dr Oz http://www.doctoroz.com/article/faq-reflex-sympathetic-dystrophy
http://www.insideedition.com/videos/2020-doctor-explains-mysterious-crps-condition

Even Pepsi has helped us raise awareness with a campaign (unfortunately only in Colorado at the moment).  http://www.rmrsd.org/

What can you do to help?  Go ORANGE!  Post a picture of yourself wearing something ORANGE with the hashtag #CRPSORANGEDAY on November 3 (or any day of November!)  If you want to do more please feel free to visit these sites.
http://www.rsds.org     http://www.rsdawareness.com/     http://www.rsdhope.org/     http://www.rsdfoundation.org/    

Want to buy something to show your support?!  http://www.zazzle.com/rsd+crps+gifts?q=rsd%2fcrps     http://www.cafepress.com/+rsd-crps+gifts     https://www.etsy.com/search?q=RSD%2FCRPS     http://teespring.com/#q=RSD%2FCRPS&p=1

However you decide to participate in RSD/CRPS Awareness month please take one minute to reach out to the person YOU know with RSD/CRPS to tell them "Happy Awareness Month!"  It is a simple way to make a difference in one persons life.  

Learning to fight ...

Most people comment about my strength, how well I handle my RSD.  I wasn't always this strong.  There are many days when I just don't have the strength to do more than the bare minimum.  There are times when I feel that darkness closing in around me and that is the moment where I stand back up to defend myself.  I know what it feels like to succumb to that darkness.  It is not a place I would like to visit again.  

What keeps me strong enough to stay away from the darkness?  Despite the despair of pain I appreciate the amazing family that surrounds me.  I feel their love and support.  More than that I know in my heart that they deserve the best I have to offer.  Sure, there are times that my best falls short.  I live with my guilt that I can never give them what I believe they deserve but that will not stop me from trying my best.  

Unfortunately too many people with RSD struggle with finding their strength to fight, to stay out of the darkness.  I have said it before and will say it again, the key to fighting RSD is a strong support system.  Love is a powerful four letter word.  When it is given unconditionally a pain sufferer can find their strength to fight back.  If you know someone who has RSD please take some time from your own busy schedule to provide some sort of support.  You could give any type of help.  An ear to listen, a hand in doing dishes, time out of the house to help against the sense of isolation.  A home cooked dinner, offering to take the kids to a function, a little text to check in if you haven't heard from them in a while.  There are many ways to help depending on your level of relationship with the RSD'er.  What is most important is that you remember that this is not a short term illness but a lifetime journey.  What I mean is, if you haven't specifically given support to your loved one in a few years then maybe you could step up your game?  Their battle doesn't end just because you once went out of your way  two years ago.  Too often people who suffer with chronic pain feel like they are unable to open up because quite frankly no one wants to talk about something so depressing.  We need to open up but we don't want to be your buzz kill.  So, let us know you are thinking of us!  Start the conversation or better yet include us in something.  Nothing says "I support you" better than planning your next evening out around your friends disabilities.  You will be amazed how your show of support will renew your loved ones ability to fight their battle.  

My will to fight also gains strength from finding purpose.  Being disabled from work can be very self defeating.  One day you are healthy and active then the next day finds you unable to do the things you love, things that you took for granted.  I have often had conversations with people who are basically healthy complain about how hard it was on them when they had to stay in bed for a few days or weeks due to an acute injury.  They talk about how hard it was on them to not be able to take care of themselves, to rely on others, to loose their ability of simple tasks, and then of course how they would go out of their mind if they were not able to do their favorite physical activity!  Yes!  I get it!  Exercise is proven to lift endorphin's which improves mood and outlook on life.  It is almost impossible to exercise with RSD/CRPS, depending on the part of the body afflicted with this disorder.  I have great memories of spending my weekends roller skating and riding bikes but those are both activities that I just cannot do anymore.  It can be depressing thinking of all the fun things you used to be able to do.  That is why it is important to find sedentary activities to occupy your time.  Many RSD'ers find a great mental escape through the internet with the added bonus of finding a support group online.  I like books, watching movies, playing games that strengthen the mind, and writing in my blog.  My personal favorite is doing activities with my kids!  Still, when my pain is flaring I tend to stay either in my bed or on the couch avoiding most activities.  This is the time that my mood gets a much needed boost by the most simple things in life.  My childrens laughter, my husbands kisses, a text to make me laugh from my best friend, a phone call from a loved one checking in on me, or a sweet escape via a movie or book.  I am guilty at being a pleasure eater.  Admittedly I like to eat my pain away.  I enjoy food which has lead me to a great activity to fill the void.  I have been honing my skills in the kitchen.  I love food and I love to cook.  There are many times when I am unable to cook for my family because of the pain levels.  Often it is the first task I choose to do when feeling any level of relief.  Cooking brings me peace and fills my need to be creative while taking care of my family.  

About six years ago I went through a physical therapy regime.  Part of the process was talking to a therapist and learning relaxation techniques.  In my first meeting with the physical therapists I was told to have realistic expectations regarding what I was going to get out of the pt.  The point of the PT was not to help me be able to exercise or run a marathon.  The point was to increase my ability of self care and household routines.  I learned a lot during those few months in therapy.  Some of the methods have become ingrained as a normal process; the golfers lift for laundry, the log roll to get out of bed, meditation for relaxation.  Physical therapy might be a pain in the ass but it is a necessary evil.  The key to making the most out of it is finding someone who is well versed in RSD/CRPS so they know how to back off when the pain becomes overwhelming.  It can be very defeating if your therapist is harsh towards you when you cry.  On the other side of this coin however you do need someone who will push you hard enough to help you get stronger.  It is a difficult balancing act but a necessary one.  

Inspiration.  A reason to fight.  Why bother?!  Why bother shaving your leg when that vainful action will bring you to tears?  Why bother showering or fixing yourself up?  Why bother getting out of your pajamas when you plan on staying in bed all day?  Shoes hurt your feet and don't leave room for when your foot swells, so why bother?  You can easily lose your will to fight with RSD/CRPS.  If you were sick with the flu no one would blame you for not showering, changing your clothes, or getting out of bed, right?  Is there a difference?  Yes, there is a huge difference.  The flu will only consume a few days of your life but RSD is forever.  When learning to fight this disease you need to first have the will to fight it.  Don't make yourself feel guilty with a long list of who you think you are letting down.  Start off with one item on your list.  Yourself!  Welcome to your new normal and find a life for yourself within it.  Give yourself one task to complete and grow your list after each accomplishment.  Forgive yourself for the days you fall short.  After Gabriel was born I used to beat myself up emotionally for the days I could not take him to the park, play on the floor, or give him a bath.  Having those things would have been great but he still had a great childhood.  Instead of going to the park I would watch movies with him, cuddling on the couch.  Instead of playing on the floor I would read to him, book after book.  And he really didn't need a bath every night!  Guilt over something you cannot change is a kick in the stomach but we need to forgive ourselves.  My family loves me and does not hold it against me for the things I cannot give them.  Sure, there are times when they are emotionally charged and hate how the RSD takes so much away from us.  If your family has not yet found that understanding then they simply need more education about RSD/CRPS.  We are all on a learning curve.  

Personally, I never discount the power of prayer.  I don't care what religion or belief system you have.  Mine is based in a loving God who helps me find the strength to continue my fight.  About 6 months ago I began to sing in my church choir.  I grew up singing in the choir of my childhood Church.  I stopped singing when I began my family but I have always found spiritual peace through the music.  I am glad it has found a place in my life once again.  

While many people admire my strength and courage for living with this pain they unfortunately have never seen what it is like "behind the curtains".   Learning to fight RSD/CRPS takes guts and time.  It takes support, education, purpose, therapy, inspiration and prayer.  I have been on this journey for 19 years and I am still learning.  These are just some of the key principles I have adopted based on my personal experience.   Hopefully I have helped others with their fight.   

The wrinkle in my plans...

RSD can really throw a wrinkle in any plans you make.  A few weeks ago I was getting ready for our town wide yard sale.  I wanted to get rid of a bunch of baby stuff that I have held on to and four large garbage bags of stuffed animals.  I took a whole day going through our attic storage.  Another day was spent washing the old baby clothes, sorting into piles and folding.  I pulled out our old DVD collection and books that I don't have room for on my book shelf.  Then we had the stuff cluttering up our dinning room for almost a week!  I had the perfect plan.  I even researched how to price the items fairly.  I poured so much of my energy into this project.  However the wrinkle came in the form of one of my more intense RSD Flares.  Five days before the yard sale the flare started but I thought, "Okay, I have everything else prepared so I can take a few days to take care of myself and hopefully be well enough to do the yard sale.  I got this!"  This flare really kicked my butt.  I spent the first few days between bed and couch.  Gabe helped me with the simple chore of packing lunch boxes and Leo came home to put Lucas on the bus and get him off the bus.  By the time Saturday rolled around I was well enough to walk using a cane as long as I didn't have to stand for more than 5 minutes.  Fortunately, the yard sale was mostly rained out on Saturday so I only had a few hours outside and Gabriel was a big helper!  My in-laws came over near the end of the sale.  My sweet Mother in law walked into my messy kitchen and cleaned it up before I could stop her.  Leo brought home dinner and I ate with my leg propped up and wrapped in my heating pad.  The warmth of family uplifted my spirits because as much as I hate to admit it the flare was beating on my emotions.  I set up my tables again on Sunday.  I made enough sales to satisfy the effort but I did not get rid of enough stuff!  Then to add insult to injury I started a cold to accompany my flare up.  Perfect!

My flare up lasted 10 days.  Even though I still had my cold I felt like I was walking on a cloud just being able to walk without pain again!  My cold still has a lingering cough, damn mucus, but mostly I am just now feeling better.  All in all that means I have been unable to fully do "my job" for three weeks now.  Imagine how far behind you could be for the generalized house hold responsibilities; laundry washing folding putting away, cooking, dishes, dusting, vacuuming, floors, and basic organization.  Don't even get me started on email responses!  Today after my shower I realized we are all out of clean towels, and when I went into the kitchen I had to reach into the dishwasher for a clean coffee cup and spoon because there weren't any in the cupboards.  Needless to say my house needs a deep and thorough cleaning.  Yet, I hesitate to launch into this cleaning headfirst because it is raining out.  Why would the weather stop me from cleaning my house?  I know my body and I know my RSD.  Typical agitators are: Weather, Stress, Physical Fatigue, and soft injuries.  Any combination of these could trigger a flare especially when you factor in that I have just recently recovered from a flare.  Right now I am being cautious because at the end of next week is Halloween.  I cannot afford a flare up right now.  I have managed them in the past for Halloween but this year I believe is going to be a big year for trick or treating with Lucas.  He is finally at that stage when he knows what it is and is excited for it!  I am excited to take him house to house, and hear him say "Trick of Treat!  Thank you!"  Yes, I know this year he WILL be able to say those sweet words!  Then after his pumpkin bucket is full we will come home to hand out candy and see other kids in their costumes.  I do not want to sit on the sidelines this year and miss out on hearing him say "Trick or Treat!"  It is also a big year for Gabe.  He is at the age where he doesn't want his parents trick or treating with him, he wants to walk with his friends.
Do not get me wrong,  I want to have my house clean.  It is on my priority list!  I just have to be careful about how I go about it the chores that need to be done.  I have to take my time and not just plow through them as others would.  That is why I am taking the time out to write this blog post.  By sitting here and writing I am being proactive at pacing myself.  Before I sat down I unloaded the dishwasher, and re-stacked it.  Now I am ready to get back up just in time to get Lucas from the bus and finish cleaning the kitchen.  What is funny is that I will be cooking as soon as it is clean again, creating a fresh mess for later.   Such is life!  Tomorrow, I will conquer other household chores using the same slow paced process.  I figure my house will be back in order before Halloween!  As long as RSD doesn't wrinkle my plans again.  

Boo Boo Leg

BooBoo Leg is how we refer to my bad leg with Lucas.  A few years ago we sat Gabe down and told him that Boo Boo Leg is really called RSD, Really Stupid Disease.  Both terms are fitting.

Tuesday afternoon my leg burst into pain.  Sometimes it is just that easy.  One minute I am fine and the next my leg is filled with flames of ice where I cannot bear any weight.  Maybe God did shine a little light that morning because I prepared dinner first thing in the morning, Chili!  The chili was already simmering on the stove when my pain came back.  Lucas was already home from school so I didn't have to worry about limping outside to get him from the bus.  I sent Leo a text and when his work day was done he came home to take care of me.  I kept my position on the couch while Leo fixed my bowl of chili and I talked him through how to fix Gabe's bowl of chili (half rice, half chili, sprinkle sugar on top to lessen the spice and no cheese!)  After dinner Leo gave Lucas his bath while I stayed on the couch.
Wednesday my leg was not any better.  It was a half day of school and I already planned on keeping Lucas home.  We had plans but my leg changed them, still it was easier to keep Lucas home than to get him ready and on the bus when I would have only a few hours till I had to get him off the bus.  Gabe went to school, it was Student Council Election Day and he was running for Treasurer.  He had a great speech prepared and little things to pass around.  I am so proud of him.  Gabe did not win.  Lucas stayed in his pajama shirt all day with the addition of jeans being put on.   I stayed on the couch.  I fixed the boys breakfast but Leo brought me my breakfast and lunch.  Leo fixed Lucas' lunch and when Gabe came home he fixed his own lunch.  I stayed on the couch.  The only times I got off the couch were to help Lucas in the bathroom.  Yesterday I was "one with the couch".   Gabe made jokes about me being a couch potato!  When Lucas fell asleep on the couch I called Leo and he came to carry him up to my bed so I could go up to rest too.  Yes, I spent all day on the couch yet I was tired, needing to lay down in bed.  Being in severe pain is hard work on the body.  I laid down watching tv for a few minutes then turned it off to sleep, I napped for about two hours.  There was that moment, right at waking where you are still sort of sleeping, that I did not feel pain.  In one second my body caught up with my mind I felt the full force of pain and even though I woke with the need to pee I didn't want to move.  I understood, putting my feet on the floor will cause even more pain, standing up would cause more and then the issue with limping 20 feet to the bathroom.  At that moment going to the bathroom was more trouble than it was worth.  So, I laid in bed and turned the tv back on.  I needed a little more bravery before I could deal with getting out of bed.  Last night Leo served me breakfast in bed and took care of the kids even though they kept visiting me.  My kids are awesome!  They cannot get enough of me.  Gabe laid in bed watching TV with me while Lucas kept coming in trying to get me to play with him.  That is what is great about this family I have, I have their full support and love.  I usually don't let the pain keep me down but too often these flares have a habit of knocking me down.  I missed choir practice last night.  I could have pulled out my cane, pull my hair into a ponytail, put on some loose fitting clothes and swallow back some pain so that I could sing but Leo could see that it would be too much effort knowing I was better off resting to give my body a chance to recover from this latest flare.  Leo made the call for me and allowed me to become the hermit.

Today is tough.  I have a responsibility tonight.  It is Back to School Night for Lucas' school and as a room parent I have a meeting afterward to discuss responsibilities.  My heart doesn't want me to miss it.  My leg on the other hand is barely better than yesterday.  I have an inward battle with myself.  How can I go to this meeting when Leo had to get Lucas dressed and on the bus this morning?  How can I go to the meeting knowing that I am spending the morning on the couch?  Plus, there is the issue with my vanity.  If I were to go the only way I would be able to walk is to use my cane and while I have come to grips with using one I still do not prefer it.  It always produces questions and concerns.  Since RSD/CRPS is not a household name nor easily explained away it becomes difficult for those that know me without needing a walking aid.  Still, I want to go!  It might seem absurd to most people.  Back to School Night and being a Room Parent are parts of my life that are about ME, not Marti Ann with RSD/CRPS.  It might seem absurd but in my mind not going tonight feels like I am letting RSD/CRPS win a battle.  Leo was not happy.  He rightly believes that I should miss it because it would be too much on my body.  During a flare it is often best to just rest.  I also have a big weekend coming up.  We are already registered for the Town Yard Sale and I will need to be on my feet most of Saturday.  On Saturday I will not be able to be a Couch Mommy.  I need to decide if going tonight will hurt me more than soothe my ego and if it will have an affect on how I will feel come Saturday morning.  What you might not expect is that this little decision could have such a large affect on how long my flare lasts.  Who knew that going out of the house for a few hours could have a large affect on your health?  My wonderful and amazing husband has now offered to attend Back to School Night for me.

Leo and I make a great team.  I honestly don't know what I would do without him.  He gets me which is what makes us work so well.  He works his butt off all day and still finds it in him to come home and pick up the pieces that my body forces me to drop.  I might have machine parts inside of me but I think he might be more Machine than even me!  Dishes might still be sitting in the sink and we might eat more takeout or leftovers but when my leg is hurting Leo takes over so that I can rest.  He will work 10 hours or more on a week day and then come home, clean the house, take care of the kids, take care of me and still be awesome.  I am a lucky woman!  I cannot complain about my life.  I can complain about my pain and how it complicates my life but I am still a very happy woman.  I am a happy woman but the pain does a number on my emotional status.  I am constantly worried about Gabriel, he does not cope well with my pain anymore.  His age has given him awareness that he has a Mommy who is not healthy.  I worry about Lucas and if I am doing enough for him.  I worry about Leo and if he is doing too much without a support system for himself.  I worry about allowing myself to fall into a pit of despair.  Hey, it is not that easy living with constant burning pain that feels like your leg is filled with ice and the slightest touch feels like agony.  I never know how long a flare will last.  I made a vow years ago to not let the pain drag me into the deep dark hole again but there are days and circumstances that make it harder.  What keeps my head above the water are three men whose lives revolve around me.  If you only get three wishes in life then I have already received mine; Leo, Gabriel and Lucas.  Three amazing men who make my life blessed.  

RSD BRAIN

A common joke in our house is my forgetfulness.  Mommyitis!  Gabe has even begun to detect it and poke fun at me when I goof up my sentences.  It goes beyond the basic where did I leave the keys or sunglasses.  Most people have the silly moments where they call their child by the wrong name.  Imagine that amplified!   I have learned to laugh at myself because life would not be fun if I just cried every time I said the wrong word in a conversation or forgot where I put something.  I have also learned how to cope with it to help prevent or at least quickly recover when these moments happen.

As funny as it may be it can still be awkward when I am in a conversation with someone (someone outside of my family) and I either forget what I wanted to say or the wrong words come instead.  So, I censor myself and I talk more slowly, deliberately making sure I think it all through before it comes out of my mouth.  This past week I had a conversation with my sister and when I froze mid-sentence, unable to remember the word I wanted to use she was able to say it for me, commenting that she just needed to be my "Hero".  Thank you sissy!  It was that moment combined with me loading up my blog that gave me the inspiration for this blog.  The last few days I have mentally cataloged different idea's to blog about but as I loaded the site every single idea escaped my mind.  No, this was not a case of writers block this was a case of RSD Brain.

What is RSD Brain?  Our bodies are under so much stress from pain levels that our brains simply cannot keep up. To make matters more complicated we are also on medications that can effect how we think.
Every one knows that if you don't get enough sleep you cannot think straight.  If you are sick or injured your not able to function at full capacity.  When you are on heavy medications that affect the nervous system and reduce pain then you brain is dulled.  Combine all of that and you can have a perpetual foggy brain.  That is just one of the many gifts of RSD that keeps on giving.

How do I cope?  I set alarms on my phone and calendar reminders for many mundane things.  I know many people use notepads but this just doesn't work for me, too often I will forget by the time I realize I need to write something down.  My other mommyitis issue is misplacing items.  I once put the ice pack for the kids lunch boxes in the cabinet and the sandwich container into the freezer, okay I have done this a few times.  Yes, my phone is often misplaced.  Usually this happens on days when I am doing many things: talking on the phone while doing laundry then I end the conversation and walk away to do other household chores and two hours later I cannot find my phone.  I have many anecdotes to help you understand how the brain fog works but if you don't live through it then you will never understand how it can mess you up.  The only thing I can ask is for your patience, humor and to know when to pretend that nothing is different.

It is a Really Stupid Disease (RSD) but it is one that I am stuck with so all I can do is live my life despite it.  I am not simply surviving I am a Warrior fighting back with strategy and humor.      

Mommy time ...

This past Sunday was the first day back for the Church Choir.  I was excited and a little weary.  Getting the kids back into the motion of getting ready on a Sunday morning is tough.  They generally do not want to move their butts!  Last Spring I joined the Church Choir.  This was something that Leo helped me do by changing his own schedule so he could take care of the kids during my practice night and so that he wouldn't be playing soccer on Sunday mornings either.  Hallelujah!  I can get back to my singing roots!  Well, this past Sunday as I am trying to light a fire under Gabriel to get moving he asks me "Why do you have to sing in the choir?  I miss you sitting next to me in church."  My heart is broken but I try to pull it together.  I tell myself, do not cave you deserve this small amount of time.  So, I begin to explain it to him.  I end my little speech with "Finding time for me helps me be a better Mommy."  Gabe responded "How?"
I have had a hard time explaining this to myself over the years.  It is exactly what has held me back in the past from giving myself a regularly scheduled "Mommy Time".  I have learned to find my personal time when the kids are busy doing other stuff; school or sleeping!  That is why it is so big that Leo helped make it happen that I could join my church choir.  It still hurt my Mommy Heart sitting up in the choir loft and not next to my family.  We learned a few little tricks to ease the pain but still, it is not easy for me to be away from them.
I always hear about other Mom's who take regularly scheduled time for themselves.  Every book on parenting preaches about how it is good and necessary for a Mom to find her Mommy Time.  It supposedly makes you a better Mommy.  This is not a judgement call on those Mom's who follow this practice, but I just don't get it!  Arg!  It does not make the way I am raising my children any better by taking time away from them to do something for me.  It really doesn't have anything to do with being a Mother.  Finding Mommy time is more about reminding yourself that MOMMY is a PERSON too!
I recently watched the new Adam Sandler and Drew Barrymore movie "Blended".  There is a line in the movie that I totally agree with.  In fact it is not just a line but a discussion they are having about Parenting.  I don't remember the exact quote but it is basically that as a parent you need to be so reliable that it becomes boring.  You need to be there for your kids 100% of the time.  No wait!  99% of the time because 1% of the time you should get something for yourself!
That is what I am doing by singing in the choir.  I am giving 1% of my time to myself for something that I want to do.  My kids will only be little and needing me for a short amount of time.  There will be a time in our not so distant future where Gabe will not need me in his daily life.  Yes, in an emotional way he will always need me but not the same way he does now.  Seriously, he scared me this Summer when he did the math about how long until he starts driving and when he will go off to college.  I really only have another 7 years of him living under my roof and then he will be off to College (God and grades willing) after that it really is down hill as he becomes his own man living his own life.  So why in the world would I want to take a vacation away from him now?!  Seriously this Mommy has attachment issues and she is not ashamed of it.  Thankfully I have Lucas who is still so little but I know this time of their life is so fleeting.  That is how it should be.  Our jobs as their parents is to raise them into fully functioning adults.  When they are grown and out of the house the percentages will naturally shift giving us the bigger percentage as they need us less and less.
Right now?  I have an 11 year old and a 4 year old who need their Mommy present in their life.  Every part of their life.  Finding some Mommy time does not make me a better Mommy but it does help me stay connected to Marti Ann.  Just like the occasional date night keeps me connected with my husband.  99% of the time I am Mommy; Chef, personal shopper, maid, tutor, story teller, stylist, photographer, personal assistant, monster chaser, playtime buddy, secret keeper, disciplinarian, best friend, and daily affection giver!  Okay, I reread that sentence several times just to make sure I didn't leave anything out so if I did "oops!"

Now it is time to put on my maid, personal shopper, and chef hat to get some housework done while the kids are at school so that when they do come home I can be available to help them with their homework.  One more thought about Mommy time - The best way I spend my Mommy Time is when I am tucking my kids in to bed at night.  That is when this Mommy really feels complete.

Parenting & Disciplining

It has been a few months since I have written in my blog.  Thankfully I was so busy with life that I never had a chance to sit down and get my thoughts out.  Even during my bad days and flares I still did not have the time to sit and write.  On my phone I kept a running list of topics for future blog posts.  I am not going to touch on those topics today.
Today I have a need to write about something that has been bugging me.  I have dictated this topic in my mind, changing the approach and wording many times.  Why so much stress?  Too many people take my opinions/beliefs/convictions as if they are a personal attack against the way they choose to live.  Listen, this is my blog about my life and that is what I am writing about. It is my opinion.  Nobody should ever feel like I am using this as a soapbox to attack others.  The way I live my life is based on my personal circumstances.

Parenting & Disciplining your child.

I have noticed, and partook in the facebook battle regarding "spanking".  Personally, I am adamantly against spanking.  I believe spanking comes from a parents level of frustration and inability to handle the given situation.  Often the parents who spank their children were also spanked as children.  It has become a type of family culture in regards to disciplining that is often believed to have no negative affect on the child except in teaching respect.  Many of these people choose to ignore scientific studies that prove that an "innocent" spank has long term emotional and mental side effects.  Why?  Because they genuinely believe that they themselves are perfectly healthy and fine.  I believe those parents simply do not have the proper 'tools' to understand how to handle a given situation differently when they are faced with their child acting inappropriately or unacceptably.

I am firmly against spanking however I do not believe it qualifies as child abuse.  There is a fine line between discipline and abuse.  Sometimes it is all in the eyes of the beholder.  I remember when Gabe was around 5 years old, we were at the park and he asked me to play with him because there weren't any kids his age to play with.  I was having a good day so I indulged him. There was another child at the park, much younger than Gabe, and his Father was pushing him on the swings.  Gabe and I were laughing and having fun. I pushed him on the swings, chased him around and cheered him on at the bottom of the slide.  I remember that I was trying to catch him and after I did I spanked him butt in jest and Gabe giggled, squirmed free and kept running.  At that point the Dad looked at me with a dirty look, picked up his child and left the park.  He looked at me as if I had just committed a horrible act that he would not let him child be a witness of.  It was crazy!  Gabriel was laughing!  Surely this man could not think that I actually hit my child!  This was my first lesson on how serious the "Spanking Debate" has become.

In the past few years I have read so many responses regarding Spanking.  In different parenting web groups I have encountered what I call "Extremists".  Parents who believe that timeouts are a form of abuse.  What's a time out?  Remember that TV show Supernanny with Jo Frost?  She helped many families regain control in their homes by giving structure.  When children acted up inappropriately IE: temper tantrums or breaking rules Jo Frost taught the parents how to enforce a proper time out.  Time outs give the child and parent a few minutes to calm down and think rationally.  A timeout can be an effective tool for discipline because it can teach the child how to self moderate their emotions and that there is a negative consequence to inappropriate behaviours.  Once the child is calmed from their time out the parent is then able to speak calmly to the child about why their actions were not acceptable and the child can calmly apologize or talk it out with their parent.  As with any "tool" a timeout can be used in the wrong way, creating more harm than good.  One of those "Extremists" parents I mentioned earlier explained to me why she believes timeouts are abusive.  She believes it is emotional abuse to send a child out of the room, to either a corner or their bedroom, to sit in isolation for a designated amount of time until they conform.  Like I said "extremist".  When I explained to her about the proper way to give a time out and it's ultimate purpose she replied with "That's not the time outs I have heard about.  That sounds like you are calming your child down and then talking to him."  Um, yeah that's what a time out is.  What I learned from talking to her is that many people simply do not know how to give a timeout or understand what the goal of it is.  Yes, if done wrong I can see how it can cause emotional abuse.  If a child acts out, for example you tell them to clean up their toys but they don't want to so instead they make a bigger mess and throw a temper tantrum (typical child behaviour right?), and you respond with yelling at them to go sit in the corner until they calm down.  Now, while they are in the corner you ignore them and if they move out of it you are redirecting them back to the corner - yes  this can go on for a long time with a stubborn child.  So far I do not see the abuse but I guess the abuse comes when you ignore the child and demean their feelings.  I do understand that if you release a child from a time out without have a calm conversation about their behaviour then the whole meaning of the timeout is lost.  If you want to read up more about Timeouts I have found this article in Parents.com that shows how a parent can mess it up and how to properly utilize this tool when needing to discipline your child's unwanted behaviours.  http://www.parents.com/toddlers-preschoolers/discipline/time-out/why-time-out-is-out/

Personally I have tried to help my kids learn how to calm down when their emotions are getting the best of them.  Sometimes children just do not know how to calm down from their tantrums.  My children have been known to act out more strongly when they are caught up in the midst of an emotional tantrum, saying and doing things they ordinarily wouldn't if they were calm.  Sometimes the timeout just doesn't give them what they need.  So, I take time to figure out what they need to calm down.  Is it a hug?  Do they need a chance to vent?  Are they simply tired and emotionally burnt out?  I was able to teach my older son meditation breathing, slow, deep, cleansing breaths to calm down and then be able to talk it out.  For example he would be doing his homework but struggling with a concept or with neatness.  He would start hitting the table, try snapping a pencil in half or begin degrading himself saying that he was stupid.  When I would try to help his emotions would escalate and he would lash out.  So, I would give him a timeout and tell him to take five deep cleansing breaths.  Once he was calmed down we could handle the homework with him able to listen to my help and encouragement.  My younger son has a speech disorder so the "talking it out" makes him more emotional because he doesn't have the words to express what is going on with him, especially if he is overly emotional.  For him, I sit in the time out with him, holding him on my lap because he would not have stayed in the chair otherwise and I would have calmed him down by reassuring him that I was there for him and will listen to him when he finds his words again.  Often if he didn't have the language to express himself I would need to let him up from the chair so he could show me what was going on.

No matter the situation it is obvious that I need to keep a level head and calm emotional being to be able to effectively discipline my children.

Obviously a time out is not a reward, yes it is a type of punishment but at least it is not a punishment that demoralizes our children.  It's purpose is to teach the child that their behaviour is not acceptable and that they themselves can correct their own behaviour by calming down and thinking rationally.  Heavy stuff for a 5 year old to figure out, right?  That is why we are the parents and they are the kids.  As parents we are tasked with raising happy, healthy, and capable people.  It is up to us to give them the tools they need to succeed in life.  As adults we know you cannot resolve conflicts with physical conflict.  So why spank a child to resolve their behaviour?

As adults we have a set of rules, laws, to follow and if we break them there are consequences.  Earlier this past week a NY man was being arrested for the illegal sale of cigarettes.  When a police officer tried to handcuff him the man pulled free, resisting arrest. The police officer then used excessive force by putting the man into a choke hold.  Some of you might think that this has nothing to do with disciplining a child with spanking but I believe that one can lead to the other.  Police Officers are respected individuals to enforce our governing laws.  A Parent is an individual whose responsibility is to enforce household laws.  No one, not even an officer enforcing the law, is allowed to lay a hand on us in a manner of excessive force!  So why then do so many think it is okay to lay a hand on a child to teach them to behave?  Who determines what is excessive force?  In the case of the Police Officer executing a choke hold it was acknowledged that the department placed a ban on this maneuver in 1994.

In NJ the Department of Children and Family services details - Abuse is the physical, sexual or emotional harm or risk of harm to a child under the age of 18 caused by a parent or other person who acts as a caregiver for the child.  Read this link to have a detailed definition regarding abuse http://www.state.nj.us/dcf/reporting/links/.  It should also be stated that spanking is not technically illegal.  This was recently proved in a case where a father was brought up on charges of abuse but won the case in appellate court.   A New York state appellate court made a ruling of "reasonable use of force" in a case regarding a father who used an open-handed spanking of his 8 year old son at a party after the son cursed at another adult.  In my opinion, if it was my son who cursed at an adult I would be furious with him.  I do not know if I agree that this was a case of "reasonable use of force".  I believe this child learned that in this situation his father showed him a lack of respect, humiliation in public, and that violence resolves conflicts.  How did the 8 year old learn the curse word and why would he use it at the adult?  Did the father first learn about the situation from the child's perspective or did he just react?   There is a lot that we do not know about this situation because the state could not prove their case of abuse.  Yes, this child needed some strong and appropriate discipline because no matter what he needs to show respect for his elders.  However I cannot help but wonder if this is behaviour he learned at home and what the adult did to cause the child to disrespect him so strongly.  Does this father respect his child and his emotions?  As a legal matter it is obvious that the state simply could not support the case of abuse.  That doesn't make the use of spanking right or legal but it doesn't make it illegal either.  It really is a case by case situation.

This past week the Today Show did a story on Spanking stemming from the court case.   The Today Show anchors Natalie Morales and Al Roker admitting to spanking their own children a few times but only in extreme cases where they were emotionally upset with fear that their child could get hurt like running out into a street in front of an oncoming car.  Al Roker admitted to feeling horribly after each incident and apologized to his child for overreacting because he was scared for them.  Both anchors admitted to being spanked as a child.  Willie Geist admitted to also being spanked as a child and believes it is a "Generational" even though he has never disciplined his own children that way.

CNN did a story about spanking and how it can have a negative effect on our gray matter.  In the story they explained that the study defines Harsh Corporal Punishment as one spanking a month for over three years frequently using items such as a belt or paddle.  The study shows that those individuals who were spanked in this manner had less grey matter in their Prefrontal Cortex.  The prefrontal cortex is the part of the brain that makes you, YOU.  In psychological terms it is your Executive Function.  Wiki defines this part of your brain as "Executive function relates to abilities to differentiate among conflicting thoughts, determine good and bad, better and best, same and different, future consequences of current activities, working toward a defined goal, prediction of outcomes, expectation based on actions, and social "control" (the ability to suppress urges that, if not suppressed, could lead to socially unacceptable outcomes)."  The study also shows that this type of punishment has the largest effect on children aged 5-9 years old.  That is the time when children learn the most about self control and yet parents are effectively spanking it out of them, so their children will grow up never fully being able to gain self control!  Ironic isn't it?  In the report by CNN they interviewed Elizabeth Gershoff, an associate professor at the University of Texas at Austin who is a leading researcher in the USA regarding Spanking and has been studying corporal punishment for 15 years. Gershoff was quoted as saying "Most of us will stop what we're doing if somebody hits us, but that doesn't mean we've learned why somebody hit us, or what we should be doing instead, which is the real motive behind discipline."  If you want to read the full report by CNN here is the link http://www.cnn.com/2014/07/23/health/effects-spanking-brain/

I believe spanking will always be a hot topic and it should be.  Spanking is not necessarily abuse but it is scientifically proven to cause mental harm.  I never needed the science to prove that spanking is harmful to children's well being because I am so strongly against it for one basic thought process "No one is allowed to hurt my children, not me and not even themselves when they get emotional and want to hurt themselves."  I find spanking a demeaning form of discipline that fits more for the parents frame of mind than as a tool to teach the child.  Like the Today Show anchors admitted about their state of mind when they spanked their child, they were emotional and scared.  Spanking is more about assuaging the parents frame of mind and emotional status but in that moment it also teaches the child that the parent is capable of causing physical harm to them and then claiming they love them.  I find it absurd that a parent can rationalize love and physical harm in the same sentence.  Unfortunately, parents who spank are just repeating the type of discipline from how they were raised.  50 years ago spanking was a normal and acceptable form of discipline.  Parents had their own gray matter spanked out of them so they do not have the "tools" to handle the situation differently.  Honestly, I feel sorry for these individuals but ultimately as adults you become responsible for yourself and cannot rely on the old saying "But I was spanked and I survived it!"  I think that is the one phrase that annoys me the most.

Obviously, you did not survive unscathed from being spanked.  The studies prove this even if you are in self denial.  The debate about spanking can go on and on.  Ultimately it is up to the parents to figure out how to change the pattern.  Educate yourself.  The best anecdote I have is about my Grandmother (my Mothers, Mom).  She was a nurse back in the day when smoking was allowed in the hospital.  Since then we have learned that not only is smoking bad for your health, causes Cancer but it is now illegal to smoke in a Hospital.  Times changed, we learned by science and statistics and we adapt.  The debate can and should continue.  With the debates more parents are being educated about the ill effects of spanking.  Parents also have more resources for alternative discipline techniques.  Maybe in the next 50 years we will see a gray matter spike because less adults were spanked as children therefore they have a better ability to handle conflict.  

I am thankful

This weekend my doorbell chimed insistently added with several knocks on the door.  At first I was a little upset, Lucas had just went down for a nap and was sleeping right above this racket.  I wasn't expecting anyone but as I could see, there was crowd of people on my front door step.  I opened the door to a bunch of teenagers.  Yes, teenagers who were laughing and having a great time.  I was about to reprimand them for abusing my doorbell but this one boy started nervously reciting a speech from a piece of paper he held.

They were kids from our local Catholic School.  They were going door to door collecting non-perishables to fill the shelves of our local food pantry.  Down the street I saw another group of kids doing the same thing.  Instead of being upset that they could have woken my sleeping child I was filled with amusement.  I even interrupted the boy from finishing his speech by laughing and saying "I got it!"  I asked them to wait while I went to my pantry.  As I was reaching for different canned goods I was overcome with emotion.  I am so THANKFUL!  I have a pantry filled with food that I can contribute to a good cause.  Here I was about to be upset that someone could have woken my child from his much needed nap but then I was faced with the goodness that does thrive in our society.  I filled a plastic bag and gave it to the kids.  I made their day!  They believed that with my contribution they beat the other kids, I guess they were competing with each other.  As they walked away I listened to their laughter.  Imagine teenagers giving up their Saturday afternoon to go house to house asking strangers for non-perishables to fill up a food pantry.  They were not acting like this was grudge work or something they decided to do to meet a requirement.  They were laughing!  They were having fun!  They even had a healthy competition to see who can get the most!  It was a great act of kindness that they probably do not even know the full weight of.  

I remember back when Leo and I were just starting our family.  It was tough learning how to manage our paychecks to pay our mortgage, bills, grocery shop, diapers and formula.  I even remember a time when at 10pm we belatedly realized we only had 2 diapers left but the store wouldn't open until 8am.  Our parents also helped us buy some groceries during the months we overextended ourselves.  We learned a lot of valuable life lessons during that time of our life.  If these kids were to have knocked on our doors at that time I would have turned them away and feel ashamed for not even having a can of beans to give.  Now, I have a pantry filled with food.  I have learned to keep track of how many diapers I use so I know when we need to buy more.  My family never has to feel that pinch again.  Filling that plastic bag for the kids gave me a moment to be thankful that even when money was tight we always had someone to help us.  Now I can pay that help forward.  Thankfully we never needed to rely on a food pantry to help fill my kitchen shelves

On March 27 my sister had surgery to remove a brain tumor.  Yes, a brain tumor.  Miles and hours away I felt helpless.  The only action I could take was pray.  God has seen our family through many health crisis'.  My husband knew how heartbroken I was that I couldn't be there so he planned on driving our family down for an overnight stay that weekend.  We were so thankful that God Provided us so that we could afford that spur of the moment trip.  My sister came out of surgery with stellar results so she was released early.  When I finally made it to her she was resting quietly in bed.  She and I  just stared at each other with a connection that only we share.  It was one of our more emotional reunions.  I am beyond thankful that we could afford the hotel night, gas money, and the lunch we bought for the family.  I am thankful that I was able to simply be there for my sister during her time of need.  It was heart wrenching walking away from her just 24 hours later.  However, the ride home proved interesting.  It was raining and soon we were treated with the ABS light turning on and this lovely little "ding ding ding" constantly singing to us.  Leo called our mechanic and he told us it is probably just the sensor.  So we turned up the music to try and drown out the noise.  In the next few days a new noise, a type of grinding noise made Leo take the truck to the mechanic.  Yep, something was wrong and we needed to fix it.  I am not even going to pretend that I know mechanical "stuff" so I won't try to say what the problem is.  However, before we could feel the pinch we received a monetary gift for a small favor we did.  If we didn't receive the small gift we would still have found another way.  That's what we do!  We just keep moving forward, solving each problem as it comes at us.  All of our regular bills, medical bills, and unexpected bills are handled with the knowledge that we work hard for what we have and trust that God will help us find the best solution.  God will provide.

I may not have the healthiest life or the richest.  What I do have is a beautiful family, a home filled with happy memories, kitchen cabinets filled with food, access to good doctors, and my husband is able to work to support his family.  Every time I have ever been in need God has answered my prayers.  I think this is a mighty lesson during the Lenten Season.  Life does not need to be perfect to see God's hand helping you along.  I believe it is all the small blessings that build the beautiful life.  My sister survived having a brain tumor removed!  I have enough food in my home that I could give towards others less fortunate! When you consider the whole, how can you see this life as anything but blessed?  I am thankful for all my blessings!!!

Philippians 4:19 

And my God will supply every need of yours according to his riches in glory in Christ Jesus.

A Happy Time!

Yes, I am Catholic and today I went to church to receive my ashes to mark the beginning of Lent.  I was raised with the type of Lent filled with a feeling of needing to give something up as a way to understand and follow in the path of Jesus.  It was a time of self deprivation and when Easter finally came I was filled with JOY because Lent was OVER!!!  As a child you can get creative as to what you are going to give up so that the season isn't too hard to cope with.  My parents often remind me of the year that I did not give up cake and I did not give up ice cream, no I gave up "Ice cream Cake!"  Honestly, as a child it is such a hardship to not eat ice cream cake.  My good parents even made sure there was at least one time during Lent that I was faced with Ice Cream Cake, and I had to go without.  I learned what it was to make a commitment and deprive myself of something I enjoyed.  I knew I was honoring the sacrifice Jesus made for us.  It helped me understand the level of deprivation Jesus made to save us.  It hurt to not eat ice cream cake but Jesus gave up so much more than I could have ever dreamed so my small sacrifice was just a tip of the hat acknowledgement towards Jesus.  As a Mother I know how hard it is to teach a small child about the real meaning of Lent.  Lent and Easter are not as easily explained to children as Christmas!

As an adult I see Lent differently.  Last night and this morning I prayed, asking for guidance on how to best give myself this Lent season.  I didn't know what I was going to give up or give extra.  I quickly talked to Gabe about deciding what he is going to do for Lent and that we would talk about it more after dinner tonight.  Ash Wednesday is a day of fasting and abstinence, sorry Leo!  Because of my pain medication I have to revise my fasting and allow myself a small breakfast.  I still had to deal with the crazy chaos of getting Lucas ready for school, and his last minute meltdown as the bus pulls up because suddenly he wants to stay home all day.  Honestly I pray every day asking God for more patience after I put Lucas on the bus!  God and I talk daily about how I cope with the very lovable Lucas.

At the Ash Wednesday Mass, Father Jude spoke about how his own mother changed his viewpoint about Lent years ago when she battled cancer.  Her take, it was a Happy Season!  Even though she was coping with losing her hair and fighting cancer she couldn't help but feel like the season was about Jesus' love for us and how that was something worth celebrating.   I cannot retell Father Jude's story but what I got out of it is that she was happy to give back to Our Saviour.  She began to address it as "Happy Lent" a season to be happy!

My church hands out these lenten packets every year that are filled with prayers, information about events, and activities that you can do with your family.  They always remember to be child friendly.  This year the kids booklet was titled "Learn to Love this Lent".  How amazing is that?!  On the cover is a cartoon picture of Jesus with a child on his shoulders and another child next to them.  They are all smiling and it looks like they are having FUN, not being solemn and respectful.  They are filled with joy and it is about Lent!  I opened it up and the first activity page is for today, Ash Wednesday.  It is titled "Lent is for Love" and the child's activity is to finish drawing the child's face with an ash cross on the forehead.  At the bottom of the page it says "Jesus, thank you for loving me.  Help me to learn to love others during this Lent and always."  This is the message I want to fill my boys with.  To love everyone as Jesus loves.  Lent is about Jesus path to the cross and how every choice he made was filled with Love for us.

I am refreshing my own perspective of the season.  Do you watch cooking competitions?  In them you will always find at least one chef who takes a familiar dish and deconstructs it to the basic concept and then reinvents it.  That is going to be my own approach to Lent this year.  Instead of staying with the traditional sense of "giving something up" I am going to take a better understanding of the sacrifice Jesus made for us and deconstruct it into how it applies to my life today.  What can I sacrifice in honor of Jesus?  What is a sacrifice?  How can I make this blend in with our family life and teach my boys about Lent?  If I gave up coffee does that really send the message that I am trying to follow in Jesus' footsteps?  What if I gave something instead?  What if I gave my time, talent and energy this Lenten season?  Is it wrong to happily do something that will bring me closer to Jesus?  What about my children?  What can I do to help them honor this season?

I think I found the answers to my questions that will best fit my life and family.  It came to me as I was in the Gathering Space of our church and then the message was sent home while listening to Father Jude talk of a "Happy Lent".  God answered my prayer and in doing so I knew I had to talk about it in my blog.  I will be giving my time, talent and energy this year.  I still need to make the phone call but my plan is to bake my grandmother's homemade bread and donate it towards the Lenten Soup Kitchen each week.  I am going to have Gabe get back into the habit of night time prayers but I am also going to ask him to help Lucas pray each night.  I am also going to find the opportunity to "pay it forward" and cook a meal for a family in need.  I think that doing this has more spiritual meaning than giving up my coffee or going without sweets for the next 40 days.  Jesus GAVE his life for us but that doesn't mean he GAVE UP his life.  For now on I am choosing to "give" each Lent instead of the traditional "giving up".   I am going to focus on making Lent a Happy season instead of a season of loss.

I am going to ask that you do one thing for me.  Pray.  Please remember to say a prayer for my RSD family so that no one should ever feel lonely or lost in their pain.  This can be said about all chronic pain disorders but I am asking for you to make RSD warriors a focus in at least one of your prayers.  Believe in the power of prayer.  Thank you!