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!

Paying Tribute

I recently went back to high school to participate in a tribute concert for my choir teacher who is struggling with cancer.  It was a privilege and an honor to have the opportunity to give her thanks.  It was my first time being back in my old High School.  I swore I would never go back.  It took an event like her tribute concert to make me consider revisiting that place.  My RSD began the month before the start of my junior year of High School.  It took about four months before diagnosis.  Those months were hard because while I was dealing with all this pain everyone believed that "technically" there was nothing wrong with me.  I cannot even tell you how many adults thought I was faking the level of pain for attention.  Choir was different.  Everyone saw past my crutches and needing to leave class 5 minutes early, even my teacher.

I couldn't help having all those memories come flooding back while I walked down those old hallways.  As I reconnected with people I sort of knew I was taken back by the fact that they did not remember me as "that" girl.  Instead I was remembered as "that cute little girl who was always smiling, always happy."  Some asked which year I graduated in and I found myself lying to them so they wouldn't question why I graduated a year after them.  After all I was in all of their classes since middle school!  I am embarrassed at how RSD made me need to take two senior years to graduate High School.  I am proud of my accomplishment, I graduated without the help of most of my teachers.  Still, if I told them when I graduated they would probably ask why and then I would have to explain my health.  I didn't want to do that.  I didn't want my RSD to interfere with what that night was really about.  I was okay with the fact that they remembered my smile more than my pain.  Especially when we were all gathered together for this special occasion.  We were there to celebrate a teacher who stood out from all the rest and now she needed our help.  That is something worth facing all those bad memories.  For one night I didn't need to advocate for myself, raise awareness about RSD.  For one day I could be a face in the crowd showing support for someone who made a difference in my life.

During my time at high school I had a lot of teachers and even my guidance counselor who worked against me.  Yes, they actually worked against me.  They didn't believe my diagnosis because they couldn't find it in a medical dictionary.  My algebra teacher even confronted me one day saying "I tried to look up RSD in the medical dictionary but I couldn't find anything."  My algebra teacher was one of those teachers who gave me a hard time about leaving class 5 minutes early.  In fact when I had missed too much school because of my constant trips to Philadelphia's Temple University Hospital for my medical treatments a conference was called.  I was in danger of flunking out of high school.  I remember sitting at this big table with my Mom by my side and my guidance counselor advising me to "drop out of high school and get your GED when you get healthy."  Tears welled up in my eyes but before I had a chance to respond a kind man from the Board of Education (I do not remember his name) said "Wait!  She has another option!"  Legally, I was considered a medically disabled student therefor I was entitled to some accommodations.  This is when he explained that I could take my Senior year and split it up into two years.  They would also give me a tutor that would pick up my school work, sit with me while I took tests and help me out.  If I felt strong enough to attend school I would always be welcome, even if it was just for a day or two.  I would be given a hall pass to leave each class 5 minutes early so that I wouldn't have to be afraid of someone walking into me, bumping me, and to walk as slow as I needed.  I was given an elevator key to use so I wouldn't have to deal with the stairs. Of course, if I wanted to graduate I would still have to earn my diploma just like everyone else.  I might have had help from the Board of Education but I did not have the support of my teachers, with the exception of two.  My choir teacher and my Language Arts teacher from my second senior year.  Not even my assigned tutor helped me.  She was essentially a glorified delivery person and test administrator.  I guess it is in how poorly I was treated by the majority that the seemingly simple extra help my choir teacher gave me makes her stand out in my memory.

Those first years living with my RSD were hard.  I became depressed and withdrawn.  It was hard to concentrate on anything but how miserable my life had become.  I dwelled and fell even deeper into my depression.  I was a teenager whose focus was daily survival.  All my dreams for the future flew out the window.  Instead of thinking about boys and what I wanted to be when I grew up or which college I wanted to attend my life, my reality, was centered around my visits to the hospital and a fight to stay out of a wheelchair. The battle felt hopeless and lonely.

Music was a source of hope for me.  In a world that I could not control anything I learned that I could control my voice.  My Choir Teacher was kind enough to send the sheet music home for me and she would record the music so I could practice at home.  If she didn't send the music home I would not have been able to keep up with the class.  I was in the mixed choir but I had also earned a seat in the honors choir class called State Liners Singers and I was a part of the Women's Ensemble.  My voice earned me a position in those groups but I would not have been able to succeed if she did not go the extra mile for me.  I don't know if she ever understood how this seemingly simple step she took for a student made a difference in my life.  Music gave me hope.  Especially the music choices she always made.  Hope, that is what my choir teacher gave to me.  A sense of belonging and a freedom to not be judged by my pain.  Her song choices were always beautiful and spoke to me.  Slowly, I was able to come out of my depression and put this hope to work at educating myself.  I did not have the best GPA but I earned my high school diploma.  On graduation day the seniors from the choir always sing at the ceremony.  That song was my heart, it was my own victory dance.

I have so much respect for the great teachers of our time.  In fact I have many teachers in my family and the boys Godfather is a teacher along with his wife and his brother.  Teaching is a noble profession.  They are human beings that are molding the lives of children.  I have learned first hand that a teacher holds a sort of superpower, yet many teachers are not aware of this.  They possess the power to make a difference in a childs life.  Sadly, not all teachers feel the need to be that type of teacher.  I had teachers who made my education harder but I also had these wonderful teachers who picked me up.  They didn't befriend me or counsel me.  They simply helped me learn despite the fact that I couldn't always be in their class.  By stepping out of the box and accommodating my needs, by caring about the individual, they made a difference in my life.

I feel so fortunate that I had the chance to be a part of the tribute concert for my choir teacher.  I know how big it is when someone gives you the smallest amount of their time when you are fighting an unbelievably hard battle.  None of my teachers ever knew just how bad my condition was.  Despite my crutches I was always the girl with a smile.  It is amazing what a smile can hide.  Pain, depression, isolation, fatigue, and a feeling that I didn't belong.  High School was a horrible time of my life.  My choir teacher provided a classroom that was a shining light in all that darkness.  I was not surprised that so many of her old students came forward when they heard she was in need.  We wanted to raise her spirits and raise some money to help her pay her medical expenses.  Mostly, we all wanted a chance to tell her "Thank You" for making a difference in our lives.  Honestly, I found the whole event awe inspiring!  Imagine touching so many lives over decades of teaching and having those people come together to stand on a stage and sing for you.  Phillipsburg is a small town and yet that night it felt like she had the love of the whole country singing for her.  Many people couldn't be there but they sent their support.  The response to her need was amazing.  She is definitely a teacher worth her title.

Thank you Kathy Hartman!!!

A long cold winter

Okay enough already!  This RSDer is sick and tired of the cold.  I have been in back to back flairs since the New Year, spending more days in pain than pain free.  My pain free days are spent catching up on the piled up housework or simply spending quality time with my boys.  During my flairs I try to do as much as possible but each day I fall short of my goals.  Despite my pain I am a wife and a mother who must take care of her family.

It is annual IEP time!  A knot is impregnated in my stomach.  Last week we had the meeting for Gabriel's IEP.  It went extraordinarily well.  It was only this time last year that he was diagnosed with a Learning Disability.  Last year was rough, to say the least.  It was a time of family hardships with my surgeries, my Dad's surgeries, and then Gabriels grades took a nose dive.  Not only did his grades take a nose dive but his emotional well being became a concern.  He was not able to emotionally handle my health and he took that stress to school.  I had always helped him with his school work but last year I physically couldn't do it.  We signed him up for the homework club to give him that extra help time and if he really felt stuck I would try to help him out from my bedside.  Suffice it to say last year was an extremely difficult year for Gabe and his IEP process did not go well.  It was our first IEP and we really didn't know the right questions to ask or how important we were.  This year, so different!  This year we knew what our place was at the meeting and that if we weren't comfortable with something we could say so and not let it happen.  The best part is that we were more effective in the collaboration of deciding what best helps HIM to succeed.  Honestly, I think that is what will make this coming year even better, the focus is on HIM and what it takes to make him able to succeed at his personal best.  Basically, he is at the top of High Average ability in cognition but in processing speeds he is at the very bottom of Low Average ability.  What this means is that he is a really smart kid but it takes him longer than most of his class to "get there".  When it takes that long for him to really understand the material it creates a level of self doubt and ultimately a feeling of being stupid.  It is heartbreaking for a mother to hear her son say he is stupid.  I have worked with him for years in building a confident child but when he is in school and looks around at the other kids who are working steadily, knowing what they are doing and he is unsure of himself, that is the moment where he feels stupid.  This years IEP meeting was all about how we can change that for him.  He is smart so he belongs in the general education classroom but with an inclass resource teacher to give him the extra help as he needs is TO HELP HIM SUCCEED!  This years teachers have noticed his ability and are actively working with me to implement strategies that best fit his personal needs.  In the end that is what a parent really wants.  Teachers who see how wonderful their child is and want to bring out the best in them.

Coming soon will be Lucas' IEP.  Our journey with Lucas has been tough.  He is my special needs child.  Next month he will be turning 4!  We have been receiving services for him for the past 2 years.  In my gut I knew he had a speech issue when he was 18 months old because he was not even able to babble.  When I had Early Intervention come in to evaluate him I felt horrible because I could not brag about his accomplishments.  At the end of the evaluation they asked me a question "Does he make any other sounds that he did not make while we were here?"  I stared blankly at them because, well, besides screaming and crying and the occasional "Dada" he only coo'd.  You know what I mean by coo'ing.  The constant Oooo or AAaaa sounds.  Lucas would point to things he wanted but I learned that his pointing was even delayed because he couldn't isolate one finger, Lucas pointed with his whole hand.  I have learned so much from our early intervention specialists.  Lucas had qualified for both Developmental Intervention and Speech Therapy.  Those women changed my life!  I thank God that they came into my life every day.  They gave me the foundation on how I need to proceed with Lucas' life.  Lucas has come a long way in the past two years.  We have come from him only saying sounds and words while in therapy to learning to be able to use them in play.  We have built a vocabulary and he is now at 5-6 word sentences!  The hard part is that most of it is still unintelligible, I can understand him most of the time though so I act as translator within our family.  What is fun is that Gabriel is finally beginning to understand his brother so sometimes when I am struggling to understand what Lucas is saying Gabe can step in and tell me what his brother wants.  As difficult as it may seem we are actually enjoying Lucas' new ability to talk to us.  I love having conversations with my little guy!  We do need to explore some other area's that he is showing a developmental delay in.  He is currently being evaluated by the school district and those reports will be reviewed during his Annual IEP.  We are lucky that Lucas is in a great preschool program that has teachers whose specialties are in special education.  Honestly, I have learned to take everything in stride when it comes to Lucas and his abilities.  The more I learn about his Apraxia and other issues the better I get to know my own child.  He is not such a mystery anymore.  The hardest lesson I had to learn was to stop looking at the milestone charts because he was so far off that it was discouraging. Now, I just take each victory and each set back in stride with the knowledge that together we will get there.  Lucas is not in this battle alone.  I am with him each step of the way and I will be his strongest advocate always.

With all of this going on it is easy to loose sight of yourself and put your marriage last.  That is why Valentines Day was so important.  It was a chance for us to just be together.  Last week I also had the opportunity to sing in a Tribute Concert for my old high school choir teacher.  That was a spiritually rewarding experience, saying Thank You to a teacher who gave everything she had to her craft but now, while she is fighting for her life I can help renew her spirit to fight.  I am thankful that I could be a small part of that event.  On a daily basis I keep a focus on my health and on my childrens education.  I do my best with my home but honestly this past few weeks have proven to be too hard for me to do much of anything.  I cannot wait for Spring.  The end of snow.  The end of freezing cold.  The beginning of flowers and sunshine!  Then after Spring comes the wonderful healing warmth of Summer.  It has been a long cold winter and I am sick of it.  I am dreaming of the warmer days when I can spend more days pain free and doing the things I really love.

Robo Mom!

Leo gave me the nickname Robo Mom a long time ago.  It is our attempt at laughing off the seriousness that faces us each day.  Robo Mom, Batteries Included, we just need to laugh it off.  Who wants to constantly think about how important that picture above is?  The picture above is my back from 2012, my old SCS system.  The tiny dashes along the spinal cord are the electrodes and the big thing by the hip is my battery.  This x ray was taken before my last two surgeries back in March of 2012.  It shows that the electrodes were slightly, like a hairs width, off center and the cord was slightly bent.  What did that mean? It meant my electrodes were not stimulating my nervous system, instead they were stimulating my back muscles.  Imagine putting your finger in the electric socket and that is what my back felt like.  It all happened in one swift moment that had me clinging to the dinning room table with tears running down my face as I was incapable of moving to turn the damned thing off.  What does Robo Mom mean? It means I need this piece of electronics to work correctly so I can take care of my family.

Robo Mom.  Yes it is a joke to break the severity of my situation.  I have never really been hard core with telling people about my RSD, yes I write in this blog but my awareness campaigns are actually soft compared to how hard this disease really is to live with.  Two years ago when the SCS stopped working correctly it felt like our world fell apart.  Robo Mom couldn't operate at her normal speeds.  I became more like "couch mom" or "in bed all day Mom".  It was rough on everyone.  My pain was so bad that I could barely wear pants because of the pain and my leg swelled to twice it's size while being red yet freezing cold.  I was doing my best to hold it all together while taking care of a toddler that had a speech disorder.  My oldest sort of fell through the cracks, we are ashamed to say.  He was at an age of independence and we expected more from him.  Long story short the emotional weight was too much for him and his school work took the hit.  Then last year he was identified as having a learning disability.  It was a tough time to get through.

Honestly it feels like the last two years have been beyond difficult.  These two years have felt more like a lifetime but some how we are still standing.   As a family we are tighter than ever.  Robo Mom is back on track.  I will always have RSD, that is a fact of my life.  I will have bad days, weeks even months yet I will always keeping moving forward.  I need to take precautions to make sure my SCS does not get broken again which is another fact.  There are a lot of things my RSD can take away from or make harder for me. Still, I am a powerhouse of a Mother, that is a fact!  My children have special needs that do not wait for Mommy's pain to get better.  I have to be strong even when my pain is overwhelming.  Some things can slide by in life, like dishes and laundry but my children deserve a Mom that is there to advocate for them.

I have many people in my life that do not really know what I live with.  That is my fault as I do not broadcast "Hey I have a physical disability!" when I meet people.  Many years ago I did work at hiding my disability.  People are not always supportive when they hear about it.  Since I have started writing my blog I have noticed that more people are affected when they are able to see the facts.  Mostly I blog to help spread awareness and to help others in their early years of RSD feel less alone in their diagnosis.  Still, you cannot dispute the severity of this picture.  Who would want this in their back, next to their spinal cord?  Who would be okay with a surgeon removing bone from the spinal cord just so this device can be fit into it?  How many people would welcome a battery that is implanted in a pocket of tissue at their hip?  Honestly you would have to be in severe pain to consider a surgery like this.  Then to have it done repeatedly as it breaks and causes pain!  At the same time you are a Mom.  All due respect to Dad's but Mom's have more responsibility with their child's day to day life.  Add to it I am a Mom with a child who has special needs and a child who during this process was identified as having a learning disability.  These are children and as children their lives revolve around Mommy.  If Mommy is not well then the children are affected.  Mom then has to make sure her children are protected.  Yes, that is a lot of weight!  Robo Mom can handle it all!!!  I believe most Mom's can do what I do they just never have been tested yet.  I do not like to think I really do anything spectacular.  Yes I have the SCS in my body but at my core I am just a Mom.  I am just a Mom who advocates for the best her children deserve from herself and others.  Sometimes some people need to see the hard core truth like the picture above to soak in the reality.  It is nothing extraordinary because it is my ordinary life.

And it continues

Well, it has been exactly one week since my latest flare up began.  I don't know why but this one has really kicked my a**.  I am blessed that Leo has let me spend so much time in bed while he takes care of the kids.  We have eaten take out all week but tonight Leo is treating us to a home cooked meal, one of the only things he makes Steaks on the grill!  Yes, it is freezing outside with 18 degrees and with the wind chill making it feel like 9 degrees.  He might be crazy but he is a man in love with his wife.  Thank you God!  Steak is not my favorite meal but it is so much better than pizza.  I am really a lucky woman because this steak dinner includes pink roses.
I told Leo that I miss cooking, I was planning on making a chili because it is comforting, cozy and super easy considering I can sit down through most of it!  He wants me to just relax a bit longer.  Leo said I can get back into the kitchen on Monday.  Honestly, me leg is killing me but I might not last till Monday, I want to get back behind my stove asap.

As a Mother it is hard spending so much time in bed away from my children.  I am blessed that they find it equally as hard so they tend to come in and cuddle me or tell me stories or simply to give me some love.  Lucas is finally getting the hint that Mommy has a booboo leg.  Gabe still gets worried if I spend too much time in bed but we have learned to cut the tension so he doesn't put too much thought into it.  If I am going to be 100% honest I think my flares are hardest on Leo because he simply misses the woman he married.  I know that when a big flare hits I am not myself, who could be when they are in that much pain?  Leo picks up the slack around the house and still keeps up with his job.  He takes care of me, staying strong for me so I can take the time I need till my flare subsides and I can get back to our normal life.  Leo is an amazing man.
I slept a lot this week and when I wasn't sleeping I was laying down resting.  Being in pain wipes out all of my energies.  Today was the first day I felt somewhat human and so I took advantage.  Even though it is freezing cold outside I went out to Lucas' school to sit in on his Speech Therapy session.  I had some questions but mostly I just enjoy participating.  I love to hear how his SLP is able to get him to produce a clear T sound.  His SLP and I don't care that it is only made during the isolation of the speech room at this time, the fact is that he is learning to use it so eventually he will be able to make the sound in conversational speech.  I paid a small price for going out this afternoon but considering the reward of hearing Lucas clearly say "Hat, Mat, Cat" was worth it!

So our steak dinner has taken a turn from being cooked outside to inside on the cast iron skillets.  Why?  The gas grill's line is frozen and will not ignite.  Now the house is filled with the aroma of steaks.  Leo built a fire to help keep me warm and I am being entertained by the boys.  Yes I am in pain but life really doesn't get much better than this.  I am filled with their love and support.  Life isn't always this easy but if it was then I wouldn't be able to enjoy this night so much.  I might wish I was the one in the kitchen cooking but it is a treat to have a home cooked meal prepared for me.  I am a lucky woman even though my pain continues.

And then it happens

Yesterday I hit an exhaustion slump just before 3pm.  I tried to convince Lucas to lay down with me and take a nap. Nope, he wasn't tired he wanted to play.   I reached a compromise.  Let Mommy lay down on the couch to rest while you watch tv and play, just don't leave this room.  When Gabe came home he stayed downstairs to help keep an eye on Lucas.  Mommy's have this incredible super power that they can close their eyes, rest, and still talk with their kids!  When Leo came home from work he sent me to bed.  Thank you!  I woke up around 5:30 and went downstairs to start making dinner.  I was hungry for my Mom's Country Fried Steaks with Mashed Potatoes and I chose peas as the veggie because believe it or not the boys like their peas!  I love making country fried steaks because I get to pound the hell out of them, taking out any stressful frustrations or just getting a fun workout.  As you know I simply love being in my kitchen and cooking, I have control in this small space of my life.  I put on my country music radio station and I dance a little while cooking.

Dinner was ready and I started serving plates, cutting up the kids food first.  We were having a tv dinner since it was Friday night and wanted to watch a family movie.  In the living room we have a small kiddie table.  I tell the boys that dinner is ready and they should get their drinks.  I bring Lucas' plate in first and walk back to the kitchen to prepare Gabe's plate.  I shout out the last warning that dinner is ready and take out Gabe's plate.  As I begin to walk back to the kitchen I feel it.  My leg is beginning to hurt.  I don't even make it back to the kitchen.  I tell Leo and he states the obvious, turn on the stimulator.  Now I am thinking that I had hit that exhaustion slump because the flair was already beginning to creep it's way into my leg.  Damn!

Now it is morning.  Leo let me sleep in and he brought me my coffee.  He even had the kids keep quiet to let me sleep.  I tell you he is wonderful.  Leo has to work today.  My leg is still flaring and now I have a day with the kids and a kitchen to clean.  Honestly, I have to dig deep for the energy to do it all.  I don't have the luxury today to play couch potato today.  This flair also messes with our plans for today and possibly the whole weekend.  I have a confession to make.  We have not yet finished putting away our Christmas decorations.  Today was supposed to be the day to get it done.  This weekend also happens to be a 3 day weekend for the boys so we were thinking about taking them to see a movie, do a little family bonding time.  The catch though was that they had to help clean up the house.  If I can't move around much then we cannot do much.  Depending on my energy level after cleaning the kitchen I might be able to just power through and do some family activities or I might have spent all the energy I could muster.

I think tonight is going to be a take out type of night.  It is snowing and Leo is out there working.  My leg is hurting and I have to clean the kitchen.  We don't have enough left overs to just eat from the fridge and I do not see myself being able to cook tonight.  My leg hurting has a tendency to mess with all our plans, even the simple day to day stuff.